Saturday, August 17, 2013

Rehab is my new job

Those were the words I told my wife after we learned that I had suffered a stroke during my DBS surgery.  The situation was according to my wife:
His neurosurgeon is very optimistic and told us that most people make a full recovery from this. Things in his favor are that he is young, healthy, and his right arm and leg are very strong. Also, he can still USE the limbs---if you ask him to move his leg and arm, hand and foot, he can---he is just having a hard time directing them where to go.
The situation according to me was:

  • I'm the breadwinner in the family.  Despite my Parkinson's diagnosis in 2006, symptoms since 2004, I continue to work full time.  My wife is a Marriage and Family Therapist by training, and besides the fact that we both want her to be a Stay At Home Mom, she just does not have the earning potential of a software engineer.
  • I have just started a new job.  I changed jobs in February, and despite the fact that they knew I had Parkinson's Disease when they hired me, I didn't want this to affect my work or my reputation there.
  • It figures.  If you look at our family history, we are always facing these trials and tribulations.  My Rabbi stopped by and I told him my family's health situation often makes me feel like JOB.  It really didn't surprise me an awful lot that I had a stroke.
  • My family has a community backing us up that is willing and insists on helping us.  Within minutes of posting the above message to facebook along with a request for help with our kids, my wife was inundated with comments, texts, private messages and phone calls offering everything from meals to picking up/watching our kids.  This has happened multiple times with our daughter, and I was not surprised that our friends and family stood up again to help out.
So my job was, get working on getting back to baseline.  Once my neurosurgeon figured out my med situation and wrote explicit instructions on when and how much of each pill to be administered, based upon his discussions with me, there were literally no more issues with my meds in either the hospital or rehab facility to which I was transferred.  The surgery was on Wednesday.  On Thursday, I could not even walk a few steps with a walker.  By Friday, I had walked the halls of my hospital wing with my nurse and taken a quick shower (not my head, because I could not get the staples wet).  Unfortunately, PT never came that day and I only got the walking session with my nurse.  Needless to say, my wife was pissed.  The hospital had arranged for me to be discharged the next day to an inpatient rehab facility.  While this place was further from our home (by about 10 minutes), I would get 3 hours of therapy a day, including PT, OT and speech.

On Saturday, I walked the halls of my hospital wing one last time with the PT, who apologized for me not being seen the previous day.  I felt stronger and ready to go to work at the rehab center.  I had contacted my boss and he only offered encouragement and told me to keep him updated and just get better.  I was discharged around noon and my wife drove me to the rehab facility.  Once I was settled into a room, the PT and his student almost immediately took me for a walk using just a gait belt (no walker).  The student PT walked beside me, holding the belt and offering me support when I needed it.  All the time, her instructor kept asking her questions about what she should be telling me and how I should be doing things.  Not only was it interesting to see her education in action, it actually helped me learn some of the things I could have done or will do when my meds are off and I need to pay more attention to my steps, specifically shifting my weight off the back leg and how to get my feet moving when I freeze.  She took me up the steps and using the left hand rail, I was able to walk up; however, when using the right hand rail while going down, I could not get my hand to lift off the rail and follow my body down the steps.  We finally switched to the left hand rail, and I was able to walk down without further incident.  I was encouraged, but knew it wouldn't be easy.  The OT came in and assessed my hand coordination and was impressed like everyone else with my strength, and had me do a series of tests to check my fine motor skills with my right hand which were very bad.

Sunday at the rehab center is typically a rest day, but since I got there on the weekend, I still received a half hour each of OT and PT where I saw progress.  Also, over this time, I was visited by multiple friends offering support and cookies (a very important part of the healing process).  On Monday, I felt very good.  I was actually able to type with both hands and wrote notes to both my coworkers and my wife telling them that I was typing with both hands and would be better very soon.  During the PT sessions, I was able to do everything better than the previous days and make a lot of progress.  By the end of the last session, the PT student was physically pushing me to judge my reaction to being placed off balance and make sure I could correct myself.  I had shaved on my own the previous day, but with the OT in the room (outside the bathroom door), I was able to take a shower and clean up.  I was still keeping the water off my hair, but had the best scrub I'd had since before the surgery.  My second OT session consisted of me writing my name and short phrases to check my legibility and ability to hold the pencil or pen.  Once the OT was satisfied with that, she gave me more finger exercises and I was done.  The last therapy was done by the Speech Pathologist.  This was actually an assessment since I had not had one over the weekend.  She basically asked me a lot of questions and gave me a standardized version of a cognition test I'd taken many times before at my neurologist's office.  After I answered basically, the entire test correctly, she stated that as a well educated engineer, working full-time, I was probably too high functioning for the test to measure any real impairment.  She then proceeded to ask me if I could read a book for a half hour and find some work to do for an additional half hour that I could report back to her or another speech pathologist to determine if I felt at all impaired cognitively.

