How do you deal with the emotional struggle that comes with Dystonia?
I am curious as to how you deal with the emotional struggles of Dystonia. Do you feel that you have a strong enough support group to help you deal your emotional struggles. How do you handle it when the people you depend upon the most misunderstand your emotional pain? How has faith helped you deal with your emotions?
Replies to This Discussion
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Permalink Reply by marie on -
elaine-i want to be there for you too.for some reason istopped getting any notices about posts so i got on and ive missed alot.im like you elaine in that the best way to manage my movements.even talking and laughing sets them off.its frustrating because im left with no outlet for expressing myself.im still in your corner elaine.love,marie
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Permalink Reply by Elaine on -
I wanted to write more....but can't get my thoughts out clearly.
The only clear thought I can write today is that I am atheist.
So for me faith or God does not enter into my thinking.
I respect others beliefs and that's not meant to insult anyone.
Elaine
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Permalink Reply by Rosemary on -
Not sure about God either, but not an atheist, more like an agnostic ( Which means: a. One who believes that it is impossible to know whether there is a God b. One who is skeptical about the existence of God but does not profess true atheism.). Again, no disrespect to anyone. Actually admire those of strong religious faith.
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Permalink Reply by beka on -
Well, write anyway- Elaine. I suspect that you are feeling at a loss of what is next.. the next step ??
beka
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Permalink Reply by Elaine on
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This is Beka's fault. LOL
I do feel at a loss as to what the next step is. You are perceptive.
I go to physio twice a week. Right now it's for the (to be dxed) fibro.
The Neuro also sent a letter to the hospital saying I was going for physio for dystonia. But also said it was "psychogenic". And that was pretty much the sum of it all. No instructions as to how they are to give me physio.
So my husband misses hours of work a week to take me. I manage 3 small exercises. By the 3rd I begin to have a movement episode. They are afraid for my safety as well as what might happen with them if they continue to work me. So they end the physio.
So what's the point???
I can do these minimal exercises at home. I have physio again on Tuesday. I plan to have a sit down with the therapist and ask her what is there plan for me.
This is not only my life. This is my husband's and daughter's life too.
I can and am prepared to cope with fibro and dystonia. But I need someone to treat me who knows
what they are doing.
To the support system question....I do not have enough support. My husband is my only support.
And it's not fair to him to carry the burden. The stress shows on him too.
He has health conditions such as diabetes. He has to take care of himself too...but isn't.
Elaine
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Permalink Reply by lisa w on
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find a good support group. I know in some areas this is impossible but that's what the internet is for. I have found several chat rooms for patients and caregivers. Consider yourself blessed to have all the support that you do, try going it alone. I live alone and my girls go to college 70 miles away. Tell them its not their fault. They can never fully understand because it is not happening to them. They will always be on the outside looking. Only someone who has this disorder really understands. To those whose DR. thinks you're crazy or faking FIND a new DR. Mayo Clinic I found is the best. The University of Michigan didn't know what it was early on. With a Mayo diagnosis no one will argue not even the Federal gov.
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Permalink Reply by Elaine on
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I can't go to the Mayo Clinic. I'm Canadian. I can only go if I can pay for it myself, which I can't do.
I could go if the Neuro would recommend it and the Gvt would pay.
He said he won't recommend it. He says he feels I got proper care.
Don't know what proper care is.....a few blood tests. A total of 3 appts.
A total of 6 appts between 3 Neuros.
My GP is the one who ordered a MRI and EEG. Over the phone the Neuro put me on seizure meds.
I was on seizure meds for many months with NO supervision.
This first Neuro literally forgot about me. Then didn't know about movement disorders so sent me to
our movement clinic.
The Neuro at the movement clinic did some blood tests and then said psychogenic. When we disagreed he let me see his partner.
They said they never discussed me. But each said things in which they had to discuss me to be able to repeat to me.
I don't see any point in going to physio anymore. 3 exercises and they stop. No one knows what to do with me. And I don't know what to do.
The local Dystnoia group....meets once a month on a Saturday. I want to go. But have to convince my husband to take me. Because I'm not able to drive and am in a wheel chair.
I'm going to persist that I go the next meeting.
THANKS to everyone for their support and suggestions.
Elaine
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