CHAMPs > Parkinson's CHAMP
Why I walked...
Everyone who participates in the Unity Walk has a passion behind their actions. There are so many incredible stories, and each one, it seems, offers hope and inspiration. Below are some of these stories.
I was one among the many who walked in the Unity Walk. Here is my story:
I got P.D. about 15 years ago when I was 58 years old. There were many first signs, like my wife was skiing faster than me, and I was falling more often. Writing also required an effort to get the hand to move the way I wanted it to, and my wife noticed that I was not moving my right arm when walking. But the most prominent symptom was a deep boring pain in the right upper arm. It would make it difficult for me to go to sleep. I actually thought I might have a bone tumor, but a plain x-ray of the area showed no tumor. While this was an occasion for relief, I still could not figure out what was causing the pain. One day, while I was reading The New England Journal of Medicine (I am a physician), I happened to come across a letter in which the writer, a surgeon, described exactly the same symptom of pain in the arm, later to reveal itself as the initial symptom of P.D. I consulted a neurologist and he confirmed my suspicion that I had Parkinson's disease. I kept the diagnosis to myself for a few months. Finally, I told my wife about it. At this time, I also had a tremor of the right thumb.
My initial treatment was with Sinemet. Later on, Mirapex was added and finally now for the past 3 years or so, I am on Stalevo instead of Sinemet. Early on, my neurologist suggested that exercise in which the flexor and extensor muscles are alternately stretched and contracted might be good for forestalling rigidity. I have been exercising ever since except for a brief period of 3 years when I developed angina on exertion. My only coronary risk factor was moderate hypertension. The angina finally became disabling enough that I underwent 4-vessel coronary bypass surgery in February 2006. It was so successful that I began running every morning, enjoying my new lease on life. For the past 2 years, I have run in three 5K races, and won some trophies in the 70 and over age group. I am still running.
Initially, for about 2 years after I had the diagnosis of P.D., I did not tell my two daughters about it. My excuse was that it would serve no useful purpose burdening them with my troubles when nothing much could be done for them. I had come to terms with my P.D. very early on and have always had the attitude that "if you can change something, do it, but if you cannot change it, adapt to it." I never asked the question "why me?" After I told my daughters, I told my friends too. The reaction was always very empathetic. It was my elder daughter who registered me in a 5K race two years ago; this forced me to practice for it, and I am most grateful to her for nudging me in this direction and forcing me to think of myself as any normal person. I also have continued taking dancing lessons in the local high school, and I feel no difficulty with the activity. The only thing I have to remember to do is to take my medicines half an hour before the lesson.
About 6 months ago, I joined two Parkinson's support groups. My wife had been trying to persuade me to join such a group, but I told her that I knew everything I needed to know about P.D., so why did I need to join. After joining the groups, I have found I enjoy the company of the members of the groups. They are from various professions and have disease of varying severity. I find I can explain many of the medical underpinnings of the disease to them, thus relieving any doubts they have in their minds about what is wrong with them, where the lesions are in the brain, and what new treatments are making their way in various trials. My help in understanding their disease is greatly appreciated, and it gives me a good feeling that I can be of help to others because of my medical background. I went to the Parkinson's unity walk in Central Park last month.
There were thousands there, and I was most impressed by a speaker from Los Angeles who has run in a marathon every one of the last four years; this despite his having P.D. for twenty years. Clearly nothing is impossible where there is a will. I say, go for it; there is nothing to lose but your feeling sorry for yourself. Which is what all of us want, anyway.
Another thing I have discovered is that Americans are a very generous and gracious people (I am from India). For example, the persons organizing the support groups are themselves free of P.D. There are many others also who come because they have spouses with the disease. Some still continue helping even when their spouses are no more. One person who himself has P.D. gives us a free one hour class in Chair Yoga every time we meet, which is once a week. With the support groups, my life has taken on a new dimension, to the point that I look forward to going to these groups every Friday. I no longer think of what will happen to me in the long run; life is so enjoyable as it is that the future holds no fear. My wife and I are both retired for the past 2 to 3 years, and we are enjoying life, visiting both family and friends.
