I've just watched it, thanks for going to the effort Jim.

I've left you a comment on YouTube.

Type of Myotonia: Becker's

Country: England

Jim's Video


Thanks, Jim!

Type of Myotonia: Thomsen's

Country: US

good job jim... took a lot of guts to fall like that, they actually seemd fairly gracefull. i would have been scared to fall like lumber and hurt myself, bravo!

Type of Myotonia: ??

Country: usa

Thank you. I was a little scared before I did it--I did it twice. The first time I think my muscles were too loose, so I just kind of ran and took a dive for it--the was the fall at the end of the video.

I went and looked at that and it didn't look very good, so I went back inside and sat down for a while. When I tried to get up my muscles were feeling pretty stiff, so I knew I would have a better chance at falling in a more realistic way.

The most frustrating thing about shooting this video is that the way it feels on the inside is not what it looks like in the video. I kept wanting it to look like it does when I'm sitting down for a long time and try to walk in front of a group of people, but the adrenaline always seemed to loosen me up more.

I guess that's why people have often said to me that they didn't know I have MC. From my perspective there is a lot going on, but looking at the video it just looks like I'm walking kind of jerky and just a little stiff.

Type of Myotonia: Thomsen's

Country: USA

yeah jim...
i commend you!! it feels like the whole world is watching sometimes when you get up to walk in a public place, but my wife tells me all the time im just self-consious. i know it feels a lot differrent in the inside than it looks on the outside.. too bad we cant get 3 or 4 of us together, with a camera man. have us sit in a chair for 30 minutes, no flexing muscles while sitting, then have us get up, and have a race up a flight of stairs.. then peple would get the full effect i rekon. thanks for the video Jim.

Type of Myotonia: ??

Country: usa

Thank's Jim. I am lucky when it comes to falling. Some times I do no think I have MC since I have pain but little stiffness. I gues the DNA does not lie.

Again - Thanks for sharing with us. We can now point to your video to help educate people.

Type of Myotonia: Thomsen's

I think we would have to time a race up a flight of stairs with a sundial. But that would be funny and interesting to see how each of us deal with going up stairs.

Type of Myotonia: Thomsens

Country: USA

Lol My brother and I have had races before! Not up a set of stairs but just across the room or something. We still found it hilarious.

Good job on the video Jim.

Type of Myotonia: Thomsen

Country: USA

I think it would be fun to have a myotonia olympics : ) It'd be very commical.

Type of Myotonia: Unknown

Country: FL, USA

Ha, couldn't you just see it? The runners lined up in the starting blocks and the starter fireing the gun and everyone falling over and rolling on their backs.

Type of Myotonia: un-known

Country: USA

I post on the Muscular Dystrophy Campaign's website in the UK and did a short piece on Jim's video; they've put a link to it on their front page!

Here's the address:

http://www.muscular-dystrophy.org/

Type of Myotonia: Becker's

Country: England

Wow Pete. Thank you. I went on the Muscular Dystrophy web-site and their it is on the front page of their site a link to my video.

I have to admit that I almost took the video off of YouTube last week, because I was so nervous about people seeing me move around.

I was talking with a friend of mine about it, and what seems to be at the root of my fear is that I am afraid of people seeing me as odd, because one minute I'm moving fine and then the next minute I'm in constant contraction mode. My fear is that someone will attack me because they see me as odd. For some reason I fear that more than I fear someone attacking me for cutting them off in traffic or being rude to them in the grocery store. I guess if I think about it, there is a much better chance of getting into an altercation because of road rage then because someone thinks your odd.

Anyway, I'll probably keep the video up for a while longer, and I may even open it up to public viewing on YouTube. There's no better way to beat fear then to jump right into it head first.

Type of Myotonia: Thomsen's

Country: USA

Jim - I used to be terrified of people seeing my 'weakness', because I had no explanation for it. I think the thing that makes us fear others seeing us as "odd" is that we DO seem fine and then not fine - it makes no sense until you have a name and biophysical reason for it - then it becomes totally not-PC to think it's odd! So SPREAD THE WORD, and an enlightened public will be a less skeptical or antagonistic one!

