Shelly_DBS

The tweaking and the frustration continues...

2009-05-13T16:48:00.000-07:00

Shelly's had her second programming visit now. After mucking around some we ended up leaving the settings as they were and are trying a slightly different medication schedule. The dyskinesia is in better shape now but the tremors and freezing are still issues for some of the day. The darn problem is that while the dyskinesia is less disruptive from an ability to do things standpoint, it's not a good thing physically.....very stressful on the body and the joints. Tremors and freezing aren't as stressful physically (relatively speaking of course) but they're awfully frustrating to Shelly since she has trouble getting around and doing things. As she says often....."if it's not one thing then it's the other....".

I think it's going to take a few months to figure things out....but even then there's really no such thing as "figuring it out"...the predictable unpredictability is in the very nature of the beast.....ultimately it comes down to dealing with it one day at a time and being hopeful about longer periods of stability....but without any strong expectations....easy for me to say....

Remember....never leapfrog a unicorn.....you heard it here first folks.....peace....easy...

And she's all lit up now...

2009-04-26T16:57:00.000-07:00

Programming happened as scheduled on Wed. Took 3.5 hours and Shelly was a little tired at the end of it but much less so than the long programming sessions in the past. The electrons are flowing and the sub-thalamic nucleus is presumably being bathed in the fields emanating from the electrodes.....

Left brain....electrode 2...minus....monopolar....3.0 volts...60 microsecond pulse width...185 Hz
Right brain....electrode 6...minus...monopolar...3.0 volts...90 microsecond pulse width....185 Hz

I waited a few days to write this post because I've learned that it takes a few days or longer for the brain to get "used" to the stimulation and settle into some kind of pattern. The first day after programming was actually very good....no tremors or freezing. The next morning there was very high dyskinesia....remember that Shelly's meds had been notched up significantly in the last several months and now with the stimulation turned on it is very likely that she's being over-stimulated....but you can't just cut down the medication all of a sudden....one has to work it down gradually and play with the level of stimulation to find the the right operating point. It's tricky....it's all empirical....and this is going to take several days. Over the last couple of days we've been notching down the medication levels to figure out what happens. During the second half of yesterday the tremors seemed to pick up a little and so we notched the meds back up a bit last night. Today has been a decent day so far even though there has been some tremors.

But overall things are definitely looking up....it's pretty clear that the stimulation does work to control/mitigate the movement symptoms. Shelly's been driving around all over the place by herself.....the "freezing" is significantly reduced....we've eliminated the 2 a.m. medication dose so no more need to disrupt the night's sleep....wooohooooo!!...and at this point we've completely stopped the anti-anxiety medication (Clonazepam) and another tremor medication (Parsitan)....I'm hopeful that we can keep it this way.

Next checkup coming up in a couple of weeks.....in the meantime we keep tweaking and watching....and more importantly enjoying all the good moments. Other than some very occasional bouts of frustration and despair, Shelly has and continues to be the poster child for faith, resolve, patience and a positive attitude.

I really hope this is the beginning of a long period of stability....God knows she deserves it....

And we's a back home..

2009-04-18T18:08:00.000-07:00

We had wheelchairs at both ends.....a lot less drama than the last time we did this....good to be home!

Heading back home today...

2009-04-18T00:05:00.000-07:00

Our flight to SEA is scheduled to depart just before 2 p.m. We're both looking forward to being back home again.....and I'm certainly looking forward to that round of golf on Sunday morning.

To steal a phrase from Rosemary, Shelly had a good "retail therapy" day yesterday. We drove down to the outlet mall at Gilroy and I can safely declare that Shelly in a matter of hours successfully stimulated the CA economy all by her lonesome.

She had a relatively decent day with the evening hours being a little tougher with the tremors.....a yellow day with occasional streaks of green. Back in December of last year, Apr. 2009 seemed like it would never get here. It's come and gone now and while this thing is never quite "done", it sure feels good to have this phase of the journey behind us and begin the next with re-programming on Wed.

Be seein' ya soon......

It's just not easy.....

2009-04-16T05:39:00.000-07:00

4 a.m.

I really can't take any more of this .....Shelly's sobs quietly.

Sshhhh.....it'll all be fine baby....I say....easy for me to say....but then what else can one really say?

While Shelly had a good "surgical" day yesterday, she didn't have a very good tremor day. Tremors were a little stronger and more unpredictable than usual. Last night and this morning have also been difficult. Parkinson's has its own unique way off reminding you never to get too comfortable or take anything for granted. It's a constant battle with moments that test one's resolve....it tested mine and I'm not even the one that has PD.

It's a lot to ask of any person....even Shelly....whose courage, resolve and attitude are unmatched.

The moment has passed though.....Shelly got up and walked to the kitchen to make some tea and finish watching an Indian movie called Dharm. She mumbled something about making me some too...lucky me...

And so the battle goes....

Stitches came out today...

2009-04-15T15:10:00.000-07:00

It's a glorious day today in the Bay area....a tad windy but lovely nonetheless. We headed down to UCSF for Shelly's noon appointment a bit early and stopped on the way at Costco to pick up some flowers for Monica...Shelly's nurse...only Shelly could think about stuff like this and she's the one who had surgery....pretty darn amazing! We headed up to the 8th floor to the neurosurgery section and checked in around 1145. A couple of minutes later Monica came out and took us in to get the stitches removed. She was blown away that Shelly brought her flowers. She then proceeded to remove the dressing behind Shelly's ear....there's no good way to do this other than to just yank it off....pulls the hair....but Shelly did fine and in fact said that it didn't hurt that much. The incision had healed beautifully and a few snips later with scissors the stitches were out....and that too without a squeak from Shelly :). The dressing was also removed from her chest incision but the steri strips will stay on until they curl up and come off on their own in another week or so. So 10 mins after we checked in we were done and on our way. And it wasn't even noon yet.....now is that cool or what?

So to celebrate we walked down to Arizmendi Bakery in inner Sunset and had some bread sticks, feshly baked chocolate chip cookies and a latte. Followed that with a trip to Marshall's to buy a scarf to cover that partial mohawk....no need to cover it though...it looks beautiful.

Next stop is the programming session in Seattle next Wednesday. It's been a long wait and a frustrating journey but at least things are beginning to look up a bit.

Later gang....peace....easy.

All continues to be well this morning.....

2009-04-11T08:28:00.000-07:00

Shelly had an active day yesterday. We went for a drive and believe it or not she actually did some shopping at Nordstrom Rack. Surgery furgery....pshaw! She continues to have pain on and off at the chest incision area but is managing that with Tylenol. Local friends brought us some great food for dinner....combine that with what Shelly had cooked the day we arrived and we had a big feast last night....7 of us for dinner. The apartment is working out well...very convenient and a homey feeling....also includes a garage to park your car....a HUGE deal in SF.

peace....easy...

All is well this morning...

2009-04-10T10:26:00.000-07:00

Shelly slept well last night.....pain in the incisions are under control with the use of only Tylenol and without use of Vicodin or related drugs....good thing. She's walking about and abusing me as normal....another good sign. The fever/infection watch continues.....fingers crossed. Keep sending them good vibes....

We're back in the apartment...

2009-04-09T16:27:00.000-07:00

Shelly did a great job of recovering in the recovery room.....where else would one recover? huh? She's still a little woozy and has a bit of nausea but did manage to put away a decent lunch....poor thing was without food and water since midnight....she's resting now......a fair amount of pain at the incision sites in the head and chest....but doing a great job of putting up with it.

Now all fingers and toes are crossed that the incisions recover well without any signs of infection....and then we can get on to re-programming when we get back to SEA. All the calls and messages and good wishes from all of you are very much appreciated. Thanks for being there.....

Surgery's done..

2009-04-09T12:15:00.000-07:00

Dr. Starr just came out and said all went well and that he frevently hopes that he doesn't have to see her for a long long time.....a big Amen to that. She'll be in recovery for an hour or so before we can see her. Stay tuned.....

What's next....you ask....

2009-04-09T11:55:00.000-07:00

- Shelly comes out of surgery in the next hour sometime
- She'll be in recovery for at least a couple of hours
- Once she feels good enough she'll be discharged and we'll return to the rented apartment
- We'll stay in the SF area till the 18th
- We'll monitor the incision sites (behind the ear and in the chest) to make sure there are no signs of infection
- Assuming all is well the stitches will be removed probably on the 17th
- We head back home on the 18th
- The stimulator and the wires would all have been inserted by now but the system will not be turned on till we return home and have it re-programmed from scratch. A couple of reasons for this....one, Shelly's medication levels are elevated now and turning the stimulator on could effectively result in "over medication/stimulation". The medication levels will need to be titrated down gradually. Two, the programmer in Seattle, Sierra Farris is the best there is when it comes to programming and she has a lot of experience with Shelly's particular situation.
- Re-programming appointment is on the 22nd of April

Assuming all goes to plan, Shelly should be back in business by the end of April......

Being wheeled in now....

2009-04-09T10:12:00.001-07:00

Dr Starr and the anesthesiologist Dr Rachel Mckay did their preop
checks. All is well. We chatted briefly about Dr Starr's dog and cats.
He's also going to have a baby in the next week of so. ....you heard
it here first. :)

She should me out in about two and a half hours.

Sent from my iPhone

In preop now

2009-04-09T09:33:00.001-07:00

Shelly decked out in a beautiful backless gown. IV port in after a
couple of attempts....pretty much par foe the course. Waiting for Dr.
Starr who is currently completing his previous case. Shelly is
napping. General hubub of preop area....there's some radio station
playing faintly somewhere.

I expect she'll go in around 10.

Sent from my iPhone

Off to UCSF in another 45 minutes...

2009-04-09T07:02:00.000-07:00

Shelly rested well last night....she's had her anti-bacterial scrub and ready to go. Spirits seem good. More later....

It's a new dawn tomorrow...

2009-04-08T22:46:00.000-07:00

With many apologies to all of you for being tardy in keeping the blog updated.....

A quick recap is in order. Shelly had her right brain lead replaced on Dec. 16 of last year (2008) after we discovered there was a break in the lead. All seemed to be going well for a week or so but then there were signs of a persistent infection that had developed in the lead connector hardware and Shelly had to go back to UCSF on new year's eve to have the lead extension and stimulator hardware removed in order to address the infection. She was then on a 4 week regimen of IV antibiotics followed by a waiting period of 8 weeks to ensure that the infection was not dormant somewhere. We cam down to to SFO for a checkup on Mar. 11 and Dr. Starr declared her in good shape to have her hardware re-installed on Apr. 9.....which brings us to today...

We're in a rented apartment in SFO on 24th and Fair Oaks....came down this afternoon from Seattle along with Susan who has and is being so incredibly kind and generous in coming down with us to help Shelly and be with her for her surgery. Shelly has been nervous about this surgery.....it's really not a surprise given all the trials and tribulations she has faced in the recent past.....she's frustrated and fed up....and who wouldn't be....just about every adverse event that could occur with DBS has occurred with Shelly....it just doesn't seem fair. But tomorrow will be here very shortly and Shelly can once again resume her journey to a more comfortable daily quality of life.

Tomorrow's surgery will be an out-patient one. We check in at 8:45 a.m. and surgery is expected to start around 10...expect to be complete in a couple of hours.....then recovery...and discharge later in the afternoon assuming she's up to it.

She's in bed beside me...snoring lightly....I feel that tension that she feels.....there's not much I can do at this point other than to get her through tomorrow as quickly as possible and then on to recovery and re-programming.

Hang in there Shelly.....we'll get through this one too....very soon.....

More updates tomorrow.....peace......easy....

It's been a rare GREEN afternoon and evening...

2009-01-15T21:44:00.000-08:00

....after a very rough stretch....and even around noon today it looked like the verdict was going to remain Red...it was a real pleasant sight to come home from work and find Shelly flitting around the kitchen. Made me smile....the little wins mean a lot these days.

Shelly's just moved into the yellow zone as she goes to bed. I wish her a slumber-filled night.

On the medical front Shelly had an appointment this past Monday with her neuro. Even her neuro was somewhat taken aback by her condition post hardware removal. What we're trying now is increasing doses of her base medications to find the most comfortable operating point. As of today we've increased Sinemet to 1 and 1/2 tablet 6 times a day instead of 1 tablet. Requip stays at 1mg 6 times a day. We've added 0.25mg Clonazepam 3 times during the day and 0.5mg at bedtime. This should help with reduction of anxiety and also help with sleep. There's no clear evidence yet that this is significantly improving things....we'll just have to continue to try different combinations till we find a functional yet tolerable (from a side effect perspective) dosage level.

The daily IV antibiotic regimen has been going fine. It only takes about 5 minutes every morning. The difficult part about all this is that when the meds are not working Shelly is essentially incapacitated. All she can do is lie down and try to somehow get her body in a position so she can tolerate the tremors....tough tough tough.....it can be very frustrating and drive her to tears occasionally. It's also so darn unpredictable...it's a pure guess how a 3 hour segment of the day is going to go. It can all red or all green or somewhere in the middle.

I'm ever so grateful that Shelly's parents live with us and can be with her during the day. I'm not sure how I'd manage without them. I'm also so glad that all of you take the time to visit with her whether its during the raging reds spells or those most welcome grateful green moments......I know she really cherishes the time with you....keep it comin'....

peace.....easy.....

Red and Green....and no, I'm not talking about Christmas...

2009-01-10T22:00:00.000-08:00

I'm a talkin' about a scale to describe Shelly's daily battle. See this post back in 2005 for details.

For those of you who have known Shelly prior to Dec. 2005 when she had her original DBS, Shelly's condition now is very similar in nature to what it was then...only a bit worse...since the disease itself has progressed for an additional 3 years now. Ever since about Jan. 4, Shelly's day has been about 70% Red. During the day Shelly takes her medications approximately every 3 hours starting at 0600. This means that on the average in any given 3 hour period Shelly is tremoring very strongly and essentially incapacitated for about 2 hours. On occasion she will be red throughout the period. It's very difficult for her and she'll have to deal with this for the next 3 months.....early April is the earliest that Dr. Starr expects she'll be ready for the hardware to be re-inserted.

On the good news side, it is pretty clear that DBS does work. In spite of having had every "small" risk come to pass - broken lead extension, broken lead and infection - I'm thankful that DBS is an option for Shelly and I know that she is very thankful too. DBS has been a tough and unfortunate journey....but the alternative is tons worse.

Shelly's going to need a lot of support and encouragement from all of us. She's going to need a lot of resolve and determination to put up with her daily trials.

Together we'll make sure she wins. I am so glad all of you out there are on our side.

Cheers.....peace......easy......

Escape from Alcatraz...

2009-01-10T20:57:00.000-08:00

OK so it wasn't Alcatraz really.....but UCSF isn't that far from it either...

So why haven't you updated the blog the last few days....asked a friend this morning.
'cuz....got a problem with that....huh?

Just kidding....just didn't get around to it....must've had bloggers block....actually I was just plain tired.

We got out of UCSF at the very first opportunity last Wed the 7th. Spending 24 hours a day in a hospital room just isn't that exciting you know. Shelly's stitches were removed that morning around 10 a.m. by Monica Volz who is Dr. Starr's clinical nurse practitioner...an NP. We then waited for Shelly's tremors to settle and as soon as it lessened somewhere around 12:25 p.m. we were off. Our flight was scheduled for later that night at 9 p.m. We decided to go on an earlier flight...standby....there were plenty of open seats. We headed down to SFO and by the time we got there Shelly's tremors had picked up again and were very strong. I had to return the rental car first, but there was no way that Shelly was going to be able to walk to the AirTrain. So I parked in one of Hertz' slots, left Shelly in the car and had to go to the 4th floor of the car rental center to locate Annette of Hertz whom Akshay had called while we were driving. She asked me to head back down and ask the Hertz Gold desk there to drop us at the terminal....tell them Annette said so...she said. I did. And they did. Nice of them. But that was the easy part...

We unloaded Shelly and the luggage on the curbside at SFO international terminal. Shelly isn't able to walk. So how do I get her inside? I made her sit on one of the suitcases and hold on to the post of a sign that was curbside. Poor thing was shaking quite strongly....and conscious of all the folks around her....which made it even worse. I then ran inside to the Virgin America counter and told them I needed a wheel chair. The lady at the counter was very helpful. She called the wheelchair bureaucrats who told her it would take at least 15 minutes to get one. So out I ran to the curbside and sat with Shelly....still shaking a lot. On the way out I grabbed a luggage cart and had stacked our bags on it and asked Shelly to sit on the bag. After 10 mins. I decided that this was no way to wait.....and decided to wheel Shelly into the terminal on the baggage cart. If you think steering a supermarket cart with a bad wheel is bad.....you ain't seen nothing yet. We weaved our way to the door....it was quite the sight...and just as we entered the guy with the wheelchair was coming out. Phew!

The wheelchair shook all the way to the counter....we checked in and headed off to security. We asked for a private screening to lesson the stress on Shelly. Well the TSA sent two women to do the pat down. They were really nice but they decided to use this opportunity to train one of the women who was a rookie. Bad idea....she had no idea what to do....Shelly tremors away meanwhile.....finally the "trainer" decided to skip the training and do the pat down herself. Thank the Lord for small mercies.....we made our way to the gate.....Shelly's tremors continue unabated. She's very uncomfortable....we find a corner and hang out waiting for the flight.

The gate staff were very very helpful indeed. We pre-boarded....the wheelchair guy took us down the ramp and then transferred Shelly to an "aisle" wheelchair and we finally got her to her seat. We had reserved a whole row for ourselves. By the time the flight departed, Shelly's meds had kicked in just a bit and the flight went by in relative comfort...the key word here being "relative". It really is all relative.

Ratika and Akshay and Susan met us at the airport. Even though we had requested a wheelchair, there was none to be found when we landed. Fortunately Shelly was able to walk slowly to the car.....and after 30 mins. on very rainy and occasionally flooded streets....we were HOME. Quite a relief...

We had escaped Alcatraz....but Shelly's trials and tribulations are destined to continue for a while.

...and we're going to have to put up with a bumpy ride for a few months..

2009-01-05T17:01:00.000-08:00

Shelly had another real tough night with pretty much constant and high intensity tremors. Her tremors didn't settle much most of today either though the intensity wasn't as high as last night. Around 4:30 p.m., however, it finally settled and we went for a nice walk around the corridors....it was nice to see her walk without any tremors....that's the nature of this beast...one can go from utter helplessness and deep frustration to normalcy and vice versa in a matter of minutes.

Dr. Starr dropped by before Shelly went for her walk. He changed her dressing and said the incisions were healing nicely. Shelly doesn't have any pain around the incisions either....a good sign that there's no fluid collecting there. After consulting with the infectious diseases team he's decided to go with an IV antibiotic called ceftriaxone that is very effective in taking care of staph epidermidis. The other plus is that it only has to be administered once every 24 hours. The case worker here is arranging for the home health care agency in Seattle to set up the IV at home. That'll happen on Thursday after we're back. The stitches should come off on Wed morning and we should be headed home Wed night....destiny willing.....now that's going to be sweeeeeeet.

Shelly is sleeping as I write this. She had a good dinner and then just fell asleep....must be pooped....continuous tremors can really suck the energy out of her. Here's wishing her a restful night.

The rest of this journey looks like this...
- IV antibiotics plus another oral antibiotic for the next 4 weeks
- come back to see Dr. Starr in early March to assess how things are going
- assuming all is well the hardware will be re-implanted in early April...it would be an out-patient procedure

The next 3 months are going to be tough.....it's going to take all of Shelly's determination and courage to get through it...there'll be ups and downs...no doubt.....but....Shelly's up to it too....NO DOUBT.

We're so ready to get back home....peace....easy...

The road is still a bumpy one...

2009-01-04T19:51:00.000-08:00

Shelly had a reall good day yesterday....sitting up, walking around the corridors, eating well, watching TV...and I was feeling pretty good about things when I left around 9:30 p.m. to go get some sleep at my nephew's house really while Ratika spent the night with Shelly. I got home and got comfortable in bed and had just flipped the light off....ready for some deep slumber. The phone rings...it's about 11:30 p.m....it's Ratika...she sounds a little scared though she's trying to also sound brave at the same time. Shelly's started having some really strong tremors that don't seem to want to stop. Shelly doesn't know what to do, neither does Ratika....and neither does the RN. The RN decides to give her some strong pain medicine (Dilaudid) which it turns out is not relevant as Shelly is not having pain and Dilaudid is a really strong opioid. She also gives Shelly some more Requip (dopamine agonist)...which is probably helpful.

