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Thursday 7 December 2017

They call me the newlife gambler

The quandary: When should I start medication? Opinions vary. Some say start immediately to enjoy the time you have left; others say wait as long as you can because the lepodopa might cause possible side effects, most notably dyskinesia.

In my case, the first neuro told me he would not give me medication yet. He said I should wait until it affected my work. "If you were a watch maker or other occupation that involved intricate movements, I would give it to you now."

To which I responded, "But I don't enjoy it when my hand is jumping around all the time."

He would not budge and I, .....being as sharp as a bowling ball at the time,... I meekly acquiesced.

Some time later, I decided to get a new neurologist. This time, after explaining the risks to me, he prescribed the agonist mirapex and an antiviral drug called amantadine. My tremor was gone 2 days later and I decided to stay with the medication and risk the troubles that I thought would haunt my future.

One of the knocks against levodopa is that after continued usage and higher dosages, it can cause dyskinesia. I have no sign of it yet, but I have sentries on the lookout for its appearance. Odds are it won't affect me. I ain't afraid of no dyskinesia. But, let's take a closer look. From M.J. Fox Foundation

Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn't happen in everyone with Parkinson's, and in those who do have it, it occurs to different degrees of severity. In some people, dyskinesia may be painful or bothersome to the point that it interferes with exercise, social life or other daily activities. Many people, though, say they prefer having dyskinesia to being rigid or less mobile due to Parkinson's. Dyskinesia tends to occur most often during times when other Parkinson's symptoms, such as tremor, slowness and stiffness, are well controlled. (This is what doctors and researchers call "on" with dyskinesia.) Stress or excitement can exacerbate dyskinesia.
I don't like any of those options. At the moment I am OK and I know I am more fortunate than most PWP. My symptoms appear to be under control. I wish the drugs that have taken me through 7 years would work for all PWP; but, because PD is a designer condition, what works for one person, may not help others at all. My cocktail worked. When diagnosed (65), I still considered myself to be young and I wanted my quality of life to continue as long as possible and to date, any of my symptoms can be classified under the heading, "nuisance"

You and your doctor will have to make a decision as to what drugs you need and when to take them.

So far, it has been 7 years post diagnosis and although I have had to make adjustments, I am still cruising along, somewhat oblivious to any changes to my body and wishing for the day when I will not have to go war with my blankets when I get out of bed each morning.

We will call that day the "CURE"and it is not far off.

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