Friday, March 17, 2017

0.001% Chance that I don't have Parkinsons

I hate being a medical anomaly! I have often had the opposite effect of what medical treatments are supposed to have. This is nothing new. Even when I was a kid, medications like anti-histamines that made most people sleepy would keep me up all night. Caffeine, on the other hand, would put me right to sleep.

I recently had the battery to my deep brain stimulation implant removed. (Labelled as a 'pacemaker' on the diagram.)I remember being told before I had the surgery to install the DBS that if I ever wanted to, I could have it removed. I sure didn't think that would ever happen. I was very hopeful that it would stabilize my wild "on and off" swings, and slow down the progress of the disease.

Since there is no medical test to definitively diagnose Parkinson's, and there are other conditions that may cause Parkinsonian symptoms, I asked my neurologist what the odds were that I didn't have PD. I don't remember the exact number, but it was a minuscule percentage.

My brain programmer Renee said that she could see a difference when the implant was turned on, but I really couldn't tell. And as I mentioned a couple of blog entries ago, it started to give me tremors.

I had just the battery removed; the wires are all still in place. Having the wires removed is a much more complex surgery, and the only neurosurgeon in my province qualified to do this surgery is the doctor who put mine in, and he has since then retired. Also, this way if I ever want to try  DBS again I only have to have a battery installed.

Well, since then, I have been gradually weaning myself of Levodopa, the major PD drug that I take. I have actually been doing better with the lower dose. I tend to have dystonia (severe muscle cramps and spasms) and bradykinesia (inability to move) when I am low on Ldopa, and I get dyskinesias (involuntary dancing, swaying movements) when I have too much. Dyskinesia is actually a side effect of Ldopa.

So I asked my neurologist last week if it is possible that I don't have Parkinson's after all. I have asked this question a few times over the years, and he has always been emphatic that I do, even though I have been an enigmatic patient. I don't think that I felt flattered when I found out that my name comes up frequently at their movement disorder staff meetings.

I will keep you posted.
  • emphaticem
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Friday, March 10, 2017

But you look so healthy!

The vast majority of my friends, acquaintances, and family members (besides the ones who live with me), have never seen me during a dystonic event or severe dyskinesia. It is hard for them to comprehend how many hours a day I am severely disabled. Even most of my doctors have never seen me at my worst.

The medical jargon for the stage of Parkinson's disease I have been in for the past ten years or so is "off and on". When my friends see me at church or out of the house for some reason (usually a doctor's appointment), they often say something like,"You are looking good," They kindly don't mention the 100 plus pounds that I have gained as a result of immobility and injury.

My hubby and kids think it total vanity that it takes at least an hour and a half for me to get ready to leave the house. I confess that I use way more make-up than I used to. I have always loved eye-make up but rarely used foundation, blush, or powder, I was fortunate to inherit my grandma's porcelain smooth skin. don't know whether my  splotchy skin is the result of the weight gain or a symptom of the disease, or if it is just normal aging. My grandma's skin still looked beautiful when she was in her 80's. It takes me a lot longer to do my make-up than it used to. This is partly because I am trying to cover up the splotchy skin, and partly because putting on eye liner and mascara is a hit and miss endeavor, and I often have to clean up the results of my tremors or dyskinesias. 

I am often asked if I am having a good day. While some days have more good hours, I don't live one day at a time. I live one hour at a time. The transformations from one symptom to the next usually happen very quickly, They can be very unpredictable, but I often have a window of "on" time sometime between 11:00 am and 2:00 pm, I consider this a godsend, since it means that I can attend church, if I have arranged a ride and I have enough on time before church to get myself ready.

I don't share this information to invite you to my pity party or to get attention. Parkinson's disease is actually quite fascinating and most people don't know very much about the disease, especially the young adult onset version of the disease. Most people have seen grandparents or parents living with the constant tremors and freezing incidents so common in elderly PD patients. When they see someone like me walking without a limp one minute and then suddenly fall down and not be able to get up, they might think I am faking it.

Remember the news feeding frenzy when Rush Limbaugh called Michael J.Fox a charlatan and made a mockery of Parkinson symptoms? This was in 2006 and I had just been diagnosed. I remember being furious at the ignorance, not only of Limbaugh, but of about 80% of the social media comments that followed.

Unfortunately, Michael J. Fox is still having to face idiots in social media. This You Tube video by someone calling himself David J. plays footage of Michael skating. I understand this perfectly - it has to do with the nature of brain injury common with young adult onset. There are some activities that, if you were good at them before PD and you enjoyed them, your brain might be able to compensate and allow you to do these activities during your "on" time. For me, I love to dance, and I was thrilled to discover a few years ago that I can have moments when I can dance well enough to be an embarrassment to my kids.What more could I want from life?!!!