My name is Ian Myatt, I was born in December 1963 (just so Frankie Valli could irritate me years later with THAT song) and I live in Stoke-on-Trent, England. As a child, I was never THAT keen on sports generally, always preferring to exercise my mind rather than my body but I was a healthy and active enough child playing rugby and cricket at school and I’ve always loved swimming.
Through the 70’s, 80’s and early 90’s, I did thousands of mobile discos, so carrying the heavy equipment and boxes of records in and out of pubs, clubs, hotels and village halls kept me pretty fit and active. In 1980 I joined a local drama group, which involved a lot of building sets (again carrying assorted heavy pieces of scenery in and out of halls) and keeping me pretty active, generally.
Looking back, I’ve had CNM for at least six or seven years, but it was disguised by a motorbike accident I had in April 2000 which smashed my left ankle, snapped my left upper fibula (shin bone), dislocated my left kneecap and my left shoulder, broke four ribs on my left side and snapped my right wrist. After surgery, I was left with two 3″ pins in my ankle, a 1″ pin in my wrist and mobility difficulties after the cellulitis I got in my rebuilt left ankle. Before the cellulitis struck in February 2002, I was managing with just a cane for walking, but the cellulitis caused my ankle to virtually seize up completely and put me back on my elbow crutch on a permanent basis.
After that, stairs, steps and even gentle slopes were difficult. I started to notice that my legs were getting weaker around summer 2002, but just put it down to my lack of general mobility and gradual muscle atrophy through a general inability to use them.
Again, looking back, my voice has also been getting quieter over the last few years, but then I’ve never been particularly loud (apart from my collection of garish ties!).
The first time I thought something was seriously wrong was towards the end of summer 2007 when I started feeling very shaky in my legs. I put it down to a type of flu and hoped it would just go away. Over Christmas that year, I had ‘real’ flu which laid me out for three days unable to move at all. When it finally cleared and the shakes were still with me, I decided it was time to go and see my GP in the New Year. He thought it was best that I ‘had a few tests for a couple of days’ in hospital, so I was booked in on 30th January 2008 for two days.
After every test imaginable, I was finally allowed home three weeks later, still with no diagnosis, but with the promise of a muscle biopsy on the 5th March that year. What they didn’t tell me until I was on the operating table was that they were unable to give me any anaesthetic as it could affect the result. After they’d carved their way down as near to my femur as they could (to get the muscle from as deeply as possible), they sent me home with two paracetamol!
I got my Centronuclear Myopathy diagnosis on 30th April 2008 and was told that, as far as they knew, there was no cure, no treatment, no hope and nobody else in the country with it. Not the nicest of starts. And I still don’t know whether I have the dominant or recessive variety (the results STILL haven’t come back from the genetic lab in Strasburg), so at the moment, we don’t know what the chances are of me having passed it on to any of my three children. I spent hours on the web trying to find out about CNM and getting very frustrated by every link leading either to MTM or my very own CNM but in Labradors!
For some reason, one day I decided to search for ‘Centronuclear’ on Facebook and found Toni Abram, who not only had the Information Point, but also lived relatively close to me and had CNM! I’d finally found someone I could actually talk to about it after six months of being totally alone with it and feeling horribly isolated. Since that day (14th October 2008), things have been much easier for me, mentally, and I’ve met some truly wonderful and special people, as well as a few other people with the same disease. So although I’m now deteriorating fairly quickly physically (I had to have a stairlift installed September 2008, ramps to let me get in and out of my house in December, hand controls for my car in January 2009, a power wheelchair in February 2009 and I’m now waiting for a van that I can drive from my wheelchair, hopefully in August 2009, that will let me get my life and some independence back), I have a whole bank of amazing people that I’ve never met who give me more support than they could ever realise, without them even knowing they’re doing it.
I don’t get any physiotherapy. I started back in November 2008 (with the physios naturally having no clue about CNM), but found that it took so much out of me that after an hour’s gentle physio, I was too shattered to work for about two days, so I decided it was best to leave it alone.
Just one more aspect of this wonderful disease is that following a fall back in November 2008, when I really hurt my back, I can no longer sit for more than two or three hours at a time. Falls are probably the scariest aspect of CNM, as I am now completely unable to get up unaided and have to shuffle along the floor to the footplate of my stairlift and use that to raise myself up on until I can stand up. This means that outside my house, the fear of falling is so strong it’s almost palpable and if I go anywhere further than my car (right at the bottom of my ramp with two handrails), I go in my wheelchair.
This reason alone is why getting my van will mean so much to me. It’s not just the freedom to go almost where I want to, but my horizons, which have gradually narrowed down to the four walls in my house, my car and my office at work. Going to the MTM / CNM conference in Houston would have meant the world to me as it would let me physically meet all the wonderful people and families that I’ve grown to know and love on Facebook, but, at the moment, as my world had shrunk so drastically over the last year or so, actually getting there is far too big a step for me to undertake.
Hopefully, when I’ve got my ‘freedom’ back with my van, I’ll feel more confident in my own abilities and be able to get together with those special friends that have given me more help, guidance and encouragement than they could possibly comprehend at the next conference.
Love, light and peace, Ian xXx