I quickly change and head back to the hospital. Shelly is shaking a lot....she's in a great deal of discomfort which in turn has increased her anxiety...which further exacerbates her tremors...it can be a vicious cycle. The RN has paged the neurosurgery resident who's in the OR helping with an emergency surgery and his initial advice to the RN is....ask them (i.e. us) to do what they would have done to manage this situation prior to the first DBS surgery back in 2005. Not that helpful since we never really had to deal with this kind of situation back then. I decide to do nothing other than to sit next to her, talk to her softly without any stress in my voice and hold her hands or feet or leg down as needed. I'm hoping that she'll drift off to sleep...doesn't happen. She's moaning softly in discomfort....I feel very uncomfortable she says....I don't really know what to do other than just be with her till the discomfort passes. Time moves very slowly....I'm very very sleepy and tired but sleep is not an option right now. I ask Ratika to get some sleep on the pull out couch/bed and she does....reluctantly....she wants me to sleep too....but she's pooped and worried.

It's probably 2:30 or 3:00 a.m.....the neuro surgery resident comes by and apologizes that he couldn't get here earlier due to the surgery. We discuss Shelly's situation....she's seems a little calmer and sleepier at this point. He indicated that most likely the increased tremor is due to her brain and body finally coming around to accepting that the stimulation is no longer there. Turning off stimulation doesn't immediately cause old symptoms to return...it can take a few days....it would appear that for Shelly the time had come a few hours ago. I think we were all caught by surprise by the intensity of the response...we'd been feeling good (too good and too early in hindsight) about the fact that Shelly's symptoms didn't seem too bad even after the stimulator had been removed. This had been something that had been bugging me earlier but I didn't listen to my own concerns....it's all about managing one's expectations as I've noted many times in earlier posts....I had neglected to heed my own advice....it's really difficult sometimes to stay positive and manage one's expectations.

Somehow made it through the night in the chair. 6 a.m. came around and it was time for Shelly's meds. The tremors settled down in about 45 mins and she slept well. The rest of the day went pretty well too....she ate well....walked around....visited with friends and family who dropped by....email....TV...phone...the works. Ratika headed out to the airport around 7:30 p.m. and as of this writing is still unsure about making it to Seattle due to the snow there....that's all we need...more snow. Shelly's tremors were a little less under control starting with the 7 p.m. meds that didn't seem to be as effective but she did get some sleep. The nurse just came in to give her the 10 p.m. dose....she's trying to sleep again....not feeling very comfortable....but not like last night....it's all relative....little wins are good.

I'm going to try and get some sleep too....but who knows what destiny holds in store for us tonight....

later people....peace....easy...

"Sorry-for-the-delay" update

2009-01-02T21:08:00.000-08:00

Apologies for not posting an update yesterday...I was a little beat yesterday...hanging around in a hospital room all day can start to be a little fatiguing..

They installed the PICC line yesterday in her upper left arm. That's a Peripherally Inserted Central Catheter for the delivery of IV antibiotics. For Shelly they used the basilic vein which is a large superficial (i.e. shallow) vein and therefore easier to access. The tech uses ultrasound to find the vein....she glopped on the gooey stuff....ran the probe over it...you've got a good one....she declared with a satisfied look.....much to Shelly's delight....for general IV's and blood draws Shelly's veins are notoriously hard to find and she usually ends up getting stuck multiple times before they're successful. To insert a PICC line they first insert a wire (I think it's called an "introducer") to the required length, then thread the PICC line over this wire and pull the wire out. It can be a little painful when they have to make the initial incision and Shelly wailed away like a little baby....OK she didn't really....just a few well timed screeches of pain and a declaration that she'd rather leave this world than have to put up with this. It was over quickly....and a subsequent x-ray confirmed that the line was positioned correctly in the superior vena cava in the heart. With this in place they could now remove the other IV connections.

Shelly had a decent day yesterday....she got a little uncomfortable in the evening as she has in the past few days....some nausea....some headache....general fedupness....crap load of antibiotics and other drugs....makes one sick....heck just writing about it makes me sick....

Akshay returned home yesterday morning and Ratika came in last night. She spent the night with Shelly and I took the much needed break to go to my nephew's house in Pacifica and get some rest and more importantly a hot shower...oh...and a shave...felt human again....

Shelly had a bit of a fitful night....maybe slept for about 3 hours...even so she looked pretty good this morning and as of this writing has managed to eat a decent breakfast and lunch and keep it down....let's hope it keeps up through the evening. On my way in to the hospital this morning I had stopped at a Safeway to buy a few food things....as I was pondering which brand of cracker to get my phone rings and a voice says

Mr. Krishnamurty, this is Dr. Starr...I wanted to give you an update on Shelly...is this a good time for you?
Any time you want to talk to me is a good time for me ....I thought...I was impressed that he'd take the time to call me personally on a Saturday morning...

He indicated that of the 3 cultures they'd taken - 2 from behind the ear area and 1 from the chest area where the stimulator was - the 2 from the behind the ear area had grown organisms...staph epidermidis....which occurs commonly on our skin. The culture from the chest area had not grown any organisms yet. This is all favorable news....staph epidermidis is relatively speaking less aggressive than staph aureus which aparently tends to "travel" more and colonize as a bio-film on implanted hardware. This doesn't guarantee that the staph has not migrated to the brain leads but based on everything we know at this point it likely has not (key word here is "likely")...and that's good. The antibiotic course is still expected to take 4 weeks and they'll also want her to continue with the additional oral antibiotic called Rifampan.

The neuro surgery resident, Dr. Bloch, came by to look at the incision....he ripped off the old one....said that the incision looked good....and changed the dressing....he did a real horrible job of changing the dressing...must have been a bad-dressing-day for him. They put this clear film over the no-stick pad...and he didn't trim this correctly and stuck it all over Shell'y hair...annoying Shelly to no end. We're going to have the nurse change it out if we can.

Shelly is either sleering or snoping at the moment, can't really tell which.....Ratika is dozing on the pull out couch/bed......there are a few local SFO friends dropping by to visit in a bit....

it's 1517.....and you're all caught up.....

p.s. forgot to mention that Ratika and I went down to Arizmendi's Bakery on 9th between Judah and Irving and had their delicious pizza of the day....which today was spinach, feta and kalamata olives....yum yum. You've got to check it out sometime when you're here.

peace...easy...

The view from 805L

2009-01-01T13:45:00.000-08:00

OK so I just wanted to create a meaningless post........why?....because I can...hehe...

Jan. 1 2009 @ UCSF

2009-01-01T12:23:00.000-08:00

Calendar is part of the eclectic decor of 805L..

Shelly had a decent night last night.....pain in the incision areas...more so in the chest incision than in the behind-the-ear ones....but nothing that a combo of hydromorphone and hydrocodone couldn't take care of in short order.

This morning she was ravenously hungry and had some of the unappealing oatmeal provided by the hospital chefs....you're not likely to see any of them on the Food Channel anytime soon. She did, however, polish it off after I added some crumbled graham cracker cookies to it. Not surprisingly she upchucked all of it an hour later....happens after all that anesthesia and opioid drugs. She's all settle down now...with some anti-nausea meds...and a bit later had a good scrambled eggs and toast breakfast that I brought up from the cafeteria....along with some hot tea. She then got up from bed, freshened up a bit and sat in a chair for a while doing email and calling folks and ordering me around...you know....her comfort zone...the picture is one I took yesterday but you'll get the "picture"..

The infectious diseases resident dropped by......the cultures haven't shown any organisms yet, but it's still early...will probably see something in the next 2-3 days. Have to wait for this before identifying the specific antibiotic regimen. They're planning to be aggressive re the antibiotic treatment, i.e. assume as if the brain lead hardware is also infected even though it doesn't show any signs of that as far as they can tell.

The neurosurgery resident...Bloch...dropped by a bit later...did his usual neuro responsiveness tests....looking good...

If you've been paying to the previous posts then you know that Shelly will have to be without stimulation for the next 3 months assuming all goes well. We've been concerned about what that's going to be like for her...we know it's going to be challenging and cause greater discomfort....but we (Ratika, Akshay and I) had kinda forgotten what that looked like back on 2005. Memories are starting to come back....it seems so long ago....but one can start to see the additional tremors and dyskinesia.....significantly stronger on the right side. It's going to take some experimentation with her meds to figure out the optimum operating point during this period. It's certainly not going to be easy but I'm sure we'll figure it out together.

Shelly's resting comfortably...time for her meds...poor thing has to be woken up....Nebraska's leading Clemson 23-21 on this small TV from the stone ages....but at least I can watch the games today...in color even...

OK dudettes and dudes....hopefully you've woken up by now and started to shake off that hangover....HNY

Surgery Update...

2008-12-31T20:21:00.000-08:00

Shelly managed to get an early OR slot....wooohoooo!.....and was rolled in at 5:52 p.m.....barring a few moments of tears while waiting in the corridor on a gurney just outside the OR she was as brave as ever...

At 7:19 p.m .we got a call from the OR nurse that the surgery was complete, all was well and she was in recovery...

Dr. Starr came up a few minutes later and explained that everything went according to plan. He was glad that we made it down to SFO as fast as we did. He did see evidence of infection in the wire behind the ear and felt that removing the wire and the pulse generator was absolutely the right thing to do. She's currently on a broad-based IV antibiotic (Vancomycin) currently. Once they get results from cultures they've taken from three different areas they'll be able to use a more specific antibiotic....these results will be available over the next 3-5 days as the cultures grow.

It seems likely that we'll remain in SFO till end of next week so that we can have all the stitches removed and inspected before we return. This will also give us time to have the home IV antibiotic system in place in Bellevue before we return.

Shelly is still in the recovery room and expected back to the room....yes she does have her own room...primitive as it is....in another hour or so.

More reports later.....

Peace....Health.....and a HNY.....

Well the verdict's in....

2008-12-31T15:02:00.000-08:00

Well.....the immediate uncertainty has been cleared....

Dr. Starr feels pretty strongly that the best course of action is to remove the lead extension wire and the pulse generator. Not what we wanted to hear.....but not unexpected....$%&#%$@^

So we're waiting in a queue for an OR slot....Shelly surgery is what is called an "add on" slot....and this morning when Dr. Starr was trying to book a slot she was number 12 or 13 in the queue. He thinks it could be late tonight or maybe even sometime tomorrow morning....

Poor thing is on NPO (nil per os in Latin....Nothing by mouth) status. But if it looks like the surgery slot is going to be delayed much beyond tonight then they would get a fixed slot further out and let her eat dinner.

So here's the bottom line for now...

- Surgery sometime in the next 12 hours or so....hopefully...
- then a course of IV antibiotics for probably the next 4 weeks...a few days in SFO...rest at home
- stay in SFO depends on getting the home IV antibiotic thing set up in Seattle....probably earliest is Mon or Tue of next week....so we'll probably be in SFO till then

I'm starving to death.....so is Akshay.....need to go find some grub....

Later people....keep sending those happy vibes Shelly's way......

Not how Shelly planned to spend new year's eve 2009....

2008-12-31T13:29:00.000-08:00

Room 805L....UCSF....drab aging rooms and corridors....the cafeteria on the 2nd floor....driving up to UCSF on Judah....lots of stop signs....the parking garage on Parnassus....Green level G82....it's all waaaaaaaaaaay too familiar....it shouldn't be.....but it is...

What's up you ask....or should be if you're not asking....

As you already know Shelly's been having this low grade fever for about a week now. She's been on antibiotics and we've been going back and forth to our Seattle docs to have things checked out. Last Monday Shelly was also "re-programmed" from scratch....took almost 4 hours....and it always drains Shelly.....but things went really well...and she was starting to feel pretty good. In a couple of days we'll be over this fever thing and then clear sailing we thought...

I guess we were getting way ahead of ourselves....another lesson that if you don't manage your expectations carefully then you get surprised....but more on that in a future post...

I came home from work yesterday and took a look at Shelly's incision area behind her ear and saw that it was a bit more swollen than before and I could see a bit of drainage...not encouraging signs....I took a picture and sent it off via email to Dr. Starr for info.....wasn't really worried about it at that point....

Had some dinner.....Shelly did too.....I commented on how good she looked....how active she was and had been all day.....I was actually starting to get comfortable....

Then I hear this ding on my iPhone....there's a new email from Dr. Starr....he's quite concerned after seeing the picture I sent....feels pretty strongly that there might be an infection that is resident in the "hardware"....the wires or the stimulator....and indicates that the most likely option in these cases is that the hardware needs to be removed....IV antibiotics given for a while to clear out the infection.....then re-insert the hardware after about 2-3 months.....she'd have to be without the stimulation for that period....there is a very slim chance that treating her with IV antibiotics without removing any hardware could work....but it's very slim....and you lose time doing that....

My heart sank.....do I tell Shelly this now?.....how will she take it?.....she's been through SOOOOOOOOOOO much.....this is such a cruel hand that fate has dealt.....she doesn't deserve it......

But I knew what I MUST do.....I went upstairs and told her.....and then told mom and dad.....I didn't even have to look at their faces or hear them say anything to know how they were feeling at that moment.....I told the kids on the phone......ditto.....

Then calls to her Seattle neuro......after figuring out how to have her paged......I tell her about Dr. Starr's email....she emails Dr. Starr....she doesn't know how to page him....she also thinks that trying IV antibiotics in Seattle for a couple of days isn't a good option....she advises that we fly down to SFO pronto.....that's where Dr. Starr is....he's the expert on what to do in these situations.....just get down there as fast as you can....

Meanwhile the kids had come home.....

what flights.....
where should we stay...
who's going....can the kids join on this visit...they just took time off from their respective work/lab...
what should we take...
how long do we need to stay....
did you remember to book a car...
should we take the CPAP machine.....
have you taken all her meds...
what's the weather like in SFO...do we need coats....rain gear.....
have you informed work re being absent again....

It was right about midnight now.....the arrangements done.....bags mostly packed....alarms set for 4 a.m.....flight at 0710....

Shelly is being brave....but very scared.....fed up doesn't even come close to describing what she's feeling....deep despondency comes over her in waves.....we all try to make her feel better.....it's bloody difficult....what can one really say in this situation....the uncertainty midst the certainty of having to un do what she just had done a couple of weeks ago....no...this can't be....this isn't right.....we finally fall off to a fitful sleep.....

that brings us to 1000 this morning....we're in baggage claim in SFO....I'm trying to reach Dr. Starr to figure out where we should meet him....everyone's on vacation....there's no front office to call....I finally reach the on call service and ask for Dr. Starr to be paged.....finally get a call back from the neuro resident....Dr. Potts....go thorugh the whole background as quickly as I can....he "gets" it quickly....thank the Lord.....he asks us to meet him in ER...he'll contact Dr. Starr in the meantime....

we check into ER....change into the gown....IV....blood draw....more blood draw...O2 levels....blood pressure...temp....weight....allergies?.....pain?.....even you know the drill by now....

I get a call from the man himself....Dr. Starr calls me on my cell phone....said he'll be in to see Shelly in a couple of hours....that was 4 hours ago....said he'd book an OR slot in any case.....might change his mind after he sees her....but doesn't sound likely....

back to 805L.....

Shelly is resting...snoring lightly.....Akshay is leaning back in a chair....laptop on his lap (duh)....eyes closed....he's tired too...poor guy....and we haven't eaten hardly anything all day....we don't want to leave and miss Dr. Starr....hope he gets here soon....

Hey he just popped in.....back in a bit.....

peace....

Recuperating nicely except for this niggling fever...

2008-12-27T12:17:00.000-08:00

It's been exactly a week since we returned from SFO and what a week it's been....the snow has dominated our lives here in the Puget sound area....and even more so on the hill we're on.

...which also made life a bit challenging with respect to Shelly's recovery. We had an appointment on Tue to get her stitches removed. The roads on our hill were border-line impassable but we somehow made it down...talk about nerve wracking....and fortunately 405 wasn't bad. Well when the doc looked at the incisions they didn't think they were ready to come out and asked us to come back the next day. Further complicating matters was that they took Shelly's temperature and it was 99.9....so we had to go get a blood test done (CBC and sed rate) immediately (stat you know...now that I'm all medically experienced...)....plus Shelly was put on antibiotic immediately (Keflex 500mg 4 times a day). The big concern was infection and Sierra Farris and Dr. Giroux felt that if the temperature went above 100 then we should head for the ER and get IV antibiotics going (turned out that I contacted Dr. Starr later in the week and he didn't actually think we needed to go to ER unless the temperature went above 102 and the incisions were very swollen etc....that made me feel a bit more relaxed). Great....that's all we needed now....we rushed to the drug store and acquired a thermometer and picked up the antibiotics and somehow made it back up our hill.....wondering all along if we'd be able to get down again the next day to go back to the doc.

Well on Wed we again did successfully navigate down the hill....the incisions looked a lot better and the stitches were removed successfully....with Shelly whining just a bit :)....ok fine....I'm sure it hurt like heck....she was very brave about it...

And the stitches did come out....really....evidence below....

We then had to get another blood test done....since she still had a fever around 99.8.....and got a prescription to get yet another blood draw for the day after Christmas....poor Shelly....the techs always have difficulty finding the right vein to draw blood...and she invariably gets poked 2-3 times before they're successful....not fun.....a side benefit of all this blood work is that we became experts at where to park in Evergreen hospital to minimize the walk to the lab...stuff you never really plan on being experts on....but hey...

We did return yesterday for the 3rd blood draw....Shelly's temperature was normal yesterday....and we were beginning to feel like it was behind us....but not so....I just took her temp and it's 99.8....darn....

Well...she's taken some Tylenol and is resting.....pretty fed up with this whole thing....and who can blame her for that....BUT....Shelly's been active.....she cooked up a storm last night....she gave the kids food today as they headed back to their apartments....all good....

Now we just have to get this stupid fever thing behind us.....

On the subject of taking things for granted...

2008-12-20T18:46:00.000-08:00

Ratika and Akshay (our kids) joined us on the trip to SFO for the surgery. They each took time off from their work to be with Shelly and me....they did it on their own without being asked....and they always made sure we knew that they would be there for us as long as we needed them and more. While I expect that of our children....and that's how Shelly and I've been raised....it occurs to me that it's far too easy to take it for granted. We're ever so fortunate to have such great kids who understand the value of family and friends and caring. Thanks R & A for your love and support....we're blessed indeed!

p.s. and no Ratika....it does not mean I'm going to buy you an iPhone :)

We's a back home....

2008-12-20T18:18:00.000-08:00

Left on a 10 a.m. flight out of Oakland this morning. The winter wonderland was a beautiful sight from the air as our flight came in to land....we weren't quite sure we'd be able to drive home. But thanks to Charlie B and his trusty 4-wheel Jeep we were all able to make it back home safely. Shelly slept through the flight....I was concerned about air in the brain post surgery causing discomfort while flying but it didn't appear that Shelly had any discomfort related to this....whew!

Assuming the weather cooperates, Shelly will have her stitches removed on Tuesday. We'll continue to be very watchful for any signs of infection....not a good thing when you have stuff implanted in your body. Shelly's happy to be back...her parents are even happier....it must have been very difficult for them to not be there while she was having surgery...the kids are real happy to be back and get back to their work/lab.

We're very lucky to have Dr. Starr of UCSF as Shelly's neurosurgeon. He's highly regarded in the medical community, very skilled, he exudes a quiet confidence and he takes the time to explain things and answer your questions without any airs...and he replies to my emails to him without making you feel like he's doing you some big favor. Thanks Dr. Starr and thanks Monica Volz (his nurse practitioner) who has always been so helpful and supportive.

Here's looking forward to some extended "normalcy" for Shelly....it's tough enough already without broken wires and such mucking things up.

Thanks again to all of you for being incredibly caring and supportive. It's no small thing....

peace....good health....cheers...

Bye bye UCSF...

2008-12-18T15:43:00.000-08:00

We're outta there and we're hanging out with our close friends in San Jose.....things are good so far. Shelly got a clean bill of health from Dr. Starr who checked her out this morning and changed her dressings. Shelly and the kids are in a deep slumber at the moment....they're pooped......physical fatigue from the stress of surgery for Shelly...physical fatigue from the death of sleep in the last several days for the kids...but the deep slumber also comes from all the tension draining from your system.

Shelly's tromping around the house unaided....nice to see...it's still early in the recovery period and we'll have to watch things closely....in this business one quickly learns to not take anything for granted...but it's a good start nevertheless. We're most likely heading home on Saturday sometime, weather permitting.

OK...time to get back to page 135 of John Grisham's The Appeal and chill a bit....

