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The Good, the Bad and the Ugly of Parkinson's Disease

Unpredictable

I hate Parknison’s disease. I hate the unpredictability it brings to my life and the lives of the people I love. I believe that once you make a commitment, you fulfill that commitment. It’s something I used to be able to claim as a source of pride. If I said I was going to do something… by golly, I would do it. It’s one of the big things I’ve tried to instill in all four of my kids. Follow through. Do what you say. Be dependable. Guess what? That’s another thing that Parkinson’s doesn’t care about. Commitments. Plans. Schedules. On any given day — or hour — without a moment’s notice, Parkinson’s rears its ugly head and craps on my plans. I hate it.

The Good

Before I completely bad mouth this ridiculous disease, let me at least let you know I have good days. I do. I have really good days. I love these days. I treasure these days. I fill these days with as much good as I can. Sometimes the good is as simple as actually preparing a full meal — a meat, potatoes and vegetable full meal — for my family. Sometimes the good is actually running all of the errands on my to-do-list. It’s the really good days I crave the most. The days when I spend sometimes the entire day doing things I love. Things like hanging out with my family doing what they love… volleyball, basketball, libraries, movies, bookstores, ice cream. The days when I spend a much-needed, soul-filling morning or afternoon catching up with friends. These are the days I truly treasure. Because, well….

The Bad and the Ugly

Some of the days that Parkinson’s rears its ugly head, I can “just shake it off,” let it go and chalk it up to a bad day. I curl up under a blanket with a good book, the remote or my laptop and get through it the best I can. The other days, the days when it affects anyone other than just myself, are the days I really struggle. I’ve had to cancel plans, say “no” to exciting opportunities and stay behind when the rest of my family heads out to do something fun. These days hurt my heart. These days are not soul-filling. I despise canceling plans, saying no and missing out. These are the days I try not to let people see. As I said earlier, often these days come with no warning. I wake up feeling “normal” — and then I don’t. Well, I guess I shouldn’t say “normal.” I don’t really know what “normal” is anymore. I don’t feel OK. I’m not the me I’ve known for all these years. I tremor. I stumble. I move at half-speed. I drop things. I forget words. I’m. Not. Me.

Understanding

I have Parkinson’s disease. But I have something bigger, better and stronger than Parkinson’s disease will ever be. I have an amazing family. I have amazing friends. I have amazing hope. One of the things I’ve dreaded and feared the most at this point of the disease is isolation. It’s known as an “old person” disease. And I’m not an old person. I’ve feared feeling alone. Disconnected. Forgotten. I get it. I’m not the most dependable these days. I’ve had to leave my job. I have to say no. I have to call or text to cancel plans, appointments, you name it.

But, my friends and family… my friends and family haven’t given up on me. They continue to be dependable when I cannot be. I know they’re frustrated. I can see it on their faces or hear it in their voices when plans suddenly change or get dropped completely. But they don’t give up. They don’t stop trying. They keep calling or texting. They keep making plans. They keep extending invitations. Despite knowing that a “yes” from me on Monday could easily turn into an “I’m sorry” from me by Thursday — despite this — they keep trying. And for this I am grateful. I’m beyond grateful for the grace of my family and friends. I’m grateful for their gentle words, their flexibility and their patience. And through them, I may even learn to be a bit more gentle, flexible and patient with myself. With them… I got this!

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