Motivation throughout Motor Neurone Disease

Graham Keith Robson, 67, was diagnosed with motor neurone disease in October 2022. Here he shares how the weekly exercise classes and the neuro support group he attends at Saint Francis Hospice are to help him with his mobility and to cope with his illness. 

When I was diagnosed with motor neurone disease, it was a big blow. You hear about people who are well known like the Rugby League player Rob Burrows, but you do not hear about other people like me.  

My health has been going down hill rapidly. I started off having difficulty with my hands in January 2022. First my left hand and then my right hand. Since then, walking has become difficult and I am finding it hard to stand up properly because of my balance has deteriorated.  

How the hospice has helped me 

My wife Mona found out about Saint Francis Hospice and I started coming along to the exercise classes on a Tuesday morning. It is difficult because ultimately there is no cure for the disease but coming to the physiotherapy class is helpful in terms of managing things as I go along. It is nice to join in with other people and it makes me feel better.  

I also attend the neuro support group once a month and I get to meet other people who have similar issues. Most people are really upbeat and it is good to be able to talk about things I am finding difficult. Mona comes with me and while I am at the group, she has a chat with one of the counsellors at the hospice. My illness has turned her life upside down. She still works full-time as a deputy head teacher and has to care for me when she gets home.  

Getting by with help from my friends

It has had a big impact on me emotionally too. I am not great sitting at home doing nothing and I have to do that a lot now because I get very tired. I am still trying to play golf three times a week. I have always been active and I have a lot of friends through golf. It’s a great distraction from my health worries.  

I’m so lucky to have such great friends and family and that helps me to stay positive and keep going. Since being diagnosed, we have been making the most of life. My friends took me away on a golfing trip to St Andrew’s in Scotland. I went to Euro Disney with the grandchildren in April and I was away with my wife in Cape Verde in May so we are definitely keeping busy.