The following is from the transcript to a session conducted on Friday, November 13, 2015, over the FSH Society’s Facebook page with Julie Hershberg PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. Additional questions and answers will be posted in the future.
Q. I am a physical therapist also and my son has FSHD. Has there been research done on using braces or taping techniques to assist weak muscles or improve posture to then decrease the stress on other compensatory muscles? If so, what are your recommendations for how to get these braces?
A. There is not research in FSHD on particular braces, but there is clinical expertise (Wendy King and Shree Pandya are great resources and PT’s with a lot of experiences in this area) that have recommended specific bracing depending on your son’s problems. Abdominal bracing and leg orthotics are two of the most common forms. General abdominal braces can be found online and I often recommend the least restrictive and most comfortable ones to start, which are essentially soft elastic. I also recommend custom AFOs for the legs, made by an orthotist.
I Have FSH aswell (live in Cape Town) and bough myself 2 things which I feel helps – as I get constant cronic pain and cant always get to my physio therapist – I bought a brace support for my shoulders (that helps it keep upright and in place) and a Neuro Trac which also tend to help the spasms relax. Hope it helps.
My son, age 36, has FSH. His general doctor was concerned about his marked lordosis and his chronic back pain and sent him to a spine specialist. The general doc said she hoped there would be a brace that would improve the lordosis and pain. However, the spine specialist examined my son for a fair amount of time and determined that he would “fall over” if he wore a brace because it would throw off his way of walking. He seemed to be saying that our son’s lordosis and his peculiar center of gravity have forced him to adapt his walk in order to remain upright. A brace to alter the lordosis would throw off his equilibrium, causing him to fall. I realize you have not seen our son, but, in general, do you agree that a back brace could cause this kind of outcome?
A. The simple answer is that no one brace is a one-size fits all solution for lordosis and back pain and it really does take some trying different types of braces to see if a type of brace might be helpful. It is true that biomechanically the hyperlordosis can provide people hip and knee stability in stance and can be a compensation for weak hip extensors. It is possible that altering the alignment may make a person feel more unstable. However, I am not sure that an abdominal brace would particularly alter the alignment enough to cause a problem. I recommend a movement and/or gait analysis by a physical therapist to help determine the potential positive or negative effects of abdominal bracing. — Julie Hershberg
I am 58 and for 20 years have taped my ankles both to combat weakness and drop feet. I have tried orthotics but find them hard and somewhat restrictive ( I know that’s what they’re there for).
I find that figure eight ankle- foot taping provides necessary support but allows for more natural movement and weight bearing. I use ‘paper tape’ as a base then 1 1/2 athletic tape for strength.
It’s probably not for everyone but works for me. I’m happy to share details.
Post some photos!
Hi I’m 53 years old with Fsh and find Bowen Therapy simulates the muscles
Tell us more!
I’m watching a program on an inversion table. I was wondering if that would help or hurt us FSHers? It looks like a great way to twist and stretch the back out (which feels SO good) and helps with respiratory by opening the lungs up. Which is hard to do by myself! Any idea if that would be good for us or have negative effects?
Thanks!
Hi. My uncle is in the hospital right now, 62 years old, and is awaiting the results of his lung biopsy to decide if he wants to die or not. I am beyond upset that this is where we are. I am hoping that life with a trach, constant ventilation, kidney dialysis, and major immobility is better than death.
Before he was admitted to the hospital, four weeks ago, he had been having issues breathing, having issues urinating, and had been using his scooter for a few years. His quality of life was not fantastic, but he could go about the neighborhood and socialize a bit.
Does anyone have any experience with the ventilator, dialysis, and scooter? I believe with the trach, he will be able to talk, but not eat.
Hoping for some hope.
Thanks!
Tina