Images of progress today...

2008-12-17T15:46:00.000-08:00

Shelly's had a pretty good day....

Lying down and resting in the morning...

Sitting up and resting....

Eating...

First walk...

Gazing adoringly....

Dr. Starr stopped by around 6 p.m. this evening and ran into Shelly walking in the corridor with the aid of a walker. We then had a hallway conversation....he said the post-op MRI looked really good and the lead targeting was very good...almost exactly in the same position as before. He thought Shelly could be discharged sometime late morning tomorrow. He'll come check her out tomorrow sometime around 10 a.m. and Monica (his nurse) should also be around to change her dressings on the incisions. So looks like a good possibility that we'll be out of the hospital tomorrow afternoon.....we'll be staying with some good friends of our in San Jose. He said the earliest he would recommend we fly out is Saturday....this has to do with brain surgery resulting in some air being trapped in the brain...which normally gets absorbed by the body in a few days. Also we have one more decision to make....do we stay till Wed of next week and have him remove the stitches or do we go home to Seattle and have that done there. I think we're leaning towards the latter....so Shelly can get back to home home quicker.....

later dudettes and dudes.....peace....

0700 update...

2008-12-17T07:11:00.000-08:00

The neuro resident dude came by and did...as you might have already suspected...a neuro check thing. You know....point the little pencil flashlight into her eyes....ask her to follow his finger with her eyes....lift your hands up in the air....lift your left leg...now your right......ask her what day it is....why she's here...what city she's in....stuff that drives her crazy....they all ask her that....actually we....er I...asked her that several times last night. At one point she answered the question and then followed that immediately with I'm not stupid....cracked us all up. Now I really know she's doing better.

0600 check in report

2008-12-17T06:31:00.000-08:00

We woke up at 0400....man that was so tough.....showered up and came to the hospital by 0520. Shelly had had a decent night. Her pain level is better....a 5 on a 10 scale....last night she reported 8. She did have one episode of nausea and they gave her some anti-nausea medication. That's what hospitals do....if you have a bad X thing then they give you anti-X medication. Just thought you'd like to know the inner workings of our medical system.

Shelly is communicative when she's not dozing....which is what she's doing at the moment....dozing that is. I think she's getting hungry....let me go find out what delectable delights are due to be delivered...

later gang.....

Finally....we're done....

2008-12-17T00:40:00.001-08:00

Well just when we'd resigned ourselves to sitting around for another few hours for the surgery to complete, we were surprised to see Dr. Starr walk into the surgical waiting area at 6:30 p.m. in his street clothes....looking very relaxed...you know...a been there done that kinda look. Which was certainly confidence building. He said everything went according to plan....good good good. He showed us the broken wire and explained that this is first generation technology...the wire not actually a straight wire....think of it as a very thin wire like a coiled telephone handset wire. Apparently 2nd gen wires are being developed (not yet FDA approved) that will be much better...but that's not an option right now.

Much relief.....the interminable wait had finally come to a close. We still had to wait for over a couple of hours before we were allowed to go up and see Shelly in the PACU (Post Anesthesia Care Unit). She was very groggy and in pain but recognized us and was delighted to see us.......the sentiment was mutual my dear. The kids and I took turns hanging out with her since PACU is a very crowded recovery unit with beds wall to wall and very little room to move around for the nurses. A couple of hours later Shelly was temporarily moved back to the pre-op area since there were no rooms available. After she was moved we visited with her briefly before they told us they did have a room. We were temporarily overjoyed at the prospect of the room.....the first look at the very small room shared by three patients did nothing to make us feel better...in some ways pre-op was a better environment to be in....but as we've learned at UCSF one has very little control of anything.

As of this writing the kids and I have come "home" for a short nap. We'll be back at the hospital by 0500 to see Shelly. I felt bad leaving her but we weren't allowed to stay in the room anyway......she was pretty groggy and needed some rest.....we needed a few winks too....the kids are pooped....ok fine....so am I

Shelly's headed in the right direction......your support all day was fantastic and I passed it on to her at every opportunity....I know it made a huge difference to her....and to us.

I'm heading to bed now....hoping that Shelly wakes up with less pain. Oh btw...she did scarf down a cup of apple sauce...poor thing...she was starving.

More tomorrow...er...later today....

peace......easy....
--
cheers.....rajan

Quick update...

2008-12-16T15:05:00.000-08:00

We came back from coffee around 1230 or so and I decided to check and see what the situation was. We learned that Shelly had still not started surgery. The poor lady had been lying in pre-op following her CT scan since about 1130 or so. She had the big metal frame around her head with the bolts screwed in tight into her skull. I sent Akshay up and she broke into tears....she was so alone and frustrated. Well the kids and I took turns being with her. While this was frustrating for all of us, it was just that Dr. Starr had not finished his first surgery and couldn't have started earlier. But they didn't inform us....which was annoying as heck....but not unexpected.

The good news is that I did get to see Dr. Starr and discuss the procedure in more detail. He was as patient and helpful as ever. Even as I talked to him I felt so bad for what Shelly is going through....she's so brave....and more importantly even through her pain and wooziness and frustation she constantly asks about the kids and her parents and reminds us to contact all of you...and to get something to eat.....and....and.....one has a lot to learn about selflessness from her.

They finally wheeled her away for real at 1:53 p.m. The nurse indicated that he would send down an update about a couple of hours into the process.

Fingers crossed......now the wait begins in earnest....all the very best to you Shells....

The process has started...

2008-12-16T11:41:00.000-08:00

Shelly had a very restful night....wooohooo!

Got up around 0530. and we left for the hospital right at 0700. Got in around 0745 and checked in. We went up to the pre-op room at 0820....change into the hospital gown....bag all the clothes and shoes into a gigantic yellow plastic bag...wait...........................................wait................................

Jamie, an RN shows up and takes vitals.....her printed notes still show 1700 as time of surgery.....

A bit later Monica, Dr. Starr's nurse shows up and does a number of tests of the stimulator to confirm that the right brain lead is in fact broken. She does this by cranking up the voltage in steps to 8.5V....well beyond what could be tolerated if it were working correctly. Shelly hardly feels any sensation....good thing.....confirms that the lead does need replacing. We do the same....or attempt to do the same with the left brain lead to confirm it too is working correctly....even at 2.0V in monopolar mode Shelly feels side effects....mouth pulls...tingling...etc. Good again....it's doing what is expected. After measuring a bunch of impedances, Monica returns Shelly's settings to the original ones. Shelly is doing great through all of this. It's now around 0930 and Shelly's meds have worn off. Still doing pretty well though.

Next step is to hook up an IV. A real challenge with Shelly....it's impossible to find her veins. Monica pokes her on both hands without luck...it's painful to watch. She gives up and calls up the anesthesia person to do it. We wait........wait.....anethesia person shows up and is able to find her vein in the first attempt....nice job! This is an important step since this is how they would administer the anesthesia.

The next step is the all dreaded "stereotactic frame" step. Shelly is very very nervous about this. It's a large, metallic, heavy frame that goes around the head and is attached via these gigantic screws that are screwed on pretty tight into the side of the head...on 4 sides. Will I be aware of them putting it on? she asks again and again. I reassure her....they'll give you some Versed real soon that'll send you into la-la land in about 15 seconds....she doesn't look convinced....the last time around they gave her Versed before she noticed the frame...so she doesn't really have any recollection of it except that coming out of surgery she remembers this heavy weight on her head that really freaked her out. Let's hope it's better this time. Picture of the frame below.....also note those gigantic screws...

Well to get her frame on she needed to sit in a wheelchair....but guess what....there wasn't a wheelchair in the pre-op area......so we waited.........and waited........finally they managed to recover one.....by now it was close to 1030.....we got her into the chair.....

1035.....they're just starting to give her the Versed and put the frame on....Mr. Krishnamurty, this would be a good time for you to say you goodbyes and we'll see you later....says Monica very politely...

I head down to meet up with the kids....we're now sitting in the Arizmendi cafe on 9th and Judah....eating some pastries and some really good pizza....

I suspect she's in surgery by now....but not sure......

peace....easy...

The day before surgery numero dos...

2008-12-15T20:41:00.000-08:00

Well..Shelly's had a fairly long day....more emotionally taxing than physically. It's the whole anticipation of the surgery that, at some level, takes more of a toll than the surgery itself. She's fallen asleep watching some movie on the computer....I'm going to have to wake her in an hour so she can take her final dose of meds for the day and then go back to sleep again.

We left home this morning at 0745 for UCSF. It sleeted heavily just as we set out....that's all we needed....clearly we didn't have enough things to deal with already....we make it through to UCSF without incident...

Today's visit to UCSF was incredibly inefficient. UCSF, by all accounts, is a highly renowned medical school that has some of the best medical professionals. The administration and operations of UCSF, however, are at the other end of the competency scale.

We were asked to show up for the pre-op process at 0930.
We dutifully show up by 0900 and go to L-170 for the "Prepare" meeting. It's this little crowded room with a diverse set of folks waiting for all kinds of medical intervention.
We sign in.....a lady finally picks up the list....stumbles through Shelly's name....and tells us that our appointment is at 1030. Go have some coffee and breakfast and come back around 10....she offers.
Shelly's just had her meds....is all nervous.....she's "freezing"....unable to walk....so Akshay gets her a wheel chair (in exchange for his driver's license) and we cross the street and head down to Starbucks to get some coffee and horrible pastries.
We trundle back around 1000.
We then sign in again and have to fill out this long questionnaire....remember this questionnaire...I'll come back to it.
We finally get called in for registration....by this very detached lady....fill out the consent form....sign away all your rights....then wait some more.
A voice from inside calls out something that suggests a Russian trying to say Shailaja....we look up and see a nurse kinda person waving from beyond a door.
We go up and she takes Shelly's vitals - height We'll say you're 5 foot 3 she announces....weight...she does not announce the number....obviously in a momentary fit of tact....BP..126/54 is very good she says....we now do ECG and take some blood she says pointing to yet another door....you go wait there she dismisses me.
Shelly comes back out 15 mins. later.....good thing....
We then wait for another nurse practitioner.
We get the call and enter yet another door....we sit down....aforesaid nurse practitioner then proceeds to ask us the same questions that we spent mucho minutes filling out in the previously mentioned questionnaire. She has to enter it into the medical records system....
Many minutes go by....she then does some cursory examination of Shelly's heart and breathing with a stethescope...and pronounces her ready for surgery.
She informs us that we should show up for surgery at 3 p.m. on Tuesday....huh?....Dr. Starr's scheduling office had told us that we should show up on Tue at 10 a.m. She calls Dr. Starr's office....gets vm...leaves message to call us. She suggest...nicely...that it might be best for us to confirm the time with Dr. Starr's office directly.....great....
It is now almost noon.....we leave Shelly and Ratika at the UCSF food court across the street and Akshay and I head for Dr. Starr's office.....where we're informed that 1000 is probably a good time to show up on Tue...there still seemed to be some question as to the exact time....we leave a little puzzled....and rejoin Shelly and Ratika at the food court...UCSF food court isn't exactly the gourmet destination of the world....but what the heck...you make do with what you can get....pizza and Dr. Pepper....with nachos to round it out...

It's 1240 by now.....MRI is scheduled for 1300 in another building.....Shelly's next med dose is at 1300, so the meds have essentially worn off....she's freezing and finding it hard to move....complicated by the 100s of folks in the food court...she's conscious....causing even more freezing....we decide to go get the wheelchair again....Akshay runs across the street and brings one......we head down to the imaging lab.

You guessed it...we have to check in and register again.....the dreaded clip board with the questionnaire and consent form stares at you....it's multi-sided and multiple sheets.....it's the same information

AAAAAAAAAAAARRRRRRGGGGGGHHHHHH @#%@#

Finally we're checked in and it's time for the MRI....fortunately Dr. Starr's nurse shows up.....she actually knows a few things...I take this opportunity to ask about the surgery schedule....you need to be there at 0800 she says.....

AAAAAAAAAAARRRRRRRGGGGGHHHHHHHHHHH #%$@&$^!*%#^$@

MRI is done.....we got a good set of images she says....phew!....I couldn't possibly fill out another questionnaire...

We take her word for the surgery schedule....the only other person to ask would be Dr. Starr himself....

We get back to the car in the parking garage....Shelly is quite tired by now....we bundle her in and set out for "home"....it starts to sleet mildly as we leave....very symmetric day you know....as we near home the weather actually clears.....the sun appears.....we see the Pacific ocean....it looks beautiful....we pull into Rockaway beach and take a couple of pictures with the kids....it feels good.....it's going to be a good day tomorrow....

So we're off again tomorrow morning....need to leave home at 0700....so much for sleeping in....

Well gang....time to go wake up Shelly for her last dose of meds for the day.....and catch a few winks myself...

peace....easy.....

The problem that is being fixed...

2008-12-14T19:53:00.000-08:00

With Shelly's permission I'm including a view of the x-ray that shows the break in her lead that will be fixed with the surgery on Tuesday. While I wish Shelly never needed any of this and that we weren't back here getting it fixed yet again....I still find it very exciting that Shelly and people with her need have access to solutions that can improve the quality of their lives....

The four tiny black squares in a row are connectors that connect the lead from the brain to the stimulator in the chest.

Update 12/14/08....1819 hrs...

2008-12-14T17:54:00.000-08:00

Shelly had a good rest last night. She pretty much slept through till 6 a.m., took her meds and then slept again for another hour or so. Good job Shells....the cool part is that I got to sleep through too.

We've been hanging out with our nephew in Pacifica CA....it's a beautiful location.....and visited with other long standing friends from our years in Austin. Shelly's "surges" have also been very infrequent so far today....wooohoooo!

Stating the obvious here.....but thank the Lord for real friends....

Pre-op MRI tomorrow morning at 0930.

Later gang........

Deja vu....all over again...

2008-12-13T22:36:00.000-08:00

A couple of nights ago...2:45 a.m...

I'm so worried...I don't know what's going to happen...Shelly half mumbles in her fitful sleep midst the rhythmic hissing of the CPAP machine that she uses every night for her sleep apnea.

It'll be fine Shells....I mumble back....we'll just take it one step at a time...the kids and I will be with you as always...try to relax and get some sleep....easy for me to say....I'm not the one who's going to have someone drill into my brain yet again...and then wake me up in the middle of it to see how I'm doing....but I'm getting ahead of myself...let me catch you up a bit..

If you're reading this blog you most likely already know that Shelly had DBS surgery back in December of 2005 and then had to go back in in September of 2007 to have a faulty wire replaced along with a new stimulator. Other than a severe episode of sciatica in Dec. of 2007, it's been a pretty good run in 2008. Shelly's has been active as ever and making life difficult for me...which is always a good sign that she's doing well :). A couple of months ago her episodes of "freezing" started to increase and she's been going back and forth to her local neuro (at the Booth Gardner Parkinson's center) to get her medication adjusted....with variable results. Then about a couple of weeks she started mentioning a new symptom....an unpredictable "surge" that she felt all along the left side of her body that lasted for a few seconds and would cause the fingers in her left hand to become very rigid....it would happen once or twice a day...then started happening with a little more frequency...maybe five times a day....I can't explain it...it's a very strange feeling....you could see the distress it created when the surge occurred...she's hold her head with her right hand...eye's shut tightly....left hand stretched and rigid....waiting for the surge to pass....the surges occurred randomly during the day...

It was scary to watch her experience it....if you didn't know she'd had DBS it might even freak an observer out even more....one could only imagine what she was feeling. I knew something was not right here....this was not just a symptom of the progression of her Parkinson's....couldn't be....but what was it? Then last Monday (Dec. 8th) we had an appointment with her neurologist and her "programmer" to review her medication and symptoms. Sierra (her programmer) was doing a routine test of her stimulator when I mentioned this new "surge" symptom. Sierra had been noticing some weird impedance measurements along with the fact that she couldn't get consistent measurements. While she was doing this Shelly had another "surge" episode. The variability of the measurements caused Sierra to recommend that Shelly have a series of x-rays done "stat" to see if there were any issues with the stimulator and wiring. We went immediately to Evergreen hospital to get the xrays done. Sierra called that evening around 5:30 p.m. to tell us that she was pretty sure that one of the leads to the brain...the one on the right side of the brain...was most likely broken. She sent us a copy of the xrays and one could clearly see where the wire had broken. Sierra immediately called Dr. Starr at UCSF and left him a message along with the xrays. The verdict was in the next morning when Dr. Starr emailed me back to say that the right brain lead extender was fractured and would have to be fixed immediately. While the "fractured" part of the lead was outside the brain, the lead would have to be replaced in its entirety...i.e. Shelly needed to have half the original surgery of 2005 repeated. I was originally hoping that somehow the lead could be spliced outside the brain....but it is not to be.

But at least now there was something that could...or seemed to...explain the surge. The left side of the body is controlled by the right brain lead....so it made sense that a broken right lead could have unpredictable effects on the left body. I'm really pained that Shelly has to go through this again....God knows she's gone through a lot and goes through a lot every day....but at least there's a good reason for it....which brings me back to today....

We....Shelly, the kids and I....came to San Francisco a few hours ago today. Surgery is scheduled for Tue around 10 a.m. with pre-op testing scheduled for Monday morning at 0930 hrs. The surgery is expected to take 3-4 hours with overnight hospitalization. If all goes well I expect Shelly will be discharged sometime on Wed afternoon and then she recuperates for a few days before we head back to Seattle on Sat or Sun of next week. I think Shelly is really fortunate to have a very good surgeon and to get such an early slot to have the surgery done....the discomfort and anxiety from the situation would have been much worse had she been made to wait several weeks to get a slot.

Yes Shelly has been through this before....I've been through this with her....so have the kids...and so have many of you who have and still provide her with support and comfort well beyond anything that I can.....but it's still brain surgery....it's scary...it's even scarier if you're Shelly....if you're Shelly you're just fed up with this....I feel her pain.....there is so little I can do directly to assuage her fears and frustration....but she's ever so strong in her own way and derives so much strength from her family and friends. So thanks for reading.....and caring....and helping....this would be much harder without you....

Think I'll hit the sack now.....sleep beckons.....Shelly is resting....I wish her a restful and anxiety-free night...

I'll keep you updated over the next several days...

peace....easy....

A week after the ER visit...

2007-09-29T20:53:00.000-07:00

Things are looking up....

Shelly had her programming session last Monday. Like previous visits it was quite exhausting....she was in there for 4+ hours.....but unlike previous visits Shelly wasn't tense, and that really helps get a better read of what's working and what isn't.

It's pretty clear the new stimulator and the new wiring are a good thing. The impedances are all good....we can now use electrode 6....and the signal strengths are better.....she seems to be getting the same levels of stimulation at lower voltages. Good to know that the surgery was worth the trip and the effort. The programming visit did not immediately fix the severe left leg pain from dystonia. Dr. Giroux decided to give Shelly another round of botox at a higher dosage level. She also prescribed an anti-spasmodic.

Shelly has definitely shown improvement over the last 5 days. Her tremors are doing well. The freezing is better too....not gone but definitely better. Dyskinesia is a little higher during some parts of the day, but that's also a sign that the stimulation is more effective. We've reduced the Sinemet a tad to see if that helps. The leg pain is still bad but more manageable. It tends to be more during the mornings and better during the day. Shelly has found that if she gets up early and stays mobile then it seems to control the pain better. She's very determined to do what's required to make this better....good for her. She's stayed very active this week.....been running around town doing a lot of work for Utsav 2007.

Last Saturday's events seem like a long long time ago....almost surreal.....a good thing....

p.s. we do have to get to the bottom of what caused last Saturday's issues. Shelly will have an EEG done....schedule unknown....for some strange reason it seems like a really hard thing to schedule..

later people.....peace.......easy...

We had all kinds of excitement this morning...

2007-09-22T11:48:00.000-07:00

It's about 6 a.m. this morning....I wake up hearing Shelly tossing and turning a bit, obviously quite restless. She mumbles "my leg's hurting" and then "why am I feeling this way....I feel tingly all over...". As I sit up and turn around to look at her she rolls onto her back with her eyes closed, arms splayed a bit to the side and tremoring pretty badly.

Shelly, what's going on.....no response....I tap her cheeks while calling her name..Shelly...yooohoooo....no response. I'm more alert now and only a touch concerned. Over the past few years I've seen a couple of episodes where Shelly would "go away" for 15-30s. I've been able to "wake" her up by some vigorous shaking or by splashing her face with some water. Normally that would snap her out of it. Neither approach paid any dividends this time.

