How to explain cervical dystonia to someone who is dystonia-free

I assume this could summarize living with cervical dystonia in the real world. One step to either side, you'll find yourself either with a tilted (or twisted or jerking) head embarrassing yourself or in a very unpleasant situation struggling hard to keep your posture. The line you have to walk to play along with the ‘rules’ is, indeed, a bit thin. Putting yourself together and keeping posture is easier to say than actually done. Much fun in a crowded place, I can tell...

Everyone could try this, even if not struck by any movement disorder. But let's stick for a second with cervical dystonia, shall we? Get on a — preferably crowded — train (or somewhere you can't get out easily; recommended: an (express) bus likely to be stuck in a traffic jam), turn your head to one side (your choice) as much as you pass your personal threshold of possible embarrassment. Turn it a bit more (yes!), then a bit more (still, no kidding), and keep it like that. Ride the train for a couple of stations (or stay where whatever location you'd chose).

I am serious, try it! That's what I occasionally tell people how they could feel my experiences. The mere imagination seems to be enough for most, if not all, of them. Again, give it a try! Nothing to lose, except your ‘street rep’... ;-)

The above first appeared here...

Also check out this site.... 

How do others explain dystonia?

" I usually don't even try. For people I run into (literally) on the street, who usually inquire if i have had an auto accident or a fall, I just reply in the affirmative and say Thanks and I've got an appointment scheduled for tomorrow. (I occ. wear a soft collar---the "gate theory", and emotional crutch--and this suggests the accident interpretation)(no mechanical support--my chin cold crush a brick).
For those with whom I'd like to go into more detail, I just say that some chemicals in my brain are deficient in some areas which leads to some uncontrolled muscle movements; that some people get relief from various medications, and that it is quite painful at times. New meds arrive from time to time but nothing spectacular, and at my age i'll probably have it till I die. People either coddle me or are afraid I'm going to fall on top of them, but they get out of my way once I board the bus and lunge down the aisle. They are concerned that there's something wrong with my back and I have to tell them that usually I have no problems lifing using my lower back muscles; however turning with the object is a different thing as when I look to my right or left I basically have to pivot from my pelvis and move my feet. But for most people the auto acky works the best"

and...

" I say I get spastic and do a demo.
I say I take meds for Parkinsons disease and muscle relaxants (so they know its serious)
I say its rare (so they don't feel like eejits for not having heard of it)
I say I might sit or move funny.... (so they can stare)
I sent clips from you tube to close friends
I add support groups and dystonia stuff to my websites and facebook to raise awareness
Most people will never understand it but they understand its a part of me and it's alot for me to deal with.
Otherwise I don't really talk about it
Strangers stare, friends are used to me gimping about, its part of me and my personality. Personally I fight dystonia, it's not going to make me depressed and its not going to beat me....... "

These and other comments are here...

Explaining dystonia to a child

How can dystonia be explained to a child? Maybe you are the parent and you have dystonia. How can you explain your dystonia to your children? Maybe your child has dystonia - how can you explain about dystonia to someone who is young.

It's difficult - here are some ideas.

The obvious first one - show them this film clip below and then discuss it. The clip is a series of interviews with children who have dystonia:

Perhaps show clips about specific individuals:

But, a warning.

Let's say your child has a MILD case of dystonia - knowing others have it may be reassuring BUT seeing someone with a worse case than yourself may seem like a glimpse into the future for the child. This may create stress etc - so be choosy about what you show.

This is how someone else did the explaining:

"In 2009, it decided to move in. I realized at that point that I was going to need to introduce it to my family.Children, Mommy has Dystonia. It makes me hurt, and makes it hard for me to use my arm and walk. By March, the word had been said so much it was as if it had always been a part of our lives, and my children began to focus their anger and disappointment on it rather than me.

“Mommy can we go to the park?”

"No, sweety, I ....”

“Have Dystonia??? Ugh I hate your stupid Dystonia!!”

