Tuesday, July 15, 2008

Dystonia.. Please Watch



I was contacted today by a woman asking me to post this public service announcement on my blog. I am more than glad to do it! When I went to You Tube to view it, I came across many clips of people suffering from Dystonia. I wish I had thought to look there during Dystonia Awareness Week and posted about it here on my blog along with my clip.

The clip below moved me to tears. Please watch it in its entirety. I can hide my dystonia by not talking. My heart goes out to those that have no control whatsoever. Please, if you had never heard of Spasmodic Dysphonia or Dystonia before reading my blog, will you please link back to this post? The more people that become aware of this disorder the more hope we have in finding a cure.

16 comments:

Trisha said...

Thank you for posting these videos. Very informational and very moving.

There are times (like today) when I am frustrated with my voice and want to know "WHY ME?" However, I always must remember that my affliction is so minor compaired to so many others.

There but for the grace of God go I.

Junebug said...

Pretty dramatic. I never knew there were so many forms.

jojo said...

Thank you for sharing that. I really didn't know about it at all until I found your site. Very touching ;)

Rick said...

Hey Bean, I gave you a "shout out" on my most recent post.

Mabunny said...

Wow K.J., thanks for posting those videos. I had never heard of that before I read about it on your blog. Those videos opened my eyes even more.
I will link back to y our blog again today incase anyone that readas my blog accidentally skipped the last post where I talked about S.D:))
Have a great day!

claudia said...

Thank you for taking the time to inform me about dystonia. I had never heard of it before coming across your blog.
The videos were very informational and may I say tear jerking. Thank you though!

Brenda said...

Thanks for sharing that. I was going to put the awareness ribbon on my blog but can't find it anywhere on those sites. I'll keep looking.

Elysa said...

Man. I had no idea it could affect more than just the voice...as though that's not tough enough.

Lori said...

My nephew was born with Torticollis and I did not realize it was a form of Dystonia. Thanks for the info here!

Brenda said...

I put a link on my blog thanking you for yesterday's award and also asking them to come and read about Dystonia.

tj said...

...Both of those videos were so moving and so informative. I was not aware of Dystonia until I met you CoffeeBean and thank you for posting this information for us. I know it can't be easy for you to discuss this since this is a personal battle for you but you are certainly spreading awareness and with that hopefully comes a cure...

...Also, thank you for the award! You simply amaze me with your kindness and giving spirit and for that I am grateful! :o)

...Many blessings to you girl...

tj said...

...Just so you know, I gave a lil' shout out to you back at my place...

...Hope you're doing okay!

...Blessings... :o)

Flea said...

Wow. The second video was - very moving. Thank you.

While going through training for my job at the psychiatric hospital, we learned about the effects of psychotropic drugs - the spasmodic dystonia. The video was heart breaking, but life with schizophrenia was even more heartbreaking. Brutal.

Karen Deborah said...

I saw a lot of those on you tube during distonia week. I hada very severe reaction to reglan that caused it. It scared me to death, I wasn't sure if I would ever talk again or stopp drooling for that matter. Ilooked like somebody with cerebral palsy. SCARY firemen rescue and a whole lot of benedryl later it calmed down. I hurt for days. I simply cannot imagine having this happen to you and not be able to stop it. I would go crazy. why doesn't benedryl help? Something is bringing on this vilent reaction. I would look for allergies, drugs, chemical emissions from your home. It seems to m it is a type of anaphalactic allergic reaction. Just think about it.

Chris H said...

"It weighs bugger all" means... it does not weigh much, very little, darn it and all that!

Andrea Hardaway said...

Hi -
I ran into your blog and profile on and just wanted to invite you to sign-up on www.VoiceMatters.net.

It is a new website that I launched a few weeks ago for people who have vocal disorders, their friends/family/supporters, and people who offer medial services.


I think VoiceMatters.net might be a great place for you to get some support, encouragement, and information on various techniques that can assist with your voice. Plus, it woul dbe another way for you to share some of the information you are gathering on SD.

Please check out the site and let me know your thoughts! We'd love to see you there!

http://www.VoiceMatters.net

Blessings to you,
Andrea