Cervical Dystonia — Scope | Disability forum
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Cervical Dystonia

Ookpik
Ookpik Member Posts: 102 Courageous
l have this type of disorder which affects my daily life regularly. lt all started when l was 14 years of age. When l felt something very strange just under the base of my brain. Which l did not know not what this was at the time? lt is called the "Basal Ganglia" that controls the movements of the bodies muscles.
As time went by, l started feeling inferior and the left-hand side of my body and neck was stiff. years went by and it progressed into involuntary muscle spasms, which l find hard to control. l also found out mine is genetic. My father had this, but not as bad as mine.
And l wanted to know what the origins were to why l have this terrible disorder. so,l did some research and found it seem to have originated to a certain race of Jewish people 1,000's years ago. Known as the "Astkinazi jews might have spelt it wrong, but it is something like that. They were known as the stiff neck people, because of the way they tilt their heads into distorted positions. My dad had that sort of Jewish nose, and my surname originated in that region, known as "LittleGoat". . l was the only child in the family that had this passed down to me.
 
How certain genes just seems to jump or lay dormant until a later generation starts it up again and takes holds is beyond me how that works. But hey,l got it and learnt to adapt to this to get me through daily life.

Here is a bit l copied from the Dystonia foundations article.
Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures
Dystonia affects people in different ways.
Nature has all the answers. All we have to do is listen, and peace will prevail

Comments

  • Alex_Scope
    Alex_Scope Posts: 796

    Scope community team

    Hi @Ookpik thanks for sharing your experience of Dystonia, I'm sure it'll be helpful for our members. I've moved it into our rare conditions category so it's easier to find.

    It's interesting what you discovered through your research, genes are quite a mystery to me as well. Perhaps I should have paid more attention in science!
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    Scope

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  • deb74
    deb74 Member Posts: 769 Pioneering
    Hi @Ookpik. I have got dystonia as well. It mainly affects my hands but it does sometimes affect other parts of my body. Sometimes it affects how I speak which makes my voice shaky and sound a bit robotic as the muscles in my neck tighten up which makes talking a real effort. It does get very frustrating especially as my co-ordination isn't very good.
  • Ookpik
    Ookpik Member Posts: 102 Courageous
    deb74 said:
    Hi @Ookpik. I have got dystonia as well. It mainly affects my hands but it does sometimes affect other parts of my body. Sometimes it affects how I speak which makes my voice shaky and sound a bit robotic as the muscles in my neck tighten up which makes talking a real effort. It does get very frustrating especially as my co-ordination isn't very good.
    Hi Debs, Thanks for your comment. Dystonia is a terrible disorder in many ways. lt comes in waves where at times some days are better than others, where another day can put a huge strain on certain parts of the body. So, l do know what you are going through. l had this now for 50 years. And what l been through [and still do] is something l just have to live with. in my younger days, l was so ashamed of the way l was. so what l did was, secretly self-medicated to stop the spasm, because many people at that time viewed it as a form of weakness as well as being timid etc. l drank to help myself, so many people bullied me is the reason why l drank alcohol to stop people from bullying me and making fun of me. lt was hard, but as time went on it got a lot worse, and "at last" it is more recognized as a disorder and most of the bullying stopped and finger-pointing etc. That is when l stopped drinking altogether, and haven't touched a drop. l am now getting the proper help l need. 
    l have been referred to DBS{Deep Brain Stimulation} The many doctors that helped me said all the channels l went through did not stop the spasm, so now, the last option is the DBS. lt is a long waiting list. But after 50 years of trauma and suffering, l am sure l can wait a little longer. and hope l can experience some life of joy. Just to feel the enjoyment in public without the spasms kicking off, will be something l will enjoy so much. Cervical dystonia can vary in some people's behaviour, some got it really bad where it affects sleep, walking, talking, writing etc[l got it bad] and some have it mild where it is just a stiff neck without the spasms.[ but can generate into spasms later] lt is a complicated disorder, only for me just to make an educated guess on certain functions
    One thing l have noticed was when l was about 18 years of age. ls, the feeling of something foreign just underneath my brain. lt felt like something should not be there. But as time went by, l learnt to live with that feeling. And after all that time gone by, l always wanted to know what that horrible feeling was. And just last year, l did find out. lt was the "Basal Ganglia" gland that controls the bodies muscles and that is where the problem lies. That gland is exactly underneath the brain. And that is where the DBS will be inserted to stimulate the motor neurons.
    l can go on and on. So much to say .l hope all this helps you what l said. But, all l can say to you is. Don't give up hope, and always look ahead and take one day at a time. Because that day will surely come of joy and confidence in life. Nature helps me. by taking care of the wildlife and growing plants for food and for insects. l love watching the insects feeding off the plants
    Nature has all the answers. All we have to do is listen, and peace will prevail
  • Ookpik
    Ookpik Member Posts: 102 Courageous
    Nature has all the answers. All we have to do is listen, and peace will prevail
  • Ookpik
    Ookpik Member Posts: 102 Courageous
    During my 50 years of this disorder, l have. l have tried natural remedies to receive those natural chemicals in my brain. Yes, it does work, when l was younger for a short period of time and the spasms started again. And when l got older they just got worse and cannot be controlled. When l exercise, l have spasms, and some days are better than others where l can do some gardening and other activities.
    . These chemicals do work for many to make them feel better in themselves. But for some, no matter how hard one tries, the spasms will still remain.
    Here is a chart of those natural chemicals that can be released to help anyone with mental issues. l hope it will help others.

    My last option is now the DBS treatment, which l wanted to avoid. But l have no choice now, and after 50 years of terrible suffering, l do want to enjoy a bit of life in my older years.
    Nature has all the answers. All we have to do is listen, and peace will prevail

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