It’s September and that means one thing – CMT Awareness Month. During the month of September I will be using my blog to play a part in raising Awareness with an “alphabet challenge” – blogging a letter / key word almost every day. Today is brought to you by the letter H. I hope my month of blogging will help you to learn more about CMT – the most common but least well known hereditary nerve disorder. And I hope this will also help to raise funds for the Charcot Marie Tooth Association to support its efforts to find a treatment for CMT. You can join me in learning more about CMT by clicking onto www.cmtausa.org and of course a donation would be wonderful too!
I just had my regular visit to the National Hospital for Neurology and Neurosurgery.
After years under the muscular side of the neuromuscular disease clinic, last year I switched to the neurological side. My doctor is Mathilde Laura. I did a 10k with her and the team from the National Hospital in 2013. She is second from the left in the photo below (next to me, I am the one wearing the visor).
This year Mathilde has been a huge supporter of my endeavours – she has filled in the paperwork for me to compete at an elite paratriathlon level at International Triathlon Union World Paratriathlon Events. She has sent to me publications about CMT research. She is always there for me when I have a question.
I am often asked why bother going to a neurologist if they can’t do anything for a progressive degenerative condition. It’s a fair question.
The key reason is to have someone who does not live with your symptoms day in and day out take a medical view on how you are doing, to see if there has been progression. This involves a similar set of tests each year – sensation tests, strength tests for the muscle groups most impacted. And then a comparison with past results, to see how things are going.
This year my visit flagged what I knew instinctively – that something has happened to my right ankle strength, that I have more impairment there. We discussed this – was it the result of that fall down my stairs in January that happened when got up at 2am to take little Felix the brand new puppy out for his mid-night bathroom break? Or is this just “normal” progression for someone with CMT?
Regardless of the why, the visit highlights what I need to give some attention to – my right ankle strength and mobility.
Working with my doctors – feeling like I have a team to support me in my personal goals and health challenges – is step number one for me when it comes to looking after my health and in my aim of healthy living with a chronic condition.
Next year I’d like to take my team to another level. Mathilde and I discussed the idea of doing a team entry to the London Triathlon. I would swim, Mathilde would run, and we wondered if we could convince Gita Ramdharry to cycle. We’d do it for charity, to raise awareness of CMT. Something to look forward to for 2015 (besides my annual check up!)
It’s CMT Awareness Month. Today’s post was brought to you by the letter “H” – Hospitals, and Health. You can learn more about CMT and donate to support the search for a treatment for this (at present) incurable progressive degenerative nerve disease at www.cmtausa.org—Thank you!