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Re: Re: Atlanta GA

Hi Thomas. Sorry I just noticed that you wrote this post. Yes, it would be fun to meet up some time. In response to have I ever met anyone with it--yes I have three younger sisters who all have MC to about the same degree that I have it. My sister just had a boy about a year ago who also has MC, but we don't know how much it will affect him.

Re: Re: Re: Atlanta GA

Jim,
I actually just moved to Alpharetta not that long ago. Maybe at some point we could meet up. I still have yet to meet another person with MC.

Re: Re: Re: Australia

Hello vicky, i think all of us have probably been the last of a group of people going upstairs,everyone thinks we are very polite no doubt, but there it is again,no matter what country we are from or whether we have had family members to learn from or not..we all try to hide it. by the way vicky what are bleachers?

Type of Myotonia: MSN Messenger,3

Re: Bleachers

Bleachers were my nemesis in high school. I was in marching band so we were constantly going up and down during football games and I had a PE teacher who thought that "running bleachers" was a great way to build leg muscles.

Also I can't tell you how many times I've fallen flat on my face getting off chair lifts. I'm not a skiier but we would always go on them at amusement parks and tourist attractions. I'd swing my legs so hard trying to keep them from getting too stiff to dismount that it would shake the wires and bounce everyone and they'd get mad :-)

Jan

Re: Re: Bleachers

When I was little my school used to on skiing trips. I dreaded getting off those lifts the entire ride up. Every time I either fell trying to get off or froze up in the process and had the chair come around and hit me. It was always so embarrassing because it was always a big ordeal. A few times I the operator turned off the lift as I was trying to get out of the way. No one had any clue but me. I didn't know I had MC at the time, I just knew that my legs didn't want to work. Now I remember why I never go skiing, haha.

Re: Australia

Hi Barbara - Bleachers are the steep, open "stair-seat" combinations at sports stadiums - they are wider and taller than normal stairs, because after you scramble up to the level you want, you sit on it - they susally don't have separate 'steps' to go up - and even those that do - everything is open - they don't have risers closing the treads in - if you catch your foot on one of those, and stiffen up, it could be treacherous. For me, I never liked spectator team sports much, so I didn't go to many games - maybe I didn't like them as a defense mechanism??? Stairs - what a curse! (And escalators aren't really much better, are they?) lois

Re: Re: Australia

oh i see, all of our stadiums and sport venues have seperate stairs leading to rows of seats so thank goodness i havent had that problem,i tend to walk to the end row because they will be the one's with handrails, allways a plus because as you know if your legs fail you, you tense up and wild horses couldnt prise your hand from it's grip on the rail. I have never been sking but i have often looked at the chair lift on television and thought,,no way..

Type of Myotonia: MSN Messenger,3

Re: Australia

Yes, chairlifts are a worry for MC'ers. I've had a couple of embarrassing moments also though, like Jan, I do keep my legs moving when sitting on them which seems to help. Though we do have a couple of ski areas in Australia, I avoid them like the plague...!!

Re: Australia

What was I thinking? what the heck is "susally"? - i meant "usually"... silly me! lois

Re: Australia

Hi Vicki

I'm 36yo, diagnosed at age 2 and live in Canberra. Feel free to email me!

Jill

Re: Australia

Hello Vicki, I have myotonia congenita, I was diagnosed 8 years ago after a lot of years of wondering what was wrong with me, I also dont know if I have Thomsons or Becker, how were you diagnosed & by who, would love to hear from you as I was also told there wasn't anyone else known in Aus, Regards Jenny

Re: Australia Testing Contact

Jenny, there are lots of people in Australia with MC. Here's some contact information for you - it's from an older post but should still be valid:

There is a researcher in Adelaide at the University of South Australia who studies myotonia congenita. I don't know if he sees patients personally, but he could certainly refer you to someone there who would. Here's his contact information:

Dr. Alan Bretag
E-mail: allan.bretag@unisa.edu.au
Phone: +61 8 8302 2398
School of Molecular and Biomedical Science
The University of Adelaide
Adelaide SA
5005 Australia

Also there is a Muscular Dystrophy Association of Australia at http://www.mda.org.au/