My Parkinson friend,
I write this letter to you as a stranger, but I do know you. I may have met you first through the eyes and ears, words and tears of your daughter or your wife, your sister, husband, brother, or son. Then again, I might have met you on the streets of New York City or San Francisco, in an airport or a restaurant. In the years following my diagnosis in 2005, I frequently approached and questioned total strangers who appeared to have what I identified as the PD Shuffle.
I know you in a different and perhaps far more intimate way than do your family or friends. While the disease conditions vary from person to person, we all suffer in many similar ways. I fall in the middle of the night on my way to the bathroom. I bear excruciating muscle pain in my legs in the middle of the night. I sleep in fits and starts and often wake in a panic, coughing and choking because I have aspirated drool into my lungs. I have terrible and frightening nightmares. I also have beautiful dreams in startling detail.
I get depressed; it is part of the disease, we are told. Every PD doctor, sooner or later, asks the question: “Have you ever considered suicide?”
Perhaps, early in your disease, you reply, “Of course not, never.” Then after five years or so you realize that in moments of deep depression you do think about ending the agony.
I get constipated; all PD patients eventually do. I sometimes choke on food; at restaurants where this happens I have been “Heimliched” more times that I can remember. Swallowing is difficult. I cough a lot. Despite taking medicine and walking with a stick, I do fall. But I get up. Rising to walk has gained new meaning.
It’s what life is about.
I start taking medicine at 6 am while still in bed, hoping I can walk without falling to have breakfast between 7 and 7:30. By 8:30 I can walk with a cane or walking stick without too much fear of falling. By 9:30 I can walk without a cane. By 10 am I can dance!
Food holds little interest for me. I lost my sense of smell in 2003; I can taste spicy foods so I have not lost all my sense of taste. I have lost 40 pounds in four years. I readily admit I wanted to lose a few pounds and I feel better with less weight, but it would have been nice to lose the weight another way. By the end of the day I will have swallowed 23 pills, some prescription and some supplements.
So, my day begins. My home, except in the winter, is New York City (NYC). Every morning when I am in NYC I try to get to my office by 8:30 to 9:00 am. It is 23 city blocks, but it is too far for me to walk, so I take a taxi. I dream of the days when I could walk to work. I long for the time when I could spring out of bed in the morning instead of shuffling and fearing a fall with every step. Why do I put myself through going to work? My story answers that question.
In 1998 I knew something was wrong with me, but doctors told me it was the stress of my career. I did not believe it. Nevertheless, I prepared to scale back my business. I was 56 years of age and at my career peak. Two years later I sold my primary business to a large financial institution. It was a painful decision but I knew something was wrong with me. It took another five years before my Parkinson’s was sufficiently advanced that the doctors concluded my problems were unrelated to stress. Given what I know about the course of the disease and the then-existing treatments, I believe an earlier diagnosis would not have made any difference in my life.
The year was 2005. I had poor balance. I had trouble walking long distances. I was losing muscle mass and was no longer the strong man of my youth. My voice was soft and people could not hear me; they said I mumbled. I could not smile, for I had the well-known Parkinson’s mask. I had lost my sense of smell; I choked on food. I coughed a lot. My social circle had narrowed. I wanted to shrink into a hole and disappear.
There did not seem to be any reason to go on living since my disease was described to me as degenerative, progressive, and incurable. No known medication even slowed the downward progression.
I purchased every book I could find on Parkinson’s Disease; I read scientific and medical research papers. Some were uplifting, others were not; some offered advice and others spiritual hope. None provided what I needed; I wanted practical tools for making my life easier.
Despite my depression, I decided I had to take ownership of my disease. I would tell all my family, friends, business associates and clients. I told everyone of my disease and of course I received sympathy. My phone never rang much anymore. I had, in a few short years, gone from a ten hour a day happy productive human being to a fumbling, stumbling, mumbling depressed soul. I started to use wheelchairs in airports. I fell more. My voice became still softer. I had to yell to be heard; friends and family became frustrated with me and I with them. My communication skills were slipping away. My hands did not work well and getting dressed was time consuming. My handwriting became small and nearly illegible. Life was discouraging at every turn.
But I was fortunate in several ways. First, my brain worked just fine and the doctors told me that I did not look to them to be a candidate for early dementia. Second, I had a very supportive family, many long-term employees and a small but loyal group of friends. Third, I had never been one to give up when faced with difficult problems in life; I certainly was not about to start now.
A doctor said, “Parkinson’s Disease usually takes a long time to kill you.” I was not sure how to take that. Did it mean I could look forward to living a long life? Or should I expect to suffer many years before I was rescued by death? When I inquired, I was told that my general health and family history was so good that it was likely I would be burying my friends, and they were right. In the last ten years, ovarian cancer, kidney cancer, lung cancer, ALS, heart attacks, and other health failures have claimed many friends, all younger than me.
If God has given me only Parkinson’s Disease, then perhaps that is not so bad. But then, people do die of Parkinson-related matters. One popular way is to fall and crack your skull or perhaps break your hip. I have considered wearing a motorcycle helmet, knee pads, and hip pads. This getup is not exactly high fashion for board meetings, but then again I have attended board meetings where a little protection would have been useful. Eating, talking, and then choking to death is another way to die. If you are old, the hoped-for painless way to die is pneumonia. I am opting for pneumonia, but I have had the vaccines so perhaps that too is wishful thinking.
Most people die with Parkinson’s, not of Parkinson’s.
“How long do I have?” I asked. No answer was forthcoming. It all depends on the disease’s course. Every person is different, but the person makes a difference. It depended, in part, on me. I could let the disease take control of me or I could take control of the disease.
Over a period of months, one of my doctors gave me his own prescription for a long life. “Do not retire. Go back to work; join boards, get involved in charities, expand your circle of interests and friends. Take up Tai Chi or yoga or square dancing. You must exercise your brain, your body and your soul. To retire is to die sooner rather than later.”
My doctor is right. You must never give up; you must challenge the disease with your brain, your heart. You must engage your brain and your heart with lively activity. This exercise defends your soul and your spirit. It is not easy but then who promised us an easy life?
So, my friend, have I got you thinking about challenging your disease? Of taking charge? Good, let’s GO!
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