The next day I had my first full schedule of PT, OT and Speech.  However, the PT had discussed having my wife at one of my PT sessions so that she could learn any techniques needed to help me stay safe at home.  This was because, five days after suffering a stroke, all of my therapists were very happy with my progress and my ability to take care of myself and get on with my life.  During my first OT session, she struggled to even keep me busy and the second session was more just gathering information for me, in case I felt that I would need therapy after I had been discharged.  The first PT session was more pushing and movement in four directions at different speeds to make sure I could start, stop, change direction and stay balanced.  The second PT session was where the PT student showed my wife how she stood at my side and/or behind me to make sure I was safe when needed.  During my last round of speech therapy, the therapist asked me the gist of the chapter I had read and the work I had done and then she gave two sheets filled with large number multiplication and division problems, which we did side-by-side to compare answers.  During this day, my therapists all did two things.
  1. Recommended me for discharge which would take place the next day because you cannot receive therapy on the day you discharge.
  2. Asked me whether I wanted to continue therapy on an outpatient basis.
For all of my therapists, with their agreement, I decided to not continue therapy until I got the DBS device up and working in mid-September and determined what my new baseline would be with the DBS device working.  The neurologist for the rehab center came in that night and told me he would discharge me the next day and that he even felt I was safe enough to drive since I had basically showed no signs of the stroke less than one week after it occurred.  

I was released from the rehab center on Wednesday morning and went home with my family that day, one week to the day from when my surgery started and we first noticed signs of the stroke.  It truly was a great day and I have many people to thank in my community, among my friends and family, doctors and therapists, but most of all my wife and kids.  I wrote about the women in my house last year when my daughter's halo came off.  But I'll say it again, adding my son along for good measure, I'm lucky to have my family in my life.  They bring me joy and happiness and inspire me to heal and be the best father and husband I can be.


Thursday, August 15, 2013

Risk of Stroke is 1-3% for DBS...Of course I'm in the 1-3%

I'll start off by saying, I am fine.  However, if you asked me or my wife that question about a week ago, you would definitely have gotten a different answer.  Nevertheless, thanks to the great work of some excellent therapists, doctors and nurses as well as some awesome support from my wife, kids, extended family and friends both in town and around the world, I am on the mend and will be back to 100%  in no time.

Let me start at the beginning....

If you've been following my blog, I've been tracking my progress toward getting a DBS device installed in my brain over the past 3-4 months.  I went through the entire screening process and was approved by both the doctors and my insurance company for surgery last week.  My sister-in-law got in town on Tuesday to watch the kids while I was in surgery and in case my wife wanted to sleep over as well in the hospital room.  I had gone through the pre-admission process on the previous Friday and had my blood drawn, vitals taken, chest x-rayed and various parts of me poked and prodded while they explained where and when I needed to be the next Wednesday.

My wife and I got to the hospital on Wednesday morning just before 5:30 am and I was pretty quickly whisked back for the doctor to place a Halo-like device on my head for surgery.  Now, most people are probably do not know what a Halo is, but since my daughter broke her neck last October, we were very familiar with this device.  In fact, we asked the doctor to take a picture of me with the device, so my daughter can see me as her Halo Twin.  However, all I can say about the device is OUCH!  That was truly the one time where I actually felt pain during the entire surgery.  Basically, the doctor used a local anesthetic at four locations and proceeded to screw four screws into my skull until they basically touched my skull.  While the local basically alleviated the pain, the fact is the Halo is basically squeezing your skull so that it stays in place and it hurts from just the pressure.  The pain did ease as I got used to the pressure, but damn it hurt and I have even more respect for my daughter's high level of pain tolerance than I did before I got the Halo.  After they placed the Halo, I was taken to get a CT scan where they screwed me into the machine, and took pictures for a couple minutes.  I was then wheeled in a wheelchair to the operating room and put under for a little while as they prepped me for surgery.