I'm not prone to panic...but it's been about 5 mins. now and I'm beginning to think to myself "there's a problem here". I turn off her stimulator to see if that would help...no change. I run down the stairs to wake up Ratika who is visiting with us today. I run into Shelly's dad who is getting ready to take Duchess for her morning walk. I ask him to come up...I run back up and called 911.

I'm talking to the 911 operator while at the same time trying to get Shelly to snap out of it.....quite a challenge. The operator is asking me all these mundane questions

What is your last name?
How do you spell that?...grrrrr....I'm thinking I should change my name to something short like Ng....
Shelly....Shells.....can you hear me?.....
Has she had this before?
Shelly....wake up sweetie...
What is your address?......don't you already know this?....I'm calling on a land line for cryin' out loud....
Is she breathing?.....is her chest moving up and down?
Does she have any medical conditions?.....yes...Parkinson's....she's had DBS....what is that?....well I could refer you to a blog to find out more....is anybody on the way???....she assures me someone will be there shortly...

It feels like eternity but it's probably only 10-15 mins since this started.....Shelly's dad is also sitting by her side...you can see the pain in his face....

Shelly makes some kind of sound...her mouth is pulling a bit to one side....many thoughts flash through your mind...I have to force myself to stay focused on figuring out next steps....it's really hard to watch a loved one in this condition...you're pretty much helpless...

The fire department shows up.....there's three of them.....vital signs.....is she having a seizure...no....has she done this before....no....she has an implant in the brain.....what's that for....be careful she has 2 incisions fresh from surgery a few days ago....no no....careful as you reach back behind her head...she's got an incision there....what meds does she take....Sinemet....how do you spell that....geez...Requip....how do you spell that.....Shelly, can you hear me....wake up....what time did this start.....any drug allergies.....no....does she have any emotional issues (he whispers in my ear)....we're going to start an IV....well don't do it in her arm...do it on her hand...she has better luck there....does she drink an alcohol....nope....

The medics show up finally....thank the Lord....I can now have a more meaningful conversation about her condition....ok a somewhat more meaningful one...there are now 5 FD/medic personnel in the bedroom. Meanwhile Shelly's mom comes up and you can just imagine the deep pain she feels as she sees her child on the bed, unresponsive and surrounded by medics. I want to reach out and reassure her....it's difficult....between trying to get Shelly up, responding to questions and making sure the medics don't do something they shouldn't....it's tough...

One of the medics is attaching a monitor to her chest....you know those dollar size circular patches with a button like metallic contact.....she puts one down next to the incision on her chest....then decides she needs to move it....so she peels it off quickly....only a part of it is stuck to the corner of the bandage covering her chest incision and it pulls the edge up.....Shelly cries out in pain and at the same time snaps out of it....

She opens her eyes...only to see 5 or 6 faces peering down at her....she recognizes me, tears well up.....who am I I ask...Raju...she whispers...how many fingers I ask as I hold up 2 finger...she gets it right....I feel my pent up tension ease....the sense of relief in the room in plain....who are all these people....she says...the fear on her face is palpable....what's happening to me....you were "gone" for a bit..I say....do you remember you said that your body was tingling....that was about 20 mins ago....she doesn't believe it...that was just a minute ago...she says...the confusion in her face is plain....what must it feel like to be in her position I wonder...

The medics decide we should take her to ER anyway....he gives her a few cc of Valium to calm her down....she's carried down on a sling and then transferred to a gurney....we head down to Evergreen Hospital ER...it's a fabulous new facility....

what's her name....
how do you spell that....
what's her DOB....
any allergies....
what meds is she on....
any medical conditions other than PD....
what's her pain level.....
vitals..
monitors attached...
.....by now you know the drill....

We stay in ER for a couple of hours....everything seems normal....it's her normal....a very different normal than for you or me......it's funny how "normal" can get redefined....it's all relative.....

We head home.....Shelly's leg pain is absolutely killing her.....but then that's been her "normal" for the last 2-3 months....that battle continues...today's skirmish is coming to a close...

Programming awaits on Monday....let's hope we can find some reasonably effective setting that makes her pain more bearable.....I'm keeping my expectations low....I'm not looking for elimination of pain...."bearable" will be a good start...

It's been a tough 6 months for Shelly....time for a few breaks...

peace....easy....

Note to self

2007-09-19T17:32:00.000-07:00

Shelly's dyskinesia was still a little high. Around 5 p.m. I notched down the voltages on both sides by 0.1V. Similarly to yesterday, when I reduced the voltages by 0.1V, the dyskinesia seemed to visibly reduce. So based on the reductions on the 2 days the left brain IPG should be at 3.8V and the right brain IPG at 3.0V.

Back to Seattle tonight....destiny willing

2007-09-19T12:28:00.000-07:00

Shelly is doing reasonably well today. Biggest sources of discomfort are the pain in her left calf and pain in the chest and along the neck where the wire was tunneled through from behind the ear to the stimulator in the chest. Overall the leg pain is a bigger pain than the surgery related pain.

Some of you have indicated that you thought that the surgery itself would have fixed the leg pain. The leg pain is a condition called dystonia which can cause relentless muscle spasms and continuous pain. Dystonia is a condition that isn't directly related to Parkinsons but is a condition that is frequently associated with PD patients. DBS surgery is also one of the current treatments for dystonia. So the hardware change that Shelly just went through does not by itself fix the leg pain or anything else. It does however provide the opportunity to use the hardware to the fullest extent and so opens up additional programming options. Hopefully one of these configurations will help reduce the leg pain.

This remains a constant battle....it's all about staying positive and hopeful while managing expectations carefully.

See you guys back in Seattle real soon...

Shelly's 2nd surgery

2007-09-18T12:14:00.000-07:00

So catching all of you up a bit...

Since about March of this year Shelly started experiencing some additional difficulties - some increase in tremor, longer "off" periods, pain at the stimulator site in the chest, pain in the left calf muscle as well as just general "instability". We visited Dr. Starr at UCSF in May of this year to have the pain in the stimulator site checked out....that was around May 16th if I remember correctly....he didn't see any specific issues at that time....they re-did some of the programming...moved from a mono-polar setting i.e. one of the electrodes -ve and the case +ve to a bipolar setting i.e. at least one electrode -ve and at least one other electrode +ve. This seemed to fix the pain in the chest area. We came back to Seattle and things seemed to be good for a while but other issues continued. Fast forward a bit....it's now around July and Shelly's previous neurologist (Dr. Monique Giroux) and physician's assistant/programmer Sierra Farris who had gone to Cleveland had now returned to the Booth Gardner Parkinson Center in Kirkland....much to Shelly's and my delight. Sierra very methodically went through programming from scratch and determined after many different settings that 2 of the electrodes (electrodes 4 and 6) in the lead in the right brain appeared to be shorted. What this means is that if electrode 6 is stimulated then it also causes electrode 4 to be also stimulated which can result in un-intended side effects....it essentially takes away the ability to use electrode 6 in a program setting. Additionally shorted electrodes result in increased current drain which results in reduced battery life.....all in all not a good thing.

Dr. Giroux contacted Dr. Starr's office and he determined that this ought to be correct right away. In short order we got a surgical appointment for today Sep. 18, 2007. Now that you're caught up....here's what happened today...

We checked into UCSF Medical Center Moffit hospital at 6:30 a.m. Shelly luckily had had a good night's rest (or mostly good anyway) and was in decent spirits. Getting up really early (4:45 a.m.) and getting ready and driving for 30 mins. is always tough....but then we don't get to choose our surgery schedule. Once we checked in we waited around till 8 a.m. and we were then sent to pre-op. After answering the same set of questions to 10 different people....and then watching the nurse in charge writing down vital signs on a paper towel from the restroom....did nothing but aggravate me a bit...but Shelly remained blissfully unaware of any of this. The neurologist - Dr. Schrock?...came by to record the pre-op settings of the stimulator. She took notes of the settings on one side of the brain and then stopped. It was only after I asked her about electrodes 4 and 6 that she remembered that she needed to do that....I suppose people do forget stuff...but the main neurologist??....forgetting to check the impedances on the side of the brain that had the short??....the main reason we were here??.....definitely annoying.....and a reminder that you really have to stay on top of this stuff and ask questions....even if the doctors find it annoying....one just can't assume that the doctors or the nurses don't forget stuff or don't make mistakes. Before I could get too worked up though, Dr. Starr came by and explained what he was going to do.....OK fine I'll let you in on it....

If you didn't catch this previous post...here's a quick recap of the components of DBS. Two leads with 4 electrodes each are implanted in the brain. The leads include a stretch of wire that runs under the scalp to a connector just behind the ear. A lead extender runs from the connector behind the ear to a stimulator that is implanted in the chest. In today's surgery Dr. Starr would be replacing the lead extender for the right brain lead....this to correct the electrode short.....and the stimulator itself....this to address a problem where the stimulator would show a lot of random "activations" i.e. the stim turning itself on and off or thinking it was anyway.

So back to the pre-op....after Dr. Starr left the anesthesiologist came by to do his spiel...the nurse put in an IV....on the second try....Shelly always has issues with getting an IV started....and then they gave her 2 cc of that magical drug Versed which is a benzodiazepine derivative which has powerful anxiolytic, amnestic, hypnotic, anticonvulsant, skeletal muscle relaxant and sedative properties - in short it can put you in a conscious la la land state in 15 seconds flat.....really....it's amazing to watch. The time was 9:41 a.m. and she was off to OR.

At 11:00 a.m. she was done. Dr. Starr came down about 11:20 a.m. and talked to us about the surgery and said all went really well....no issues. He's got this great style....calm...informative....takes time to talk to you....very reassuring....we can all learn from him....when he saw I was sitting on a chair he told me not to get up and then got down on one knee and gave us his update....that was impressive....for a moment I was confused and thought he was about to propose....

About an hour later I got to go see Shelly in the recovery room...PACU it's called...she was a bit groggy but no worse for the wear. I fed her apple juice and Graham's honey crackers...which she scarfed down...poor thing hadn't eaten anything since 8:30 p.m. the previous night. About 2:30ish she felt good enough to get up, get dressed....a bit woozy but ok....and then we were off to our hotel.

So it's 6:56 p.m. now.....Shelly's been doing OK. She has quite a bit of pain in her chest, neck and behind the ear...understandable. She also was having quite a bit of dyskinesia and I figured it might be that she was getting overstimulated now that the system was working like it should be. I dropped the voltages on both sides of the brain by 0.1V to see what would happen....and whaddya know...the dyskinesia subsided dramatically...maybe a fluke or coincidence...but a good thing anyway.

So Shelly is lying in bed....phone in hand....calling away....hey...what else do you expect. If she continues to improve and feel good we might be back in Seattle tomorrow night....Alaska Airlines permitting.

Many thanks to all of you that called before, during and after to say you were thinking of her and to find out how she was doing. We're truly blessed to have family and friends like you. A special thanks to Shakku and Ram for extending their stay in SFO and keeping me company at the hospital all day today....it made the day that much easier.

More later...peace...easy....

Happy Anniversary Shelly

2006-11-26T21:50:00.000-08:00

24 years today....almost a quarter century.....purty amazin' that.....wouldn't trade it for all the money in the world.

Now that I'm 50 I can start to say stuff like "I'm truly blessed"....without feeling weird...know what I mean?

But I am truly blessed. I'm not sure what I did to deserve Shelly "but somewhere in my youth or childhood I must have done something good".....(Julie Andrews for those of you that are wondering where that came from)... She's a wonderful wife, mother and friend and I continue to be amazed by her dedication to giving to the community and to her family and friends....that she does this in the face of her daily battle with PD is truly humbling.

In a few weeks it's going to be a full year since Shelly's DBS surgery. Feels like just yesterday....or does it feel like an eternity?....can't decide which. People still ask "was it worth it?" or "is it helping as much as you thought it would?" and my answer is still "absolutely". Clearly she has days when she wonders the same....a few days ago was one of those days....when she "doesn't want to live like this anymore".....that's the nature of the beast....a beast that can dent ones resolve once in a while....makes her ask "why me?"....but not for long. Shelly's a very strong woman....she's got a laundry list of things to get done....people to help....lives to enrich with her presence and caring.....beasts are best advised to get out of her way.

My heartfelt thank you for taking so good care of me all these years Shelly....I know I owe you a kaash maalai (gold coin necklace)....you can have that anytime.....I don't know how but what I most want to give you is good health....I'll keep working on it.

Love you Shelly.....keep the faith....

peace....easy....

Shelly in Barcelona

2006-04-12T22:49:00.000-07:00

'Bout time this thing was updated.....

2006-04-12T10:16:00.000-07:00

1000 hours…

It’s a reddish-yellow moment…..she’s lying down in bed…..having some tremors…..a bit restless…..just taken her second dose of the day about 30 mins prior….

“It won’t leave me alone, will it…..stupid thing” she says matter-of-factly. I decide not to confirm or deny.

Then a minute later the medication kicks in….you can see the relaxation course through her whole body as the brain stops sending those rogue movement signals to the arms and legs. “Gosh, it’s amazing how this feels” she adds as her face and her mood visibly lighten up. She’s up and about in an instant…..heading straight for the computer and phone….duh….got a couple of hours to make the world a better place before the cycle repeats…

This is the daily struggle…..it is what it is.

The score card post surgery is still an encouraging one:

Rigidity: Don’t see it anymore

Pain: Negligible

Sweating: None

Dyskinesia: Some. Occasionally gets a little stronger, but overall much reduced from pre-surgery days

Tremors: Reduced. Seems to have become a little more noticeable in the last month.

Medication level: Back to 4 doses a day….this is good…remember that post surgery she had gone to 5 doses.

The last few days, following our return from Europe, have been a bit rough. The medication has been taking longer to settle and wearing off quicker making for longer “off” periods. No real explanation as to why….but that’s the insidious nature of this beast. Shelly has a call into the doctor to talk about it. I think it’s time for another programming session…..it’s been over 2 months since she had the last one. Shelly did very well in Barcelona. We walked all over the place….several miles each day. Walking and exercising in general is something that will do Shelly a lot of good…..if she does it that is….not something she naturally gravitates towards…..we all need to encourage her……so the next time you decide to go out to lunch with her, insist that you take a 2 mile walk before it J…..really……no kidding….

Glad to be back blogging…..more to come….

p..e..

Steady As She Goes....

2006-02-03T21:12:00.000-08:00

While the last programming session didn't necessarily produce any dramatic new results that we might have been (potentially unreasonably) expecting, the settings seem to be doing a pretty darn good job overall. By all accounts Shelly continues to "look good".....well, she always looked good in my books :) ......and the daily quality of life is pretty good......the "off" periods (between meds) is relatively short.....maybe 30-45 mins.....and the intensity of tremors during these periods is also relatively low. So we're not going to muck with the settings for the next 2 weeks or so....we'll see how things go.

I'm in Dallas for 2-3 weeks.....my mom had surgery today....second one within the last 10 days...it all went well....but she's got a fairly long 5-6 weeks of recovery ahead.....I'm glad Shelly's doing reasonably and that I can once again take her parents and all of you for granted :) and be able to come down to Dallas to help.....my sincerest thanks....

Look forward to seeing you all soon....

p.....e......

We're back from SFO....

2006-01-26T23:37:00.000-08:00

Our visit to UCSF for a follow up visit with Dr. Starr (neurosugeon) and Dr. Ostrem (neurologist) was good but relatively benign. Both appointments were basically conversations. Dr. Ostrem and Shelly and I just chatted about the programming done to date. She decided that it did not make sense for her to muck with the programming that Berta Leis had started. Didn't want too many cooks in the kitchen. The visit with Dr. Starr was equally uneventful - which I suppose is the best outcome. He inspected Shelly's incisions (CHECK), asked her to walk up and down the aisle (CHECK) and generally asked her questions about how she was doing and feeling (CHECK). He thought Shelly looked "terrfic"....I think we all agree. He seemed particularly pleased with the "haircut" he had given her....and the fact that you really couldn't tell she'd had brain surgery.

I used the opportunity to ask Dr. Starr a bunch of questions about the surgery and the post-surgical programming process which he answered very patiently. I asked him how the Kinetra device was anchored in the chest. He indicated that it was in a subcutaneous pocket about an inch and a half behind the front of the chest and right below the clavicle. In older patients he would attach it with a suture to keep it from "sliding down" but in younger patients like Shelly he actually does not use a suture. It just kinda settles into a "pocket" and essentially floats. He seemed quite confident that it wouldn't "migrate" :). I also asked him how he created the path for the wires that run down behind the ear and the side of the neck....a question I should have probably left out given his response....he said that essentially he makes a small incision behind the ear and then takes a rigid but bendable rod, bends it to the shape of the neck and then just "jams" it down the side of the neck....."Even the nurses don't really want to observe this part of the procedure" he added....poor Shelly.....I don't think she really needed this visual.....fortunately the visual didn't register till much later after she had left the doctor's office. One question that had been bugging me was why we hadn't seen immediate control of Shelly's tremors during the programming process.....you read a lot about this and you see it in some videos....he indicated that tremor control is best achieved with the lead being implanted in the thalamic nucleus as opposed to the sub-thalamic nucleus (STN) which is where Shelly's is....and where he does it for PD patients.....the STN provides much better control of other symptoms like dyskinesia and rigidity etc. while providing essentially as effective tremor control except that it isn't as dramatic during the programming process. This was really helpful to know.

So yesterday as we left the doctor's office I was thinking "man, this trip was a waste"....."we really didn't DO anything"....."just chit chat". Now fast forward to today......Oakland airport at about 12:30 p.m. as Shelly and I waited for our flight to Seattle. She was sitting in a chair, eating a slice of pizza and chatting on the phone....no tremors....no real dyskinesia....she "looked good"......and then I thought about how it was on Christmas eve 2005....at this very gate.....as Shelly and her mom and I were returning to Seattle after the surgery.....Shelly was miserable....RED RED RED.....she was lying down on the floor next to the gate.....she had strong tremors and pain.....I had to stand on her legs or hands and apply "pressure" to keep the tremors subdued.....she was sweating with all the exertion and tension and anxiety.... what a difference in 5 weeks!....how could I possibly think this trip was a waste.....

Another thing....it had been really bugging me that since Christmas eve Shelly's meds dosage had increased by 1 (from 4 times a day to 5 times a day). This was bugging me because a lot of what I'd read pre-surgery suggested that one of the benefits was reduction in meds and here we were going in the opposite direction. In the recent days as I've been focusing more on reading online forums about DBS patients and their experiences post surgery, I've come to understand that sometimes one can get hung up on one specific thing and not see the forest for the trees. I came across this quote from a DBS patient (in http://health.groups.yahoo.com/group/DBSsurgery/) that put it all in perspective.....

"Reduction in meds as a measure of success for DBS is thinking that is so five years ago. We now understand that the delicate balance of meds and stim, as well as physical therapy or rehab....which requires a committed partnership between programmer, patient and neuro, is the way to achieve the longest lasting, most optimal outcomes, and success is measured in reduction in symptoms along with improvements in quality of life HOWEVER that can be achieved ."

So if taking a little more meds combined with the programming can significantly improve the quality of life.....as it has done so far.....then all that one should be thinking is WOOOHOOOOOO!!.....plus it appears that the reduction in meds is still a likely outcome in the coming months.....as I've been saying in earlier posts and as Dr. Starr reminded us again....it's barely been 6 weeks since the surgery.....he said the brain can take 2 months to "settle back down".......Shelly will probably still see changes (positive) a year from now.....

This journey has barely started....and I know there'll be more ups and downs along the way....but with the results so far one has to call it a success......i couldn't be happier that we got it done and that this technology was available and mature enough....it still boggles the mind.....literally....

p....e....

I Hate Programming....

2006-01-23T22:29:00.000-08:00

...she mumbles in bed at about 0430 this morning. "You tell the kids never to say hate..." I mumble back and turn my head the other way to catch a few more winks. I can 'feel' twin beams of heat on my back....obviously from intense love bearing down on me.....

Shelly has been off meds since yesterday at 1600. Even at 0930 this morning as we leave for the appointment, she's doing quite well. The appointment is at 1000 with the ever so polite and gentle Berta Leis...as in 'lace' ....you know.....the shoe kind. The programming goes till almost 1300. Most of the time is spent on the left brain/right body side. Berta tries various combinations of electrodes in a "bipolar" configuration....one positive and one negative......switches polarities.....takes voltages up and down.....Shelly experiences the occasional mouth pull....the occasional tingle...the occasional heaviness.....at some voltages they won't go away till the voltage is lowered....in others she feels no different even at higher voltages....some above 4V....

