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Permalink Reply by Ian Myatt on August 2, 2011 at 11:18

Hello all.

 

My name is Ian, and I have a very rare neuromuscular condition called Centronuclear Myopathy, which causes a (sometimes) gradual deterioration in my muscles.

If you want my life history, read on.

If not, I don't blame you at all. :-)

 

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 about ten 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, or my grandchild.

I spent hours on the web trying to find out about CNM and getting very frustrated by every link leading either to (Myotubular Myopathy (a similar condition, but in infants) or my very own CNM but in Labradors!

For some reason, one day I decided to search for 'Centronuclear' on Facebook and found the Centronuclear Information Point. http://http://centronuclear.org.uk

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 now have a Motability van with a tail lift that I can drive from my wheelchair, I now have my life and some independence back.

 

Love, light and peace,

Ian

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Permalink Reply by Steven David Baird on August 2, 2011 at 13:51

Wow thats more than I could have hoped to get from anyone! I read the whole thing and its really really fascinating. I do like how you ended on a positive note :) Thank you very much for that. I'm going to read through it again to make sure I didn't miss anything :)

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Permalink Reply by Diane Wright on August 23, 2011 at 14:54

Hi Ian what an experience to go through and especially made worse when you can't talk to someone who has been through it. So i'm happy for you that you found some people eventually and others who sound like thay have been a great support to you. Independant living must take a whole other meaning to you know as it impacts on you day to day and the fact you were very active to begin with. Its great to hear you have living aids fitted and I'm sure you are a real inspiration to all around you. Thanks for sharing peace out to you too! All the best Diane

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Permalink Reply by Steven David Baird on September 2, 2011 at 22:42

I just thought I should introduce myself as well. I'm Steven Baird. I took on the chance to help set up this website and I was with the Blackwood Foundation (I had an absolute blast working there) but alas I've moved on to new pastures.

My background is that I have a degree in International Politics. I've always taken an interest in all types of current affairs including news, blogs and issues to do with disabilities. I'm also sport mad and will watch most types of sport. I also do some blogging as well but since its nothing to do with bespoken I wont plug in here ha ha.

 

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Permalink Reply by Richard Child on September 7, 2011 at 9:13

Hi,

 

My name is Richard Child, a recent graduate from University College Falmouth studying 3D Design. My final year of the degree was focused in the medical industry, designing with staff, manufacturers and patients to create user friendly products that listened to their needs. 

 

I am now looking at bringing one of these products to market. I'm currently forming a company call Hymid R & D Ltd, based at the Innovation Centre in South Devon College. The company is seperate to, but works closely with the manufacturers Hymid Multi-Shot Ltd (www.hymid.co.uk). Hymid R & D's main three objectives are:

 

• To research and develop new products and processes and to evaluate their commercial potential with the aim of bringing them to market.
• To design out cost and design in customer value for existing products.
• To secure Intellectual Property Rights (IPR) on proprietary products.

I have professional experience and an interest in the Medical Industry, but Hymid R & D focuses on a wider range of projects and services. You can get in contact with any questions, information etc via the links below, or send me a message on bespoken. Thank you for your time. 

 

Personal website: www.richardchild3d.co.uk

Email: richard@richardchild3d.co.uk

Twitter: @richardjchild

 

I also enjoy playing sports! :)

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Permalink Reply by Linda Jane McLean on September 19, 2011 at 13:02

Hi, I'm Linda,

Life long epilepsy has provided me with plenty of unusual scenarios and weird stories. I have been taight that it pays to keep your sense of humour!  People can become confident if you teach them what is required.

I trained in nursing (that was a bit of a fight) but was relatively stable for years. I worked in Intensive care and eventually moved to orthopaedics, where I was a Ward Sister. (I think they might have forgotten)

Then I became involved in Independent Living - and helped  develop one of the first pilots in Scotland. For my sins, I am now writing it up for my MSc in Clinical Leadership. Will it ever be finished? I hope to submit it by the end of the month.

Email:  aracml15sp@hotmail.com

Twitter @researcher513

Enjoying this site!

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