The next thing I remember was waking up as my neurosurgeon talked to me and told me they were ready to begin.  I thought they had already opened me up until, to my surprise and to-be-frank horror, I felt the drill begin to open a hole in my skull.  That's right, I felt them drilling into my skull.  There was no pain, but it was probably the freakiest moment I'd had in my life, up to that point.  I then fell asleep again for a bit, thinking, couldn't they have put me under during the drilling process?  I was soon awakened by my neurosurgeon and a neurologist that was going to place and test the DBS while I was awake.

The process for placing the DBS, is a pain-in-the-ass.  I highly recommend not using your regular neurologist just for the fact that the neurologist becomes your most hated person during the surgery, not because he/she hurts you, but because he/she annoys you to no end.  Basically, the process consists of slowly getting the electrodes into position, my doctors used the globus pallidus interus (GPi), while the neurologist shines a light in your eyes and manipulates your arm and leg to check for rigidity and other stuff (I'm not a neurologist, so I'm not quite sure).  Once they have the electrode in a position they've determined is correct, they turn on the DBS device and up the power settings to see how much room they have for powering the device until your body parts stiffens from the electrical stimulation.  The reason the neurologist is hated is because he has to do this process for all three electrodes and it just gets annoying.  The light shining in your eyes and repeated arm and leg manipulation probably didn't take long, but it felt like a long time while sitting there.

After the placement, they basically had me go to sleep during closing and woke me just before they removed the Halo and took me into the recovery room.  I had a pounding headache from the Halo, but other than that, I was in no pain.  I was very thirsty and the nurse gave me ice chips and got me up to the room as fast as the paper work would allow.  I was pretty out of it on the way up, but my wife noticed right away that my breathing was not right.  In fact she noticed as they rolled me out of the recovery room, up to my room in the hospital.  Every breath or couple of breaths, I would be shuddering after breathing in.  As I began to notice it as well, it felt like when I tried to get a deep breath, the shuddering would start.  I have no better word for it, but my wife brought it up to the nurses and my doctor. In the meantime, I had a small meal and went to the bathroom with my legs on the side of the bed into a bottle.  The remarkable thing is that I had no tremor (this is called a lesion [sp?] effect and goes on for the first week after DBS surgery).  However, as the day wore on, I began to lose the use of my right hand.  By the time the neurosurgeon-on-call came to my room and asked me to smile and point with my right index finger to her finger after touching my nose, my smile was completely lopsided and I could not point correctly.  She immediately ordered a CT scan.  Later that evening, the neurosurgeon on-call came up to discuss finding nothing wrong with the CT and noting my breathing was back to normal, I showed her I still could not grab anything with my right hand.  I couldn't even place it correctly where I wanted it to go.  She said my neurosurgeon would see the CT that night and come up with a plan in the morning.

In the mean time, the hospital staff/pharmacy had totally messed up my med schedule (waking me up every couple of hours to take my Parkinson's Meds) and not listening to me when I told them I knew better than anyone when to take them.  Finally, my neurosurgeon wrote down my med schedule according that I wanted and gave it to them to use for the rest of my stay.  NOTE to any PD patient, write out a specific med schedule that you know works for you and give it to your doctors to give to the nurses when you get admitted for anything and bring your meds in there prescription bottles for the hospital to use.  Most doctors/nurses are not aware of the fact that PD meds are not needed at night and that you might take different dosages at different times of the day. Also, some hospitals do not carry some of the latest meds (Requip ER and Azilect in my case), so bring your meds with you. The best way to prepare them for this is to give your doctor the schedule that you want them to use with the meds you want them to administer.

The next day, my surgeon ordered an MRI, saying he suspected a stroke.  By the time we got the results of the MRI, it was obvious something was wrong.  I could not walk on my right foot or use my right hand.  My surgeon told me there was a 6mm x 10mm stroke right next to the location of one of the electrodes.  He had a positive attitude about my ability to recover because while I had loss all coordination in that side of my body, I had no noticeable signs of any loss of strength, I was young and except for the Parkinson's, I was relatively healthy.  Nevertheless, I was part of the 1-3% of people who suffered a stroke during DBS surgery.  Given my family's history, my wife and I could only take it in stride and say of course I had a stroke.

