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Re: Most popular posts ever

From looking at these posts, it seems the most popular is the greeting from Lois, which contains her personal story. People are very interested in hearing the stories of others with MC.

Next is the what do you do and where are you from, which tells me that many people want to get in touch with others who have MC--it can get lonely out there.
Perhaps we should schedule a meeting in like a year from now. It will give people time to plan and save up money.

Of the remaining posts, three are about drugs, two are about body ailments, one about testing children and one is a diagnosis question.

The last one I found to be particularly touching. It was written just a month after Jan started the web-site. A young man is on the site trying to find out what is going on with his brother.

Please Help

Hey guys... I have a question and really no good answers. I have looked up this on the Internet, but none of the case have hit to a similiar degree as what my brother has. My brother is in eight grade and he has some form of it. When he runs track or plays baseball it is the worst.
I will give you and example of what he has. When he lines up in the blocks (starting gate)in track. He will sit there and he gets stiff and cannot release out of the blocks normally. (Its like he freezes). This is the same thing that happens in baseball. When playing shortstop the ball will roll toward him put since he was not moving his body stiffens up and he will literally fall on his face; same as track...
He does not have trouble eating like in some cases, its mostly in the legs and arms.

I personally do not have it, but I am very concerned about my brother. He is a very good athlete and I hate to see him not be able to participate because of this.

I was wondering if someone could help us out. If you have any ideas I would truly appreciate it if you would reply. If there are any meds that he can take to help with the situation that would be great to know.

Thanks for everything

Re: Most popular posts ever

Jan - Was Curtis able to help his brother as a result of his post here 3 years ago?
I think everyone really likes to share their stories, and to hear others'. I think you're right that it is amazingly comforting and buoying to hear other people say exactly the same things as you have said, and gotten weird looks for - it validates us, which is really healthy for our mental and emotional health! Maybe I'm prejudiced, but I think this is especially important for those of us who were ridiculed or dismissed in our youth, so spent much or most of our lives not knowing what to think about ourselves. To have this group, once I received a late-in-life diagnosis, was like finding family I never knew I had, who actually understood and empathized, and who instinctively cared about me without even knowing me! How cool is that!?! Doesn't get much cooler! : )

Re: Most popular posts ever

Lois wrote:

(To have this group, once I received a late-in-life diagnosis, was like finding family I never knew I had, who actually understood and empathized, and who instinctively cared about me without even knowing me! How cool is that!?! Doesn't get much cooler! : )

I really respond to what you wrote here Lois. When I first found the site, I didn't feel the connection with everyone on here. I thought, "Okay these people have MC, so we have something in common, but they will probably think I'm weird." But then when people started to say that they had the same experiences as me (ie feeling weird) and that they reacted to things the same way I did (ie, acting weird to distract people from knowing that they had MC) the defensive wall I've put up all of my life started to come down. I realized how much shame I have had about acting strange to cover up the MC and how angry I have been at the world, because I felt like others made me do it.

I don't know if I can put this into words, but things have always felt a little chaotic in my life. Most of the time, I have felt like I live on this little island by myself and there is noone else in the world who goes through what I go through. I would look at other people and think, they are all so typical--they all act like a bunch of lemmings. I used to tell myself that I am so different than everyone else--so unique. And I took a lot of pride in this fact.

But when I found out that many people with this disability have reacted in the same way that I have, the universe now seems to have a little bit more order to it. I feel a little bit more grounded. I am beginning to understand those without MC a little more. Maybe they act the same way because life and society act on them with the same forces that they do a lot of other people? Maybe they are not all just a bunch of mindless lemmings?

Its hard for me to let go of that, especially in our society that is so image conscious. But I think everyone who has shared their stories has helped me let go of my grudge a little bit. Thank you.

Re: Most popular posts ever

I see you melting. I, too, had so many barriers and defenses and excuses. I don't think I realized how many, or how complex, because I was just so used to being that way! This is a very non-threatening and open place, kind and forgiving and non-judgmental, to kind of sort out which parts of one are truly just elitist snobs, and which parts are attitudes developed to keep the nosy and critical away. OK - so I'm a stinker. But you know what I mean! ;-p Lois

Re: Re: Most popular posts ever

Thanks, Lois and Jim, for being so transparent. I have had the same feelings--Wow! There are other people like me! I have always acted "weird" or "goofy" and definitely "over-the-top" with self-debasing humor! After reading Jim's reply, I can see that I have used many defenses over the years. At times, I have told people about my MC, especially if I was having noticeable problems with stiffness, But they don't have any understanding of the disease. Many people still think I have fibromyalgia. Sometimes I want to get a t-shirt the says "MYOTONIA CONGENITA" across the top with a brief definition, then in bold letters at the bottom have "I AM NOT LAZY OR OLD, I JUST WALK LIKE A WOODED SOLDIER SOMETIMES! Then maybe included this web address for more information! HA! Actually, business cards to hand out would be better! I do have to share a "funny" story that happened yesterday! As I was leaving church, I pushed the door open with my left arm to go outside, and my arm stayed in the "stuck straight out" position. I turned to walk to the right, not realizing my arm was still sticking out, and hit a lady as she was walking in the door! She said, "excuse me," thinking she had run into me! So . . .I didn't have to make any excuses! I just had a good "internal laugh" and thanked God for getting me out of that one!
Have a great day! Thanks for being a blessing and "healing balm" in my life!
Jill

Re: Re: Re: Most popular posts ever

Hey. Where can i buy one of those t-shirts. I would be the first in line.

Re: Re: Re: Most popular posts ever

Hi everyone, Jill your story made me laugh,i too have accidently smacked people in the face with an arm which had a mind of it's own,or at least it looked that way to it's horrified owner...maybe we should all have public liability insurance or maybe that tee-shirt with a disclaimer on...my internet has been down at home looks like i have missed loads,. I am slowley learning to speak German,getting back to my stiff little roots.maybe you can help Lois,do you speak German well? aufedersehen . Haben Sie alles einen gut tag. maybe i should check the book.

Re: Most popular posts ever

OK - Now we have Myotonia Congenita: The Movie, "The Myotonia Congenita Chicken Soup for the Muscles Humor Book", the All Comics Falling comedy show, and now, the T-shirt... what are we missing - and who will volunteer? This could be the next great fad!! Oh wait - I KNOW!!! Willie Nelson, Michael Jackson and all, doing a MC Aid concert!! lois

Re: Most popular posts ever

Hi all - I think the T-shirt should say "One of Frankenstein's cousins" on the front, and "The Myotonia Gang" on the back - or something like that! (or do we already have a design?)

Barb - Ich spreche Deutsches, wie ich Ballett tanze! Sehr schlecht. Aber ist "auf wieder sehen". Guttes Gluck in Ihren Studien! Ich bewundere Sie. lois