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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: writing

When Do You Call It Quits?

Terri Reinhart

My friend, Ed Sikov, recently wrote a wonderful article about writing. With the title, "How Do You Know When Your Writing Career Is Over?", I was almost too scared to read it, wondering if I'd find out my writing career should be over. It's way too easy for me to believe. Scared or not, I read it anyway. Ed's a friend. He's also someone I consider to be a real writer, he has written books and articles and gets paid to do it. Any advice he gives, I'll take seriously.

Soon enough, Ed reassures his readers. All we have to do to be a real writer is... write. Write consistently. Don't say we're going to write, just do it. Don't stop because we get rejection notices or because someone thinks it's a silly thing to do (Ed words all this much better than I do). I would encourage any and all writers to read this article, more than once. Print it out and keep it handy for those times when you get discouraged.

Then, about halfway through his article, he speaks about his diagnosis of Parkinson's disease and how this affected his writing. What he had been doing for years as a professional writer didn't work anymore. He didn't call it quits; he changed how he was writing. This article of his is proof he still is very good at what he does.

I would also encourage any and all people with Parkinson's disease or other chronic health challenges to read this article, print it out, and keep it handy. It's easy to get discouraged when it's harder to concentrate, harder to find the fine motor control, harder to find the energy to do things we used to enjoy so much. We have to learn when to take a step back and change how we do things, not call it quits.

Craft work was a huge part of my life for a long time. It's not that I cannot do it anymore, but the end product of my art work was no longer up to my standards. So I called it quits on a few things, like felting and artistic books. I couldn't think art anymore; couldn't get into that special art zone. I called it quits on broom making too, but that was for another reason; it's just too hard physically. I'm cleaning out my studio and giving a lot of art supplies away.

I still make simple books from time to time and I knit. I don't think I'll be tackling any complicated lace patterns, but I can still do the basics. It's enough and it's very satisfying.

I also write. Oddly enough, I didn't really start writing until after I was diagnosed with Parkinson's. This blog began as articles I wrote simply to help me process this new direction my life had taken. I finally put them on the website because I wanted to make sure I wouldn't lose them if my computer crashed. I didn't really expect anyone to read them. Perhaps this made it more exciting to hear I made the top 15 Parkinson's blogs of 2017, chosen by Healthline. 

I've made the list for a number of years now, but I never expect it. I've run across some wonderful new blogs by people with Parkinson's disease and, if there is a year I am not chosen, I won't be the least bit offended. I won't call it quits, either. Writing seems to be in my DNA. My father wrote his first novel at age 85. Our son, John, is becoming well known for his poetry, and our daughter, Emma, has had two of her short plays chosen to be performed. I'll do my best to keep up.

And before I sign off, here's my new favorite Parkinson's blog:

Small Girl With Parkinson's by Meg Bernard

Oh, and if you haven't done it already, read Ed Sikov's article

 

Drafted

Terri Reinhart

It's been difficult to find time to write lately and even more difficult to figure out what to write about. So, I looked through all the drafts of articles I've started and thought perhaps they could inspire me to do something new. Sometimes I come up with a title and nothing else.

Here goes:

Armchair Reactivist: My intentions were good, not just because I wanted to write an article, but because I wanted to be a real political activist and get involved with our city politics. I went door to door gathering signatures on petitions and later, went door to door again to deliver leaflets for our city counselor's election. 

My stamina being not so great, I decided I was better at being an armchair activist, or, when it comes to social media, an Armchair Reactivist. Being a reactivist isn't nearly as productive or useful as being an activist and it has sometimes gotten me into awkward spots. I'm sure there's a lot more I could write on this subject. If I finished, it would be deep and scholarly and point out all the ramifications for our society.

Tomorrow, Tomorrow, I'll do it Tomorrow:  I decided this was the best title I've ever come up with for an article that has never been written and probably never will be, like the one above. The fact this has also been my mantra for everything over the last six months or so makes it an even more appropriate title. Catchy, isn't it!

It's Enough: This follows the other two. I can't remember exactly what I had in mind here, whether I'd had enough or whether I had to decide what I was doing was enough. It could be either, depending on the day. 

It's back there in the gray matter somewhere. We need to simplify, really simplify and not just give it lip service. This doesn't just pertain to stuff, though there's a lot of stuff needing to go, it's also how we live. My medications, over the years, have either sped me up or slowed me down. Finding a middle ground hasn't been easy, but at least I know now I don't have to try and cram as much living into my days and weeks as I possibly can.  If we go slower, do less, we experience more. And that's enough.

Labels and Identity: This was going to be one of those really important articles which would go viral on the internet and, maybe have 4 or 5 people actually read it. (For me, that's viral) This is something else I've been thinking of a lot. 

When I was in high school, we liked to talk about how we didn't want anyone to label us. Working with children who had disabilities and challenges, labels were often what helped get help for a child. Sometimes a label helped with funding. I'm also involved with our LGBTQ community. They have recently added more labels - LGBTTQQI2SA. This might look awkward and seem a little bit label heavy, but I get it. These labels are helping people understand their unique identity. I wish these labels had been around for friends in my generation.

What I remember from working with child observation is: you can have labels that help free an individual or labels that box them in. The most important label is: This is a unique and uniquely beautiful human being. Know the others, then forget them.

There's so much more on this subject, it needs to be a whole book. Someone else can write it. 

And after all this, I'd undoubtedly summarize all of my thoughts into a wise, but witty ending paragraph, bringing everything together. I'd probably connect these ideas to the experience of chronic health challenges and try to say something inspiring. Instead, I'll just copy and paste and tweet about it.

Tomorrow.