By Judie Donaldson

I was deeply touched by Lois’s last column about losing a friend to Alzheimer’s disease. She shared her experiences and feelings with such tenderness. As I read, my eyes darted from one sentence to the next as I projected how I would feel if I had a similar experience with a good friend. I haven’t. I have, however, had an experience with a progressively degenerative disease. I’m referring to my own diagnosis of Parkinson’s disease.
Not surprisingly, it came out of the blue. I had been the picture of health all of my life. I never even had a bug bite or a minor infection. I never got a headache. I’m one of these people who puts my head on the pillow at night and wakes up in the morning. I never went to the doctor except for a perfunctory checkup. Until the spring of 2015.
I was 76 when I made a doctor’s appointment because I was having difficulty controlling my handwriting. It’s the first time I had ever gone to a doctor with a symptom of any kind, and it took four doctors and a year before I had a diagnosis. The first doc, a primary care physician, offered that I had a vitamin deficiency.  This seemed ridiculous. I immediately selected a new primary physician! She had the intelligence to set me up with a neurologist, who proposed Parkinson’s disease, but said that my symptoms weren’t severe enough to justify a diagnosis. She told me to return in six months or a year and then, in the worst imaginable bedside manner, coldly informed me that Parkinson’s disease wasn’t preventable or curable.   Thanks a lot. I made sure never to see her again.
A year later I saw a second neurologist, who assessed my gait as I walked down the hall, observed my handwriting, directed me to do a couple of other movements, . . . and pronounced that I had Parkinson’s disease. It was pretty anti-climactic because I had spent the intervening year researching the disease and had already diagnosed myself.
The second neurologist was about as helpful as the first one. He told me that I was fortunate because I had the best disease he could diagnosis. “What other diseases could be worse?” I asked. “Alzheimer’s and Dementia,” he responded.    Then, in a Pollyannaish manner, he extolled the meds that are available to suppress Parkinson’s symptoms. He led me to believe that I could be rather symptom free for the next 10 to 20 years. What planet was he living on? It only took a few conversations with people with Parkinson’s to learn about the ups and downs of medications and their extreme side effects––which can include stimulating new conditions!    My diagnosing doctor didn’t have anything more to offer other than, “Come back in six months or a year.” OK, I thought, don’t look for any help here.
My immediate challenge, then, was to find a comfortable way to tell my family and friends. My three kids were hurt because I hadn’t shared anything with them over my year of seeing doctors, researching, and obtaining a formal diagnosis. But, I had needed that time to adjust to what I experienced as a cataclysmic change in my life. I initially told my kids and others . . . by email! This was both safer and easier for me and gave the important people in my life time to react privately as well. Not surprisingly, now I inform people readily and casually.
So, how am I dealing with going from a nonchalantly healthy person to someone with a pretty unforgiving disease? First of all, my goal is to be as informed as possible so that I’m smart about the ways in which I’m living with the disease.    Second, I’m exercising as much as I can. This is the best prescription for people with Parkinson’s. I’m enrolled in an excellent training program for people like me. It’s based on boxing!  Yes, boxing, which is believed to show promise of suppressing some symptoms and fighting the disease. I’ve been boxing for a year and a half now, and it still feels as bizarre as the first day I put gloves on! I think it always will.     Third, I’m trying to stay in the present and live life as intentionally and happily as I can. It’s a challenge not to imagine my potential future trajectory, and    I would be dishonest if I didn’t admit that I’m terrified of being handicapped and dependent.  But, as Alan Alda––who was recently diagnosed–– said, some people have severe and difficult symptoms, and some people don’t. I have to remember that and not live in a state of catastrophic expectations. Fourth, I’m doing what I can to prepare for the future. Because I live alone, this is particularly important. Overall, I’m indebted to my Buddhist practice for grounding me when I get off track.
There are a couple of experiences that I have encountered that I didn’t anticipate.  The first is an odd feeling of shame. Isn’t that crazy? Embarrassment is one thing. But, I have to fight a feeling of being ashamed that I have a disease with some strange symptoms. I’ve talked with others who struggle with this as well. The second uncomfortable experience, which may be partially or totally a matter of projection on my part, is the sense that others are sometimes looking at me to assess whether my symptoms are worsening. I can understand this and, in fact, appreciate that this commonly comes from a feeling of caring. But, at times, I feel as though I’m  on display. It’s odd.
I was motivated to write about my condition when I read Lois’s column. I hope that it has been useful to you in some way. Having Parkinson’s, I will readily admit, has increased my sensitivity and empathy to members of Carquinez Village who are dealing with myriad conditions. If you have any questions, or I could be of help, please email me at judiedonaldson1@gmail.com.  In the interim, enjoy and treasure your life every day!

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