Jim was diagnosed 2 years ago (2005) with Progressive Muscular Atrophy (PMA) form of MND. His legs and arms are affected but not speech.
Jim first noticed fasciculations (muscle twitching) in his legs about three years ago (2004). He looked on the internet and saw that it might be a symptom of motor neurone disease, but could also be caused by a lot of other conditions. The first time Jim went to the GP, the GP did not think it was serious, but Jim was worried and went back just before Christmas that year. This time the GP referred him to a neurologist and he had an appointment a few months later, in April 2005. Jim asked if it might be MND, and the neurologist told him it was possible. Tests confirmed the diagnosis within a couple of weeks, and they were given another appointment so they could come back and ask further questions. He does not remember clearly when he was told it was the Progressive Muscular Atrophy (PMA) form of MND, but his wife remembers that at this second appointment they were told it was ‘not the most rapid kind’.
Jim and his wife found the first few months were a time of grieving, feeling sad and frightened. Telling people was very emotional, especially his son. He feels lonely and angry sometimes. Gradually he found that planning what aids and equipment he needed around the house helped him regain some sense of control and a feeling he was fighting back – even though he also thinks it’s important to accept you cannot really control the condition. Early on he made a decision to get a through-floor lift and a hoist put in place, but waited until he really needed it before putting the plan into action.
During the first year after diagnosis he was still able to walk quite normally, though it could be tiring and he would get a lot of cramps. Gradually walking became more difficult, and about a year ago he found he could no longer walk with a frame. He now uses a wheelchair. He found the NHS wheelchair service was not very flexible about what they offered, so he bought his own wheelchair. Although some individual professional staff have been wonderful, care does not seem to be well co-ordinated.
Jim’s hands are now getting weaker, and he is considering getting a computer with voice recognition technology. He had a van with hand controls to continue driving, but has now stopped. He has also just given up work. The college where he taught was supportive, but he was finding it harder as his arms got weaker, and very tiring. Jim takes riluzole, but he is unsure whether it has made any difference.
His advice to other people is to plan ahead for the condition, but also to plan enjoyable things and get the most out of each day. But each person’s experience will be different.