Knowing me to be a lifelong writer, when I was first diagnosed with Parkinson’s Disease in 2009, friends encouraged me to start a “Parkinson’s blog.” But writing about PD was the last thing I wanted to do.
Everyone experiences the happenings of life differently. When diagnosed with PD, I didn’t feel like it was the end of the world or even the end of my world. Oh sure—I had proof it was happening. The tremor in my right hand told me that. It’s not that I didn’t believe the diagnosis. But I did choose to ignore it. I went on with life as if nothing had happened. Blogging about PD seemed a silly idea. The disease was playing no real part in my life. I had nothing to say.
It’s taken 10 years for me to finally find a few words that I hope will help someone else. Being diagnosed with PD can be a frightening experience both for you and for those around you. The most important thing I have learned in my ten years since being diagnosed is that the reactions of the people around you can make the experience even more frightening.
Friends and acquaintances mean well, but they remember, and will sometimes tell you stories, of others they have known with PD. They’ll recall their grandmother who, 30 years ago, was wheelchair bound. They remember with sadness an old neighbor who walked with a shuffle and developed dementia. Upon hearing that you too have PD, their minds superimpose those past lives of others onto your future. In their own minds they start to question your abilities. Yesterday they saw you as someone capable of climbing a mountain and holding thoughtful conversations. Today they are asking if you would like a chair to sit down and they offer to bring you a cup of tea. If you allow it, well-meaning people can make an invalid of you faster than any disease will.
Instinctively I knew that. When first diagnosed, other than close family and my best friends, I kept my diagnosis to myself and I forbid my husband from telling anyone else. I understand that that is not an uncommon reaction to have. It takes time to absorb information and learn how the disease might affect you. For several years, keeping the information close to home was a path that served me well.
I have turned out to be one of the lucky ones. Doctors tell me that the rate of progression experienced remains pretty consistent throughout your lifetime. Although I was diagnosed at an early age, the progression of my disease has been slow. That’s not to say that I don’t have my share of problems. But the problems I do have took ten years to get here. It has shown me that my diagnosis of PD did not mean that I had to, or will ever have to, give up all of the things I enjoy in life.
PD is not fatal. No one dies from PD. You will eventually die of something, but it won’t be PD. Every PD patient is different. Each develops their own symptoms at their own rate of speed. Some symptoms you might already have. Deal with those. Some you may develop tomorrow. Deal with those tomorrow. Some you may never develop, no matter how long you live. Those I don’t bother thinking about. No one, not even your doctors, can tell you what symptoms you will or won’t develop. Don’t allow anyone to tell you what your fate will be. The medical world has made vast improvements in PD treatments since your grandmother’s day. Most doctors today, unless they specialize in movement disorders and PD in particular, are not up to speed on the latest discoveries and treatments. Lots of money has been invested into PD research. Thanks to the Michael J Fox Foundation and others, new discoveries and treatments continue to be made all of the time.
PD is not a disease without answers and PD patients are not people without hope.