I have Parkinson’s disease. I was just 36 when I was diagnosed. It was a devastating blow. While I’ll never think of it as a blessing, it has been an incredible teacher, and I’m thankful for so much despite my diagnosis.
I think often about the brave clinical trial participants. These selfless people and families have been willing to put themselves in the hands of doctors to try new therapies that could help all of us who suffer. The drugs and treatments in trials may or may not move forward, but everything we learn takes us one step closer to new hope.
As recently as the 1990s and early 2000s, a drug called Sinemet (carbidopa and levodopa) was the only medication widely used to treat Parkinson’s. According to an article published in the Journal of Parkinson’s Disease, as of Jan. 31, 136 active clinical trials were evaluating therapies for Parkinson’s. Of those, 76 were considered a treatment for symptoms, and 60 were disease-modifying treatments, which means they’re designed to slow, improve, or reverse Parkinson’s — something we don’t have today.
I also have amazing friends who’ve stood by me and my husband, Ted, every step of the way since my diagnosis. Telling them about it was more sad than scary because I didn’t want them to think of me differently. I was still me.
I knew it would all be OK when we went out to dinner with our closest friends shortly after we told them the news. When we raised our glasses to toast the evening, one of my friends joked about how I might be shaky, but I’d never spill a drop of wine. Our friends have been there for the bad stuff but also to bring us back to earth with a laugh.
I’ve written about the excellent medical team I’ve been fortunate to put together to care for my health and well-being. Having a good team, as well as feeling empowered to ask questions and insist on answers, has been critical to my journey. I’m in charge of managing my disease, but a strong ally helps.
The little things
I often say Parkinson’s isn’t about the big things; it’s about the little things. Like pants without buttons or fasteners. And not wearing nylons or tights anymore because manipulating the thin fabric is a time- and energy-consuming nightmare. Or slip-on shoes that require no tying of shoelaces. And insulated cups with sippy tops to keep my margarita frosty and spill-free.
A lot of people have said to me that I got a raw deal being diagnosed with early-onset Parkinson’s disease at just 36. And I did. No matter your age or stage of life, Parkinson’s is a raw deal. But despite the difficulties, I still have much to be thankful for.
Every person has a different journey with Parkinson’s, but one thing we have in common is the human ability to persevere, to be thankful for each other, and for so many little things.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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