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Accessibility hacks, mobility aids, and tips (Part 1 of 3)

Home / Living with FSHD / Accessibility hacks, mobility aids, and tips (Part 1 of 3)

Posted on: Mar 20, 2017

Written by Paul Shay
Groton, Massachusetts

I am one of the lucky, late-onset FSHers: diagnosed at age 57, now 71. As my progression has been relatively slow over those 14 years, I have incorporated a number of adaptive devices and techniques that I can share with you. Since my wife and I are still working, we have been fortunate enough to have the resources to try out a number of products.

As I am mostly affected in my shoulders, biceps, and quads, my issues revolve primarily around climbing stairs, reaching high and low, and getting up from a seated position.

For those challenges, here are a number of things and tricks I’ve found useful:

Pneumatic Clam-Shell Seat Lift. This device is adjustable for its user’s weight and has modest padding. It allows me to sit at my desk for hours at a time, and gives a gentle boost when getting out of the chair.

Toilevator. This is a sturdy plastic platform onto which your toilet mounts. It comes with all necessary mounting hardware and seals, raising toilet seating height an additional four inches.

Half-Steps. We have a garage with one step up to the porch, and inside, a single step from the entry area to the main level of the house. When these became an issue, I Half-step block of woodtried plastic half-steps purchased online. They proved the concept and did help, but were fairly expensive and yet did not last long. Our son then built a couple of rectangular boxed platforms of the same height using quality hardwood. After staining them, he added 3M non-skid strips for traction.

For travel, we bought a 12-inch square stepstool and cut the legs off to bring the height down to that of our household half-steps. It fits easily in a suitcase or carry-on, and takes up minimal space.

Otherwise, one of my early purchases was a cane with a small half-step attached to the base. In conjunction with my normal cane, most steps and stairs are now doable thanks to this device.

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Filed Under: Living with FSHD, Tips and Tricks Tagged With: Accessibility Hacks, Mobility, Paul Shay

Comments

  1. Judith Durbin says

    March 28, 2017 at 12:47 pm

    Where are parts II and III of this article?

    Reply
    • Kathryn Puzzanghera says

      March 28, 2017 at 1:24 pm

      Judith, thanks for commenting! We haven’t posted parts II and III yet. I’m glad you like the series!

      Reply
  2. Robert Shonk says

    April 3, 2017 at 11:27 pm

    Thanks for sharing. As a fellow FSHer diagnosed in his 50s and now in my 70s I had to discover on my own most of the hacks that you also discovered. Portable thick foam cushions helped raise seat levels so I could get out of various chairs. I use an outdoor bar chair in the shower. I had grab bars installed in many places. If I got stuck in a couch I found that if I could get a leg up on the arm of the couch I could often then stand up from there. I found walking in zig-zag fashion was useful in going up a hill.

    Reply
    • Kathryn Puzzanghera says

      April 4, 2017 at 12:33 pm

      Robert, I’m glad to hear that you’ve found some tricks that help make things a little easier for you. Let us know if you’d like us to send you any of our brochures. Don’t hesitate to reach out if we can help!

      Reply

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