24 / 11 / 2015

Me, Myself and CMT

Hi there,

I’m Rebekah, one of the Physiotherapists here at Baseline Physiotherapy. I have Charcot-Marie-Tooth disease (CMT) type 1a and have been asked recently to film a video series on Physiotherapy exercises for people with CMT. First of all, being a Physio with CMT is weird. I spend a lot of my time when walking around listening to the slapping of my left foot, tracking the areas of reduced sensation and wondering for the 10000th time whether I can put off getting ankle splints sorted any longer. For anyone out there with CMT you will know exactly what I’m talking about when I tell you that getting splints which don’t cause more pain than they’re worth is not as straight-forward a process as you might think! Keeping active whilst managing fatigue levels and making adaptations to suit wonky ankles is also something that we all face, whether you’re a physio or not.

I went through the same process a lot of you probably have experienced – spending large portions of your life wondering why on earth you’re so much clumsier and slower than everyone else, getting diagnosed then going from doctor to doctor having to explain what CMT is while they look at you quite blankly (or look it up on Wikipedia before your eyes? ). I also was at university whilst going through the diagnostic process so was worrying whether I’d always be physically be able to be a Physio and if so then for how long, in addition to having to explain myself in practical sessions where it was becoming increasingly obvious that something wasn’t quite right. I’ve gone back and forth in my head about wanting to do something to help others with CMT as I appreciate that there aren’t a great deal of Physiotherapists out there who have it (as far as I’m aware) and I feel as though I really ought to do something but haven’t been able to pinpoint what or how. I regularly have conflict in my mind between 1) being sad that I have a chronic progressive nerve disease of which I have probably a clearer view than most regarding what that’s going to be like as I get older and 2) feeling guilty for feeling bad about it because as a physio I’ve seen first-hand a lot of people deal with much worse conditions or even people who are affected by the same condition but more severely than me. I don’t have much interest in sympathy from others and I wanted to make sure that whatever I do is something inherently positive as this helps me stay positive. This is where the CMT Association comes in.

CMTA is an American charity which supports research and provides information and support for people with CMT. Their vision for what sounds like a long time was to create a video database of physiotherapy exercises that can be shared with CMT sufferers around the world. I feel so grateful to have been asked to work alongside great Physiotherapists such as Dr Gita Ramdharry to develop these episodes and I really hope that it gives people a starting point when it comes to exercising and CMT. I’m by no means a natural performer and I’m much more comfortable writing or reading than being on camera but I hope that this becomes a project that enables me to contribute something positive to people with the same nerve disease. The exercises won’t look perfect as I’m a bit wobbly myself so I hope they will be realistic and relatable for people as they see Physio exercises for CMT being carried out by a Physio with CMT who knows what it feels like to be challenged by them.

These videos will not be a replacement of any Physiotherapy programme and I would always recommend that you find a therapist who has a good understanding of your condition who can assess you and develop an individualised programme. These will be just something to get you started. They are also not designed to educate fellow Physiotherapists or health care professionals, only to serve as a tool for the general public of CMT-ers, so I will do my best to keep it short, snappy and free of medical terminology.

Episode 1 I hope will be uploaded to YouTube soon and we will be looking at Balance and proprioception exercises. I will start off with an easier version of the exercise, then show you ways of making each one harder so you can find a level which suits you as CMT is so variable that it can be difficult to apply any set generic guidelines.

If you have any comments or recommendations for exercises or videos you’d like to see, I’d love to hear them.
Good luck and stay tuned as I venture pretty far out of my comfort zone to the big wide world of YouTube.

Bex