The story of Peter
Below is from the Muscular Dystrophy UK website, which I helped with.
Peter, who is living with CMT, approached the advocacy service for assistance with his Blue Badge application as he was beginning to find walking harder and it was becoming increasingly difficult to walk longer distances. Journeys between his car to the shops, doctor’s appointments or even to his house were becoming a challenge. He decided that applying for a Blue Badge was the best option to ensure he kept as much independence as possible.
Muscular Dystrophy UK provided guidance to ensure Peter was assisted throughout the process as well as providing a letter to support his application. Peter was able to secure a Blue Badge to allow him park in disabled bays.
Before, I would avoid going out as I would get too fatigued but now I manage to do far more, as less walking or pushing on wheels allows me to travel greater distance with less effort, pain and fatigue, giving back independence and a self-achievement for oneself.
A Blue Badge allows Peter to park in spots closer to the buildings he needs to access to as well as easing the discomfort he felt from these tasks previously.
It has given me back independence by enabling me to park closer to most needs. A quick pop to a shop was out of the question before as I couldn’t manage the walk from a normal space of parking, to the shop, around and back out. Now with a blue badge I can do this.
My story with 1A.
After 20 years as a chef I had to quit my own business and retire my chefs whites for a office job which soon became difficult with loss of hearing and straining of the wrists. I had NO idea I had charcot-marie-tooth-disease and thought it was a recurrent rsi or carpol tunnel syndrome. My gp sent me for a elctromagrom and it was inconclusive so the next step was neurology. Dr Breily said there and then from the first hand shake, “can you show me your feet please”, it’s not everyday you here about cmt and for me it was the first. Bloods came back confirming so, I’m a 1aer it was the missing part in my life story and explained clearly why I was the “clumsy kid” falling over my own feet. The last 4 years I’ve had 4 surgeries from toes tendons and screws.
 I have my own support group on Facebook which has seen over 1300 people join and become “The best support group in the uk”. It’s called #cmtfriendsuk and 4 years ago named myself as #the_cmt_warrior which has now spread around the world with lots trending as cmt warriors.
 I’ve became a peer support volunteer with muscular dystrophy UK as well as starting to fundraise to enable them to carry on with their great work, research and most importantly a life changing support network.
PeterÂ