Paige,

You should start a blog for kids with MC! Maybe you could even get extra credit for English class :-)

My worst PE nightmare was when we did a gymnastics rotation in high school. I nearly killed myself doing a vault - my muscles froze after I jumped off the springboard and I slammed into the horse. Then we did the balance beam and you can imagine what that was like. When we got to uneven bars I refused because I knew I would fall (we were required to do somersaults, etc). The teacher was angry with me and gave me a low grade, but I didn't care.

I'm so glad you know what is wrong with your muscles. My granddaughter with MC is your age and she educates all her classmates about it. We have camps here sponsored by the Muscular Dystrophy Association that are amazing. She goes every summer.

Several people in my family with MC lives in a cold climate, so we have learned to layer clothes and find ways to stay warm. I even keep extra coats, gloves, hats, and socks in my car in the winter along with a space blanket. It's easy to get stranded here if you get caught in a blizzard. My granddaughter always wears fingerless gloves in cooler weather which helps. My oldest daughter just moved to the mountains of Kenya with her family and it stays about 75 degrees all year. That is MC heaven!

Jan

Type of Myotonia: Thomsen's

Country: USA

Ah gymnastics. I was never so glad to quit something in my life! Though I do which I could do that parkour/free running stuff....and breakdancing. But I just don't see that in my future.

Type of Myotonia: Becker

Country: USA

HI! that would be an amazing idea! any ideas how i could??
anyway, OMG! poor you! how embarrassing! what are these camps that your granddaughter goes to. i think its a really good idea. what's it called? is it just for people with MC? ill have to look into it.
see ya for now,
paige

Type of Myotonia: becker

Country: UK

Paige, Wordpress is my favorite blog service (Wordpress.com). There's a company called Lynda.com that has great tutorials. You can get a free trial or subscribe for a month at a time.

This is a link to the information about the Muscular Dystrophy Association's summer camps in the US:

MDA Summer Camps

There are kids with all kinds of muscle diseases including myotonia congenita. In the UK your organization is called the Muscular Dystrophy Campaign. They also cover myotonia congenita:

Muscular Dystrophy Campaign

They don't have a camp, but they do have a group of young people called Trailblazers that helps change laws related to disabilities and get media coverage for disability issues. You can find information about them on their website.

I love riding, too. I never had problems while I was on the horse, but if we were still for a few minutes before dismounting I would fall flat on my rear getting off because I was too stiff from my muscles cooling. That is common for all of us...usually after about 15-30 seconds of being still I would become extremely stiff. People probably thought I was hyperactive because I was always jiggling my legs to keep them from freezing up.

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi, thanks for all those brill sites, il have a look at them now. you know the thing with the horses, well i do the exact same thing. I'm fine riding, and can do all the stretches, (i can even touch my toes!) but when i get to come of, i have to wait ages until my legs feel ready! funny huh?
from Paige [:)

Type of Myotonia: becker

Country: UK

MY HighSchool athletic nightmare took place at the age of 15,when My Mother thought it would be good for Me too join the swim team,at the first swim meet I thought I could warm up behind the bleachers,It didnt work" I dove straight off the pool block and seemed too have coasted half-away across the swimming pool,I remmeber thinking back woundering why no one attempted to save Me,well about 6 months later I finaly recieved My Diagnosed with MC,Be happy if your Diagnoses is at a much younger age and famialy are more understanding.

Type of Myotonia: MC

Country: USA

Hi Leroy!
OMG! that has happened to me loads of times! i can remember when i went swimming in year 3 and we were doing a swimming gala. when it was my turn, i had to swim in front of everyone!! i was so nervous, and ive read somewhere that nervousness
can cause MC to worsen.
Anyway i jumped into the water and set of swimming. I started of OK, but i could feel myself getting stiffer and stiffer, until eventually, i had to get out of the pool. it was so embarrassing!
My motto is, if you laugh, there is no way you can cry!
from Paige

Type of Myotonia: becker

Country: UK

Paige,

I'm sure we all have some many stories of things that happened when we were younger. I must admit kids are not very forgiving and it did seem harder to 'manage' my MC when I was younger. All I can say is that now (I'm 52 now) its a little easier in that adults are generally more accepting although I never go into detail when I explain what it is, I normally describe it as being a bit like MS, just seems easier than going into all the detail. I must admit I am suprised that no one has put on here about any serious accidents they have had as a result of their MC. I know I have had a few close shaves, usually crossing roads etc.

