My younger brother, Paul, joined the Myotonic Dystrophy Support Group many years ago, having been diagnosed with the condition at the age of 19. Onset had been much earlier, but diagnosis in the 1970’s took a very long time. No other family member has the condition, s far as we are aware, although, as we now know, severity and symptoms can vary enormously. Since losing Paul two years ago, I wanted to make a practical contribution to the charity and to be as supportive as I can to those with Myotonic Dystrophy. I am the contact person for Dorset, Somerset and Hampshire and we have had a couple of small group meetings locally so far this year.
Having watched the slow but relentless progress of my brother’s condition and having been closely involved on his behalf with a wide range of support services, from care providers, occupational therapists and the NHS to the benefits service and Motability, I would hope to be able to share some of my experiences with others who may find it useful. I am now retired, having spent several years living overseas and working in administrative roles for two international airlines. I have also been a teacher of English to overseas students, both in the UK and in the Middle and Far East. The latter part of my working career was spent in horticultural and landscaping sales.
In summary, as a Trustee, I would hope to work with the team to increase awareness of this still little recognised condition and to assist with any fundraising for research purposes. As a member of a family directly affected by Myotonic Dystrophy, I will support others in a similar situation however and whenever I can.