DBS Progress Report

I've officially been off most of my PD meds for over a week now.  Last week, the nurse who does the programming of my system, increased the voltages in my left side (right brain) and I was able to walk normally, with no meds.  I'm still noticing some occasional tremor, like while I'm typing, but I have had no meds for over a week.  I will continue to play with my voltages and meds to see if I can improve my symptoms some more, but is already having a dramatic effect.

Some improvements besides reduction in meds:

1. Walking - This is probably one of the most dramatic improvements.  I am walking relatively normally and even run as well.
2. Sleeping - This actually ranks up with walking.  I have been sleeping 7-8 hours straight through for the first time in years.
3. Bathroom urgency - Related to the sleeping, I can hold my bladder better and can sleep through the night as well.
4. Speech - While occasionally slurred when I'm tired, I and others have notice a less staccato method of talking and thoughts float off my tongue more clearly.
5. Tremor and dexterity - little or no off time.
6. Dyskinesia - gone when I don't take meds.

To put it bluntly, my surgery is working even better than I hoped.  Here's to it continuing.

It's been a while, but I had brain surgery and it worked!

I had brain surgery again, just over two weeks ago.  I was released from the hospital the day after surgery and here's the shot my wife posted to Facebook, with the caption, "Who had brain surgery yesterday and was already released today? This guy!"

They turned my leads on the following week, and to say there is a difference between now and then would be understating the case by orders of magnitude.  I am so happy with how the new leads are working after just the first programming session.  My walking has improved, my tremor has reduced, and my med intake has dropped by over half.  Right after programming, I took an extended walk with friends to a bar in downtown San Francisco.  I was doing great, until my meds kicked in and my dyskinesia went crazy, that was when I realized, I would need to dramatically reduce my meds.  I am still figuring the med levels and times that work well for me; however, I am doing well and feeling better than ever.

Thanks for all the well wishes over the past two years since I began looking at having my first surgery.  I don't wish my experiences of a stroke, heart attack and finding the leads had moved to finding a new surgeon and having the new leads installed on anyone, but hope others can find solace in my experiences and know that there is good news, eventually.

Parkinson's since 2006, Brain Surgery & Stroke 8/13, Heart Attack 2/14, Triathlete Yesterday

This is what my wife wrote yesterday:

In August 2013 my husband had brain surgery and then suffered a stroke afterwards. Recovered. In February 2014 he had a heart attack. Recovered. Still battling Parkinson's Disease. And today now he became a triathlete for the first time. So proud, so amazed, so inspired!

I had a great time and this will definitely not be my last.  I hit my goals of finishing and my time was about what I expected.  This was the 40th annual Mission Bay Triathlon in San Diego, the first triathlon ever.  The race was a lot of fun, although the swim entry is crazy and not for the light of heart.  My friend who raced with me and myself hung back a bit during the start, so we wouldn't get hit or kicked.

I'm not going to do a whole race recap.  I just want to emphasize that if I can do this with my medical history, especially this past year, you can as well.  Get up and start moving.

Parkinson's Vaccine: What does it mean for those with PD and those who will eventually get PD

The Parkinson's vaccine that has been developed in Austria by biotech company AFFiRis AG has recently gotten a lot of news.  They announced positive results of a phase one safety study for a vaccine that could slow or even stop the progression of Parkinson's.

While this is great news, the unfortunate thing is also stated in that first paragraph as well, where it states the vaccine may only:

slow or even stop the progression of Parkinson's

 I actually talked to my neurologist about the vaccine and while it will aid new patients who are diagnosed with Parkinson's and may also point to an indicator that can be tested before symptoms begin to appear, the protein alpha-synuclein, this will not reverse the effects of Parkinson's disease, because those cells are already dead and clearing the alpha-synuclein that had a part in their death will not bring them back.

Therefore, for the millions with Parkinson's Disease, we still require a methodology for replacing the dopamine those cells used to produce, via medication/DBS, or the actual cells themselves, via stem cells, gene manipulation or some method someone has not yet thought up.  I don't want to be a downer, this vaccine is great news if it really works; however, for those of us already living with the disease have even further to go.

Also, remember, I am just a patient so take what I say with a grain of salt and discuss it with your doctor.

Promising Drug Therapy for Parkinson's won't be Researched, yet

What if I told you there was a drug that could cause the Mean total score on the motor Unified Parkinson Disease Rating Scale (UPDRS) to improve significantly from 33.1 at baseline to 23.2 after usage and the analysis of specific motor symptoms revealed significant improvement after treatment in tremor, rigidity, and bradykinesia.

