Fascioscapulohumeral Muscular Dystrophy (FSHD)
I have treated a father and son with FSHD. The son described similar problems as you do. He was still managing to row for his school team despite significant shoulder girdle weakness.
Physiotherapy is about helping you to maintain range of motion and reduce the possibility of contractures, relieve pressure, increase circulation, reduce stress, and provide weight bearing to preserve bones.
As a Specialist Physiotherapist, my expertise is in analysing the problems you are having and working out how we can reduce you disability with strengthening, stretching or postural corrections. Sometimes intermittent taping or a brace may assist. It depends on the extent of your problem. An Occupation Therapist may be able to help you with more practical aspect around your home and activities. A Neurological Physiotherapist may also have specific skills to help you.
Google FIND a PHYSIO (Neurology) at the Australian Physiotherapy Association for assistance.
Many people with FSHD find swimming beneficial as it has a low impact on the joints and bones and a low risk of injury. The buoyancy of the water provides resistance, and may enable you to do things you are unable to do on land.
Life with FSHD, as you know, poses challenges. For further detailed information and support contact either:
Australian FSHD www.mdaustralia.org.au/or
UK FSHD Support Groups FSHD Society www.fshsociety.org
There is also an excelent summary on FSHD and physio at
11A paper in Nature Genetics identifies the mutation in a gene causing the non-chromosome-4-linked FSHD disease called FSHD1B or FSHD2
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