Parkinson's is such a Weird Disease

Something that people unfamiliar with Parkinson's might not know is that the symptoms are constantly changing. I don't mean from one day to the next, I am talking about from one hour to the next. Most patients, especially those who have young onset (younger than 60) version. Often, the changes from one symptom to the next happen so quickly that an observer might think that it is faked. If only! My days usually revolve around several different symptoms, with a bit of "on" time most days, when I get a bit of a break from pain and disability.

The crazy thing about "on" time is that my obsessive/compulsive nature kicks in then. I try to do a little bit of housework, but soon find myself scrubbing baseboards with a toothbrush. Or I will start to organize stuff. My family hates that, because I will either rearrange the kitchen cupboards, and then forget where I put stuff; or I will sort though stuff (a task requiring the dumping of said stuff) and then when I have it all spread out somewhere, my "on" state suddenly vanishes, and I can't finish the task. I usually end up either leaving it spread out, or I scoop it all up so that next time will be even more challenging.

Once my "on" time is gone, I go into some sort of "homing" state, and I get obsessed with needing to get to my bed. This drives Derek nuts! If we are somewhere other than home, I need to get home. If I am home but in another room, I have to get to the bedroom.

One of the most painful of my symptoms is dystonia.

This is a video I recorded myself of attempting to walk with one foot cramped from dystonia. I never know how long dystonia will last, or how many body parts will be affected. When my whole body is affected, I twist up like a pretzel. It could last ten minutes, or several hours. As I say in the video, I have cracked bones in my foot by trying to walk with dystonia.

Another symptom that I have frequently is bradykinesia. This is a stiffness that makes any movement very difficult. It feels like I am encased in wet cement, including my brain.

Most people associate Parkinson's with dyskinesia: the involuntary swaying movements that Michael J. Fox made famous. I also get dyskinesia almost everyday. What many people don't know is that dyskinesia is actually a side effect of levodopa, which is the main medication prescribed for Parkinson's. Figuring out the dosage is a balancing act that most of us never master, because it is always changing.

Parkinson's is a fascinating disease to study, even when studying it from the inside.

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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My story, part 3

You may have noticed that it has been awhile since I left off at the darkest point in my life. I tried a few times to continue the story, but I just couldn't get myself to go back there.


So I will just say that I spent about two years in the depths of despair. Any time anyone asked me how I was doing, I would burst into tears. I walked with a cane, and it was very tough to do anything because nothing on my left side was working. I needed my right hand to hold the cane and my left hand was useless.


I went to specialists, and came to the conclusion that medical diagnosis is not an exact science. I went to one rheumatologist who said I had rheumatoid arthritis. He prescribed a bunch of medication, which didn't help, so my family doctor just kept adding higher doses and more prescriptions for RA. Less than a year later, I went back to the same rheumatologist. Now he said I definitely did not have RA, but I did have fibromyalgia. I had researched fibromyalgia, and asked my family doctor about it, and he told me I didn't have it.


I got sent to a pain specialist. After she examined me, I realized that her speciality was inflicting pain. She told me to take a vacation. My doctor sent me to another rheumatologist for a second opinion. Turned out that he had the office next door to the first one, and had pretty much the same bedside manners. He didn't know why I was there when I had already been diagnosed by his partner.


I had been turned down for CPP disability benefits twice, but I kept calling and writing letters. They sent me to a rheumatologist whose specialty was fibromyalgia. He was great, very friendly, and very thorough. I asked him if he would take me on as a patient, but unfortunately he had an ethical problem with treating the patients referred to him by the CPP. He sent them a 12 page report (which I have a copy of). They got back to me and it seemed had only read one paragraph on the last page, where he said that he was not as concerned about the fibromyalgia as he was that I had an underlining neurological condition that he was unable to diagnose. He recommended some tests, but my family doctor would not order them because he didn't think they were necessary. So the CPP turned me down again, citing that their specialist was not concerned about the fibromyalgia, and nothing else had been diagnosed. 


I did get into a physiotherapy class at the Rehab hospital for patients newly diagnosed with fibromyalgia. I learned a lot, especially from the other women in the class. I had similar pain with them, but no one else in the class was having tremors like I had just started having.


I asked my family doctor if he thought it could be Parkinson's, and he said no - he was sure that it was not PD. After another year of me crying in his office because I was in so much pain, and I didn't think I could take care of my children, he finally sent me to the Movement Disorder Clinic in Winnipeg, where Dr. Hobson diagnosed Parkinson's. He started me on levodopa, the standard care med. It didn't help, although when he had me wean off to give Mirapex a try, I had so much pain that I realized that the levodopa must have been helping after all. Mirapex didn't help either. I spent about a year experimenting with various combinations of meds. 


Then, in February of 2005, I tried a combination of levodopa and Mirapex. I starting this combo on a Friday. On Monday, I was shopping at a Christian bookstore. I had left my cane in the van, using a shopping cart for balance. Suddenly I realized that I was walking, without pain!


Soon coming (hopefully): Walking and Leaping and Praising God!