Kev

Country: England

Kev:

I've only had one or two. The first, falling, was partially the cat's fault. The second, rupturing a tendon/muscle/ligament, was my fault....I had a bout of hyperexcitability on the last rep of the last set doing 180lbs on the interior hip abductor machine, and something in the back of my upper thigh ruptured. It took over a year before I could walk on it without feeling any pain, and I should have had treatment for it but I had crappy insurance which wasn't good for much but antibiotics and basic blood work.

Other than those two incidents, I'm generally less accident prone than most people because I am very aware of my physio-dynamic abilities and limitations. I can also usually tell whether my muscles will lock up or not before I move. I'm also probably mildly dyspraxic so I've always put more planning into how I move, and as long as I don't rush it I can do some fairly precision tasks.

Type of Myotonia: Becker

Country: USA

hi Kev!
its Paige here. ive just read your thing. soz i dint reply before but i dint see it! yh, ive wounded up in hospital a few times, coz ive fallen. in fact i fell down the stairs at school the other day! thow luckily my friends were there to help me. just wondering, where abouts do you live in england? coz im the only one in here i think that is not livin in the UK!
did you know that the chance of getting MC here is out of 10,000, but in America its only summit like out of 5,000?!!
plz let me know,
paige void(0);

Type of Myotonia: becker

Country: UK

Paige:

Here is a page that will give you better numbers.
You will have to edit the link because it can't be posted as a direct link from this page.

http:
//www.ncbi.nlm.nih.gov/
books/NBK1355/

Joe

Type of Myotonia: SCN4a (PAM)

Country: US

Hi Paige:

I've seen estimates of the worldwide prevalence of myotonia congenita to be 1 in 50,000 to 1 in 100,000. But it's believed to be as common as 1 in 10,000 in some parts of Scandinavia.

I think the odds of being diagnosed in the UK are greater because in the UK you have universal healthcare. Anyone can go see a doctor and the government pays for it, but here, that is not the case. Here, to see a doctor, and have tests, most people need either private insurance, which can be expensive, or very limited, or they have to pay for everything out of pocket, which can be very expensive. My brother had to have surgery to have his appendix out when he was young and it cost $27,000....that's about 47250 pounds.

For very old, poor, or disabled people there are a few government health care programs that might theoretically pay for some or all of a person's health care...in my state this program is called Medi-Cal. But a lot of doctors and hospitals don't accept Medi-Cal because the government doesn't pay them enough with it.

I think American doctors might also be less aware of disorders like myotonia congenita.

Type of Myotonia: Becker

Country: USA

A lot of things like that can be overcome to some extent by mental muscular planning.

I was "trained" to use starting blocks in track when everyone had to practice sprints together. I have to say that no matter what, it's WAY slower for me to start in blocks than standing because the "prep" position makes my muscles want to freeze up. In general, my standing sprints, with me working with all my effort, were about as fast as those of the 250lb shotputters! But I didn't fall. I knew what my muscles needed, I avoided the adrenaline rush that makes everything stop responding, and did something that was more or less like running out of the blocks!

I was also the kid who could never catch the ball fast enough or throw it the right way. As an adult, though, I got into ballroom dancing, and the planning that went into that transferred to other activities, so now I'm still moderately bad at sports requiring hand-eye coordination, but I am not SPECTACULARLY bad like I was.

I really can't say that I was ever teased for it, though. It confused people more than anything. I could do more sit ups and pull ups than any girl in my grade, but I was useless at ball games and sprints. I lived back int he age when kids picked teams in PE, too, and honestly, I was never, ever picked last even though I "should" have been for several sports--part of that was probably because when I was the "picker," everyone knew that I made an effort to pick a mixture of good and bad players and not leave the less able kids to the end, so I think other kids reciprocated.

Type of Myotonia: Thomsen's

Country: USA