Dear Friends, The purpose of this note is not to scare you, nor to ask for pity, but simply to share with you what I have been experiencing with Parkinson’s. It is hard for me to explain it verbally — I dislike whining and sometimes my vocal cords are affected so severely that I can’t make myself understood — so I decided to write about it.

After eleven years of being virtually symptom-free (in fact, a slow deterioration was actually being masked quite effectively by drugs), Parkinson’s arrived with a vengeance last year. Fortunately, I have access to doctors and health care professionals who specialize in Parkinson’s. It has been eye-opening and challenging. There have been instances when I simply could not get up off the bed, or the couch, or the toilet (if I made it there in the first place!). It was as if somebody had pulled a plug, causing my brain to lose its connection with my body. Even simple commands were totally ignored.

During these episodes I frequently found myself “frozen” in a certain position, unable to move even the tiniest muscle. I felt that if only I could stand upright, I could make my legs “remember” what walking felt like and get going again. By that time, however, my muscles were so exhausted that no amount of effort was sufficient to force me into a vertical position.

My usual reaction to this situation was to become furious with my body. I criticized myself for not being fit enough, for giving in, for not trying hard enough. Until recently, I believed it was simply a question of “mind over matter” — that is, my mind should be strong enough to control the impact of Parkinson’s.

However, my physical therapist (PT), who has worked with many people with Parkinson’s, explained to me that
it’s a physiological issue. If there is not enough of a neurotransmitter — dopamine, for example, or adrenaline — present in my body, it’s not my fault if my legs won’t move. In fact, there is actually very little I can do about it until I get more of the neurotransmitter into my system. By itself, my brain simply cannot move my legs.

I asked, “but why, when I fall down trying to cross a room, can I so easily walk up and down the stairs?” My PT explained that legs recognize patterns and that climbing, whether up or down, is a familiar pattern for my legs to follow. Now, with her help, I am working on other “patterns” that will help me stop, turn and do other basic tasks like brushing my teeth. An excellent Parkinson’s neurologist is assisting me to find other methods to alleviate freezing — e.g., adjusting my medication schedule and diet.

The hour spent at physical therapy is the highlight of my week. After warming up, I ask the PT to challenge me on balance and flexibility. Recently I showed her a yoga balance pose I had been practicing. I had barely started when she said “good!” My immediate response was, “No it’s not!” But then she explained, she wasn’t comparing me to other people with PD but against my own recent efforts and the progress I had made — that made me feel good.

I am also doing a few other things differently. I still tend to get mad when I can’t move my legs, so first I do some deep breathing. Then I go for tiny movements like lifting my toes until I can rock my feet back and forth and eventually my whole leg … and voila: I’m back in control and I can move!

Thanks to each of you for all of your love and support. Please don’t worry about me; I have always been a survivor and I intend to stay that way!

Sincerely yours,