Programming is a very anxiety inducing event for Shelly...........she finds it hard to breathe slowly and deeply.....Berta keeps reminding her to do that..... ever so gently...it really does make a difference when she does breathe deeply and exhale slowly.....she just doesn't do it very often.....the tension in her body can accentuate the tremors....so it can be hard to see if a programmng step actually resulted in an improvement.....

On occasion a new setting seems to have an effect....the tremors subside almost completely....lasts for a few minutes....."have we found the magic setting?" one wonders.....alas it only seems to last for a few minutes and the tremors return....she's been without meds for almost 21 hours.....and relatively speaking she's doing ok.....

By 1245 Shelly is getting tired again......she's been a trooper today.....none of the new setting seemed to have produced a significant enough gain to warrant leaving the stimulator at the new setting....remember that the goal is to operate at the lowest voltage that provides improvement....if you go from 2.2V to 3.5V or 4V and don't see significant improvement, then there isn't much point in making a change.....it just consumes the battery faster and the opportunity for undesirable side effects is higher....so Berta resets the settings to essentially the same levels as they were at the start of the session....the fields are still monopolar....electrodes 1 and 2 on the left brain at negative 2.1V.....and electrode 1 on the right brain at negative 2.2V.....the reduction in the rigidity that she experienced at the end of the previous programming session is still "sticking"...that's good...

So all in all not a whole lot changed today.....but we have gathered more info on how she reacts to different conditions.....this is to be expected.....as I've been saying for a while....this is a non-deterministic system.....it's natural to want to know exactly why things didn't change today....or why we haven't yet found the "magic" setting.....there's no simple answer....it's just the way this thing is....something that doesn't appear to "work" today may start to have an effect the next time....

Shelly's condition post surgery is clearly better......her dyskinesia levels are clearly way lower than before.....her "off" periods aren't that disabling.....the Red periods continue to be almost not existent....her sleep is better than it used to be....all good...

We leave tomorrow morning at 1045 for San Francisco for a follow up with Dr. Starr on Wednesday....

To quote Perseus once again........"He conquers who endures". Shelly is doing a remarkable job enduring.....

p......e.....

Programming - Take 1

2006-01-18T23:24:00.000-08:00

Well golly gee…..the long awaited programming session did finally happen today…

We went in at 0930. Shelly wasn't really looking forward to this given her first experience with the "quick programming" by Dr. Griffith. She had been off her meds since 1700 yesterday. She had a bit of a fitful night but seemed in pretty decent shape this morning even though she didn't have her normal 0600 morning dose either……pretty Yellow but not Red. The programmer is Berta Leis, PhD. She has a PhD in nursing and has been doing the DBS programming for about a year now working with Dr. Alida Griffith who is Shelly's neurologist. She has a very gentle and patient demeanor……which is absolutely essential when you're doing this kind of stuff with DBS patients who are generally quite stressed about the whole experience. Shelly was feeling a degree of anxiety…..she asked me to take out pictures of Ratika and Akshay from her purse so she could look at them to help relax…."so a couple of inanimate, 2D pictures of our kids helps her relax" I thought…."and what about this flesh and blood, charming, 3D entity- moi - that was within a couple of feet of her?"……I see where I rank in the scheme of things….

Berta started of with a physical examination to "baseline" Shelly's condition…..how rigid or flexible the limbs are….how is she walking….does she have any balance issues…any pain…level of tremor….level of dyskinesia….etc. Shelly's tremors were pretty active at this point and she was feeling a fair amount of general discomfort due to the lack of meds for the previous 12+ hours. Berta then checked the current level of the voltages and the electrodes that were active. There are 4 electrodes per lead, numbered 0,1,2 and 3. The left brain (right body) lead had electrodes 1 and 2 active at 1.9V and the right brain lead had electrode 1 active at 1.7V. She then moved up the voltage on the left brain a couple of notches to 2.1V. Shelly started to feel "heavy" in her chest and her mouth started to twist a bit. She could still talk but was now breathing in little gasps…closing her eyes…..wanting Berta to revert the change. Berta in her gentle voice suggested we stick with it a little longer….asked Shelly to breathe deeply….which isn't easy when you're gasping but Shelly managed a couple of them…..the heaviness and mouth twisting faded…that was good. There appeared to be some mild improvement in her right arm tremors. Berta then checked her right arm and right leg rigidity and felt that there was quite a significant improvement….Shelly seemed to concur….but she wasn't feeling particularly charitable at this point in the game…..I guess it's hard for those of us that don't have electrodes implanted in our brains to really understand how it feels to have voltages in your brain yanked around by someone else with a remote device while they're asking you to be calm and breathe deeply knowing fully well that you haven't had your normal medications, that you are so dependent on, for the last 15 hours….."how big a deal could 0.2V be anyway" you think…..and then you see how drained Shelly is both physically and mentally….and it's clear you…er I… don't have a clue. Shelly had been sitting in a chair all this while and really wanted to lie down for a bit. She lay down on the examination table and was out like a light in a couple of seconds. Berta let her sleep for about 10-15 minutes before she continued.

She moved the left brain voltage up another notch to 2.2V. This time there was no sensation of heaviness or any mouth twisting. It's not clear whether the tremors are any better. Berta leaves the left brain setting alone and moves on to the right. Shelly goes through a somewhat similar experience on the right brain. Berta moves the voltage up in stages to 2.1V. There is still some tremor but the left leg rigidity also seems to have improved though not as much as the right side. Berta makes Shelly walk up and down the aisle to assess things. Shelly comes back into the examination room and wants to lie down for a bit….which she does again for about 15 mins. She's even more tired at this point. Berta, all along, has been most gentle and caring. It really does make a difference to the whole experience. Shelly is back in her chair and Berta wants to try a couple of more things. At this point Shelly really isn't ready for more. She wants to have her meds. Berta lets her take them and then asks again if she can do a bit more tweaking. Shelly agrees initially but then quickly backs off. "I can't take this anymore" she says as tears start to well. She appears to reconsider for just a second but then the flood gates open….." I d d don't want to do this anymore"….heaving sobs….Berta leaves the room for a few minutes while I hold her and calm her down…she does in a couple of minutes…..I bring Berta back and we schedule a follow up for next Monday. Shelly is doing fine by now….even mildly embarrassed and apologetic for breaking down….with what she's going through, apologies are just not warranted….she's tons braver than just about all of us combined…..

A bit about electrodes and fields for those that are interested. There are two ways to stimulate the brain – using Unipolar fields or Bipolar fields. Unipolar fields required only a single electrode (there could be more but not required). The selected electrode is negative polarity and the case of the neurostimulator is positive. Shelly's current settings are all Unipolar. Unipolar fields have a broader radius and therefore as the voltage is increased the field can "bleed" into adjancent areas of the brain that control things like sensory functions and can cause side effects – e.g. the mouth twisting. Bipolar fields have one electrode positive and one negative with the case being "off". Different electrode combinations can be used to create the bipolar fields. Bipolar fields are "tighter" and can allow one to go to higher voltages without some of the side effects. They also tend to consume less power and hence extend the battery life. The point of rambling on about this is that this is what Berta will be trying next Monday.

And for those that are still reading….congratulations…..here's something you can impress your friends and neighbors with when they ask you what kind of battery the neurostimulator has….and you say…."it's a silver vanadium oxide cell"……they go "ooooooh, you're so knowledgable". That's OK, you can keep the credit all to yourself…no one has to know I told you…..

Thanks again to all of you for the support you provide Shelly….the journey would be so much more challenging without you….

p….e….

Programming session postponed

2006-01-11T15:12:00.000-08:00

Shelly's programming session scheduled for tomorrow morning has been postponed to next week....something to do with Dr. availability....

Surgery + 4 weeks

2006-01-10T12:21:00.000-08:00

Hook 'em Horns baby....

The Eyes of Texas are upon you,
All the livelong day.
The Eyes of Texas are upon you,
You cannot get away.

Actually what I can't get away from is the "cedar fever" in Austin these last three days. Killer allergies.....itchy eyes....stuffed nose.....ugh....good thing I'm headed back to rainy, cold Seattle tonight.

Shelly's having a good day so far today. Last night around 2130 she thought things weren't settling after the last dose of the day....but then it did and she slept all the way through till 0745 this morning....sweet.....things have been better in general since last Friday....

The more I read about the post-surgery period, the more I'm beginning to understand that this stuff is very non-deterministic. The theme that emerges is that individual experiences vary quite a bit and that the daily, weekly or monthly ups and downs are all part of the game. It's exactly 4 weeks post surgery today.......just 4 weeks.....there's only been 1 (psuedo)programming session so far.....the first real session is scheduled for Thursday this week......this journey has barely started.....there's MUCH to look forward to......I'm into this tiny font, big font thing.....don't like it?....sue me :)

headin' to the airport in a few minutes.......it'll be good to get back home...

p.....e.....

Friday Jan. 6, 2200 hrs. update

2006-01-06T22:21:00.000-08:00

The last couple of days have been a bit of a downer. No real Red periods, but more YELLOW than before. Last night (Thursday) was pretty rough. Shelly did not get much sleep.........she was very restless with tremors in her left leg that was causing her much discomfort. My speculation is that she was a little depressed from the last two days not being as good as the prior week (which had been pretty darn good).....the anxiety in turn increasing the tremors....it can be a vicious cycle....she gets up at 0200 and goes down to lie on the couch and watch tv......she comes back around 0430 in not much better shape....

"Why is this happening to me Raju?" she says breaking down....."I don't think it's working any more"........quiet sobs.....left leg and right arm shaking a bit. I try to tell her it'll be OK.....she doesn't want to hear it....."Don't pacify me" she says.....crying again....I start to try and "fix" things by talking about managing expectations....dumb...dumb...dumb......she not looking for me to say anything or do anything....other than listen and just be there....I ultimately figure that out....and do just that...she settles down.......I decide to give her some anti-anxiety meds.....very small dose....it seems to do the trick.....she falls asleep quickly and sleeps well for the next three hours....well past her normal 0600 morning med dose time....I wake her to give her the meds...she falls back to sleep....i leave for work...

Her day has been somewhat YELLOW.....she did go out for a bit with Ratika and Anisha (my sister's daughter who is visiting from Dallas).....she's in bed now....a bit pooped...hope she has a restful night...

I'm off to Dallas and Austin for the next four days. I feel bad about not being with her....but mom and dad are here, so I'm not worried. I'll be back Tue night.......her next programming session is scheduled for Thursday morning....

better get to bed.....got an early flight....

peace.....easy...

Texas Longhorns are #1 - YEEEEEHAAAAA

2006-01-04T23:01:00.000-08:00

Man, what a Rose Bowl game. Just in case you live on a different planet......USC played Univ. of Texas in the BCS championship game this evening. Texas comes back from a 12 point deficit late in the 4th quarter to take a 41-38 lead with 19 secs left......what a game by in-Vince-able Young....I'm hoarse from standing and screaming continuously for the last 6:42 mins of the game...which was more like 45 mins of real time.......

Sweet....Sweet....Sweet........in case I didn't mention it.........SWEEEEEEEEET......

Akshay is on cloud 9...er....99.....Ratika is giddy....but how can we tell you wonder :)

Shelly's had a pretty GREEN run since my last post. Today was a bit shakier.....a few more tremors this afternoon and evening.....more Yellow than yesterday.....but still pretty good. Last night she reduced her last dose of the day of Sinemet by 1/2 a pill....i.e. she took 1/2 a pill instead of 1.....we were experimenting to see if her dyskinesia, which had picked up a bit since she started taking an extra pill of Sinemet, would go down. I think it did.....her dyskinesia today was much better....but it may have resulted in the shakier tremor day....not sure but likely. She's taken her full dose tonight. I think we'll leave it alone till her next programming session which has been rescheduled for next Thursday.

So things are holding up so far.....Shelly is doing a lot better than she was a week ago....and that's what matters....ultimately it's all relative.....the following was in a daily A.Word.A.Day email that I subscribe to from wordsmith.org (try it, it's really good...)......

A story goes that a man prays to God. God appears and the man says, "Lord! Our billions of years are your one second. Our billions of dollars are merely a penny for you. Could you grant me a penny?" God smiles, says "Certainly! Back in a second," and disappears.

I can't but help smiling every time I read it......see?....there you go....you're smiling too, arent' you?.......hehehe....

peace....easy......

2006 - Year of the GREEN

2005-12-31T23:15:00.000-08:00

2005 has been a very fast but very memorable year. There are many things to give thanks for....the events of the last few months have really put into perspective for me what really matters; what I'm truly grateful for:

Two fantastic children in Ratika and Akshay. Shelly and I are truly fortunate to have such loving, caring and full-of-life children. What more can one ask for....
The love, caring and support we receive day in and day out from our extended family and all our friends. I've been truly moved by how much this has meant to Shelly and me and the kids during Shelly's surgery. It's brought me closer to many of you out there who might be reading this. I'm truly grateful.....thank you for being there and for everything that you've done.
The DBS surgery that has given Shelly the opportunity to potentially reset the clock 5-10 years. I know this is a long journey and we've barely begun.....I couldn't be more happy that Shelly has taken advantage of this opportunity.....I couldn't be more proud of the way she's stepped up to this very difficult ordeal. What a lady!

As we ring in the new year all I can say is a heartfelt THANK YOU to each of you for being part of our lives. It's got to be because "somewhere in my youth or childhood, we must have done something good".

I can't think of a shorter and sweeter wish for each of you in 2006 than....

Peace.....Easy.....

New Years eve eve update

2005-12-30T22:00:00.000-08:00

Well whaddya know....Shelly actually slept real well last night. It may have been the first night in recent memory where she actually just slept through from 2200 to about 0400....it was a pretty GREEN night.
Yeeeehaaaaaaaaa!

And....that's not all.....today only had tinges of Red, some Yellow but mostly GREEN.....and that's worth another Yeeeeeeeehaaaaaaaaaa! We just returned from a baby shower for a couple of hours and she did great.

A day does not a trend make....but it's nice to have all the same.....let's savor it with her....but don't forget to manage that E thing....

Peace....easy....

First real programming today...

2005-12-29T22:40:00.000-08:00

Met with Dr. Alida Griffith, Shelly's neurologist, this morning at 0800 to begin the programming. Dr. Griffith wanted to do some "quick" programming this week and then follow up next week with the full session. The full session is conducted by another lady, Berta, who is a PhD, not a medical doctor and is a programming specialist.

Dr. G started out by varying the voltages from across a pretty wide range to observe the effects. "This is going to feel weird but it's all reversible, so don't worry about it" she told Shelly. At higher voltages Shelly would feel strong tingling on the side of the body that was being manipulated. At some voltages her mouth would sharply pull to one side......or her hand or leg would feel very heavy....or her mouth would feel very "funny" and uncomfortable. When she first came to the doc's office, Shelly was feeling good....her tremors were under control....as Dr. G began the programming Shelly's anxiety levels went way up........she would start breathing heavily.....perspiring...the anxiety was actually causing tremors much more than the PD.....not exactly the best situation to program a DBS patient. The programming trial and error continued for an hour....Shelly remained very uncomfortable.....finally after about an hour Dr. G settled on a few settings - different voltages on different electrodes....remember that there are 4 electrodes per lead....changed the pulse width....changed the polarity of some of the electrodes.... she then asked Shelly to go take her meds and calm down for a while and then come back and see her. Shelly and I walked around for about 45 mins.....she had settled down quite a bit by then.....Dr. G then did a quick check up....no more adjustments were made.....she asked us to come back in next week for a much longer "real" session with Berta.....this one will last all morning or longer.

I took Shelly back home and then went to work. From 1000 till about 2000 Shelly had a very GREEN day. She called me several times to tell me that she was doing much better than yesterday. RED durations were minimal or not present. Tremors between med doses were pretty mild.....she didn't have to have anyone "put weight" on her hand or leg to help her settle down.....she was feeling good and positive. At 2000 after dinner she commented "this programming seems to have really helped today hasn't it?".....I grunted something in response....not ready to really acknowledge it. She took her last dose for the day.........she was feeling good.....she asked me to take her for a quick visit to a holiday party in the neighborhood......i did...there was a mild tremor which she assumed would settle down in a few mins as it had during the day.....wrongo moose face......it wouldn't settle....we left the party after 5 mins.....came back home.....she went straight to bed.......extremely restless.....a bit nauseous......she felt "funny" in her mouth.....her head was aching......the tremors continued.....she had to get up and throw up a bit.....she came back to bed.....couldn't settle down....."mujhe bahut ghabaraahat ho rahee hai" she says in Hindi.....the anxiety (ghabaraahat) is back....."don't leave me and go" she says......"I want to see my mom"......didn't she just say she wanted to be with me? :).......I give her some anti-anxiety medication which the doctor had prescribed....she gets up and goes downstairs and lies down for a while on the couch next to her mom.......I start to write this update......I hear her moving around in the kitchen......Akshay comes back from a Husky b'ball game......"how's mom doing?" I shout down to him....."ask mom her color".........."she says it's GREEN, but I think it's still YELLOW" he shouts back....Shelly wanders up a few minutes later......"I'm GREEN" she says....."go to bed" I suggest........she does....actually listened for a change....."come to bed" she says....."I will in a bit" I say......she communicates her displeasure.....

Today is typical of what I'm been trying to tell Shelly and all of you it's going to be like for a while:
up...DOWN.....UP.....DOWN....kinda up

Let's hope the night is UP......the down_fast_asleep kinda UP......never mind...... :)

I hear light snoring.......maybe, just mabye........

Peace....easy.....

Not to worry.....I'm still here.....

2005-12-28T20:25:00.000-08:00

Back after a bit of a hiatus....

From a surgical perspective Shelly is healing very nicely. The incisions in the scalp and the chest look "good".....relative to how incisions could look.....I'll spare you the pictures....they also remain nicely closed...which is always a good thing when it comes to incisions that aren't intended to remain open. The incisions are a bit tender, especially the one behind the right ear where the wires all connect. While it's really easy to feel the neurostimulator below the right clavicle she's become used to it and doesn't "feel" it any more. No headaches or throat aches. She complained of a bit of queasiness yesterday but no bouts of nausea like she had in the first couple of days after surgery. Her energy and strength are good and she's active - physically and "feist"ily. All in all a good report card on the surgical and general health front.

The story on the PD symptom front is mixed. Once the favorable results of the "micro lesioning" dissipated as the brain swelling reduced, the tremors in her right hand and left leg have returned at a pretty high level - higher than pre-surgery levels. We've been tracking her condition through the day and night in 3 states:

RED - the tremors are essentially incapacitating; she needs to lie down with pressure being applied to her hand or leg and is generally very restless and uncomfortable. It can be exhausting. The RED periods start as the PD medication (Sinemet and Requip) wear off and persist till some time after she takes the next dose.
YELLOW - active tremors with some level of discomfort but is able to maintain some level of activity. YELLOW states typically occur between RED and GREEN (duh) but not always. Sometimes she can go from GREEN to RED in a hurry.
GREEN - she's tremor free and feeling good. GREEN typically follows YELLOW (duh 2); on rare occasions she can go from RED to GREEN.

Currently it feels as if the duration of the RED periods are longer than pre-surgery. Said another way the GREEN periods are shorter than pre-surgery. It was really bad last Friday - more than 6 hours of RED between 0600 and 2200. It's improved since then; yesterday she had about 2.5 hours of RED in the same period. She's had to add 1 additional dose of Sinemet in order to do that....not what she was expecting to be doing. The higher tremor levels has been a major source of frustration for Shelly and counter to her and our expectations. On more than one occasion this has brought her to tears....."I don't think this is working Raju...I don't want to be this way" she sobs. That helpless feelling envelopes me again.....I look around for that magic wand....it remains elusive. Patience and resolve.....Marathon not a sprint.....logic offers little solace in these situations. One has to just suck it up and wait for that GREEN moment.......she comes skipping down the stairs....."I'm GREEN" she beams and giggles and holds her hands out in front of her...they're steady......she heads straight for the cell phone and browser......if it's my lucky day then I get a quick hug before she heads for the cell phone.....we've all come to cherish that "I'm GREEN" moment.....one can feel the family collectively exhale and visibly relax....GREEN, YELLOW and RED have become part of the lexicon at home.....it's funny how a declaration of a "color" can trigger actions, set the mood and influence plans.

