Becoming an admin member of the CMT Facebook group and connecting with MDUK has proved a life-changer for a man who was formerly a very active uniformed officer.
When marching became tricky, Garry was discharged from the RAF on medical grounds – but he went on to join HMP Wandsworth as a prison officer, where he worked for 25 years.
I wasn’t formally diagnosed until 2005 when I was 35 but had attended hospital yearly with my Mum before this as they wanted to keep an eye on me. CMT is hereditary, both my Mum and my Uncle have it, although no two forms of CMT are the same and its symptoms are different in all sufferers, even family members.
"Up until then I had lived a fairly normal and straightforward life. None of the doctors I saw could believe I was doing such an active job as a Prison Officer with the condition I had, what with the amount of standing all day and constantly walking up and downstairs – but I wouldn’t let it beat me and carried on, until things started to get more difficult for me both at home and also at work."
According to Garry, he came up against a lot of criticism at work, because they had never heard of his condition and thought he was putting it on. Eventually, in January 2018, his condition resulted in his being medically retired from the Prison Service.
"For several years I had been very involved in a Facebook group called ‘CMT Friends UK’ and it was these guys that introduced me to MDUK who became a great help when things got really bad and I was faced with losing my job. When I had to leave work, I was absolutely panic-stricken.
"I had no idea how I was going to pay my mortgage or about benefits or other help. It was MDUK that saved me and not only gave me expert help and advice but took me through all the processes I needed to do.
2At that time, I was living in my own flat, the lump sum from my retirement, paid my mortgage and with MDUK’s help I was getting PIP benefits. They also advised on what improvements and adaptions I would need in the new bungalow that I am currently buying."
Garry said that his CMT has got worse and now all he wants to do is help others with any type of muscle-wasting condition.
"I have been to several Muscle Groups in and around the south east of the UK and have met others in a similar position to me. I am also an admin member of the CMT Facebook group I mentioned earlier and am very active with that and we always refer people to MDUK for help and advice.
"The most common queries are how they will live and pay their mortgage and bills, how they can get taken seriously about adaptions at work and what benefits and other help are available to CMT sufferers."