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When we say people with FSHD are the experts in living with their condition, we have in mind people like Lonwabo Nene, an extraordinary young man from South Africa who has lived without meeting another person with FSHD until last year, when he logged in to our FSHD South Africa support group on Zoom. He impressed everyone immediately with the forthright way in which he speaks about his diagnosis and his openness in sharing what he has been doing to address his symptoms.
Since then, he has joined the Feeling Fit with FSHD task force, and last month he led two sessions in which he demonstrated techniques that have helped him. Some were methods he discovered himself, and others were introduced to him by his biokineticist, whom he credits with many of the improvements he has achieved.
Lonwabo showed us how he massages his facial muscles along his temples, cheeks, and “smile lines.” He said the facial massages reduced his headaches, “heavy” sensation in his face, and improved his facial expression.
He described how his trapezius became overdeveloped because he was using it to hold up his weaker right side. His scapular instability led to tightness around the shoulder and arm. “I felt like these issues would translate down lower into my body,” he said. He then showed ways to position his body, for example by rotating arms to keep palms facing upward, and sleeping on his back with arms pronated.
Lonwabo also introduced “nerve flossing,” based on the idea that nerves can become compressed by positional issues in FSHD, leading to symptoms like sciatica. He uses gentle stretches to “floss” the nerve and improve pain, blood flow and sensation in the affected regions.
In Part 2, Lonwabo showed how he uses long exercise bands or a small towel to exercise the lower limbs. He advised having a smooth floor and wearing socks to glide the feet along the floor in a seated hamstring exercise. He also showed a trick to use the exercise band looped around the arms and across the shoulders as a temporary back brace. He demonstrated seated exercises targeting the scapula and rotator cuff, core muscles, and ankle and foot to address weakness that leads to foot drop.
We really enjoyed Lonwabo’s can-do attitude and look forward to future sessions with him. In the meantime, you can download his slides and follow along with his videos.
Feeling Fit with Lonwabo Nene Slides Part 1
Feeling Fit with Lonwabo Nene Slides Part 2
Jennifer Davey says
I think Lonwabo is on to something. Has anyone ever tried the Neubie system that physical therapists are starting to use where they use electricity in a new way to work with nerves? I may try it for recurring sciatica. We have a system near me though I think its use is not widespread yet.