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....

Juice Fasting with Parkinson's Disease

Ok, that was hard and weird.  I did not make it the full three days. I did two days, and ate a couple of Avocados and Bananas during the fast as well, so not sure how much of a "fast" it actually was.  I'm a big guy (about 210 lbs) so, I get hungry.  Also, as my wife noted, I'm a snacker, so it took a lot to just get through those two days.

Nevertheless, I'm happy I did it because of what I noticed.  During the fast, especially the second day and the third day during which I actually did eat a bit, I noticed my meds were working really well and I seemed to be staying on longer.  In fact, yesterday (day 3), I extended my meds (Sinemet) so long, that I actually took only 8 pills instead of 9 during the day, and the last two were taken at least two hours after I would normally take my last dosage of the day.

So, the question is, what was this doing to my system that I could extend my meds for much longer periods of time.  A couple things come to mind.

1. Sinemet does not work well with protein, and the juice fast pretty much eliminates most proteins from your diet, at least proteins from animal sources.  The fact I was eating a lot less protein may have contributed to the effectiveness of my meds.  One caveat is that my wife is vegetarian, and we rarely eat meat in the house,. so unless it's dairy or soy, I don't get a lot of protein on a daily basis anyways.
2. Ridding my body of toxic food helped me reset some of my synapses and effectively improved my reactions to my medications.  This one is a who knows?
3. Similar to number 2, but coming from the opposite end, eating a lot of fruits and vegetables in the form of juice helps your body absorb and use the medications more effectively.  I mean the amount of fruits and vegetables I ate in those two days was huge, compared any other day, hell week, over the past couple of years.

While, I have no evidence other then basically how I felt and what my reactions were, it gives me somewhere /something to look into further.  I plan no trying to just skip a few meals a week next week during working hours and drink juices instead.  I want to see if that will have a similar effect on my med schedule and general overall well being.  Other than being hungry and missing the act of eating, I'd say it was pretty successful and I look forward to some more self-experimentation.

One note:  I am not a doctor, I am not recommending this to anyone.  If you do begin a fast, note that you probably should see your doctor before hand.  Nevertheless, if you do try it, please let me know how it went and what if any observations you make.

An interview with Parkinson's Disease

No, this is not a post of me interviewing my disease.  This is about going on an interview for a new job while I have Parkinson's Disease.  I work at a large corporation and have been here for nearly 20 years.  That's a long time for anyone, but especially for someone in the tech industry.  However, I have stayed here for a number of reasons, including health care, schedule flexibility and the fact that my management chain believes people's families are important and have shown that in their actions towards me and my family, especially since my daughter was born.

I like working where I am but have felt stuck in a rut that I have not been able to get out.  It's not that I lack motivation (actually a symptom of PD I don't yet have), but I seem to have been (in my opinion) typecast in a role here at my company and am unable to get to more leading roles, because of that typecasting.  Therefore, this past December, I updated the resume and sent it out to a few companies in my area that had posted positions dealing with areas that I had experience and in which I was interested.  These positions were all senior engineering positions.

Within two weeks, one of those companies contacted me and after an initial interview over the phone, asked me to attend an onsite interview.  This is where the nerves could kick in.  I did not want to hide my Parkinson's; but, I also did not want to advertise it in the way a constant tremor or being off balance may cause.  Luckily, I have recently figured out a good med regimen that keeps my tremor and gait issues pretty much controlled as long as I get a good night's sleep and eat right (lower protein intake and reduce the junk food).

So, after making sure I got a good night's sleep and not overdoing anything for breakfast, I took my meds at the appropriate times and showed up for my interview on time (giving thanks for leaving an extra 20 minutes early because of all the traffic I hit).  The interviews went well, they seemed to like my resume and experience.  Also, I had barely a tremor and really had no gait issues for the 3 hours I was there.  I was relaxed and felt good.

The last interview was with the person that would be my manager if I got the position.  It was near the end of this interview that I told him that I wished to disclose that I had Parkinson's Disease.  The reason I did this was twofold.