I'll discuss my rehab in my next post....

Thursday, August 1, 2013

The surreality of elective Brain Surgery

I am now less than a week from having my first surgery to implant the DBS.  The first surgery will be on Wednesday, August 7th.  I will be having the electrodes implanted on only my left side.  The reason for this is twofold.

  1. It's considered safer and less stressful to the patient (me) to do one side at a time. This is according to both my neurologist and neurosurgeon.  They feel I'll have a faster recovery and will be able to get a great deal of benefit out of the one set on my left side, while minimizing the risk of complications.  They both know I work full time and need to be able to get back to work, so this came into part of the discussions.
  2. Currently, most of my symptoms are on my right side (thus surgery on the left side of my brain).  While my left side is starting to see some symptoms (it is mostly gait related), the doctors feel that I will most benefit from the one side and hopefully have some crossover effect for anything on the left side of my body.
Nevertheless, both doctors said, if I need the other side to get electrodes placed, I'll be able to get it whether it is 6 months or 6 years from now.  

I had an MRI last week that took approximately an hour.  If you've ever had an MRI, you understand that it is best not to be claustrophobic (I'm not), able to stand still (I timed my meds for this) and basically relax and go with the flow.  I was very happy to have good music playing during most of the procedure (the tech forgot to restart the music after he injected me with the contrast material for the last 10 minutes).  My wife recently had an MRI and the tech automatically put in classical to "relax" her.  He obviously does not know my wife.  The tech at this facility asked me my musical taste and when Nirvana - Smells Like Teen Spirit came on as the first song, I knew I was in good hands.

Getting to the title of this post, it is weird to think that I'm basically sitting at work or at home with the family doing typical, everyday things and in about a week I'll be going in for brain surgery, by choice.  It's not something you ever think you'll do.  I always thought of surgery as something you do because you have to and while I feel this will greatly improve my quality of life, it is still a choice that I and my wife made by ourselves.  We had input from doctors, but the ultimate decision was my own.  I know even in heart surgery we make that decision (we've made that decision many times for many issues with my daughter); however, except for her surgeries to correct her cleft lip, it was never really a choice, it was have this procedure or she will die.  The lip surgery is so different because it is cosmetic, not the internal function of an organ, let alone the brain.  It's so unreal that I am doing this surgery, yet I can't wait.

A friend told me the other day that he can tell I'm ready for this, and I am.  My wife as well.  She basically told me she hates watching me suffer, which is correct on so many levels.  Watch videos of people with Parkinson's when their meds kick in or they turn on their DBS.  Without a doubt, there is typically a sigh when the symptoms are relieved.  That is because besides the obvious pain in the ass part of the tremors, dystonia, gait issues, etc. Parkinson's Disease is exhausting, even without the insomnia that most people with Parkinson's have.  When my meds go on in the morning about 45 minutes after I take them, it is one of the happiest points in my day.  It sounds sad, but the fact is, getting around with a severe tremor and gait issues is just exhausting.  There is such a relief that it is actually hard to describe.  The fact that I will have more on time with the DBS and will hopefully wake up in the morning on, without the need for the meds to kick in, is such a mind-numbingly awesome notion that I cannot wait for all the surgeries to be over and my programming session to start.

Speaking of programming, a little aside.  I have great friends.  Most of the guys I hang out with that are not from my Synagogue were hired on at my first company the same year I was hired in 1993.  We basically all came to San Diego together and made our lives here.  All but one is still at that company since I left in February, but we all got together for a barbeque the other day to catch up and let everyone know what's going on.  Like any good group of engineers, they were curious about the actual device that will be implanted.  I don't know a lot, but know it is programmable via a remote control device that you place next to your chest.  Needless to say, this got them going on whether they could hack the device, and start messing with my brain and setting up websites to "Control the guy with YOPD."  This is why I like my friends, they do not suffer from poor you, I'm so sorry.  If they did, I'd go nuts.  They want me to get better and use the full potential of this opportunity whatever it might be.  This is also how I know I made the right move to switch companies, because my boss asked whether I'd be able to hack the remote as well.