Just so you don't think things are bleak or anything like that.....I think this neurostimulagizmo is actually having positive effects already. Shelly's dyskinesia - the uncontrolled movements of the leg or the writhing movements of the neck - are in fact significantly better than pre-surgery levels....to the point that she's stopped taking Amantadine wihch she had been regularly taking to help control the dyskinesia. Till a couple of days ago I would have said that her dyskinesia levels were about 2-3 post surgery compared to a 10 pre-surgery. With the increase in Sinemet over the last couple of days the dyskinesia has increased (as expected) but is still significantly lower. She is still off the Amantadine. So clearly the NS is working......and the voltage levels are still well below "typical" levels. Her left brain (controlling the right side of the body) is at 2.0V and her right brain is at 1.3V. Typical levels tend to be between 2.5V and 3.5V.....so there's a lot of room for improvement here. ....which brings me to the next topic....

In spite of all the reading I've done about DBS before the surgery, it's pretty clear that I don't really know squat about it. As Mark Twain so eloquently said "It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so." In particular I've discovered that I didn't really understand (and still don't really) what the "programming" phase really entails. This notching up of the voltage a few tenths of a volt at a time isn't really what its all about. In fact all my recent reading suggests that the real programming has not even really begun. It's not about just turning on the NS. We're going to see Shelly's neurologist tomorrow morning and again next week and that's when I think the start of the real programming is going to occur. It's all an empirical process that varies quite a bit from patient to patient. It involves observing the patient's symptoms, changing parameters on the NS - voltage, pulse frequency, pulse width, field "shape" (mono polar vs bipolar) - till you see visible changes in the patient's symptoms or how they feel, setting the medication levels and then giving it several days of run time.........the effect of the changes may take several days to become visible...symptoms that appear to have gone away could re-occur or those that don't appear to have been improved could in fact improve after a few days....the "speed" or the "persistence" of the "knob" seems to be somewhat unpredictable..........tweak the settings....give it more run time......observe patient response......this is absolutely key....the patient has to take pains to "log" the results carefully and provide the data back to the "programmer"...."I feel bad" or "it feels a little better" isn't sufficient feedback......need more specific feedback like "my tremors are a 2 now vs a 5 before but my speech is now feeling a bit slurred".....the "programmer" can then correlate this with prior experience with other patients and tweak specific things.....reduce the Sinemet or change the polarity of the field etc.....

I'm rambling a bit.....but hope you get the picture. There are no "standard" answers in this business. Any specific patient's experience is not a good indicator of what steps to take with the next individual. One has to have a broad sample of patients from which to derive general "trends" that form the basis of the initial setting. After that the specific patient has to guide the tweaking. All my reading in the last day or so suggests that this can take several months. Symptoms can get worse before they get better. Optimizing one symptom can make another worse. At that point it's all a tradeoff.....what do you value more?.....which thing are you willing to live with?....

Which brings me full circle to Expectations......managing E is the name of the game......you can't get too excited because something seemed to get better right away....you can't get too depressed because something got worse.....what matters is the sustained behaviors....one has to lift one's head above the transient "noise" and observe the long term trends. It appears from all my readings that the long term trends for people who have undergone DBS is quite positive. Everyone that has gone through it invariably goes through ups and downs but in the end they're happy for having taken the step.

It's only been 15 days since the surgery for cryin' out loud. This part of the journey has barely begun. I remain very hopeful and excited for Shelly. She's done an outstanding job of dealing with all she's had to deal with these last 2 weeks. One can't but admire her resilience and positive outlook.

Rock on Shelly........

All of you out there......hang tough....keep sending those positive vibes....

We see Dr. Griffith (Shelly's neurologist in Kirkland) tomorrow morning at 0800....

Till tomorrow....peace.....easy....

We're Back Home!

2005-12-24T23:20:00.000-08:00

Too pooped to type more.....Shelly had a mixed day but not too bad....flight was 2 hours late...but we're here....in one piece...

the journey continues on our own turf......

peace....easy.....MC

Sat 0915 update

2005-12-24T09:19:00.000-08:00

Shelly had a very good night. She slept from about 2030 till 0430 this
morning. An extra dose of medication may have helped. She appears well
rested for a change. Still some tremors but all in all a much better night.
A little woooohoooo.

Need to pack. Later.......
------Rajan (from my Blackberry)

Friday 2200 update

2005-12-23T22:00:00.000-08:00

Hotel Internet is down. Hence the sparse update.

Shelly's had a decent evening after a rough day. She's been sleeping for the
last couple of hours with some extra medication. Better than a poke in the
eye with a stick.

We've started packing and should be airborne to SEA at 1655 tomorrow....I
think. We're all reeeeeeeally looking forward to getting home. It feels like
forever since we left.

Keep those good vibes coming. Peace easy.
------Rajan (from my Blackberry)

Tuesday 0900 update

2005-12-23T08:51:00.000-08:00

Even tougher night. She basically was not able to sleep at all. Tremors persisted through the night. She had her normal 0600 meds a little early around 0520. Got a very short amount of relief....maybe 30 mins....and is currently back in "red". I'm talking to Shelly's neurologist in Seattle as well as Dr. Starr's office.....if I can raise anyone....they're closed for the holidays.

He conquers who endures.
-- Author: Persius

Endure we must.....

Thursday 9:45 p.m. update

2005-12-22T21:40:00.000-08:00

Tough day today. Between 6 a.m and now she had about 5 hours in a "red" state i.e. strong tremors that are essentially incapacitating. She had good "green" spells from 10-1, 2-4 and 7-9. We went to the Japan Center for a brief outing. Healthy Taco Bell burritos for dinner. I decided to step up the NS voltage to 1.0v. She just went to bed to attempt to get some rest. Let's hope there's some to get....

Tomorrow's another day......opportunity to be hopeful anew. Remember.....marathon.....not a sprint.

Peace easy.....

Thursday 0500 update

2005-12-22T05:33:00.000-08:00

Shelly had a good Wed evening till she went to bed around 10:30 p.m. The tremors then picked up and she didn't get much sleep at all through the night. She got out of bed at 4:00 a.m. and had something to eat. After watching the tele for a bit she's gone back to bed.....I hear some light snoring, so I hope she gets a bit of rest and that the morning meds at 6 a.m. bring her some additional relief.

The predictable un-predictability is plain maddening......I already knew that......still maddening....

All systems are a GO - 0.8 volts and ticking nicely

2005-12-21T17:29:00.000-08:00

"I'm so excited today" I heard Shelly telling someone on the phone a few minutes ago.

Got back a few minutes ago from the follow up appointment with Dr. Starr. He was very pleased with the progress Shelly has made. He removed the sutures on the scalp.....with only minimal squealing from Shelly. He also removed the "steri strips" that covered the dissolving stitches in the chest incision. He seemed particularly pleased with how that looked.....which only goes to re-affirm the old adage that beauty is in the eyes of the beholder. She can now take a shower......thank you Lord :)......but no scrubbing the scalp for a while till the healing is further along. The bumpiness in her scalp along the incision line will subside except for the 2 end caps that plug the hole where the leads are implanted.

The next step was to program the neurostimulator to allow patient control. There are essentially 3 variables: the pulse amplitude, frequency and width. Using a "master" control the doctor can set the min and max ranges for these variables. The patient can then adjust the neurostimulator using a hand-held device within these ranges. For the first pass the only variable that can be adjusted is the pulse amplitude. The range has been set to a min of 0.5V and a max of 4V. There are separate controls for the left and right side of the brain. Left side controlling the right side of the body and vice versa. Post surgery the device had been turned on at a 0.5V level. Today Dr. Starr stepped it up to 0.8V. Shelly felt a very momentary tingling sensation in the chest. The voltage level is still pretty low so there was no "miracle event" that occurred today.....as hopefully I've been reminding Shelly and all of you to the point of irritation. Shelly had actually done a great job of managing her expectations and she set out for the appointment today with very neutral expectations. I'm proud of her....it's a tough thing to do in her position.

The clinical nurse Monica Volz then introduced us to the patient "Access Therapy Controller for Model 7428 Neurostimulator" shown in the image above....the thing that looks like a remote control. With this device Shelly can turn on and off the neurostimulator (NS), change the voltage (and other variables when enabled) and check the battery status. To program the device one simply holds on the check over the NS and presses buttons. It only works when in really close proximity of the NS.....any visions I had of pointing it across the room and programming Shelly evaporated when I learned this....darn.....We practiced turning it on and off and changing the voltage. It's really easy to use. As we were doing this Shelly was in such awe that she kept alternating between saying "O my God" and "wow".....causing Dr. Starr to ask her if she was feeling OK......I just write it like I see it folks...I don't make anything up :)......

So what happens over the next several weeks? When and how do you know if this thing is actually working? you ask.....and if you're not I'm going to tell you anyway....essentially every few days we step up the voltage a few notches....for e.g. on Fri we'll take it up to 1.0V from 0.8V where it is right now. Then observe how it feels. If it feels uncomfortable for some reason.....if she feels tingling which doesn't go away for e.g.....then we back off the voltage. Or she could find that at a particular voltage level the dyskinesia gets worse. This could be an indication of over-medication so she might reduce the medication levels. If it's time for a dose but she finds that she doesn't really need it then she could choose to delay the dose....or she could decide to take 1/2 the regular dose and see how she does. Basically a trial and error process based on how she feels...her own body is the feedback mechanism. There is no magic voltage at which...boom....things suddenly feel better. It's a slow optimization process.....we have to resist the urge to just crank it up high and see how it feels. I can't tell you how I'm dying to do just that.

Shelly just took her last regular dose of medication for the day. Her tremors just settled. She's in good spirits and hopeful for what the future might bring. The really hard thing about this whole process is that one can't really predict what's going to happen. The "knob" is a slow knob - you turn it but you can't see the effects right away. Not great if "instant gratification" is your thing.

p.s. Apparently Shelly can go through the airport security device without setting it off. We'll find out soon enough.

So the next leg has begun.....nicely. No more planned doctor appointments before Jan. 25 when we come back to SFO for a followup. We can't wait to get back home.

Wanna take me on?...huh?...c'mon....c'mon....I dare you...

2005-12-21T10:08:00.000-08:00

We're feeling feisty this morning, are we?
You slept reasonably well till about 3 a.m. and then were puttering around. Shouldn't you be a little pooped? Huh?

Tuesday 1930 update

2005-12-20T17:30:00.000-08:00

The morning started off well. After a good breakfast Shelly's meds kicked in and she actually went out for a drive with Lisa B and her mom.....all over SF. Things then got a little tougher in the afternoon. The tremors were quite strong, her right arm was very painful (unrelated to the surgery) due to the stress and rigidity of the tremors and she had a very "down" couple of hours. She felt that none of her family - me, Akshay, Ratika, her mom - understood what she was going through.....I suggested she talk to her dad....she did....she then concluded that he didn't understand either.....it was all very funny.....she kept swatting away the phone....we were all laughing because it was so hilarious....It was so sad....because she was serious.....it's hard to know whether to laugh or cry....the kids were laughing and hugging and consoling Shelly....she was teary eyed and sad but so sweet and cute....we just re-lived this all together over a pasta dinner amidst a lot of loud laugher and Ratika's every so joyful and loud shrieks and giggles.....moments to cherish.....it's only possible because Shelly is such a great sport and because there's so much real love and caring at the core of our relationships. We're truly lucky.....

Post her meds around 2 p.m. things settled back again and she had a great run for the next 4 hours or so.......her evening tremors are now starting to pick up just a bit.....but she has another dose left....so I'm expecting good things...

She's back on the computer and phone. Imagine that. Evidence attached.

Wednesday 3 p.m. draws ever so close.....to heck with managing expectations I'd like to tell myself.....not quite that easy however.....the next leg of this journey is coming up....

Monday night update

2005-12-20T07:14:00.000-08:00

Good news gang.......you guys have been paying attention and sending the zzzzzs I requested.....Shelly had a pretty darn good night.....AND.....I didn't give her any additional medication...which I'm very happy about....so let's all give her a little wooohooooo for that.

One could define "happiness" as the sum of these little moments. In stressful times they seem particularly notable.....and help one "get through it"...but they occur during the "normal" periods too....and we should remember to capture, savor and cherish every one of them.

Shelly' had a bite to eat......with some tea.....she's gone back to sleep.......

I'm savoring.........

Later.....

Monday afternoon/evening update

2005-12-19T20:11:00.000-08:00

She's had a bad tremor day. They're just not settling with the normal meds. We've had to give her the meds a little earlier than normal to get even some measure of relief. I might have to give her an extra dose today so she has a chance at a halfway peaceful night. An overall frustrating day for her so far but with a couple of short interludes of "rest".

It continues to be a good day for the throat soreness and appetite. She's been relatively pain free. This afternoon she had her favorite meal from the local North Beach pizza joint that also serves great pasta stuff......fettucine primavera with cream sauce......she got to eat it during one of her "rest" interludes.....she even called me on the phone to tell me how much she enjoyed it.....thank the Lord again for these small victories.

Looking forward to a mostly restful night for Shelly......send your heavy zzzzzs this way.....peace easy....

Sunday night / Monday a.m. update

2005-12-19T07:34:00.000-08:00

She had a pretty rough night. Slept for the first few hours but then was awake for the rest. Her tremors are returning to pre-surgery levels. Yesterday and this morning her Parkinson's meds are not being very effective....not clear why....but then this happened with some frequency prior to the surgery....so may not be related. Nevertheless it's frustrating......which resulted in her breaking down in the middle of the night crying that the procedure wasn't going to work.....how I wish there was some magic dust I could use to make things better instantly.....no such shortcuts.....we're going to have to slog through it....with patience and confidence.....

The good news is that she continues to eat better.....her throat trauma appears to be getting better...she had some yogurt, a protein shake (which she detests) and some bread "upma"....which she loved....it's made of bread (duh) cut up into small pieces and sauteed with a small amount of seasonings....touch of oil, mustard seed, some green and red chillies etc.....

She's watching a movie right now.....trying to ignore her tremors.....she's on her phone with Ratika and sounds cheery.....listening from the other room one can hardly tell she's just been through brain surgery just 5 days ago.....wierd......

need to call Monica Volz...the clinical nurse....back later.....

Day 3 - Post Discharge

2005-12-18T11:09:00.000-08:00

Shelly's throat soreness and discomfort continued through the day yesterday but it has improved. The pain got intense on a couple of occasions and we called the on-call neurologist at the hospital who re-assured us (for the 5th time :) in the last 3 days) that there's nothing to be done other than get through it. To quote Churchill "If you're going through hell, keep going".

So Shelly got up this morning......very hungry.....and insisted on eating a couple of McD's egg Mcmuffins with hash browns. Not exactly doctor recommended post surgical recovery fare......but what the heck.....she scarfed it down in no time flat. And barely complained about her sore throat. She also ate some yogurt and khichdi (a healthy rice and lentil preparation). As I write this she's chowing down pomegranate....anyway, what does one call each "unit" inside a pomegranate?....not a seed cuz that's inside each "unit"...oh well....there's so much to know in life....

Shelly slept reasonably well last night.....

Her tremor intensity is starting to increase......if pre-surgery tremor levels were 10, she's experiencing a 6-7 range now....this is all expected as the brain swelling subsides and the "micro lesioning" effects dissipate. Her dyskinesia levels are still substantially below pre-surgery levels....which is immensely helpful.

Shelly continues to be quite active......her cell phone conversations are robust.....maybe a tad too much, so we confiscate her phone every once in a while.....btw she now has to be conscious about the fact that she has electronics embedded in her and needs to be careful about interference from external devices.....external magnets.....power lines.....generators......transmission lines....airport security scanners.....store theft detexectors....etc....etc...including laying the cell phone earpiece over the neurostimulator in the event it could turn it off.....a remote possibility but a possibility nevertheless.

Off to get a cup of tea downstairs....more updates later.......peace easy...

The implanted components of DBS

2005-12-17T14:06:00.000-08:00

Shown from left to right are the Kinetra Neurostimulator, the Extension and the Lead

Neurostimulator:

A pacemaker-like device that contains a battery and microelectronic circuitry for controlled electrical pulse generation. The neurostimulator is implanted subcutaneously near the clavicle, and generates electrical signals that are delivered by the extension and lead(s) to the targeted structures deep within the brain.

The Kinetra® dual-channel neurostimulator* (shown) accommodates two extensions/leads, and thus provides bilateral neurostimulation from a single neurostimulator. The Kinetra neurostimulator is 61 mm x 76 mm x 13 mm and weighs 83 grams.

DBS™ Lead

Four thin, insulated, coiled wires bundled within polyurethane insulation. Each wire ends in a 1.5 mm electrode, resulting in four electrodes at the tip of the lead. The DBS Lead delivers stimulation using either one electrode or a combination of electrodes.

Extension:

An insulated wire that runs subcutaneously along the head, neck, and shoulder to connect the lead to the implanted neurostimulator.

Day 2 - Post Discharge

2005-12-17T08:14:00.000-08:00

Shelly had a decent day.....a few ups and downs.....but nothing really unexpected.

She struggled most of yesterday with soreness and discomfort in her throat as well as sharp pain in her ears (or in the region of the ears) whenever she swallowed. I talked to Monica Volz, the clinical nurse, and she indicated that the soreness in the throat was most likely due to the intubation during the latter part of the surgery (when they implanted the neurotransmitter in the chest) and that the pain in the ear region was triggered by the swallowing (swallowing causes the ear to pop) and possibly further exacerbated by "rods" that are inserted in each ear and cranked down tight in order to hold the stereotactic frame (the "halo") tightly in position on the head. Hurts me just to write it....can't imagine how it must actually feel. Good thing they have reeeallly good narcotics :). Shelly did ok through most of the day but then was again very uncomfortable in the middle of the night. She called the on-call neurosurgery resident who confirmed that this was related to the intubation. We were also concerned about any kind of upper respiratory infection.....so the resident's diagnosis was actually a little calming. He suggested we get an analgesic throat spray which Shelly's cousin bought for us at around 3 a.m. She slept reasonably well for the rest of the night.

Shelly also had some increased swelling on her forehead and below her right eye. Again to be expected. In fact I was pleasantly surprised that she didn't have more swelling from the beginning.

As of this writing Shelly's swelling has reduced. She had another episode of swallowing pain.....after some analysis we concluded that drinking liquids and eating soft foods seems to cause less discomfort than other more solid food. We called the neurosurgery resident again and he recommended that she stay on a soft food diet for the next few days. She's hungry and wants to eat more so this restriction is a bit of a pain. Once she gets past this we'll have to arrange a nice food party with all her favorite foods.

Her tremors and dyskinesia are still doing a lot better than pre-surgery. There were a few more occasions of tremors yesterday and today.....again to be expected.

On balance things are proceeding nicely and to plan.

Observations - Day 1 post discharge

2005-12-16T05:43:00.000-08:00

So far so good....it's going as outlined.

I'm sitting in bed...the clock says 5:48 a.m.....Shelly is laying down beside me sleeping soundly....warms the heart to see that....she's had her moments of sleeplessness during the night but that had more to do with some of the post-operative discomfort of the incisions in her chest and her scalp....It's not about the tremors or the movement.....did that register?....it's not about the tremors or the movement......wow..."I can't remember the last time I felt this good", Shelly said a few minutes ago......this is a special moment......I'm savoring it......it'll remain special regardless of whatever lies ahead....this is the very essence of the journey that Shelly's undertaken so boldly and bravely...I feel teary....for some reason it still embarrasses me to tear up....it's not my self-image...

I just got up to give Shelly her regular Parkinson's meds and some Tylenol. I nudged her....she sat up in bed rather effortlessly......she held her hand out.....steady.....popped the pills in.....took the water bottle from me.....held the bottle herself.....steady....took a drink.....plopped back to sleep....snoring. Do you have any idea of the significance of this moment? Wow is the only and completely inadequate description my feeble mind is able to come up with.

Now back to expectations and to the future. The above is all good and is as advertised and is euphoric. Shelly is experiencing the effects of micro lesioning which is related to the brain swelling around the tip of the stimulator lead post surgery. This swelling creates a temporary relief of symptoms. Shelly's pre-operative symptoms are expected to re-appear over the next few days as the swelling subsides. But.....and I think this is a big but......a good big but......I believe this is a pre-cursor of what "could" be when the stimulator is actually cranked up and optimized over the next few months. It's almost like it's a demo of what could, and what I so eagerly hope will, be the longer term outcome.....but we'll have to continue to work for it through ups and downs....patiently....and with resolve.

The next stop is at Dr. Starr's office next Wednesday. We get trained on using the external programming device to adjust the stimulator pulse voltage. This is cool.....a wireless gadget that I can use to control Shelly's brain....hmmmm.....the possibilities are endless :). I wonder if it's Bluetooth compatible.

