I would recommend anyone to become involved with the Association as there is a wealth of information which can be passed on and the more people involved the more the awareness of the disease will be raised and the sooner a cure will be found.
Hal Bailey
Before I try to explain how I came to the organisation and became a volunteer it is important to know some of my background.
I was diagnosed with MND in February 2005 after about 2½ years of tests
I felt I really did not want to know too much at that stage. However, my symptoms did not progress very fast, and about two years later the diagnosis was revised to Primary Lateral Sclerosis (PLS).
I had already retired when I was diagnosed, and in a way I took comfort in this as I had not been forced to retire. As a couple we have taken every opportunity to go away on holiday, I still drive, and it gives me the feeling of normality and freedom. I have been determined not to worry about my condition or let it take over my life. I have taken to heart the MND Association motto 'Make every day count' as life is not a rehearsal, we only get one chance to live life.
Because of my diagnosis, the MND Association came to me, but because I am like an ostrich, as I indicated above, I did not want to know. It took about three years for me to accept an invitation to one of the support group meetings which are held on a regular basis organised by the local branch.
It was during one of these meetings that the Association Visitor, who already knew my background, talked to me about becoming involved with the local committee as the existing webmaster was standing down at the next AGM. As it turned out I not only took on that role but also the roles of newsletter editor and publicity officer supported by my wife to act as my voice.
I am still on the committee, and will remain there for as long as I am needed. I volunteered to take on this role in order to help to raise awareness of the disease, and to put something back into the system. The support I have received since my diagnosis from both the NHS and the MND Association both national and local has been good and to put a little something back into the system is the least I can do.
During my short time with the branch I have completely redesigned both the website and the newsletter for which the Cheshire Branch was recognised and awarded an Oscarr in 2008 for ‘Great Awareness Raising’.
I would recommend anyone to become involved with the Association as there is a wealth of information which can be passed on and the more people involved the more the awareness of the disease will be raised and the sooner a cure will be found.
