Yep very educational vid. Remember the school stairs issue as though it was yesterday (and I'm 50 in a few weeks time). I have to give presentations at large international conferences and am always planning how to get around the stiffness issue or if I have to go up even a few stairs onto a stage. As you can imagine just the thought of giving the presentation has the adrenalin rushing which in turn makes the MC even more problematic. Still I think that adults are more 'forgiving' than the kids were when I was at school, perhaps with adults its a bit of 'there but for the grace of god' type thing ? Looking forward to seeing more... good luck and dont hit your head too hard when you fall... Kev

Type of Myotonia: Beckers

Country: Uk

I imagine you are feeling that adrenaline rush when you go up those stairs. I like the way you do it though--there's no better way to face your fears than to just jump right in. I always admire people who have something that is potentially embarrassing or really challenging and you see them taking it on as a part of their daily or weekly routine.

Type of Myotonia: Thomsen's

Country: USA

Hi Jim...I do love you video and I think it is wonderful that so many are viewing it and being educated. One thing I think would be helpful would be if you stated that you have Thompson's. Becker's has some differences as I hope to share with my loved ones in a video some time. Thank you for your hard work...it is so appreciated!

Sincerely, Tammy

Type of Myotonia: Becker's Type

Country: USA

Tammy,

Can you tell me what you have noticed as different between the two? The main thing I have gotten feedback about is that people with Becker's tend to have more of the "timber" effect where you seize up completely all over and can't catch yourself. Jim's video actually looks more to me like someone with Becker's in that respect. I can usually get my arms out there to help break a fall.

With Thomsen's I hear a lot more about stiffness in particular areas like eyes, throat, tongue and diaphragm. I had so much trouble with choking before I got the stiffness under control and I would often sound like I was drunk when my tongue was affected. One of my daughters had such stiffness of the ocular muscles that she said it would feel like her eyes were rolling back in her head.

As far as age of onset, I think a lot of the internet information is wrong. It seems to vary so widely depending on the mutation or combination of mutations that it's hard to give anything definitive.

One of the other things that is problematic is the use of Dr. Becker's name in both Becker's MC and Becker's MD. A lot of people (and doctors) get that confused.

Jan

Type of Myotonia: Thomsen's

Country: US

In regards to the fall ... I've learned that when I fall it hurts less if I turn my body and land on my shoulder. In this instance I hit my shoulder first and then rolled onto my back. I've also learned to relax my entire body and not let the adrenaline affect kick in. When I was younger and I would trip up on the sidewalk or stiffen up completely, I would be so terrified that someone was going to see me fall that the adrenaline would surge through me and I would become literally stiff as a board.

In this video I ran until my muscles locked up and then I turned my body so I would fall on my shoulder.

Type of Myotonia: Thomsen's

Country: USA

Just reading about your video seems exactly what I have experienced. How do I find your video?

Type of Myotonia: congenita

Country: UsA

Alan,

You can go to the main site at http://myotoniacongenita.org and click on the YouTube link.

Glad you found the forum!

Jan

Type of Myotonia: Thomsen's

Country: USA

Tammy,

I hope to do several of these videos, and I hear your concern. The first problem with stating that I have Thomsen's Myotonia Congenita is that it will get confusing for most audience members. Since this first video was so short--it is easier for people to digest if they know that this is Myotonia Congenita and this is what Fainting Goats have.

The second problem is that video is a visual medium and since I have Thomsens, if I mentioned that I have Thomsens and that their is a second type of MC called Beckers then I would also need to show someone who has Beckers. I saw a Fainting Goat video that made this comparison type well ... there are two types of Fainting Goats, those that fall and roll on their backs and those that just stiffen up and don't fall when they run. If someone with Beckers was willing to videotape themselves and send it to me then I could make a video about the difference between the two.

Type of Myotonia: Thomsen's

Country: USA

Just imo, I don't think the differences are significant enough to try to differentiate in a short, general info film. I think it's enough to say that Myotonia Congenita can be found as either a dominant or a recessive genetic condition, but that the symptoms of both are fairly similar. If someone is interested enough to want or need to learn more, they can pursue it, and not feel they have gotten sufficient information from a video that they don't need to follow up... that could be a potential disservice, as I see it.

We have some members with kids - it looks like some might be willing to film their children - actual footage of "our" kids might be really helpful - as long as there are no legal or ethical constraints. An adult is capable of exaggerating their reactions to make a point, but kids are totally natural, so the point would be more obvious and natural, no? Or am I over-thinking it? lois

Type of Myotonia: MC - Becker's type

Country: USA