I was diagnosed with Parkinson’s Disease in 2009.
For six years, only a few of my family and friends have known that. It’s one of the reasons I have now elected to quit my job but it isn’t the sole reason, or even the main reason. My disease progression is slow and I am able to live a fairly normal life. The most noticeable outward sign I have is a tremor in my right hand. Oh sure, there are other symptoms. But they are mostly symptoms that other people wouldn’t notice or they have been masked by medication to make me appear normal.
“Appearing” normal however, isn’t the same thing as “being” normal and I’m sure others have seen and/or felt the difference. Without knowing the reason why, well, I can imagine that they just likely think I am crazy…
So, to all of my friends and far-flung family, neighbors, acquaintances, etc. : No, I am not crazy. I am not lazy. Or anti-social. Or bored with your company. Or any of the other things that I think you must think of me. Parkinson’s Disease is simply a weird disease that leads to a strange way of life.
When you’ve invited me to dinner I have often declined, not because I don’t want to socialize with you, but because my medication causes a pseudo-narcolepsy, especially at the end of the day when I am already tired. I will fall asleep, no matter where I am or what I am doing. I tend not to plan evening activities because of it. When I do attend social events, I am no longer very helpful. While my motor skills usually work just fine, Parkinson’s can make me unpredictably clumsy. I sometimes feel off balance for a second or two. It’s a second or two you probably wouldn’t notice, but which makes me nervous and apprehensive about performing tasks in strange places. It would be just my luck that my unpredictable clumsiness would occur when I was picking up a tray of your expensive cheeses or passing glasses of red wine around your beige carpeted living room. Better to ask your sister to chop the vegetables and send your husband down the basement stairs to fetch extra dishes from the pantry. There will be less blood and broken glass that way. I will gladly, however, sit at your kitchen counter and keep you company with my dazzling personality while the other guests are partying around the pool. I promise to even save a funny story or a piece of juicy gossip just for the occasion. Or come to my house and I will be happy to cook for you. I’m not so worried about making messes in my own kitchen. And yes, I am happy even if I don’t look it. I’m often asked why I’m frowning. I’m not frowning. My expression is a symptom of my disease called “masking.” It is not an indication of how I’m actually feeling inside.
Because my progression is so slow, I can still do most of the things I have always enjoyed. But Parkinson’s Disease has made me very time sensitive. I know that being happy and healthy today doesn’t guarantee that things will be the same tomorrow. I watch and listen to people talk about all of the things they will have time and money for…”someday.” Someday they will travel. Someday they will start a retirement fund. Someday they will buy a nicer house and then they will paint all of their rooms beautiful colors… People spend their lives planning. Well here’s a question to ponder: what are you going to do if “someday” never comes?
If Parkinson’s Disease has taught me one thing it is to do the things you want to do and do them now. You don’t know what kind of a life you will be living tomorrow. Take the vacation. Buy the boat. Retirement is not always where you’ll find the golden pot at the end of the rainbow. Better to follow the rainbow here and now. That way, you’ll have fewer regrets.