I can't begin to thank all of you out there for your love and support and caring. I'm almost beginning to take it for granted :)

Shelly is still snoring rhythmically......what more could we ask for...........peace easy......

WE"RE HOME (our SFO temp hotel home that is)

2005-12-15T11:28:00.001-08:00

All done. All's good. Does she look great or what?

Discharge not likely at 10 a.m.

2005-12-15T10:04:00.000-08:00

Stuff just move er DOESN'T move quick around here. We should expect it'll be early
afternoon.

She's doing fine. Much easier for us to visit and spend time with her in
this new location.
------Rajan (from my Blackberry)

a.m. Update

2005-12-15T09:19:00.000-08:00

Came to the hospital with Akshay and Shelly's cousin at 0630. Shelly had not
slept that well through the night. She'd called me a few times during the
night with aches and pains but nothing that was new....that's good.

She was sitting up in bed. Mom and son were particularly happy to see each
other. She looked great. Pls recall definition of great from previous post.
She took a walk down the hall. She got to brush her teeth and freshen up her
face with a wet towel. Her hair is a disaster.....we have some pictures
:).....

She was hungry. They just brought breakfast and she has eaten well.

Movin' along here. Back later.....
------Rajan (from my Blackberry)

End of day update

2005-12-14T21:51:00.000-08:00

Dr. Starr had come by earlier in the evening on his rounds and said Shelly was in good shape. He then turned on her stimulator on the lowest setting which essentially does nothing other than start it up. Tomorrow the clinical nurse will show us how to adjust the device - i.e. crank it up - over the course of the next few weeks. Shelly was then asked to take 3 or 4 walks in the hallway during the course of the evening. She did these very successfully without any dizziness or other effects. She now has all monitoring patches and other tubing.....tethers really......removed except for the IV connections and the finger oxygen monitor. Definitely gives her more freedom of movement. She can now get upand use the restroom on her own. Each little victory counts.

Lest I mislead anyone, when I say she looks great it is relative to how one would expect a person to be after having been subjected to a 9 hour brain surgery with two holes being drilled in the head, wires being "tunneled" through the side of the neck and a sizeable metallic object being embedded in the upper chest...all the while being mostly awake. She's still got a long road to build back her strength and get used to the foreign objects in her head and body. She's currently having a fair amount of nausea and headache. All the same she's still looking, acting and feeling SO much better than she did right after the surgery.

In more ways than one she's "come a long way baby".

It is time to head back to the hotel and catch a few zzzz's. I can't seem to remember the last time I had some. It's all an exhausting blur. Shelly's been drifting in and out of sleep. As she drifts out she whispers "Won't this be great if it really works?"

I soooo hope it does. No one deserves it more.

All the elements are now in place. The discovery begins in ernest tomorrow. Wow!

SWEEEEEEEEEEEET!

2005-12-14T18:36:00.000-08:00

Apologies for the late update....but you'll like it.....I promise...

Shelly has made great progress through the day. She is expected to be discharged TOMORROW morning at 10 a.m. Now if that isn't sweeeeeeeet then I don't know what is.

More to come....

Wee hours update

2005-12-14T04:32:00.000-08:00

Rahul (Shelly's cousin) and I are at the hospital. The recovery room nurse
called at 2 a.m. to say that Shelly was asking for me. I spoke to
Shelly.....she was quite calm....said she just wanted me around if possible.
That was part of the original plan but the nurse had previously asked us to
go home and let Shelly rest. So we had....being obedient and all that. Now
we're back a couple of hours later. It was so tough dragging myself out of
bed after having put my head down for just an hour and a half following an
exhausting 18 hour day. Nothing compared to Shelly's day but my body didn't
seem to want to pay attention to relevant details like that. Fortunately my
mind did and I succeded in getting out of bed and to the hospital.

Except that the charge nurse Wendy wouldn't agree to have visitors at this
time of night in the PACU (post anesthesia care unit). Actually she was mad
that Robin the nurse hadn't cleared it with her first. Anyway once we got
past this internal squabble we were allowed up into PACU to see
Shelly.....with the understanding that we couldn't stay for an extended
period but could visit periodically.

Finally got to see Shelly. She was in and out of sleep but awoke when she
sensed our presence. She was very lucid - a very good thing - and said her
chest incision was really hurting. The nurse have her some morphine and she
settled back into a fitful sleep. I stood by the bed holding her hand for
about 45 mins. She would drift in and out of sleep..... "she looks great" I
was thinking as I stood there.

It's time again to leave her for a bit. We're now in the waiting area in the
lobby. Hospital staff and patient families are dozing fitfully all around
us. I'd love to too but the chairs aren't exactly conducive to that.

Time to go see Shelly and hold her hand. I can't help keeping on thinking
how brave she is.

I'd kill for a latte right now. None to be had.

Later. Peace easy.
------Rajan (from my Blackberry)

Last update today

2005-12-13T22:02:00.000-08:00

At the hospital. Shelly is going to spend the night in the recovery room.
She'll get ICU like care. We just took her some home cooking. She ate well.
She looks so much better already. It's amazing the difference even a couple
of hours can make. Still in pain but that's to be expected given what she's
undergone today. What a brave woman she is. In the midst of this all she
interrupts me frequently to find out if I've called person A or person B to
let them know how she's doing. So they don't worry.

Well we've got past step one of a many step journey. Let's savor this for a
moment. OK time's up. There's much left to do. See the post on Expectations to
remind yourselves. With all of you by her side as you've been all along I
have no worries. Give yourselves a pat on the back. You're truly awesome. My
heartfelt thanks.

Onward.
------Rajan (from my Blackberry)

Surgery is done

2005-12-13T16:06:00.000-08:00

She's in recovery now. Dr. Starr said that she was very brave throughout. It
was a long procedure and the right side mapping took longer than the left.
It'll still be an hour or two before we cab see her.

More later. It's been a long day.
------Rajan (from my Blackberry)

Tentative update

2005-12-13T15:17:00.000-08:00

She's still in the op room and expected in the recovery room in 20 to 30
minutes.

Stay tuned.
------Rajan (from my Blackberry)

Update 1

2005-12-13T10:54:00.000-08:00

After an interminable wait......they called down to say that it's going very
well, she's doing great and sends is all her love.

We're about 3.5 hours into the process now. No specific info on where they
are in the various steps.

Keep sending those vibes.
------Rajan (from my Blackberry)

We're off and running

2005-12-13T08:23:00.000-08:00

We checked in at 0600 with lots of dear family in tow. Shelly was visibly
nervous and emotional. She couldn't be on any meds so she was understandably
in less than great shape. I went with her into the prep bay. She was really
shaking and exhausted and sweating. I got her changed into her hospital gown
and she lay down on the gurney. Changing into a gown even with help was
completely draining. Fortunately she fell asleep for a bit. I was holding
her hand watching her. Every once in a while she'd crack her eyes open
almost as if to see if I was still there. It was good to are her relax a
bit. A few minutes later she opens her eyes, looks at me and says:

"I'm going to be strong for you Raju. I want to spend a lot of time with
you." She drifts back to sleep.

A minute later she opens her eyes again and says "I'm not going to die am
I?" I think for a second and say "I doubt it." I think I see a hint of a
smile as she drifts off again.

Mary Jane, the attending nurse, came in and did the VS thing. Followed by an
anesthesiology resident who put in the IV. Her shakes are pretty strong. Dr.
Starr was here by now and he was assisting with the IV. I was holding her
hand tight. Dr. Starr asked Shelly if she had any questions. She said she
was ready. He and I chatted some more about what was to come. It was
interesting to see him in jeans and tennis shoes. He looked very relaxed.
Good thing :).

Shelly was then asked to sit in a chair so they could get the halo on. We
got her into the chair. Her tremors were really strong now. Her neck was
very stiff and hurting. Dr. Starr decided to give her a sedative.
Essentially 2 cc of liquid valium directly into the bloodstream. It was like
magic. In less than 5 seconds flat she was calm. Like woohooo you can do
whatever you want to me now........

"Time for you to leave now" said Dr. Starr. "I love you" I told Shelly. She
smiled........a distant lala land kinda smile.

Now the real wait begins.
------Rajan (from my Blackberry)

Ssssshhhhh.....she's asleep....

2005-12-12T23:05:00.000-08:00

Shelly's been asleep for the last hour or so......even picked up a bit of snoring :)......if I could wish anything for her right now, it would clearly be a good dose of REM sleep....

talk to you tomorrow.....

Hospital check-in done

2005-12-12T20:27:00.000-08:00

The hospital is a short 7 or so block walk from the hotel. We - Shelly, Ratika, Rahul (Shelly's cousin) and I - set off around 0930 to walk but Shelly wasn't feeling up to it. So we took a very quick taxi ride to the hospital. UCSF Medical Center is a big city medical center like any other.....tons of folks going in and out.....large operation....not exactly the most efficient place in the world. We checked in at one room where Shelly had to sign a few UCSF isn't responsible for anything and if they screw up they're still not responsible and you have to pay them anyways papers. Shelly had pretty bad tremors and couldn't sign but they said I couldn't since I didn't have power of attorney.....so they asked her to attempt to sign and they would accept any mark on the paper.....so that's kinda what Shelly did.....she held the pen against the paper and the movement did the rest :)......so sad yet so funny......I don't mean to be callous.....but I can't but help see the humor in any situation.

We were then given a binder and asked to move to the "prepare" room where we sat around for a while. We then heard someone call for "Shy laa haa" in a very Russian accent. It was the nurse who wanted to do a VS check....that's Vital Signs for the less informed out there :).......to be cool you could look at someone tomorrow and ask "How's your VS today?".....if they look confused you can think "Yesssssssss!". Shelly's VS were fine.....pulse rate and BP a bit high given her general level of anxiety and her tremors in a public setting. The nurse drew blood, which generally for Shelly is torture as they never find the vein quickly.....this time she did it pretty quickly without too much re-prodding....thank the Lord for small mercies. Next, after more waiting, we met with an anesthesiologist who went through medical history etc. He had to use the hospital's software system to enter the answers to the questions and his recommendations. He reminded us every 3 mins. that he hated the software system. "Why can't I just use the paper notes that I used before" he would grumble. "Why can't I just have a little scanner than I can swipe the written notes and it gets entered" he continued. "What do you do?" he asked me. "I pump gas" I thought of replying, not wanting to reveal that I too build software systems. I didn't want him to screw up in his note taking and recommendations because he was mad at all software makers. The blood results came back online while we were talking. "It all looks really good" he said.....no issues. We chatted a little more about what we should expect the next morning and then we were done. By this time Shelly's tremors had settled down almost completely. "It would be really useful if you could have been this way when we first got here" I chide her.....hold it all of you......I'm just joking......Geeeeeeeez......

Shelly had a pretty rough night last night....didn't sleep a wink till 3:34 a.m. when I gave her some Tylenol quick-acting gel tablets.....it appeared she slept for a couple of hours after that. Let's hope she does better tonight.....probabilities are low given the anxiety levels.....but you never know. She told me this evening that part of why she didn't sleep well was that I hadn't spread the flat sheet and the blanket correctly. The things I have to put up with.......I'm practicing my sheet and blanket layout process as I write this....can't mess that up again you know...

Next stop is UCSF Moffit hospital at 0600 sharp tomorrow.....it seemed so far away once....peace easy.....

Day 2 at the Stanyan Park

2005-12-11T12:05:00.000-08:00

Checked into the Stanyan Park yesterday around 3 p.m. It's a historic landmark in the Haight Asbury district of SF. It has a lot of character and is located very conveniently relative to UCSF and Golden Gate Park. We have a very comfortable 2 bedroom suite with a living and dining room and a kitchen. Of course "historic" can also be an euphemism for "very old"......i.e. no central air......individual baseboard electric heaters in each room that have essentially two settings - "too hot" and "can't tell if it's on" . As I said in my previous post....it's all relative. All in all it's very home-y.....which is what really matters. Most important it has wireless internet access that works well in the lobby area....not so well in the rooms.....but it could be not there at all....(there's something gramatically weird about that last phrase).....and what use would that be......remember the it's_all_relative part?

Shelly had a relatively decent night......OK, I think I've exceeded the legal limit for the use of "relative".......the maids in the hotel wear black dresses with white trim....kind one would see in a movie in some large old manor house....one just flashed by my peripheral vision and I thought I'd share my peripheral vision experience with you......click here to disable further sharing of peripheral experiences....these arent' really disconnected thoughts....just parallel processing J

We've had a stream of phone calls all morning.......it's so reassuring to know that so many care.....I know I've said this several times before.....will probably say it a bunch more times....it's pretty special......got a bunch of friends and family visiting us through the rest of the day......bringing food and conversation and love....sometimes good home cooked food can lead the pack....

So much for this random babble.....as Ratika would say......peace easy.....

Well we're off.......

2005-12-10T10:23:00.000-08:00

At the gate now. Flight leaves in an hour. As Murphy would have it Shelly's
meds wore out just as she got to security. The shakes
started......compounded by the fact she's in a wheel chair......lots of
folks watching.......anxiety increasing.......plus the pat down by the
security person.....it hurt to watch......no one deserves this I think.

We move to the gate without further incident. I'm leaning on Shelly's arm to
support the tremors. The meds kicked in. "it's settling down, I feel it" she
says. The tremors die down. She breathes a sigh of relief. It's momentary.
Now that the meds are "on" the dyskinesia begins. The movements are active.
It's hard to sit still. The curious take furtive glances.

This is the life of a Parkinson's sufferer. It can be cruel. But like
everything else in life, it's all relative. We have so much to be thankful
for.

We're on the plane now. Shelly says "this moment seemed so far away
once.....now all of a sudden it's here.......".

I'm so happy it's here. More to come........watch this space. And thanks
again for all your wishes and support.
------Rajan (from my Blackberry)

We're All Proud Of You Shelly

2005-12-09T07:15:00.000-08:00

I'll be there afterall....

2005-12-08T12:32:00.000-08:00

....at Shelly's award event. Sometimes things just work themselves out.

T minus 1 week....

2005-12-06T21:58:00.000-08:00

Hard to believe it's just a week away now. By this time next week Shelly should be out of surgery and in her room. Gives me the jitters.....the good kind. Nervous kinda excitement. Hopeful kinda nervous. Let's-get-it-over-with kinda hopeful. You get the picture....kinda. Sometimes I just start to feel like kinda like you know like kinda yeah you-know-what-I-mean anyways.....typically happens right after I talk to Ratika. She's such a joy.......happy, bubbly joy......drive you bananas joy.....joy nevertheless. Yeah, yeah.....I know....I'm admitting it in public.....a weak moment maybe....it is late at night....I'm mellowing in my old age......but it's true.

I'm in Detroit. I've been gone since Sunday afternoon. It's not a week I planned to be away or should be away. It's a week before the surgery. I'm going to miss Shelly's Top Contributors to the Asian Community award dinner event on Thursday. I'm so proud of what she's accomplished. I really should be there. Our company is working on winning a significant piece of business from GM. GM decided they wanted us to attend a 45 minute meeting on Thursday evening in Detroit. My presence is imperative. These opportunities don't come very often. I don't know whether we'll win it. Which makes it even harder to feel good about missing Shelly's event. There's no way to argue the case for not attending Shelly's event. It's easy to say that I had no choice. Of course I did. I made a conscious choice to travel and prioritize GM.. All I can really do to feel better about it is to rationalize it.......

Which brings me to the subject of taking someone for granted.

It occurred to me that I was automatically taking a number of people for granted. Taking for granted that Shelly would understand......even though I sensed and felt her disappointment at my not planning to be with her. She has never once let her personal needs get in the way of my job.Taking for granted that I could just pack up and leave at a moments notice and that Shelly's mom and dad would take care of her....and Duchess.....and the house....and the cooking....and cleaning....whenever Shelly wasn't up to it. Taking for granted that all her friends....all of you.... would be there for her at moment's notice to help in any way. Taking for granted that I didn't need to worry about a thing.

I feel so blessed that I can, in fact, take many of these things for granted. I feel so selfish that I do, so automatically, take them for granted. When it comes to Shelly's mom and dad, I realize that I've never really stopped to think about how difficult this whole thing must be for them. It must be torture for them to see her in pain everyday.....their only child....so helpless to make things better. They're both very strong people. Shelly's mom.....Champa (pronounced Chumpaa) in particular. When the going gets tough she's in there doing everything that needs to be done. She doesn't panic....she doesn't wring her hands.....she focuses on being available....being there.....being emotionally strong....doing what has to be done.....in very practical ways. She's been that kind of a pillar for Shelly's dad over the 51 years that they've been married. It's easy to take her for granted because she's not offended by being taken for granted. It's easy to assume that because she's externally strong that she's not really worried deep inside. It's easy to forget to reassure her because one takes it for granted that she doesn't need it. That's insensitive of me....it's selfish. I'll have to do better. I'll start by saying "Thank you mom and dad, for all that you are and do. I'm truly fortunate to have the kind of love and support that you provide day in and day out".

It also occurs to me that there isn't a truer form of love, friendship and caring than letting someone take you for granted. Imagine how empty it would feel if you couldn't ever do that...at least for some of the time. Imagine how difficult it would be if you couldn't unconditionally depend on some others. I'm so lucky to have a bountiful supply of "take me for granted" spigots in my life. It comes in equal parts from family and friends. When one has access to so many of these spigots one forgets to be careful in opening them.....letting them run.....wasting the "supply". One forgets that one also has to be a spigot that others can open....unconditionally....when they need it.

It's OK to take someone for granted. It's a necessary part of having a happy life. At the same time one cannot take taking-someone-for-granted as granted. I'll need to keep reminding myself of this.

Thanks Shelly......thanks mom and dad....thanks fam....thanks all-of-you-out-there......thanks for letting me take you for granted once in a while. I'm really lucky.....

T minus 3 weeks

2005-11-22T21:36:00.000-08:00

Just a lot of different thoughts going through my head this Thanksgiving week....

It's 9:50 p.m. I'm watching the Dallas Cowboy Cheerleaders tryouts. This is a grueling affair - physically and emotionally. It's heart wrenching to watch candidates try so hard and get cut in the final stages.Through the tryouts each candidate has a number. After the final cuts the 36 cheerleaders (down from over a thousand candidates) are asked to rip off their numbers, wad it up and throw it away. "You're a team now" says Kelli Finglass the Director of the DCC, "you're not competing with each other anymore, there are no more cuts". You can see the tension just drain out of all the girls....they tear up.....small smiles break out.....turn into beams. A year later they get to tryout all over again to keep their spot on the squad. It touched me Don't ask me why. I'd never make it. I'd be competitive at just about everything.....it's the splits that'd get me.

What's this got to do with this blog? No idea.....does everything have to make sense?

There's much to give thanks for this week. Family and friends being waaaaay at the top of the list. I have to wonder though...."if it wasn't for Shelly would I have any friends"? Shelly and I celebrate our 23rd anniversary this coming Saturday. Whoa! Who even thought about 23. It kinda sneaks up on you. I'm lucky....blessed even. Do I deserve it? I wonder again....then I hear Julie Andrews in The Sound Of Music.....

Nothing comes from nothing, nothing ever could
So somewhere in my youth or childhood, I must have done something good

Yup, that's got to be it......I've no other explanation......I must have slipped up somewhere and done something good....

On the subject of caring......if you care about someone but don't let the person know you care, then do you really care?.....ofcourse you do.....i was that way for much of my life....i've improved somewhat (in my own assessment), but am still like that in many ways. There are many out there who care but don't really know how to express it or feel awkward to share it or say it......I get that......I'm envious of those who can do it naturally.....like Shelly.....or like many of you who have shared your caring so genuinely and generously on this blog...it's soooo much more powerful to be able to tell or show someone how much you care. But I'm equally grateful and thankful for the many of you that care in "private"....it's OK....really.....we know you're there for us.

We had a very close family friend visiting us this past week. We were driving to Seattle one evening.....sans Shelly.....Shelly had been having a pretty rough day.....very restless.....strong movements.....can't relax....can't eat....can't go to sleep.....can't sit down....can't stand up......can't....can't......you can really get a deep sense of helplessness when you watch her in this condition.
"So how do we help her when she's like this?" our friend asks me. "Why are some days so much worse than others?"
I'm not really sure how to answer. "That's the nature of the disease" I say...it's insidious...
"Why doesn't she tell us what we can do to ease her discomfort?" she persists......"I'll do whatever she wants; give her a back rub; just sit with her; whatever".
I think about what I do. Sometimes you just have to let it be.......just have to wait it out.....till the condition settles down......it could be a few hours....it could be a day or two....there's no telling...."Just leave me alone for a while, I'll be fine" Shelly will say on occasion. Grudgingly I do. Helpless. In a weird way one almost starts to feel sorry for oneself....till one realizes that she feels a LOT more helpless than any one of us ever will.....

