Muscular Dystrophy Campaign – TalkMD

Muscular Dystrophy Campaign   have launched a new support forum.

Details to register can be found here



2 Responses to “Muscular Dystrophy Campaign – TalkMD”

  1. Tweets that mention Muscular Dystrophy Campaign – TalkMD « Carer Watch's Blog -- Says:

    […] This post was mentioned on Twitter by BendyGirl, Rosemary. Rosemary said: good luck with new message board @CampaignsMD Muscular Dystrophy Campaign – TalkMD: […]

  2. Margaret Mueller Says:

    I began having noticeable symptoms in 2007, by spring 2008. I could not lift my head. My primary physican did not diagnose me. She sent me to a physical therapist who was incompetent to assist me, and more interested in the receptionist than in patients. By January 2009, I sought help with a physical therapy office that was highly recommended by a local pilates business. At my first exam, Rachel and Tim told me that all of the ligaments and muscles in my neck had atrophied, and that I needed to wear a philadelphia collar “for my safety.” They suggested I see a neurologist who immediately told my husband and I that he did not know what I had, but ‘there is no treatment and no cure.’ Following blood work, he delivered the news that I have FSHMD, and told me ‘not to bother with physical therapy; it won’t do you any good.’

    Since I had already been working with my therapist for four months, I decided to ignore his opinion. I have been working with Rachel for two years now. Initially the exercises she gave me to do helped to pull my shoulders into supporting my arms comfortably. At the one year point, after doing neck exercises faithfully with no results, my neck muscles began to work again, and I am able to hold my head in a natural position which makes walking and doing things very comfortable. In the last year, my calves, upper arms and hips have been effected, and, again, with exercises to strengthen my core, and the specific muscles involved I have been able to regain and retain the ability to use my arms and walk. Fatigue is a problem. I do all of my workout on Monday, Wednesdays and Fridays. I can now do things that I have been unable to do for years. I have never taken prednizone or any pain medications.

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