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  • Q&A with Australian Health Practitioners

    How to lead a normal life with muscle weakness due to facioscapulohumeral muscular dystrophy?

    Due to my weak/soft shoulders, I cannot lift objects (and sometimes cannot even lift my arms). This is extremely debilitating and I feel as though I am not living a normal life at all. Can physical therapy help? Is there any way to strengthen the muscles with facioscapulohumeral muscular dystrophy?
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  • Helen Potter

    Physiotherapist

    As a Specialist Musculoskeletal Physiotherapist, with extensive experience and highly advanced qualifications, as well as excellent communication skills, I can help you to: Become informed … View Profile

    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

    http://www.fshsociety.org/assets/pdf/PhysicalTherapyAndFSHD_May2009.pdf
    NOV
    11A paper in Nature Genetics identifies the mutation in a gene causing the non-chromosome-4-linked FSHD disease called FSHD1B or FSHD2


    Helen Potter
    Specialsit Physiothearpist
    Subiaco

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