Hello! I'm currently working on a project to determine if my school is up to ADA codes. I was wondering if anyone could answer a few questions so I could clarify everyone's view on the disease. The Internet doesn't provide a clear view on the topic.

Are some Myotonia users confined to a wheelchair?
Are there non-medical ways that you've found help to control your disease?
What do you feel are the most difficult daily activities to do? How would you externally help yourself to do these things?

Thank you for any help! (:

Type of Myotonia: N/A

Country: US

Allison,

What a great project! I'm sure many people will benefit from what you're doing.

If you click on the link above that says "Return to Website" and then open the letter to school staff, you will see many recommendations for accommodating people with myotonia congenita. The two situations that are most difficult for us are stairs in the school and schoolbuses. Because we seem so normal most of the time teachers, bus drivers and the other students don't understand why we suddenly become almost paralyzed when we have to walk up stairs. The steps on a bus are especially difficult. Your school may have a special bus for disabled students, and if it's more than one level hopefully there is an elevator. We do not need wheelchairs, but students with myotonic muscular dystrophy do. It has some similarities but is an entirely different condition.

You can find a great deal of information on the MDAs website, especially in their articles from Quest magazine. Here's a link to some great articles on going to school with a neuromuscular disease:

Quest Magazine


Thanks for checking.

Jan

Type of Myotonia: Thomsen's

Country: USA

Allison:

Most people with myotonia congenita are not confined to wheelchairs, and the instances I've heard of people with MC using wheelchairs usually involve severe myotonia who are prone to falling, coupled with winter, where the cold weather and icy conditions make it too dangerous for them to walk outdoors.

A lot of people with MC are actually physically active.

All of the ways I control the disorder are non-medical. This usually involves keeping warm in cold weather, keeping cool in hot weather, and maintaining a moderate level of activity like walking. I try to walk 3 or so miles a few times a week and I usually walk to do most of my shopping and errands. Lately I've been going to the gym. I do a modified version of a muscular dystrophy oriented strength training program, and a few of the exercises my physical therapist told me to do for a hip problem I've developed (the others I had problems with due to the MC and a hernia).

I also try to get enough sleep. My disorder does not seem to be diet sensitive but those who feel their condition is diet sensitive usually use diet to minimize their symptoms.

Because I have upper body weakness/stamina issues, this makes things like doing dishes, laundry, and cleaning up particularly draining to me and I'd rather use my limited stamina for other daily tasks. Life style changes I've made to deal with this are...

I usually use paper plates and one spoon, cup, and pan to minimize the amount of dishes I have to do. My roommate does his own dishes.

I have to do laundry but rather than sit there folding things, which drains my lower torso muscles, I only fold my jeans. I hang my shirts up and I cram the rest unfolded into drawers.

I usually only clean/yard work over my breaks so I can spread it out over the course of a few days. My roommate is supposed to clean the kitchen regularly but he usually only does so when I bother him about it.

I take my time getting on escalators and I usually hold on to railings on stairs, but not always these days because my condition has shifted from less stiffness to more weakness/stamina issues.

Type of Myotonia: Becker

Country: USA