If you were a Parkinson's Patient, you might say, sign me up and if you were a doctor, where's my prescription pad.  However, if you're the US government, you'd be saying no, no, no.  Why? because while an initial study done in Israel showed these results, the title of the study was, "Cannabis (medical marijuana) treatment for motor and non-motor symptoms of Parkinson disease: an open-label observational study."  This research is thus nearly impossible to undertake in the US because, federal rules state that experiments can use marijuana only from a single, government-run farm in Mississippi. Researchers say the agency that oversees the farm, the National Institute on Drug Abuse, has long been hostile to proposals aimed at examining possible benefits of the drug.

In the last 10 years, the government had approved just one U.S. research center to conduct clinical trials involving marijuana use for medical purposes — a UC San Diego facility created by the California Legislature.  However, on Friday:

the Obama administration handed backers of medical marijuana a significant victory Friday, opening the way for a University of Arizona researcher to examine whether pot can help veterans cope with post-traumatic stress, a move that could lead to broader studies into potential benefits of the drug.

This is the start and while I don't believe that Marijuana will be the wonder drug some people think it is.  It will be scientific research that proves or disproves that theory, not some anti-drug politician who still believes that evolution is only a Theory.

Batteries were not included

I know I said I'd get this out sooner; however, life just got in the way.  Work has been very busy (that's good) and so has our home life.  I will say that my tremor is basically gone, unless I really start adjusting the settings on my DBS to a program and voltage that I don't like.  However, my gait, balance and freezing are all still there.  To label this disappointing is an understatement.

I have been charged up since the beginning of September.  The first two weeks were just low level voltage to get my brain used to electricity.  The remaining weeks we've been playing with which electrode combinations I use and which voltages, pulse widths and frequencies work best.  I am not allowed and cannot adjust anything except the voltage range  (I'm given about a 2V range per program) for one of the four programs that I are currently available to me via my remote.  If any engineers are reading this, it's basically a process which could use a good Design of Experiments (DOE), but that is not how they do things.  I might have to work on that and show the nurse who programs me the process.

I have worked through three of the four electrodes (I originally thought there were only three) and a couple of combinations as well.  I've found settings that make my meds last a very short time and I believe I've found one that may extend the effect of my meds as well.  This is a good thing and is the first very positive result.  I need a few more days of testing to make sure what I am feeling is real and not just some random occurrence.  I say this because during the early part of my testing, I had moments where I had not taken any medicine and I was walking fine.  However, these were usually short-lived and didn't repeat themselves.

My wife is understandably, frustrated as am I.  But, I am hopeful that this will be an overall positive for me even after the stroke.  The one real pain-in-the-ass part is the wire from my brain to the battery seems very tight.  When I turn or stretch my neck in certain ways you can literally see it against my skin and feel it as well.  My neurosurgeon says it's fine and I'll get used to it, but it is not always comfortable.  The battery/pulse generator was bothering me for the first few weeks after surgery, but now I hardly ever notice it, even when running.

As for running, I've signed up with Team-Parkinson's to run the LA Marathon.  When I started training, almost 7 weeks ago, I could barely run for a couple minutes straight.  I am now on my first full week of running with no stops and have run 20 minutes each time.  You can see my progress on my daily mile feed in the lower right corner of this blog, if your interested.  I have never run a marathon and the only half marathon I've done was in 1999.  However, I am positive I will be able to continue increasing my training and get to the marathon distance thanks to the great support of my family.  So, wish me luck and I'll try and get a bit better at keeping the blog updated.

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.

Thanks!!

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....

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. 

DBS Approved!

I got word that I was approved by my insurance company and my DBS has been scheduled for early August.  I will update with information after I go through more of the process and have more information.

I'm figuring I won't show my surgeon this video until after everything is done and I'm cleared.

Video of man switching off his DBS electrodes shows dramatic results

This video is amazing.  Just the speed of his body's reaction to turning it off and on shows how incredible and dramatically life-altering this surgery can be.  I am am even more psyched to be in the process of getting the surgery.

