There once was a gal with Dystonia

Her friends dubbed her Ruby Begonia
When her face would distort
and her body contort
and they’d wave and say “Good to know ya”

Dystonia. A city in Yugoslavia? or Russia? Oh don’t I wish.

With the joy of dementia (maybe the working title I should use for my book?) comes many accessories, I am learning. Some have extreme pain, some display Parkinson-like swallowing and mobility issues, others are accompanied by ALS (Lou Gehrig’s Disease), or Multiple Sclerosis. We all reside in the same map of the brain, so it is no wonder we share border crossings from time to time.

For me, it began with a rippling under my skin, not unlike feeling ‘life’ when pregnant. I remember my grandmother saying that, to her, feeling life felt like trout in her abdomen. (You can tell we grew up a hunting and fishing family.) I could feel it, but others could visualize it.

It might be on my calf, or my forehead would move, or my scalp. Odd little things, similar to when one’s eyelid takes it upon itself to flutter all by itself, like it has a mind of its own. We’ve all had leg or foot cramps that rise us up out of bed jumping and cussing. So I just figured I’d overworked that part of my body, tho the scalp thing seemed a bit odd.

While recovering from my broken leg and ankle surgery, I finally had the opportunity to show my daughter what I had been talking about for a few years. We both said “weird” and something moved under the skin on my leg. I began to think it was fish also.

After having come home from a 2 week stay in the hospital, I had an onslaught of things: infections, blood pressure, and one night came downstairs to say I was firmly voting for the red-haired teenager on American Idol, when my legs gave way, and began to jerk and shake, and my arms as well. My eyes began to roll. I thought it must be a seizure, but it got worse as we left in the ambulance.

My mouth moved into distortions that made the Exorcist look like a child’s book. Nostril muscles (yes, they have them) would close off my passageways, tongue resembled a cow’s in the butcher shop, lips curled, body writhed, back arched off the table, feet tried to touch my shins. The pain was excruciating, and because my jaw was locked I could only try to grunt “I’m alive”. When it would move to another part of my body, I would try to ask her to save me, and then my face would turn into the Joker’s, with a smile that nearly reached my ears or my eyes. My powerfully muscled eye-lids, would lock shut and push so hard against my eyeballs that I thought the would pop into my brain. My ears contorted. When my eyelids would release, I would beg her with bulging eyes, ‘save me, save me’.

All of which was ironic because 2 weeks before I thought dying would be the best for me and for my family and now, with 3 days of constant distortions and a parade of med students coming by, all I knew is I needed to live.

It was like something was pulling and pushing my body into shapes like you can do with Silly Putty. There nearly a week, we were all still puzzled if it was a Bermuda Triangle or an extreme anxiety attack.

Now, we know it is not. The last few weeks I’ve had some minor attacks, the more severe ones God brought someone by or a visitor who happened to be there, to remind me to breathe, to shove meds between clenched teeth, to sooth my brow, to speak softly.

But for my Frontotemporal Dementia/Picks it is a passenger on my trip.

Some of you have mentioned what accompanies your dementia, but if you could describe it, it would help us all so much.

FTD strikes younger adults – typically 40’s and 50’s, and is rarely diagnosed. People on the blogs, including mine, say they lost them in about a year from diagnosis.

Pray for us, and while doing so, pray for each other, and that funding and research will make this as familiar as Alzheimers.

As for myself, I keep fighting, challenging my atrophying brain to keep working, buying me time to be with my family, fall in love, and check off my Bucket List.

Love to you all who are traveling with me.

Permanent link to this article:


Skip to comment form

    • freda on January 19, 2010 at 7:53 am
    • Reply

    I don’t have the words – in awe of your experience of dystonia and in admiration of the way you write about it.
    A revelation since I have only seen minor symptoms before – my concept of how it can be is changed.
    Love and hugs freda

    • Joanne on January 19, 2010 at 5:24 pm
    • Reply

    Hi Vic,
    You amaze me. Your courage, your convictions and your fighting spirit. EMS just told me about your blog because I’ve lost touch on FB. Glad to have found your “voice” again–it makes me smile, like you always have.
    Joy always, Joanne

    • Sue Schnipke on January 22, 2010 at 3:39 pm
    • Reply

    I find a long lost friend only to find she is such a wonderful person. You have done so much with your life, that mine seems so small in comparison. Your struggles and trials have only made you a wiser and stronger person. You have been blessed in many ways, this hardly seems to be a fair turn.

  1. Sue Schnipke, you wonderful girl!! I haven’ seen you since Grayling, when I came home with Andrea and you tried to hold back ole Lela (thank you, thank you).

    Are you in Lansing?? How on God’s green earth did you find me after all these years? That baby is 40, Beth 42 and Nick just turned 31. I said that to make you feel as old as I do ;o)

    Love, Vicki

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.