1. If I got the job, I was going to be working with these people.  I wanted to be up front and honest because they would be the ones I would be interacting with everyday.  If I didn't disclose, when I got to work and started using a cane or shaking really badly, they'd be wondering what else was I hiding.
2. To be honest, if they had a problem with my PD, I wouldn't want to work there.  I worked for a company that has been very accommodating  I don't need the added stress of hiding my disease from my new employer added to the stress of learning a new job.

The manager looked at me, thanked me for being honest and asked point blank what did that mean in terms of my work.  I explained that my work wouldn't suffer (it hasn't at my current job), I just might type a little slower and use a cane at times.  He told me as long as my work was not affected, he didn't care (which is the answer I was hoping he'd give).  We ended the interview about 10 minutes later, and I was escorted to the lobby.  

A week and a half later, I was offered a position and will be starting a new job for the first time in two weeks.  I am excited, nervous and very happy with all that has happened.  But, I'm especially glad/hopeful that I found a company that will allow me to continue working with PD and support my family.  

Changing my med schedule

I mentioned to my MDS (Movement Disorder Specialist, a subspecialty of Neurology that anyone with YOPD should actually try and see instead of just a straight Neuro) that I was seeing positive results from adjusting my diet.  She basically said it was interesting and moved on.  I guess there are so many factors that it's just one more for her to keep track of.

However, what was good about my visit, besides the free drugs (she's gotten me into drug studies that have effectively cut my Rx costs in half over the past 6 years), was her suggestion that I adjust my med schedule and begin taking some meds at night instead of the morning.   I started Monday night, and am definitely seeing a difference.  The medications I'm currently on are Azilect, Requip XL, and Sinemet.  The first two last upwards of 24 hours because they are time release (which in the case of Requip XL, has made it non-generic again and increased the cost to me by 17x, not that I'm complaining).  I now take 2 pills of Requip XL in the morning and 1 in the evening along with the Azilect in the evening.  I take the Sinemet throughout the day.

At night, I've noticed a\n obvious dramatic difference whereby my meds used to completely wear-off by about 8-9 pm and I'd be shaking or stumbling around the rest of the night.  Now, my meds stay active until close to bedtime, which is obviously a welcome relief to both my wife and I.  She likes it that I am now somewhat normal at the times she sees me as well as when I'm at work.  In the morning, I've also noticed that my meds seem to work quicker for some reason and I'm able to get to normal in about 30-45 minutes instead of 60-90 minutes.

BTW, I need to start writing more, just because in a way, it's cathartic.  However, I need to figure out what to write about first.

Med schedule

I have been taking Sinemet for about two years now. I started off with three pills a day and upped it to six last year. The good thing is it's a generic drug (I take other drugs that are not) so it's relatively cheap. One thing I've learned is that PD patients are very experimental with their meds. I have been prescribed six pills for nearly a year now, but when I take them has changed dramatically over the year.

I started off taking the pills haphazardly. Regularly, taking my morning dose with all my other meds. But I wouldn't take my next dose until I felt I needed it (definitely the wrong way to go). Because of this I started taking two pills at a time. The dose lasted longer and when I was on, I was feeling really good. I was not changing my overall dosage but I was taking more at once. A friend who is a neurologist explained it to me as I'm getting a higher high, but it also means I am getting a bigger drop off.

Well this bigger drop off started hitting me like a brick wall a couple weeks ago. I've been tempted to request my MDS (movement disorder specialist, a subspecialty of neurology) up my dosage. However, before I did that I wanted to see how reducing down to one pill at a time and keeping a strict schedule would work. I'm happy to say, at the moment, it looks like this was the better option. I am going to have to figure out a better way of reminding myself to take my pills on time. Nevertheless, the past couple of days, I've felt a lot better during the off times, it's not as dramatic a change or as hard to deal with, and my on times have seemed to come back up to a more reasonable length that allows me to work efficiently at my job.