Though I was diagnosed 8 years ago, I consider myself as someone 10 years into this disease, because that's when my body started to feel weird. I found myself watching people walk, and I thought "Gee, they make it look so easy."
I have a long list of symptoms, but freezing gait interferes with my life the most. Medications help very much, but then there's the Abnormal, involuntary body movements that can appear as jerking, fidgeting, twisting and turning movements; frequently caused by dopaminergic medications to treat Parkinson’s.. If you were to meet me you would notice the dyskinesia, but, you would also think I look pretty good. But as all of us with Parkinson's disease (PD) know, it's what you don't see that sometimes is the most challenging.
Almost a decade ago, in the best shape of my life, I started to notice an awkwardness in my gait, stiffness, and difficulty peddling a bicycle. When friends started to question what was wrong with me, I ignored them at first. But after several months I had to face it, something was wrong. Deep down I think I knew pretty early on what it was. It was still devastating to hear the words "you have Parkinson's disease." I was only 53 years old.
I spent my first year feeling pretty sorry for myself. I wrote a lot of poetry, and did much soul searching as I mourned the strong body that was no longer mine. I learned a lot about myself and life.
Then one day I had an epiphany. I could choose to live my life with joy, or not, but either way I would still have Parkinson's. It was a simple choice — I chose joy. Around that same time, I found a saying "life isn't about waiting for the storm to pass, it's about learning to dance in the rain." It really resonated with me and so it is on my kitchen refrigerator to remind me to find joy in each day.
But some days that's not so easy when you have an unpredictable disease like Parkinson's. In the course of a few hours my motor skills can range from barely able to walk, to bicycling 10 miles or doing an aerobics class. But the medicine can be finicky, so I never know what the day will bring.
One minute I'm fine, the next my feet are glued to the floor. For many with this disease, this is what isolates them, and that is a great tragedy. PD is not fatal, so life must be lived! Some days it's very scary to go out. The anxiety of being seen with my symptoms is real, but so is my determination.
I admit, there are days when I feel I don't have control over my day. And, since I don't like not having control I had to find a way to feel I was taking charge of my future. For me, empowerment came in the form of raising money for a cure. I am proud to say I have raised close to $80,000 in 7 years.
Raising awareness is another way. Writing to our government officials is another. And volunteers for clinical trials are always needed. But we all need to do something if we want to see a cure in our lifetime!
Meanwhile, my disease is progressing. Am I hiding in my house? NO! I go to the gym 6 days a week and I just became a certified Yoga instructor! If I had one piece of advice to give to a newly diagnosed person, it would be EXERCISE! And LIVE. I know I am.
Find out how you can get involved at Parkinson.org/GetInvolved.