Living Big

In addition to finding a new volunteer project for the new year, it is wise to reevaluate what you are doing for yourself. Health issues seem to be in the forefront this year.

My friend Terri Robins is a member of the Morganton Writers Group and has participated in LSVT-BIG for management of her PD symptoms. Her following article appeared in the News Herald newspaper October 17, 2013.

“Since I was diagnosed with Parkinson’s disease twenty years ago, I have tried different treatments to curb my symptoms with limited success. However at my Parkinson’s Support Group meeting in Morganton, I heard about a program earmarked especially for people with PD at Frye Regional Medical Center in Hickory.

I was excited and at the same time apprehensive. I made a call for more information, and was given an appointment for an evaluation to determine if I was a candidate for this very specific treatment.

Terri in ACTION

Terri in ACTION

The first day I encountered older adults marching in the hall like wound-up tin soldiers, arms flung up high in the air in time with large steps, made louder by stomping. Strange vocal sounds floated out of the closed door of one office. These adults sat and wrote on big lines and spaces from notebooks like the ones used to teach young children to write. I was amazed that the patients could perform these movements with such precision. Their movements were definitely larger than life.

The treatment originated from observation of a common tendency among Parkinson’s patients–they live in a SMALL world. Their bodies become smaller as a result of stooped posture; their steps become small enough to contribute to the falling accidents related to this neurological disorder; their handwriting becomes small enough to be unreadable even to themselves.

But perhaps most significant, their lives become reduced in size by a self-consciousness of looking different, or behaving differently, such as publicly falling, as I have, in a grocery store parking lot. Fear and embarrassment too often become reasons for a self-imposed life of exile inside the house, out of the sight of others.

I learned that the therapy entailed three forms of rehabilitation: physical, occupational, and speech therapy. A BIG commitment was also required as treatment takes place four days a week for a total of four weeks with homework expected daily. The length required for the program was determined by research showing that four weeks is the time it takes to change a habit.

That’s the whole point, explained these professionals. The exaggerated BIG ways of moving must become habitual with practice, to stand in the place of the small ones. They promised with repetition, one would develop more natural and safer ways to get around, out of bed, or write a legible note, and in effect look and act more closely to pre-disease mannerisms.

I signed up for the whole shebang. Little did I know how difficult it is to alter physical habits, neural pathways as they were, made by the habits of a diseased nervous system seemingly locked into these patterns just to keep going. I was so sore in the beginning that I spent equal time flat on the couch for every hour of therapy!

Plus it was hard to remember every little part of each exercise, including a BIG finish for each one. I hadn’t counted on the dizziness I’d experience, the resistance to change I’d battle, the soreness of muscles I didn’t even know I had, or the sheer wonder of my voice at full volume having taken my biggest breath and letting it fly! Letters became written in readable rows, and the ability to button my shirt, or tie my shoes returned, after flicking my fingers purposely out in the air, yes, as BIG as I could.

I even learned that I carry my head several inches to one side on a neck so accustomed to the tilt that I have to use a mirror to know when my head’s straight. I could no longer simply feel the difference, and “It can get so much worse!” warned my concerned physical therapist. So I practice straightening my head at what is still a big tilt to me.

But I am not living in fear of falling every chance I get. I wonder what it would be like to go a year without a rush to the ER for stitches or an X-ray? And now, I finally feel the lack of safety shuffling my feet along the floor. I just mentally tell myself, “BIG STEPS please!” I know now that I can be heard if I take a full breath before I speak in a BIG voice. I can even read my BIG letters. And at a flick of my fingers, buttons work.

What a BIG life I’m beginning to have–and I’ve only just finished my therapy! Wonder if I can get BIG dancing lessons for my new on-the-way-to coordinated body. I’ll probably want the music LOUD!”

The phone number in the article was 828-315-3816 for more information on Morganton Parkinson’s Support Group.

Terri will probably be one of the folks you see on the Mountain-to-Sea-Trail. (last post) but she won’t need BIG or LOUD in that world.

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2 Responses to Living Big

  1. Hi there,
    My dad has pd and is involved with LSVT BIG. Where are you based?
    It’s great to see a pd community on here. I just set dad up a page actually!
    Look forward to hearing from you

    • georgia ruth says:

      Hi, Georgina. Thanks for stopping by. The support group referenced in the article met in Morganton, NC. My neighbor also benefited from the PD support group last summer. You could call 828-315-3816 for local information. I hope we spread a word of hope. Best wishes.

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