Balancing Act

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Some days are better than others but you really start to worry about the future when you hear the unmistakable sound of someone bouncing off the wall and hitting the ground. Gary has been stubbornly trying to continue walking inside the house using what I silently refer to in my mind as Triple L Walking– Launch, List, and Lurch.

He uses furniture and walls to steady himself. Granted he still has some good days but those are becoming increasingly rare. On the bad days, he pushes off towards where he wants to go (launch), walking in a sideways motion (list) and forces his body to arrive where he was headed (lurch). You can feel the collective holding of breath by everyone in the room. Yes, I am aware of the silent scolding glances you’re shooting me but you try making the horse drink.

Dr. Levy has explained in the past how the fight with keeping your balance will aggravate Superficial Siderosis fatigue. Gary has resigned himself to the fact he needs either his rolling walker or wheelchair every time we leave the house. It’s a matter of distance now in picking the one we choose. If there will be short periods of walking with opportunities to rest the walker works. He uses the walker during our daily road walks. If he’s feeling strong he’s often able to make it to the 3/4 mi. mark before we have to turn back. If we go on longer walks he will push his wheelchair, using it as a walker, when he gets tired he rides while we fight over who gets to push him. Take my word, pushing a wheelchair three miles up hills is the best leg workout.

The possibility is very real Gary’s problems with balance will continue to worsen so I thought now was a good time to revisit an earlier post about Motion Therapeutics and their amazing Balance Wear Vest.

Balance and Gait Therapeutic Alternatives

Cynthia Gibson-Horn is a physical therapist who designed a remarkably straightforward combination of physical therapy while wearing a weighted balance vest. The vest, “BalanceWear® Orthotic.” requires a patient evaluation so they can provide a custom weighted vest, counter-balanced to your particular balance needs.

The results are remarkable. Multiple Sclerosis, Spinocerebellar Ataxia, Parkinsons’, Peripheral Neuropathy, and Cerebellar Degeneration patients have all shown improvement from therapy. Terry Hayes suffers from severe cerebellar degeneration and her doctor thought she would spend the rest of her life in a wheelchair. Six months of physical therapy using the weighted vest and Terry was walking once again. Read Terry’s story on the MotionTherapeutics Inc website.

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 MotionTherapeutics Inc. provides non-invasive therapeutic solutions for balance and mobility disorders using Balanced-Based Torso-Weighting® (BBTW®) garmets. Once fitted with the BBTW® garment, clients often achieve immediate improvement in their ambulatory ability.

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

4 Comments

  1. Fortunately I don’t always have balance issues but I have a handicap placard that I use on bad days. My balance issues do not affect my driving but I have to be careful getting out of the car. I usually stand up and access my balance for a few moments to decide whether or not I will need my cane. If a grocery cart/buggy is close I will use that as a walker and can get around the store like nobody’s business. I always push the buggy/cart out to my car using it as a walker.
    My home is fairly small so it is easy to walk by having a hand on the wall or a piece of furniture. The stairs to the basement is another matter. I have to walk down backwards sometimes to keep my balance and if I do lose my balance I am facing the stairs and fall forward. I also grip the handrail very securely. I had considered replacing my old carpet with vinyl planking but carpet makes for a much softer landing.

  2. Daily Bible reading me too. And daily text which I have on my phone. Along with NWT in English and Spanish and King James that I use when talking to others.

  3. Gary, please us your walker. The last thing you want, is to fall! My balance is getting very bad, also operating @ one mile an hour takes some doing. Wondering how you know it’s time for the wheelchair is a topic I’m currently considering .
    This journey , for me, would not be possible without daily Bible reading.

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