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Old 01-30-2008, 12:02 AM
spitball spitball is offline
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Default How to cope with family members coping with living together

Hi Everyone, Today I learned the parent I live with (we also have a dog) is finds it hard sometimes to live with the movements I have. Recently I have been barking like a dog and it sounds like a real dog is barking. My toes move back and forth uncontrolably. Mostly it is the uncontrollable movement of my head from side to side. I know there is no cure, as does my parent. Other than counseling, does anyone have suggestions please? I am thankful to ask others who are coping with the same issues. Thanks much!
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Old 01-30-2008, 02:38 PM
Buttons2 Buttons2 is offline
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Hi Spitball,can you be more specific about what is bothering your parent(s)? Perhaps they feel helpless when they see this happening to you & just don't know how to react? No parent wants to see their child suffer!

Are there any support groups available in your area?

I'm not familiar with dystonia,however I have suffered from myoclonic jerking for past several years. I know I scared my PCP,I'll never forget the look of horror on her face when I was jerking from head to toe. And the few people that witnessed these jerks were so shocked & appalled they just wanted to run from me! I wasn't in pain when this happens so I just keep saying I was OK,not to freak out on me please!

Good luck & hope the family dog is a comfort to you. Buttons
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Old 01-30-2008, 03:16 PM
mpalmer118 mpalmer118 is offline
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As a parent of a child with dystonia, it is very hard to watch the uncontrolled movements. Not because it is embarassing or anything, but because my first instinct is to fix it, or help, even though I know I can't. The person that you are living with is probably feeling the same conflicting things, they want desperately to help, but know that they aren't able. I try very hard for my daughters sake to just acknowledge what is happening and then let it go. Sometimes it is harder than others.

Is there anything that they could do when you are having episodes that would help or make you more comfortable? If so share that information with them.
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Old 01-30-2008, 10:55 PM
spitball spitball is offline
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Default Follow up

Hi and thank you for taking the time to read my post and reply. Today my Mom and I talked (my Dad is deceased) and the frustration is caused by not being able to help me-just like you said! One thing I find that helps me is to listen to my iPod. I use the old style headphones to prevent any possible hearing damage, don't blast it to the max, and it takes you to another place. Great for grocery shopping to pass the time too. Thanks again and have a great night. I can't thank you enough for answering. I have noted people can have frank reactions to movements. One lady in a Doctor's office looked at me like my head was going to pop off and land near her. I laughed so hard! It is like I told a child once-it's better to sit by someone with a movement disorder than someone with a cold-at least you can't catch it. Puts it in perspective. Have a great night!
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Old 01-31-2008, 12:14 PM
mpalmer118 mpalmer118 is offline
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I am glad to hear you talked it out. It is usually the best solution. If your ipod helps, maybe you could enlist your mom's help in choosing the best music or something like that. It might help her feel better if she has a job, if that makes sense.

I meant to ask before, you mentioned barking, do you have tourette's also, or is it a vocal dystonia that causes that? My daughter sometimes has a vocal spasm that causes her voice to sound very choppy.
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Old 01-31-2008, 04:13 PM
Buttons2 Buttons2 is offline
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I just want to add that having a sense of humor helps. I referred to myself as a jack-in-the-box. I think it actually bothered me more to see how other people reacted than the jerking itself.

Also glad you talked with your mother. And I like your attitude,you're right it's not catching! I've said that same thing myself......

How does the dog react when you bark? I've never encountered anyone barking,but have been around a guy that chirped like a bird,I just waited patiently until he was able to get a word out......had I not been afflicted with the myoclonus my reaction might have been different. We all learn alot about ourselves don't we?

Good luck,Buttons
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Old 02-02-2008, 01:17 AM
spitball spitball is offline
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Default Hi- Tardive Dyskensia

Hi- I like the Jack in the Box statement. The Neurologists ruled out Tourette's. Our dog, Molly, does not do anything when I bark. Unless it is a new movement, or sound, Molly just handles it like a pro. The new noise was a sheep. I stumbled upon Tardive Dyskensia and the symptoms include vocal noises as well as movements. I used to treat for seizures, and anti-convulsants are used to treat Tardive D(not sure of the spelling). Perhaps if it is Tardive D, the symptoms were masked by the seizure medicines. Why be ordinary when you can be extraordinary? Two disorders for the price of one! Have a great weekend!
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