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Storybook characters scale a stiff hand that

Rigidity and the Writer: A Parkinson’s Tale

For over thirty years of my life, I have been some sort of a writer. Whether for fun with imaginative tales of the supernatural, for historical purposes with my life’s happenings, for inspiration with my many travels, or for knowledge with education, both other people’s and my own, I have sought to tell my tales and express my understanding of life. Nevertheless, Parkinson’s threatens my ability to tell my tales every time I sit down to write. As rigidity creeps into my left hand’s knuckles, I face the feeling that things aren’t like they used to be, and I am in a race against time to get the words out.

I call it “the new (ab)normal.”

Opportunities

Despite this, Parkinson’s has given me a new opportunity to write with being able to express what a Person with Parkinson’s life is like. I’m unique, as you are, in that it affects me and mine in a certain way. However, I’m similar to others in that, like you or those you care about, in that I’m reflecting on how I feel it. It’s just that I’m sharing it (you can do this, too). I like being able to be genuine about my life and to express myself to people who read this. Being a writer is part of my identity. Like you, I don’t like thinking about something else defining my interests, especially if I can push through them.

Nevertheless, like all machines, things like wear and tear will affect the system unfavorably. In this case, rigidity slows down hand movements.

Granted, I’m still a remotely fast typist, though my left hand’s stamina won’t let me push it for extended times, even when it chooses to work for the standard shift. Learning to type took time and effort. In 11th grade, they taught everyone to get faster, but I got slower. A few years later, with practice and memories of that class, I “got good.” At one point, I clocked in at 80 words per minute, which still felt restrained compared to some moments when the brain > fingers > keyboard connection was “en fuego.” “Playing the computer like a piano” occurred soon after entering into the no look zone of typing. Thank you instant message responses. Yes, as a teacher/writer, I was good to go.

Or so I thought; it seems that scumbag Parkinson’s had other ideas.

Denied

Almost 20 years since that time, my fingers will occasionally peck at the keyboard. I may as well be a 1-finger wonder, searching for the strength to push the keys through the rusty rigidity in my digits. Other times, my brain will be alive and ready to write. My characters’ voices will call out. “Tell my story!” Sorry guys and gals, but the system is running a little behind today. Grrr to you, cramps!

I’m just awaiting the moment my dreams turn into Luigi Pirandello’s Six Characters in Search of an Author. There, my fictional characters and people once known from incomplete autobiographical sketches will flow in and out of seemingly random places to demand their story be told as well! All I’ll be able to do is say, left-hand cramping is slowing down the “ASDF” side typing, but if you just stick with what’s on the “JKL;” side, we’ll be just fine. Grrr to you, rigidity!

Parkinson’s won’t listen, but I’ll hopefully be able to take off my ring and work through the swelling to get to some suitable conclusion. If not, well maybe I can work on peripheral brainstorming ideas and organization type things. Hopefully.

Tech solutions

I know there are speech-recognition programs where I can talk out my ideas, but my creativity comes from being live “in concert” with my keyboard. Even before Parkinson’s set in, I was too “clumsy” to use a laptop keyboard or mouseless computer. I can make them work in the short term, but it’s not pretty. Thus, for my laptop, I plug in a raised desktop computer and mouse. Then, I can construct my dialogues, which flow out naturally when I’m in the zone or clumsily when rigidity plays difficult.

However, in the haze of Parkinson’s, I find myself plodding from time to time. It’s like the old brain won’t start up unless it has been set to warm up for a few minutes (or more). That time, though similar to writer’s block, exists more within the realm of my changed abilities. In the end, it makes me wonder if Parkinson’s is more of a threat to the resolved conclusions of the fictional lives of Tony Lucas and Bart Doherty than Jason Harper.

What will come first: the end of my series or greater disability?

Fixing it for now

Since I’m relatively young (48 in August), I may not have experienced arthritis, but from what I know of it, my clawed up left hand reflects what I think that is: a painful cramping rusted over. My mind still believes that, like ice, I can thaw out my hand if I push through it. After all, Parkies are told many different ways to reduce muscle stiffness. Our mantra of exercise is to stay loose. We pretty much get this tattooed to our bodies when we are diagnosed. Never forget. Keep working hard. I believe that; it’s just sometimes my left hand doesn’t cooperate so much.

In an ideal world, we would all journal our thoughts and write our own narrative. For those of us with Parkinson’s, it’s important to know we’re people and not a disease. “To name something is to own it,” the saying goes. I agree. If I were a business product, I might “brand” myself, but I’m a person, so I’ll just “be,” like Kevin “Crash Davis” Costner said he was going to do at the end of Bull Durham. For this, I’ll keep banging out words until my fingers refuse to budge.

We have to believe. No imaginary timelines. Live and do now, while we can. No regrets.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Stevemy
    2 months ago

    I’m not writer and have to use voice-to-text. Which is irritating it always puts in words you don’t say. I was active in Twitter but I couldn’t keep a sentence going because I would forget words. And forget what I was saying. Even though I’m not a writer I understand what you’re talking about

  • Dan Glass moderator author
    2 months ago

    The thought of speaking to a machine or having 1 speak to me is something I dread. Phone trees are my nemesis for my inability to be understood. I’m going to have to work on getting ready for voice to text! Thanks for reading and commenting. I hope your experiences with VTT get better.

  • PeterAGF
    2 months ago

    Terrific article; thank you. I am also a writer and I completely understand your experience. With me, not only is there rigidity, but my fingers have minds of their own and they spasm, suddenly and randomly pushing keys on the keyboard or sporadically clicking the mouse buttons. And then there’s the cognitive issues, like forgetting how to spell words that I’ve spelled a million times before. Ah well; I just keep pushing forward.

  • Dan Glass moderator author
    2 months ago

    Humbled… thank you! I was dropping A’s randomly in the early days, so I can empathize with your experience as well. Only a fellow writer can understand looking at a word we’ve spelled multiple times correctly, but we now write it incorrectly just because our brain is thinking “differently.” Gotta love the word fishing. “Give me another word that begins with a… and means… I know what I want. I just can’t remember it! To the tales that need told and the lives we have yet to live. Thanks for reading! https://parkinsonsdisease.net/living/fishing-thoughts/

  • MarkPritchard
    2 months ago

    Dictation software tho.

  • Dan Glass moderator author
    2 months ago

    The time will come when I need to refine the process of my writing and go to Dragon. Do you have experience with it or anything similar?

  • FranBL
    2 months ago

    Dan – haven’t heard from you in awhile. Glad you’re back to occasionally share your story.
    – Fran

  • Dan Glass moderator author
    2 months ago

    Still here, still writing… at least when I’m not crazy busy with pre-semester advising! Take care and enjoy your summer!

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