Putting A Face On Dystonia

If You or someone You know and love have Dystonia there is a New Dystonia Educational Forum on WEGO Health that is moderated by Beka of Care4Dystonia that I highly recommend http://community.wegohealth.com/group/dystonia

Category:

People & Blogs

Tags:

• Dystonia;
• dystonic;
• dystonian;
• spasms;
• Dopamine-responsive
• dystonia;
• Writer's
• cramp;
• Tardive
• facial
• Cervical
• spasmodic
• torticollis;
• Spasmodic
• dysphonia;
• dystonia
• voice;
• Blepharospasm;
• eyes;
• dystonie;
• twisted
• torsion
• toddler;
• children;
• adults;
• distonya;
• pen;
• faces
• of;
• dystonic
• storm;
• primary;
• secondary;
• Twisted;
• coping
• with
• muscles;
• spasms
• sustained;
• botox;
• Oromandibular;
• Laryngeal;
• Cranial;
• Segmental;
• Hemi;
• Multi
• Focal;
• Paroxysma;
• Mycolonus;
• arm;
• hand;
• leg;
• shoulder;
• antidepressants;

[ResilientLilOne]

FYI .... National Geographic will be airing a show about Dystonia called "Muscles" featuring Jason Dunn on June 11th .... please be sure to mark your calenders

[videomemoriesnj]

Thanks for so eloquently personalizing dystonia. Your videos show that the disorder hasn't diminished your inner or outer beauty or your talent. They're beautifully constructed.

I'm involved with dystonia because it affects my daughter, Joanna, who is 36 and I've led a support group for the past nine years. It troubled me to see you say that yours is untreatable. I've seen amazing progress in the past few years. Please see a top movement disorder specialist. There are so many ways to help you.

[ResilientLilOne]

Thank You so much for Your kind words. I am so sorry to hear about daughters dystonia. I've tried all the meds and some more then once over the past 12 years, all of which just bring more dystonia. I actually do very well managing it on my own, with a few life style changes, doing things in moderation, lots of rest, ridding and keeping both stress and stressors out my life allows me to keep fairly well managed. Unfortunetly I live rural and do not have the means to get to a MDC.

[nonsulen]

There is hope, I recovered, there is a way and you can do it. You can get better naturally. I was lucky I found out what to do before it got out of control. I am not sure if what I did will help you recover 100% but you should try. I recovered in under one year. My neck was out of control, my left foot was clubbing, I could not sit, lay or stand, I trembled, I lost my balance, I clinched my jaw till my teeth came loos. I researched I found, it worked. No more botox, no wires in my head

[cathomas3]

What are the symptoms?

Average age of onset and severity are variable. Individuals who experience onset in the foot or leg generally begin to do so by age 9, while those with onset in the arm begin by age 15, on average. If a person has not developed contractures by 30, they are unlikely to do so later in life. Overall, dystonia will spread into the limbs and torso in 60% to 70% of patients. About 11% to 18% of cases will experience dystonia in the cranial muscles

[MindBl0ck]

@MindBl0ck I meant not sure. Also the doctor said it sounded as if i had dystonia but it didn't happen often enough. I only went once to the doctor because i don't have insurance so i couldn't afford to go back.

[MindBl0ck]

Hi i was just wondering how did it start when you got Dystonia. I'm 24 yrs old and did a little looking around about dystonia and focal dystonia. I think i might have it to but now sure because it only happens once in a while, mainly when i sk8. My left hand and foot curl and i feel as if i'm light headed and tend to look up with my eyes. It started when i was in high school probably when i was around 16yrs old.

[seonz66]

It must be quite difficult to listen to people 'bag' you for 'posing'... is that what they said? This is a crippling disease and I think that you are very brave to put this video on youtube... well done for helping other people aware.... God Bless... xx

[shaynapulley]

Your music selection couldn't be more appropriate- it was PERFECT!

I couldn't help but smile when I saw the title :)

[iamacoolkorean]

hi

i have several muscular-related disorders including dystonia and moderate-severe cerebral palsy. so i know what are you going through.

[Chipsrock2]

You go girl...I have 3 forms of dystonia, spasmodic torticollis, retrocollis and lateralcollis all of which involve the head and neck etc. I have had dystonia for 21 years but who is counting. I enjoyed your video. You go girl.

[catsalive1]

Resilient Lil One. I don't know the cause of your dystonia, but please try MAGNESIUM. After valium and soma and 20 years of hell. It worked for me. I want people to know about it. Some people don't absorb magnesium, I take 750 mg a day and my TS is 90% cured.