I so look forward to Dec. 13th. Hope beckons.....

Surgery schedule and hospital/hotel details

2005-11-18T23:06:00.000-08:00

Surgery Schedule

Dec. 12 - Admission, Preparation

Admission

Pre-op work (1 to 2 hour appointment) - meet with anesthesia provider, do blood work, chest x-ray and an EKG

Dec. 13 - Day of surgery

Check-in at 6 a.m.
Duration of surgery is 6-8 hours

Hospital stay of 2-3 days
Sutures removed 7 to 10 days after surgery
Post-operative appointment 4 to 6 weeks after surgery - we'll make a visit to SFO for this.

Hotel

We (Shelly, Shelly's mom and Rajan) arrive in SFO on the evening of Dec.. 10.
We'll be in the Stanyan Park Hotel which is less than a mile from the UCSF Medical Center
Check-in 12/10/05
Check-out 12/24/05 and return to SEA (assuming we have the all clear)

Stanyan Park Hotel
750 Stanyan Street
San Francisco, CA 94117
Telephone: (415) 751-1000
Fax: (415) 668-5454

Hospital
UCSF Moffit Hospital
505 Parnassus Ave.
Room M104J (surgery room not the patient room)

Expectations

2005-11-07T22:55:00.000-08:00

Thinking again......as I'm wont to do.....about anxiety..... fear..... disappointment...... hope...... joy.....

It's important, maybe imperative, that all of us - Shelly, you, me - manage our expectations carefully. Managing expectations isn't simply about keeping them low. That's definitely one strategy. I think it's about keeping it somewhere in the expectation "space" bounded by the following, somewhat conflicting, guidelines:

Whatever we expect with confidence becomes our own self-fulfilling prophecy ----- Brian Tracy
Life is so constructed that an event does not, cannot, will not, match the expectation ---- Charlotte Bronte
The secret to true happiness is a combination of low expectations and insensitivity ----- Olivia Goldsmith
High expectations are the key to everything ----- Sam Walton

Here are a few things for all of us to remember. You've seen some of it before....it may not have all registered. My goal is to ensure that we're all realistically hopeful.

DBS does not alter the underlying progression of Parkinson's disease
It reduces, but does not eliminate, symptoms of Parkinson's disease
The major benefit of DBS surgery is that it makes movement in the off-medication state more like the movement in the on-medication state - i.e. it "smoothes" out the symptoms
It reduces levodopa-induced dyskinesias (involuntary movement), either by a direct suppressive effect or indirectly by allowing some reduction in medication dose
Following DBS, there may be a reduction, but not elimination, of anti-Parkinsonian medications
The major benefit from DBS is not experienced until the devices are fully programmed. This is done between 1 day and 30 days after the surgery depending on the patient's mental state. For some patients there could temporary disorientation or sleepiness caused by temporary brain swelling. Programming is deferred until the mental condition completely returns to the baseline
In the days or weeks after surgery, every prior to definitive programming, the patient may experience a "micro lesioning" effect in which there is temporary relief of some of the symptoms. This effect is related to the expected brain swelling around the stimulator tip. The pre-operative level of functioning will return as the swelling goes down. The patient should not be discouraged when this happens. It is normal.
The patient may experience some facial, neck, or chest swelling and bruising near the surgical sites over the first week post-operatively. Swelling around the eyes often occurs 2-3 days after surgery and may make it difficult to open the eyes. This should resolve within the first few weeks after surgery
For reasons that are not fully understood, the improvement in Parkinsonian symptoms may take a few hours or days to reach its maximal level following a programming change. Some problems may respond more quickly than others. In addition, to realize the full benefit of DBS, medication changes and multiple programming sessions may be needed. Thus it is usually a few months after surgery before the final degree of benefit is actually realized

No one should confuse this post with any lack of confidence on my part. I remain convinced of the value of this procedure. I have a lot of confidence in the abilities of Dr. Starr. I also know that this is a long journey.....we have to take it, as it happens, step by step.

The best thing about the future is that it only comes one day at a time ----- Abraham Lincoln

A Post From Akshay

2005-11-07T09:36:00.000-08:00

I still remember the first time my parents sat Ratika and I down to tell us that my mom had Parkinson’s. It is an extremely vivid memory. We had just moved to Seattle during the summer of 1999. We were living in an apartment in Issaquah, and Ratika and I had just returned from swimming in the community pool. I didn’t know anything about Parkinson’s. I remember crying though and thinking it was my fault that she got the disease. Maybe it was because she would always get mad at me and her stress level would go up, or maybe it was because my sister and I would get in a fight and she hated to see that. Thinking about it, I don’t remember really noticing any signs of it before that day. It was the last thing that would have ever crossed my mind. How could my mom, this “supermom”, have a disease? Not possible.

If you know my dad, then you know me in a way. We have certain tendencies that are weirdly alike, which scares me and my family, but that is a topic for another day. One of them is talking about things…not my forte really. There is a funny thing about my mom having this disease. I have never really talked about it with my dad, mom, sister, or grandparents. Sure we have talked about it, but I have never talked about it with them. I’m not sure why that is, but it is. My mom has asked me how I feel about it, or what I am thinking when I see her struggling with this disease, but I’ve never given her a real answer. I guess I never treated my mom all that differently or I just didn’t want to talk about it. (I’ll try to explain this but it may not convey exactly what I mean…I’ll try anyway). It’s not that I don’t feel sorry for her, which I do because no one deserves to have this disease, let alone my mother; but I feel that if everyone just feels sorry for her that can be pretty demoralizing. My grandma always says that too much of one thing is bad for you. So I feel that when my mom and I interact and we have to deal with her situation, I treat her as I would had she not ever had the disease. I feel that enough people feel sorry for her that she doesn’t need me to do that too. We still fight like moms and sons do, we still disagree with each other, I still make fun of her, she still doesn’t get my jokes, she still asks me about the girls that I like, I still ask her if she loves me more than my sister (which I don’t think is true but she still feeds me the “I love you both equally” line). It is really easy to see that simple things like that make her day a little better.

There will be days when I see her and she cannot sit still, her leg will not settle down, she is in lots of pain. With all that going on she will try to use the computer, or try to call someone, or try to eat food. IT DRIVES ME CRAZY. I will tell her, “Mom! Just stop what you are doing and try to relax.” Yet I know she has no control over that, but I continue to do it. Why? I do not know? It’s moments like these that make me realize that no one truly knows what she goes through. Imagine you cannot type on a keyboard…imagine you cannot change channels on a remote…imagine you cannot open a door…IMAGINE YOU CANNOT JUST SIT IN A CHAIR. I cannot fathom how discouraging it must be to not be able to do such simple tasks. There are times when rather than my mom preparing food for dinner for me, I am the one preparing the food so she can eat. If you know my mom at all, something like that is so agonizing for her because she is the one who should be making dinner for the kids and not the other way around. When she cannot do the things she loves to do, like being a mom, she feels so helpless and embarrassed. Even though I assure her it’s never a big deal, to her it is. Imagine how self conscious you would get if all of a sudden you are in a restaurant and you cannot sit still and everyone is looking at you not knowing what is going on. That’s when you get the questions like, “What did I deserve to have this disease?” or “Why me?” I have no answer to that…yet I usually end up saying some stupid thing like, “Mom, be quiet!” or “Mom, I don’t want to hear it.” But she doesn’t deserve this. It is unfair. I have never been embarrassed by the fact that my mom has this disease. That thought has never crossed my mind. My mom will often apologize to me for not being able to do something or not being able to take me somewhere. My mom is a mom. She likes to be one and likes to do mom things; and naturally she feels bad if she can’t do those things. She will sometimes just apologize to me. I can see why she does it and it’s hard for her not too. But I hope she knows I do not care for a moment that I have to put my priorities aside to make her life easier.

There isn’t really a structure to my little blurb here. I want to thank my dad for starting this blog. It’s pretty amazing. If you know my dad then you know that he lets few people “get there”, but when you get there you stay there. Being his son has been an experience, for lack of a better description. I will leave it at that though. My grandparents are pretty amazing people too. I am not sure what I would do without my grandma, who I affectionately call Ammamma. She always just there to hang out with and half the time she has no idea what I am saying, but that smile on her face is so awesome. Then there is Tata, my grandfather. By now his reputation precedes him, but he was never Dr. Ramakrishna to me, he was always just Tata. I have a pretty special relationship with him which is hard to put into words. Then there is my sister. I have an interesting relationship with her, and it is awesome and a lot of fun. She is super cool and is super smart (chembio major from Cal…NERD). The main point is that there is a reason we are all the way we are…and that is because of my mother. She absolutely cherishes the relationships this family has with each other. It’s mind-boggling how much she affects the attitude of this family. It is hard to quantify or qualify, but it just happens. Amazing….

With that I want to thank all of you, our friends and family, for your support. Thanks for taking my family in and doing what you do. I always joke that a lot of my friends are my friends because of my mom. That is in fact the case. She gives great hugs if you ever have the chance to give her one. If you like Indian food, take advantage of her because I hear she is a pretty good cook. My mom will always be ’mom’, Shelly aunty, Mrs. Krishnamurty, Shelly, or whatever else you call her. My mom is afflicted with this disease. She has it, it is not going to go away, she has to deal with it. Yet it’s easy to see that her lifestyle has not taken a backseat to this disease. If anything, this disease has sent her a message saying, “I need to do everything NOW!” A big part of that mentality is because of the people she is surrounded with. I see all these posts on the blog and it’s easy to see all the love, and I appreciate it greatly. It’s easy to tell the difference between someone who actually cares versus someone who just knows what to say. And there is not a single person who I have seen that does not truly care about my mom and our family, and I hope that you feel we treasure that sentiment.

December 13^th it is. Modern science is pretty damn amazing. Being a fan of science myself, I am amazed by the fact that this is even a possibility. I have full trust in this procedure, and would not be surprised to see the entire surgical team at my house one day for a cooking class.

I was not sure where this entry was supposed to go or what I really wanted to say. I kind of just sat at my computer and started writing. It isn’t eloquent by any means, nor is it structured or complete. This was hard for me to do and I think that’s good. Will I talk about it with my family after this…we’ll see. But I want to thank you for taking the time to read this.

I love my mom.

– Akshay

Are we making the right choice?

2005-10-29T09:42:00.000-07:00

I've asked myself this a few times over the last week or so.

It's 10:30 p.m. in Bangalore, India. I'm sitting in my hotel room at the end of a very long week of work......16 hour work days....work the India day and then it's time to work the US day.....the joys of a global economy.....I'm pondering this same question....

Not for too long......

I think of the times that Shelly has called me this week in the middle of her night.....at 2 a.m......at 3:30 a.m.....her voice shaking.....i can "see" her hand shaking......"my arm's killing me" she whispers hoarsely......"i just can't sleep anymore"...."i can't live like this anymore, Raju"....her voice breaking. It's gut wrenching....one feels so helpless......so inadequate.....i know many of you relate to this.....what does one say?.....I've tried many lines.... "It'll be okay Shells, try and get some sleep...." or the more analytical distraction approach..."which part of your arm is hurting, the upper portion?".....or the very creative pretend-like-nothing's-the-matter line "isn't it way past your bedtime, you really should get to bed". ....

Turns out it really doesn't matter what I say.....

"I jus wanted to hear your voice Raju".......she says, her voice trailing off. I start to open my mouth but she's already started to put the phone down.....there's a lot of fumbling and clicking as she tries to replace the phone on the base with a very uncooperative hand.....

Are we making the right choice?

Damn straight.....

The journey reeeeeeally begins now...

2005-10-19T17:20:00.000-07:00

Exec Summary

We met with the attending neurologist Dr. Jill Ostrem at 0930 PDT for about 45 mins. She conducted a general patient assessment. We then met Dr. Starr at 1400 PDT for about 2 hours.
Shelly is a good candidate for this procedure and should benefit positively.
We have tentatively picked Tuesday, December 13 as the date for the procedure.
We both liked Dr. Starr a lot. We're excited (and nervous) about the prospects.

Dr. Jill Ostrem

Our flight to San Francisco last night was delayed by 2 hours. We got to my nephew's house in Redwood City at midnight. A bit pooped but looking forward to what we were going to learn tomorrow...er today now.

Shelly, to my surprise, had a decent night of sleep. I figured her anxiety wouldn't let her get even the couple of hours of fitful sleep that she normally gets these days. It was a good omen of things to come. I knew things were going to get even better when we were able to navigate from Redwood City to UCSF without having Shelly either mock or berate me for not reading street signs. Yeah baby!

We park and start walking into the main building at UCSF. We're supposed to meet the attending neurologist. As we're walking up..
"What's the doctor's name, I'm drawing a complete blank?" Shelly says.
"Maybe we should look up the UCSF doctor directory and go down each name and see if it rings a bell" I offer up helpfully.
"I think it's Portnoy or something like that" she says. We're in the elevator now.
"Oh, I remember now, it's Ostrem" she concludes as we step off the elevator.
Portnoy and Ostrem. It's easy to see how one could get them confused.....

On the 8th floor we find ourselves in the midst of gobs of patient rooms. We walk up to the nurses station and ask for Dr. Ostrem. Blank stares greet us. We don't have an Ostrem, one of them says. We continue to stare back....we're not going to be deterred....maybe if we stare long enough, it'll come to them. The strategy works. A doctor at the station looks back and suggests that we might be in the wrong building. "Aren't you looking for the outpatient section?" he says. Yup. "Well you have to go the building across the street then". My confidence in the good omen thing is beginning to weaken.

We walk across the street to the "black glass" building and go up to the 8th floor. Shelly's morning meds are now starting to wear off and her tremors have started. She's taken the second dose but it hasn't kicked in yet. Her anxiety is now building. There are some stares in the elevator. 'Don't you have anything better to do?' I want to ask the them.....but I know it's just natural human behavior. They're probably all just normal, good people who don't quite realize the effect they're having. We get off the elevator, check in and wait for Dr. Ostrem. Shelly's tremors are a bit stronger now. She's obviously getting more anxious. Dr. Jill Ostrem walks up and takes us to a consultation room. She's very pleasant....professional. We later learn from Dr. Starr that she's married to an Indian. She tells us she's going to conduct a patient assessment and relay that to Dr. Starr before we meet him. We talk about Shelly's history.....how and when did it start.....what were the symptoms...what is it like now.....how active are you.....are you still able to do the things you've been able to do....are there new symptoms now.....what medications are you on......how severe are the "on/off" periods.....how are you sleeping.....how long do the tremors and dyskinesia last during the day.....stretch your hands out.....follow my finger with your eyes....touch the tip of my finger.....push back against my hands.....pull my hand......walk across the room.....do you have any rigidity.....how is your balance.....stand up and face away from me....i'm going to pull you back.....show me that you can maintain your balance......can you feel me touch you face....your neck....the bottom of your feet....try and relax completely as I do a reflex test....knock knock on the knees....run the pointed edge of the reflex hammer along the soles of the feet.....

Shelly's tremors are pretty strong throughout this......exacerbated by the anxiety of being "assessed". Dr. Ostrem is "impressed" by the strength of the tremors. 'That's an odd comment' I think to myself.....but she's just being clinical. I get it. I can be that way too. Shelly is now sitting down on a chair. She asks me to pull up my chair next to hers so that I can "put pressure" on her arm as she slides it behind my back. She explains what she's doing to Dr. Ostrem. A few minutes later the meds kick in. You can "see" the effect on her. "I can just feel it flow through my body from top to bottom" Shelly has said frequently. The tremors stop. She looks calm. Dr. Ostrem notices it too. This is a good thing. One of the key criteria for the DBS procedure is that the candidate responds well to Sinemet - the Dopamine drug.

Dr. Ostrem wraps up the assessment. She indicates that Shelly is a good candidate for the procedure and that she will indicate as such to Dr. Starr. Good good good.....one down, one to go. The "man" is next....

Dr. Phil Starr

After leaving Dr. Ostrem we had a few hours to kill. In a continuing effort to support the Seattle economy, we walked to the local Starbucks to get a couple of lattes - tall, extra hot, non-fat, no foam....just in case you get the urge to order me one the next time you see me. We then hopped over to see Ratika at Berkeley. That's always such a great experience. Ratika that is. She's so full of life....she's so happy to see us.....big hugs and kisses all around....blabbering away non-stop about this that and the other.....o', the joys of youth.

Back over to SF to see Dr. Starr at 2 p.m. Took a while to find parking in the garage. Checked in with the registration desk and waited for about 20 mins. The neurosurgery department has fantastic views of the city and the bay. Diane Hollander - his administrative assistant? - then took us into a consultation room. Waited for Dr. S to show up. I worked on solving yesterday's Sudoku puzzle. Shelly was doing great. She was in her "on" period. You wouldn't have guessed she had Parkinson's. Knock, knock. No it's not a knock knock joke. It's Dr. Starr. The "man" himself. After intros we started chatting about Shelly's condition and then got into the guts of the procedure itself. He was easy to listen to. It was very conversational - he never talked "at" us. He had a comforting presence. No hype....no big scary doomsday scenarios....just the important considerations. The benefits....the risks - stroke and infection due to the implanted "hardware" being the biggies....3 in 100 level of risk. He's done about 600 of these procedures. He believes they have gained a lot of experience and honed this pretty well. The benefits and risks are pretty well understood and he doesn't expect to see any dramatic reduction in the risk profile as they do more of the "traditional" DBS procedure. More later on some newer methods. I found Dr. Starr to be quite a geek. This is a good thing. I enjoyed myself asking him questions about the procedure and the methods and the hardware and caught myself thinking about how cool this is and how much better it could be and was going to be. I actually had to check myself from asking too many questions. It occurred to me halfway through it that Dr. Starr and I were going on and on and we'd somehow forgotten that this was really all about Shelly. I'm intrigued by the procedure....but way more so by the possibilites that it offers Shelly.

Talk then shifted to a relatively new variant of the procedure. Dr. Starr called it the "interventional" approach. Just a quick reminder of the "traditional" DBS procedure. You put a rigid frame on the patient. Do an MRI to locate the target zone for the electrodes and note it's location with reference to the frame. Take the patient back to the OR and map the brain activity in the target zone using fine microelectrodes with the patient being awake. The patient's physiology is used to determined the precise location. Once the exact location is determined, insert the permanent electrodes. Close up and do a post-operative MRI to confirm that the electrodes are located correctly. The "interventional" approach is essentially using "real time" MRI scans to locate the electrodes. The doctors can see the electrodes being placed in real time. This procedure does not depend on the patients physiology, just the anatomy. The patient does not have to be awake during the procedure. Also there is no need for a stereotactic frame. The procedure also takes less time though further optimization of the procedure is required before times are significantly different than the traditional approach. Several relatively obvious advantages here. But.....this methodology is only 16 patients "old". This is essentially an "early adopter" choice we could make if we found the benefits significantly compelling. I can see the advantages. But I am burdened by my profession of building and delivering software applications. The "interventional" approach is somewhat like trying a beta version of the latest release of an application. The features are compelling.....but what is the run time experience going to be like? Can I bet my business....or in this case life.....on it? There is no obvious approach to "trying" this in a low risk way. We're almost definitely going with the traditional approach....unless I find some very very compelling new reasons to go with the other.
Dr. Starr has given me a "consent form" to read in case we want to pursue this option. Not likely...but I'll read through it anyway. This stuff really intrigues me. I'd love to be working on something like this that is able to offer HOPE to so many. I love it.

We decided we should proceed full speed. The next open slot for Dr. Starr is Dec. 13. A Tuesday. We've taken it tentatively. Will confirm back to Dr. Starr this week.

As the session wrapped up, we also met Monica Volz who is a RN and Study Nurse in the Neurology Department. She would be working with us as we go through the procedure. Shelly also told Dr. Starr about this blog. He was very curious about it and we brought it up on the computer in the room. He's going to bookmark it and read it. Welcome to the blog Dr. Starr. If you've read this far....thanks for doing that......second, thank you for a great meeting......and third, pls forgive any over-laymanization of this procedure. I know there's a lot more to it than I can adequately convey. On behalf of Shelly and others.....thanks for playing a key role in making this possible.

Dec. 13, 2005.....here we come. Christmas 2005 and New Year 2006 are full of possibilites.

Wow!