What is Charcot Marie Tooth?

CMT, or Charcot Marie Tooth disease, is a progressive degenerative disease of the nerves. Caused by genetic anomolies, CMT impacts 1 in 2500 people, including me. It impacts each person differently. In general, CMT impacts the way the nerves transmit signals to muscles, leading to muscle atrophy, reduced sensation, and muscular imbalance. Efforts are underway to find a cure for CMT – by clicking on the CMTA STAR Appeal button above, you can help by contributing vital funds which will be used to support ongoing research and testing for a cure.

Hi! I’m Donna

I’ve changed my perspective on limitations. I prefer to live on the edge – the edge of my limits. I find my edge. I feel it for a while. And then I take a leap.

In 2004 I received a diagnosis of CMT – a progressive degenerative nerve disease. In 2007 I received a diagnosis of Ehlers Danlos Syndrome Hypermobility. In 2009 I decided that I needed to change my point of view about living with limitations. I decided to see just how strong, fit and able I could become. So that if, someday, I were to decline, I would do so from a position of strength and with a lifetime of laughter and experiences that I would have collected along the way.

On this site write about all aspects of my life – from sport to the kitchen, from what I read in the newspapers to what I hear from my doctors. I share how I manage my health and well being, and about my approach to fitness and healthy living. You can support the efforts to find a cure for CMT. You can follow my progress as I seek to constantly redefine – and beat – my own limitations. And I hope that you can find a bit of inspiration to do the same.

Helpless: On Managing Chronic Conditions

You know that feeling when  you comment on something, and then the original post is then deleted? That feeling of “hey, I thought my comment was insightful, and now the whole discussion has just vanished”? Well, this weekend I had that feeling. Without revealing too many details, I had reacted to a discussion about feeling […]

Growing Up Gumby

This post was originally published on Baseline Physiotherapy to raise awareness of Ehlers Danlos Syndrome. May is EDS Awareness Month. To learn more about EDS Hypermobility type (the type of EDS I have been diagnosed with) please visit the Hypermobility Syndromes Association. Growing up I knew that I was double jointed.  I used to think it […]

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That Face

That’s Felix. After sending him to The Dog House in Wales for ten weeks earlier this year (following his “look at me I’m chasing a herd of cows” incident), he’s been back at home with us for just over a month. Ten weeks was a long time without that face. What I learned when Felix was […]

11 Times Up A Hill

This is the face. The face of someone who just realised they had to cycle up a short sharp hill not once but nine times. And the face of someone who then realised that the same hill needed to be tackled twice again while running. Oof. On Sunday I did the Crystal Palace Triathlon. This […]