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Re: Re: Re: Charlie's Story

Everyone is different and there are different types and severities. Mine varies largely dependent on how tired and stressed I am. Exercise is very beneficial, but strangely if I embark on an exercise regime, the stiffness will actually get worse for the first few days before it gets much better. Sometimes I am hardly aware of it at all, and at other times it is really bad if I've been working very hard and not getting much sleep.

But parents discovering their children have it, shouldn't get too upset and make an issue of it. I even made the school football team at primary school, and I don't think my teachers knew anything about it until I was about 14 and was unable to do some of the more demanding PE.

The percentage of children now with disabilites seems much higher than when I was young and many disabilities are very much worse than myotonia.

Whilst I am aware that there are drugs available that will almost completely eliminate the symptoms, all these drugs have very dangerous side effects particularly when taken on a long term basis. I really don't think they are worth the risk.

The most important thing is to have a positive attitude, do lots of exercise, have a well balanced diet and avoid getting overweight - but this applies to everyone.

Being seriously overweight is far more disabling than having myotonia - yet around 20% of the population are seriously overweight.

Question for Jan

Jan,
Which do you prefer? E-mailing you our stories or posting them in the forum?

Re: Charlie's Story

Charlie,
It's awesome that you didn't let MC stop you from doing anything that you wanted to do. I tried to never let it stop me either. I played sports all the time when I was younger. It was a little annoying to have to warm up all the time, but it was just what I had to do. I still continue to run, bike and exercise. It's good to read about some one with MC that doesn't let it define them. Thanks for your story.

Re: Charlie's Story

It's fine to post stories on the forum as long as they meet the guidelines. However I think more people will ultimately see them if they are also linked on the website like the previous stories. I'll cut and paste Charlie's story and add it to the group.

Jan