Roland Lewis has been diagnosed with progressive muscular atrophy, a rare form of MND. Here, Roland talks about his experience of contributing to the DIPEx site, Healthtalkonline:
Over a year ago I read an article in one of the MND Association’s magazines asking for people to share their stories of living with MND in order to help others going through the same journey.
I had never heard of DIPEx. However I found it an interesting concept that patients could go on-line and learn from each other's experience.
A researcher called Carole came to my home and asked me a number of questions about living with the disease.
Talking to Carole took me back to when I first started to notice symptoms. One day I was playing badminton and pulled a muscle in my shoulder. My physio noticed some muscle weakness and told me to go to my GP. My GP referred me to the hospital. Six months later I received my diagnosis of PMA.
PMA affects only a small proportion of people, mainly causing damage to the lower motor neurones. Receiving a diagnosis of PMA is very strange. Whilst it’s devastating, at the same time you realize you are lucky you don’t have MND with a lifespan of two years. People with PMA generally have a much longer lifespan.
At first I didn’t frighten myself silly by going onto the internet. I was aware most people with MND have two years to live and much of the information on the internet is for people with MND. I didn’t feel that I had that much in common with other people affected by MND.
I felt very emotional going through my story with the interviewer. I found it very difficult to talk about my journey with PMA. However I really wanted to contribute to the site in order to help people in the same situation.
It still surprises me when I get so emotional when talking about my illness. However I find it therapeutic to talk about it. I am very keen to help in MND research – it’s the one thing which is in my power to do.
Looking at my interview on the website the first thing that struck me was that I hadn’t realised I had such a posh voice! It’s also been very interesting to see how differently people react to the same diagnosis.
There is one lady on the website who is very positive and upbeat. She is clearly determined to live her life as fully as possible and not let MND take over. However another interview showed a man who was clearly very down and found it hard to be positive about living with MND.
You can get a lot of good tips and advice from watching the DIPEx interviews on a whole range of topics from death, to equipment, to maintaining close relationships.
People affected by an illness will certainly get an insight into their diagnosis. Perhaps more importantly they will be able to see how they can live their life to the full in spite of it.
To view the MND section of Healthtalkonline, click here.