I found out I had Parkinson’s disease when I was 36. Technically it’s called young-onset Parkinson’s disease (YOPD) because, well, I was young. This is the same Parkinson’s that Michael J. Fox was diagnosed with at the much-too-young age of 30.
At 36, most women are busy with careers, kids and trying to become contributing members of society. I was right there with my girlfriends until I got smacked in the face with what was to become my new reality. That was nine years ago.
Being diagnosed with a degenerative neuromuscular disease isn’t a curse or a death sentence. Not for me, anyway. It has taught me patience, courage and to enjoy every moment of life. Sure it’s inconvenient, often tiresome and can be really frustrating. Some days I find it difficult to get out of bed or stand up from a chair. But dealing every day with the hand I’ve been dealt, I’ve learned to be patient with myself and to take simple everyday tasks one at a time.
Friends often ask, “Does it hurt? What does it feel like?” Or — even funnier to me — “can you have that glass of wine with the medication?” Hell yeah, I can have a glass of wine.
In an effort to demystify the disease, educate my friends (and yours) about what having this disease as a “young” person really means and to honor Parkinson’s Awareness Month, here are six truths about what it’s really like to live with Parkinson’s disease:
1. It’s not painful. While young-onset Parkinson’s disease makes me stiff, shaky and unbalanced at times, except for an occasional muscle cramp, it is not something I would describe as painful. To best describe how it affects me, I make the comparison to the Tin Man from The Wizard of Oz. With oil (my medication), I can move freely. But when the oil is low, I freeze. My brain says “go,” but my body has a mind of its own.
2. The medication for Parkinson’s has visible side effects. Taken in higher or more frequent doses, my medication causes dyskinesia. That’s the involuntary, uncontrollable movements of the body you’ll see me make from time to time. I am always experimenting with medication doses, trying to balance the side effects with the inability to move.
3. This disease is variable and unpredictable. You may see me at times looking fairly symptom free. But that can change from moment to moment. I can be sitting having lunch, looking “normal,” and then move to get up and realize that I can’t. You can imagine how frustrating this is. Just picture your mind saying “gotta go,” but your body simply refuses to respond.
4. I can exercise. Hard. There is no need to worry that I am pushing myself too hard — even if I have to stop for a break. Breaks are important for me. I need to catch my breath to avoid chest muscle contractions because these make me feel as if I cannot breathe. But I am OK. It doesn’t mean I am dying. It doesn’t mean I have overdone my exercise routine. It just means I need to rest for a moment. Yes, occasionally I have to stop and sit, but doesn’t everyone do that once in a while?
5. Yes, I can have a glass of wine or two. No doctor will ever advocate drinking along with taking medication, but as a big fan of wine, I made sure that it was OK with my neurologist. There are only so many sacrifices a young mom can make! So, no, I won’t be getting hammered at the next party, but I can certainly enjoy (and cherish) the times that I feel good!
6. A community system is crucial. Having a support system of other people that are experiencing the same symptoms I am is a tremendous help. In fact, at times it feels like that support system is actually essential to managing the disease.
The number of people being diagnosed with YOPD (“young onset” means symptoms start before about 40) is on the rise. Every so often I get an email or a phone call from someone asking me to talk to or email a friend or relative who has just been diagnosed with YOPD. I am always happy to reach out.
But let’s get real for half a second: Just like everyone else who suffers from a chronic illness, I secretly hope that one day this disease will be a thing of the past and that I will no longer need “oil” to live and move freely.
Beth Hochstein is a mother, dancer and fundraiser. She just launched DancePartyforParkinsons.org, a nonprofit dedicated to raising funds for YOPD research.
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