When I was diagnosed with MND in 1978 it was virtually unknown outside the medical profession, even to some GPs. Patients felt very alone and isolated. When the Association was formed it was a life-line for people.
When I was diagnosed with MND in 1978 it was virtually unknown outside the medical profession, even to some GPs inside. Patients felt very alone and isolated.
When the Association was formed it was like a 'life-line' for people. For the first time we could meet and talk to other patients and families in similar circumstances. It gave us all hope and valuable information.
I had found out about the consequences of MND from my local library. Consequently, I was very eager to get involved and spread the word so that new patients were advised in the correct way. It is vital, especially immediately after diagnosis, that new patients receive all the help, support and information available to them. The Association provides this.
My roles in the Association with highs and lows:
At present I am an association visitor and organise the MND Association Club which has been raising money for the Association for over 25 years. Other past roles - National Committee 1980 - International Symposium - London Home Counties/Southern/ Surrey Area Committees.
Highs: Meeting so many brave and remarkable people who in turn have inspired others.
Lows: Sadly losing friends like Jim Tew, John Prince, Kate White, Peggy Betterton and many others too numerous to mention, whose experience, advice and understanding, they passed on. Occasionally reading in the press/media that there has been a 'wonder cure' for MND and raising false hopes for people and their families.
As an association visitor I encourage any suitable family/friend that has an interest in MND to join. I have often found that people without any previous medical experience, but have gained practical experience by supporting a patient, are happy to pass on their knowledge to others. These people have been at the sharp end and their input is very important.
I congratulate the Association on its 30th Anniversary and what it has achieved. May its progress continue to hasten the day when a cure is found for this most distressing of all diseases.