Type of Myotonia: MC- Becker's type

Country: USA

I've had 157 views on the video so far. I've sent emails to different neurology groups and thanks to Pete it is on MDA UK. People have suggested video taping a bunch of us with MC sitting down for 30 minutes and then getting up and walking up a flight of stairs. I don't have stairs in my house, but I am going to video tape the sitting and walking bit.

If anyone else wants to video tape themselves doing the same I will post it on YouTube (I can post it public or via link only). And if anyone has any suggestions as to other ways we can videotape ourselves I'd love to hear your suggestions.

Type of Myotonia: Thomsen's

Country: USA

Hi Jim -
FWIW, personally, if I had to sit 1/2 an hour, I'd be completely fidgety if I knew I'd have to get up and "perform", so likely I'd be almost warmed up - or maybe my nerves would make it worse. But I don't think I ever had to "cool down" more than about 5 minutes before my muscles would clamp up on me again. But I can definitely see the humor in a group of MC people all sitting and waiting, then getting up and bumping around, monster-walking, falling, teetering...

Type of Myotonia: Becker's type

Country: USA

I've come up with a concept for another video. This one will be focused on the heartstrings. The title will be "Myotonia Congenita-Now You See It Now You Don't!"

It will start with me standing on a flight of steps. As I walk down the steps I will comment to the camera.

"My name is Jim, and have a muscle condition called Myotonia Congenita. I'm making this video to educate parents and educators on what children with Myotonia Congenita go through on a daily basis.

Imagine you are six years old and walking down the hallway of your school's auditorium. No one notices anything about the way that you are walking, because there isn't anything to notice."

At this point I get to a landing at the bottom of the steps and walk at a regular pace. Then I head back up the stairs.

"Then suddenly the bell rings and everyone in the hallway needs to get back up these stairs, including you."

I start walking up the stairs as fast as I can.

"The only problem is that your muscles are contracting but not relaxing right away so this is the fastest you can go up the steps. Not only do you have 20 angry first graders wondering what is wrong with you, but because your condition is rare, and doctors don't diagnose it well, you have no idea. You are only six. What are you going to tell anyone who asks what was going on?"

I get to the top of the steps and walk back down again quickly. When I get to the bottom of the steps I turn back around again and go up the stairs--this time a little faster.

"This time because your muscles are warmed up, you move a little quicker. Kids in your class ask when you move slowly why you are doing it. Are you trying to get attention? How come you move just fine one moment and then walk like Frankenstein the next moment?"

I reach the end of the steps and turn towards the camera. "This is the everyday life of a six grader with Myotonia Congenita--spread the word so they don't have to go through what I did."

Type of Myotonia: Thomsen's

Country: USA

Jim - I think you did a great job. My entire body contracted and felt exactly what you were feeling as you fell and lay there, wanting to get up, but needing to wait until your body would let you... and also when you were doing the crunches and push ups. I totally related. (although I can't do ANY of it any more...) lois

Type of Myotonia: MC- Becker's type

Country: USA

Thanks Lois.

I tried to get up as fast as I could after I fell just like the goats do. This caused my hands to stiffen, which looks just the goats legs look after they fall.

I would like to follow someone with a camera for a couple of days, just video taping everything they do. This way people would be able to see someone with MC at their stiffest, at their loosest and the way people see them most of the time. This would tell the whole story of what it feels like to have MC, when most of the time people don't notice and then all of a sudden it's like--Big Surprise! People are really shocked by this, because it is so different from what they are expecting.

I think for children, this is something that can take a while to get used to--people's reactions to those moments when you're really stiff.

Hey Pete - Good thinking!

Jim - In my younger days, I might have been a great subject for you to follow. Except that back then, I didn't know what I had, and I spent a LOT of energy hiding it, compensating for it, and avoiding it - since I was told "IT" didn't exist. Now that I am old, fat and slow, I can't get into nearly as much trouble!! I guess that's one positive spin... Lois

Type of Myotonia: MC- Becker's type

Country: USA