It was as if Dystonia became an invisible person, always preventing fun in our house, and just being an overall Grinch.

Halfway through the year, my children and I became fed up with this unwelcome house guest. We decided to let it know how unwelcome it actually was by ignoring it. We devised a plan of never saying its name in the hopes that it would go away.

At first it seemed silly. My daughter would start the day by asking me how I was feeling. If I answered fine, she’d follow with: “…and how is your Dystonia?”

I quickly cut her off, giving her a disappointing look.

“We don’t say that word in this house any more. It’s a bad word.”

Thinking I was joking, she looked at me confused.

“Then what should we call it?” she asked.

I didn’t know what to tell her. What do you call Dystonia: A huge pain in the butt? Annoyance? A neurological condition? Muscle spasms?

As I drifted off, thinking of all the possible names for Dystonia, my daughter’s eyes lit up.

“I know! We’ll call it the D word!!”

Read more here....

Maybe dystonia can be explained with photographs?

There is an excellent display here - or perhaps you could make your own? In which case, go here....

Perhaps listen to a podcast such as the one here.... or look in on Shakey Amey's channel here....

(Again, warning: watch all the videos first BEFORE showing them to children...they are not always uplifting!)

What else can be done?

As Beka says here, it is important we educate our kids....she writes:

"One way for people with dystonia to feel less anxious is to educate others about it. They can empower themselves by becoming an expert in the illness. When they share information with family members, friends, fellow students and co-workers, everyone benefits and becomes more understanding about what it's like to live with dystonia.

Parents can help an dystonia child avoid embarrassment by asking the school teacher and/or counselor to support and encourage the child. Having a school nurse, teacher or outside educator talk to the students in the class about dystonia can also be quite helpful. The more informed the children are about the illness, the less likely they will be to tease a child with dystonia."

What else?

Well there is a Dystonia Guidebook for kids:

-Dystonia Guidebook for Kids

This is a great booklet for kids that will help you:

1. Understand dystonia

2. Explain dystonia to other people

3. Learn to take good care of your body

4. Enjoy your family

5. Succeed in school

6. Discover fun activities and hobbies

7. See a bright future for yourself

-I Will Gallop Instead of Run, I Will Type Instead of Write: Young People Living with Dystonia

This special book will introduce you to 11 kids and teenagers who have dystonia. They share photos and stories about how they succeed at life.

These can be purchased from here....

Here is some advice kids with dystonia have for others kids like them:

• Try not to get stressed out because that makes the dystonia worse. Keep a positive and up-beat attitude. Never stop fighting or else you've let dystonia get the best of you.
• Try to do your best.
• Remember we are not different from other kids.
• Treat other people nice and take a break when you get tired.
• Stay strong and never care about what people who don't care about you think. Stay active.
• It's ok to ask for help. Sometimes it makes life much easier and enjoyable.
• Make sure to tell people how you're feeling and what's bothering you. Maybe they can help.
• Do not give up!
• Get involved in a competitive physical activity and don't let the disorder become enmeshed with your personality.
• Write down your life goals and try as hard as you can to achieve them. If your goals aren't realistic for you at this time, make a list of new ones that you can achieve and go back to the other goals when you are able to achieve them.
• Life goes on with or without dystonia. Do what everybody else does.
• Never give up. Always believe in yourself. Have a positive attitude.
• Learn to do the best you can. Always focus on what you can do, not what you can't do. Don't let dystonia rob you of your childhood and your future goals.
• Don't let your dystonia get you down. Just because you have dystonia doesn't mean you can't do what you want. Don't let people tell you that you can't do something because you have dystonia. Prove them wrong and show them you are capable of anything you put your heart into.
• Think positive and don't feel sorry for yourself.
• If your family doesn't treat you like the rest of the household, ask them to do so.
• Be like a palm tree. When the winds blow, lean with it, and when it stops, straighten back up.

Also, of course, make kids aware of sites by kids helping other kids with dystonia - such as this one....