Kanye West should be Ridiculed and Mocked

There is a post going around twitter by someone with Parkinson's discussing the use of Parkinsnon's in Kanye West's new album Yeezus.  The post discusses the insensitivity of using Parkinson's in his lyrics and trying to educate him better.  The lyrics he used are:

The monster about to come alive again

Soon as I pull up and park the Benz 

We get this bitch shaking like Parkinson’s

While the writer of the post has good intentions of trying to get another celebrity on the side of Parkinson's patients and bring publicity to the fight against the disease, I can tell you it's not going to work.  The reason is not the message in his post, but to whom he is sending the message.

Kanye West is out for Kanye West.  This is why he won't care one iota about how his lyrics affect others, only if it affects his bottom line.  Off the top of my head:

1. This is a man who married Kim Kardashian and is basically having public spats with her about their soon to be new born child.  He doesn't care whether publicity is good or bad, just that it is there.
2. He called his album Yeezus.  Even as a Jew, I can't help but think this is a take on calling himself Jesus, for no other reason then one of the other tracks on the album is literally, "I am a God"

Beside this, Kanye doesn't care about the truth and is an idiot.  The lyrics to the track "Black Skinhead" on the same album are: 

I keep it 300, like the Romans, 300 bitches, where's the Trojans?  

This is actually a reference to the Spartans defeat of the Persians in The Battle of Thermopylae made famous more recently by the movie 300.  The more amusing part is this is not some throwaway line, it's the freaking chorus.  If Kanye West doesn't care about facts in the freaking chorus of his song he sung on Saturday Night Live, why would he care about offending someone, anyone with Parkinson's.  Besides, he probably thinks those with Parkinson's are mostly old, white people.

Starting the DBS process

My doctor (Neurologist/Motion Disorder Specialist) and I have agreed that I am approaching a time where I need to consider DBS.  We'd been discussing it for about a year, but it seems like the right thing to do.  My big issue is that I just started a new job, so don't have a lot of vacation time, so I'm going to try and delay it until the fall, but we haven't even reached that point yet.

The reason I am now looking at DBS is basically two fold:

1. I am taking a huge amount of medication to be able to both work and function (luckily I've had minimal side effects).  However, both my doctor and I are starting to notice some dyskinesia.  I take so much medicine that one of my prescriptions was held up by the pharmacy because I was taking in too often AND in too high a dosage, per my insurance's formulary.  I take three drugs now Azilect, Requip XL and Sinemet (Carbodopa-Levodopa), in quantities that would probably make a person without PD go nuts.
2. My mornings and late evenings SUCK!  It basically takes about 45 minutes for my meds to kick in.  Until that time, I'm a feet shuffling, stumbling, 200 pound locomotive trying to avoid running into the dog, my kids and my wife when I can move and trying to start moving when I'm frozen in a doorway or just getting up from my bed or couch.

Over the next few posts, I'll discuss the process I've been going through and the doctors and therapists I've been meeting with to discuss whether I am a good candidate for the surgery.

Getting some traffic

Evidently, telling the Michael J Fox Foundation that you have a blog is good for traffic and I've barely written anything in the past few months due to my new job keeping me busy.  So, if you'd like to see some of my more interesting posts....

• A job interview while having Parkinsons's Disease
• The women in my life
• Discussing my daughter's broken neck in: A Personal Rant and Learning to be Grateful
• My notes from a YOPD Conference in Orange County

Those aren't my only interesting posts, but they say a great deal about me and what my family and I are dealing with.  Please look around and let me know what interests you and what you'd like to hear more about.

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.

Yes, I do like Twitter

I was having a conversation with a relative who was railing against facebook and saying she preferred to interact with people on a one-to-one basis and didn't understand why people spent any time on it. While much of this conversation centered on facebook, I realized she was basically saying all social media.  There are two issues with this:

1. Most people who are on facebook, don't really like it, but realize the value in it.
2. All social media sites are not the same.

As to the first point, I use facebook for family and friends and it works.  Before facebook, I would talk to some relatives on the occasional trip back east to visit the family and I'd maybe send a friend from school (elementary->college) an email.  I don't actively seek out people from my past, but I enjoy hearing what's going on with people I know.  I was recently contacted by one friend from elementary school and found out he graduated Yale and Harvard and was doing work equivalent for those schools in the government.  Besides making me have a small inferiority complex, I thought it was pretty cool.  I don't feel the need to check facebook every day, and do not.  However, I like being able to find out a friend had child, got engaged, is doing a comedy show, etc.  Also, as to my relatives, I have more contact and interaction now with them then even when I was growing up on the east coast, and facebook is a good part of that.

