I have met some amazing people who cope with this awful disease with dignity and courage and are an inspiration.
Approximately 10 years ago my husband began to show symptoms of MND. He wasn't diagnosed until the following year. He died nine months after diagnosis.
During his illness we attended The Royal Hallamshire Hospital clinic for MND and had the help of healthcare professionals. The Association was helpful in loaning us a reclining chair, which my husband found a great help, and an adjustable bed. We did not feel the need of any other help.
After my husband died in January 2001 I had to build a new life and it was then that I attended South Yorkshire Branch meetings and from there became more involved. Jane Evans (regional care development adviser) whom I met at these meetings was a great help and support.
As time went on it was suggested that I might like to become Association visitor and, after some thought, I decided to go for the training. I suppose that my motivation was that I could no longer care for my husband but there are a lot of families who have a member with MND who do need help and I had the time and experience to give them some support. I have met some amazing people who cope with this awful disease with dignity and courage and are an inspiration.
Initially when the idea of Association visitor co-ordinators was suggested and I was asked to consider becoming one, I refused as I felt that regional care development advisers (RCDAs) should perform that role. Because I worked closely with my RCDA, and because I come from a healthcare professional background, I eventually agreed to give it a try. It is quite a time-consuming post and I think that without my medical background, I would have found it more difficult.I get most satisfaction from visiting families and they know that I am at the other end of the telephone if they want to talk.
I have found my involvement with the South Yorkshire Branch very fulfilling. We are a cohesive committee with a variety of skills who work well together.