Friday, August 4, 2017

When Your Caregiver Needs Care

    My husband, Derek and I just spent our 29th wedding anniversary in a hospital room. This is not the first time we have been there, done that, but there was a major difference this year. Derek was the patient.

    Anyone who knows Derek knows that he can fix almost anything, figure out how to assemble just about anything without resorting to the directions, and he somehow knows how to do almost everything. Technology doesn't scare him at all, in fact - he has that somewhat annoying ability to make gadgets work just by turning them on. I would be lost without him, literally - I have no sense of direction. For the last 29 years, whenever I can't get something to work, I know that eventually Derek will be home and he can fix it.

      So it was mind-numbing to find out that this man who has always been so strong for me has cancer. How can that be? He has always been so healthy! I don't think he has taken more than 2 or 3 sick days from work, ever.

     Seeing him on a hospital bed, looking frail was the most bewildering experience I have ever been through. I don't like this role reversal - not one little bit!

     In the last ten years, I have lost both of my parents to cancer. These losses were devastating, but it has been many years since I have been dependant on my parents. They both died much too young (Mom was 61 and Dad was 70), but you expect your parents to die before you do.

     I know that I am being morbid and pessimistic and looking at the worst case scenario - that I could lose my husband. Derek has had a much more positive attitude through this whole ordeal. The kids would rather talk to him about his health than me. He says he is just fine, and hopefully he will be one of the 5% of patients who survive pancreatic cancer. He may yet outlive me.

     So it could happen that we spend more anniversaries in hospital rooms, and maybe we will take turns being the one in the bed. Or we could both be patients. I might be writing about our 50th anniversary, and I will keep you in suspense. Wait for it!

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.
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