A saying that both my wife and I like is:

Facebook is for people I used to know, Twitter is for people you'd like to know better.

Social media websites are definitely not alike.  Everyone knows if you are making a lot of changes to your linkedin account and connecting to more and more people, you are probably looking for a change in employment.  Twitter is for finding people with common interests or ideas or situations.  I've been able to learn so much more because of twitter and the people I've met on it.  The main folks I follow fall into one of four categories:

• Folks with PD or other neurological diseases and their caregivers and doctors
• People who tweet about politics (journalists and liberals for the most part)
• Scientists of all makes and varieties
• Some techies

What's great about twitter is some of those people I follow, just to see what their doing or saying, follow back.  For instance, a really cool one happened this week, when the MIT Professor Max Little who is testing a system to diagnose Parkinson's Disease over the phone followed me.  I had found his unused twitter account a month ago and he has just started to use it to get the word out more on his research (they are trying to get over 10k samples and have about 6500 as of a couple days ago). It's nice to be able to provide feedback and get real time information about work/people that either effect you, inspire you, educate you or make you more aware of what is going on in the world.

BTW, if you have not yet participated in the study, please click the link to get the telephone number and call. You do not have to have Parkinson's to do the test as they want both those who are diagnosed and those who do not have the disease.  

Young Onset: One Disease, Many Life Styles & Choices

After attending the Young Onset Parkinson's Conference a week ago, I decided to try out the local Young Onset Support group.  What both of these meetings made me realize is that those with Young Onset Parkinson's Disease are a very wide ranging group.

The official designation for Young Onset is that symptoms start before you reach the age of 50.  However, that involves a lot of people. My symptoms started at 32.  There were people I met at the conference who were in there 20's when their symptoms started as well as folks who were in their late 40s.  At the support group, even though I was one of the few people who had symptoms for more than 5 years, I was the youngest person there by at least 5 years.  There were people who had symptoms for over 10 years, but nearly everyone was approaching 50 or already over it.

However, age is only one factor in our differences.  These differences include family status, work status, general level of health, medication effectiveness and availability, and attitude.  Also, many of these factors will change as the disease progresses.  For example, I am married with two young children, work full time, am relatively healthy (other than the Parkinsons), respond great to my medications and am generally positive about my future both in finding a cure and my ability to manage this disease.  All these are factors that affect both my life and my disease.  Since I work, I probably have more stress in my life.  However, I usually respond well to stress and so far I have not seen any major effect on my disease progression (as far as I know).  Also, when my meds are on, I can type normally and perform my job well.

Work status seemed to one of the big differences I've noticed between Young Onset people.  It was surprising to listen to how many people had retired, gone on disability or been fired from their positions because of their disease (many of these people were fired before their diagnosis, yet, their symptoms were causing changes in their job performance).  Also, while it seemed most people had kids who were fully grown or nearing college age, there were still a few of us with young kids (under 10) and even a few who were still deciding whether they wanted kids.


Not only do these differences place many of us in different points in our lives, but they make our treatment plans and the way we deal with Parkinson's unique.  The fact that someone has retired or has grown kids makes there ability to workout and focus on their health easier.  Yet, I was more likely to see those who were working full or part-time more active and more focused on their health.  Partially, this is out of necessity, because if you are the main provider in your family, you are going to damn well make sure you are there to provide.  But it also seemed that those who take control of their disease were in general doing better.

It was not so much a matter of age or time since diagnosis either.  I don't want to sound callous or harsh, but there were people I met in their 40s who seemed to have given up and were complaining about every issue that affected them, while I also met folks in their 60s who were exercising every day after living with this disease more than 30 years.  I don't want to discount that PD treats everyone differently.  We have a friend who has a particularly fast progression.  However, I can say, with my disease, to use the old cliche,

I have Parkinson's, it doesn't have me.

It is not as amusing as you think it is

Recently at work, I was walking towards the cafeteria before lunch.  I had just taken my meds and was not fully on, so I was more shuffling rather than walking.  Where I was walking was carpeted and a person who did not know me commented, "don't touch me, I don't want to get shocked."  I looked at him confused and he asked if I was trying to build up static electricity on the carpet (I work with a lot of engineers).  I laughed it off at the time, but in the back of my head wanted to say, "No, I'm shuffling my feet because I have Parkinson's, asshole."  Since it was totally inappropriate to say that at work, and I was not in the mood to make someone feel bad, I let it go and just said, "No, this is how I walk sometimes," and moved on.

