Oops sorry. I just read this post. Disregard what I just posted in my previous post (copied below) about emailing me or Jan or posting on the site. The information on the format of the post is suggested below although not required.

Thank you Jan for setting up this other site.

Previous Post--

I also like the idea of everyone posting their stories and anecdotes on this forum. I agree it might be fun. Of course if anyone felt uncomfortable posting on here they could email me or Jan--since noone really knows me and Jan is a proven trustworthy source.

My suggestion is to think of your life with MC as a movie. In storytelling you want to be as clear and concise as you can--and always leave a little out to keep people guessing. Alfred Hitchcock once said
"what is drama, after all, but life with the dull bits cut out." So figure out what the overall theme of your life is, for example:

Did you live in denial until something happened
that made it impossible for you to deny who you
were anymore. The tagline would read--An actor
living in shame with a muscle disease he has always
disguised must face the world after his ex-wife
reveals his secret to the press.

Or was it the opposite that you grew up in an
accepting but sheltered family who home schooled
you, and you had to face a different reality when
you went to highschool. A disabled girl who was
homeschooled must face the reality of highschool
where everyone is "not so nice."

I don't mean to offend anyone by using the words disability and disease but these words get to the point and make the idea clear to the general audience reader.

The reason I suggested posting stories on the website is to save space on the forum, save reformatting and copying if I change the forum host in the future, and to allow for photographs.

The website stories can cover a lot of ground, while a documentary would focus more on a single experience or event in your life to help people empathize. Since each of us will have different goals, themes, or visions for our lives, seeing similar experiences from different viewpoints helps give a broader understanding.

Here are a few ideas when you're writing up your stories:

First memory of myotonia

How you were diagnosed

Reactions of family

Treatment by peers, teachers and coaches

Most embarrassing moment

Funniest moment

How you "hide" the myotonia

What makes you better/worse

How it has affected your career plans

How it affects your daily activities

Helpful medications/treatments

Please keep in mind that I make the site family-friendly, so please no references to alcohol, illegal drugs, sex, etc.

Thanks -

Jan

Hi - I tried the web site address for the "stories", but it says it doesn't exist. Jan, were you speaking of a site you will be creating at some future point? thanks - lois

Lois, I'll set up the page as soon as I get some stories to post. I'm still planning to do a major overhaul to update the whole site but that will have to wait another month or so.

I'll probably have a list on the main story page with a thumbnail photo and link with a brief description (i.e. "Nurse with Becker's Myotonia from San Diego area" or something similar) which will open a new page for each person. I won't paste any e-mail addresses or contact information on the pages to avoid spam and protect privacy.

Jan

hi i am 41yrs old suffering from MC initially i was confused about MC later i learned to live took life as it came ,my elder sister her two daughters were also having symptoms of mc please let me know about new drugs for treatment of the same ,because we are yet to try any medication ,we try to keep fit with basic exerscise as MC requires for daytoday life ,ours is a very conservative family living jointly, all the neurologists we have come across had given us conflicting assurances,do guide or share your experiences with us , for our wellbeing.

Type of Myotonia: ,4

Glad you found the forum...if you start back at the original posts and read your way through you'll learn a tremendous amount about living with this condition including medications, diet, exercise, etc.

Please feel free to start a new post to ask specific questions - we're all ready to help any way we can.

Jan

We now have three stories up at the MC Website. If any of you would like to include pictures with your stories just e-mail them as an attachment along with the text.

Jan