My message to others with P.D. is: "Don't let P.D. rule you; rather, you should rule your P.D., and I am proof that it can be done."
A tiny bit of my story:
I was diagnosed as having Parkinson's disease in November of 2001. I was 36 years old at that time. My wonderful boyfriend had just proposed to me and he also told me he suspected that I had Parkinson's. Three Neurologists confirmed it. I tried to dissuade him from marriage, but he wouldn't hear of that. “A short time with someone wonderful is better than a lifetime with some one else” was his refrain. We got married, I became pregnant within 3 months and we had our fantastic little girl! Five months later I got pregnant again and we had our second wonderful baby girl. These two are the light of my life. I often say to my husband, “If I had know that having kids was this much fun, I'd have done it years ago!”
Lot's more to tell... of a life before, but instead of a resume, here’s a paragraph. As we all have, mine too, is a life time of stories: joyous times, fun times, funny times, family times, lovely music with parents times, getting spoiled by everyone times, Mommy and Daddy are my hero’s turned into Mom and Dad are my hero’s, obstacles were overcome, unconventional roads were taken, failures turned into fantastic achievements, ladders climbed, wish list mostly accomplished, loved greatly, laughed ‘till I snorted, brain was stretched, confident, pretty, helpful, thoughtful, capable, smart, achiever. I thought that life went in one direction - straight up (at least until you were in your 80’s, right?). Parkinson's hacks away at you. When you pee in your pants in front of your husband and stand there mortified, crying, but not able to move - and that story is not infrequent or isolated, you ask, “What happened?” I was always the helper, not the one in need. You tell yourself, I'll beat this thing. When worse happens almost weekly/ daily. Well, you can't cry all the time, so you move forward (not upward, but you tread water) you teach yourself to enjoy this moment ... ‘cause I've got these two fantastic kids and I don’t want to miss a moment with them. They smile. They laugh. I laugh through tears. They worry. I explain about 'tears of joy'. Yes, I lie, but they are 4 and 5 years old. They believe me and so we laugh. I crawl or sit down and wait until an hour passes and the meds work. Or maybe today they don’t. How long should I endure the cold floor before I make the tremendous effort to move to the living room carpet? The couch and TV are 5 yards away, but I stay on the floor shivering and singing nonsense songs with the girls that we make up. I laugh until I snort! Can this be the same woman that had the window office 5 doors down from the CEO? Yes, it’s me. Just me, with this experience, too. I crawl to get the girls their coloring books and crayons, and sippy cups. They talk and talk, I’m absorbed in them and the cold and pain are almost forgotten. I have them. I am happy. Not trying to be happy, just really, truly happy. How many people can say that? I am the luckiest person in the world because I have these two.
I have just "come out" with my Parkinson's, with participating in last month's Unity Walk.
I found out that the tremors that I had discovered in 1997 were indeed PD in April of 2002...I was about to turn 50, my mom had just died of Alzheimer's, and I was terrified. My life had a serious degree of stress...I have been a teacher for children and adults with visual impairments since 1975, and in 1995 had been selected California Teacher of the Year. I was visible, I was an advocate for my school children, and I always felt sick. I was newly divorced with 2 young children, and yet I kept going. Life has its goals.
One of my life's ambitions was always to start my own jewelry business, and so I did last year. Partly to feel success with making beautiful things, and partly to provide my cramping hands with some self inflicted physical therapy, I started "I Just Got Back". Each necklace is named for a place I have been and loved. And 10% of every dime I make is donated to one of the Parkinson's organizations. My dream is to start a co-op of people with health "concerns", to practice their art while donating to their respective organizations searching for hope and hopefully cures. And yes I am still teaching my blind students part time, because retiring would mean giving in to the Parkinson's. PD will not win.
As outgoing and open as I have always been, and as much as I have taught my students to be open about their disabilities, I could not really face nor discuss mine. Joining 10,000 or so others in Central Park last month was the boost I needed to be open, be strong and be involved.
San Rafael, California