However, it got me thinking/wondering what the appropriate response should have been.  Should I have educated him, nicely and explained that what he was joking about was not under my control or was I right to just let it go or should I have made him feel small and insensitive in a "work friendly" way.  Granted, my employer knows full well that I have PD and they are very supportive, so I felt safe talking about it, while others might not in that situation.

This is a big issue in my family, for not just me, but my daughter as well.  I have a young daughter that has many medical issues.  Among them she is deaf/hard of hearing and has a balance impairment.  She did not walk until the age of three and a half and will always have balance issues that she has to overcome.  She is also a motivated girl who works harder than anyone I know to improve and thrive.  Every teacher and therapist she has ever had, has fallen in love with her and is amazed at her progress, motivation and drive.  Yet, I know there will be comments in the future on the play ground and it frightens me.  I don't want anyone to hurt my little girl, but I also don't want to be so overprotective that she cannot take care of herself.  Currently, she is young enough that her classmates haven't yet separated into cliques and/or tease each other but when they do, any parent of a child that takes issue with my kid better be ready to deal with me and my wife.  And if the parent is hesitant about dealing with their child, our response won't be work appropriate.

We don't advertise my diagnosis or feel sorry for ourselves. Our friends know as well as my colleagues at work.  Also, if someone asks what is wrong, I'll tell them the truth about my diagnosis.  However, it is never used as an excuse for me or my family.  My kids are not suffering because I have this diagnosis and my daughter is thriving.  I still wrestle with them, beat them at video games (not as much as they get older), am active with them outdoors, etc.  So, if you're feeling sorry for my kids or my family, don't.  We have a very good life.

Also, don't take this as we cannot find the humor in our situation as well.  When we found out about my daughter's hearing loss, we began learning sign language.  We don't use it much, but we know more than a typical family using baby signs would.  One day when I was signing to my daughter while my tremor was pretty active, my wife turned to me and asked did that mean I was stuttering?  However, just because we can joke about our situation, doesn't give everyone the right to make comments or snide remarks.

Day 2 Week 2, Couch to 5K

This was my worst run so far.  Interestingly, when my meds have not kicked in, I have noticed that I run much better than I walk.  In fact, while at work, if I'm feeling a bit off, I might go run or jog down the hall to get myself going and my arms swinging.  Unfortunately, this was not the case today.

I am getting up before the family to do these runs (about 5:45 am).  I take my meds, squeeze a couple shots out of my new inhaler, turn on the iPod and go.  Up until today, when I start running after the 5 minute "brisk" walk, I have felt great.  Today, that feeling never kicked in.  In fact, I really did not feel my meds kick in until after my shower and as I was leaving to drop my son off at school.

Nevertheless, I did the entire run and am glad I did.  I know I'll have good days and bad days, you just have to roll with it.  And to those who don't get what I mean when a Parkinson's patient is discussing on/off periods of medications:

I knew Parkinson's was a pain in the ass, but....

In a study  at the Rush University Medical Center in Chicago that was published in the Journal Movement Disorders,

researchers reported they examined tissue samples from three patients taken during colonoscopies two to five years before the patients developed Parkinson's disease symptoms. All the patients had the characteristic aggregates of alpha-synuclein in their gut.

This study came after a previous study where they found that nine PD patients had clumps of alpha-synuclein in the nerve tissues in their guts, while 23 healthy patients and 23 Crohn's or Colitis patients did not.  What this means, is there may now be a definitive test for Parkinson's Disease and one which could catch the disease even before symptoms begin to appear.  While this probably won't help many people with Young Onset Parkinson's Disease (YOPD) because you typically don't have your first colonoscopy until your 45-50, it definitely could help elderly patients get on neuro-protective drugs that are currently in development or just released.

Considering all the tests I went through to rule out everything else before my doctor officially "diagnosed" me with Parkinson's and the number of YOPD patients that go years before they can convince a doctor it's not stress or in their head (no pun intended), a colonoscopy would probably be a welcomed test if it could give a definitive diagnosis.  And yes, I have had a colonoscopy (the prep is worse than the actual test).

Some other benefits of these results is that it gives a new avenue to study in how Parkinson's develops, because researchers can now look at patients before they actually have symptoms and possibly measure if there is some gradual increase that will move the disease and symptoms from the gut to the brain.  Also, with a definitive test, a common patient sub-group can be used to test new treatments without having to guess if the person is a definitive patient.