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TOPIC: Neck wear (scarfes)

Neck wear (scarfes) 1 year 11 months ago #3825

  • Paul
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I have the classic symptoms of cervical dystonia with my head pulling strongly to the right and a head tremour.
I have made a number of observations regarding my condition during the last few months. For instance sometimes my head just refuses to turn back from a far right position. The only way I can get it to move is by placing both of my hands behind my head.
Another aid is to wear a scarf. Easy at this time of the year. I wrap the scarf tightly around my neck. It helps to stabilise things a little but I still struggle.
Also if I am carrying anything heavy it makes things worse with my head pulling right and tilting to the left. Visits to the gym are now impossible as I am petrified that someone will notice my head on one side as excercising aggravates it.
I resent and hate dystonia with a passion. It has robbed me of my confidence at a point in my life when as I approach 50 I was just starting to relax after a life of stress and hard work.
I feel like I'm done and all that I enjoy is dissapearing slipping out of my life.
The only time I escape dystonia is when I am lying in bed.
Last Edit: 1 year 11 months ago by Paul. Reason: Spelling.
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Neck wear (scarfes) 1 year 11 months ago #3826

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I also find wearing a scarf very he;pful with my neck dystonia. I have a selection from thick to thin according to my need at the time.
I can't carry things comfortably in a hand as it makes my head turn. I have overcome that problem by always using a day pack on my back instead.
Linda
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Neck wear (scarfes) 1 year 11 months ago #3829

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Thank you for your reply Linda.
It's good to know that a scarf helps you manage your dystonia.
Don't you think that it is odd that if one is carrying a heavy item ones head pulls to the side more.
As a part of my work I deliver heavy goods. This is becoming more of a problem as I try to hide this from customers but they are starting to notice my head locked to my right when I carry an item. It's like I just cannot move my head to a central position.
I loathe dystonia. My mum has suffered from it for twenty years and I am sure I have inherited it from her. But mum says it isn't dystonia and that she has a spinal issue. Now I have given her all my dystonia leaflets she agrees that she has dystonia.
Thanks again and good luck.
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Neck wear (scarfes) 1 year 11 months ago #3831

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I was diagnosed in my late 50's, I'm now 71. I was offered Botox and am so grateful how well it has worked for me. Though it was quite a slow process to begin with, as my muscle structure had become so unbalanced. By learning from others on Forums, and reading up as much as I could about neurological processes, I gradually put together my own management package.
Right at the start I asked to see a neurological physiotherapist at the neurology unit I attend. She was amazing and at each visit taught my husband how to get deep into my knotted and contracted back and neck muscles and to disperse the trigger points. His elbow works magic on me as and when and instantly I need it and I feel the trigger points "go" and everything has improved by next day.
I had sessions with an Alexander Technique Teacher - wow! She said she'd never seen any one release and stretch and literally grow taller, as I did. Then I moved onto Shiatsu which is like acupuncture without any needles, just pressure on the points.
I also use a gym ball at home. I lie on my back over it, stretch right out and using hands behind my head, lift my head up. Any displacement of spine and neck discs click and the relief is instant.
Eye tracking exercises were essential, as my eye muscles had become so mis-aligned by my head having been turned for so long.
I had never ever taken supplements before. I worked out for me that zinc, and magnesium with the B vitamins were to play a big part in my management. And GABA that I get sent from the USA by my son out there.
Most of the time I now forget I have dystonia. My botox and my own management package gives me a good quality of life for most of my 13 week cycle.
Linda
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Neck wear (scarfes) 1 year 11 months ago #3832

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Thank you Linda.
You are an inspiration as you have battled through this terrible condition through amazing levels of self help. Your tips were invaluable and I will use then myself.
I wish you the best of luck for the future.
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