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[Triecia]

We are awaiting dx for my son who has symptoms of FSH. We are hoping that if the dx is confirmed we will then be able to access services for him through the neuromuscular clinic at the RCH. In the meantime we have sought physiotherapy with a lovely neuro physio who has commenced him on exercises with the aim of building up unaffected areas to give him a stronger foundation. Our physio admits she does not have a lot of experience with FSH so the interventions are suggested with a lets see what works approach.

Given that it might be some months before we get a dx and access to information/services at the neuromuscular clinic, are there any physios out there who can provide us with a bit more direction on exercises (eg stretches?) that could be beneficial in the meantime?
Our son is 14, with facial, upper limb and abdominal weakness.

thank you,
Triecia

[Ray Jordan]

I have regular sessions (for about 15 years in totlal) with a physio that practices the Feldenkrais method. I have found the method to be very suitable to my condition. She has also treated several other patients with FSHD. Her name is Ann. If you call MDA, they can give you her contact details.

Ray