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TOPIC: Working with CervicalDystonia

Working with CervicalDystonia 1 year 3 months ago #4042

  • Richards
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Hello all. I'm fairly newly diagnosed, about 5 months but do not have my first neurology appointment until next week. I've been totally unable to work as the condition came on rapidly and viciously !! I'm signed off until Christmas by which time I will only have had one injection so I'm not hopeful of a January return to work. I'm a Head of Music in a school so as you can imagine this has devastated my normal work...not a hope. The pulling is constant and painful with no respite...how do you hold down a job in this state? I'm certainly not hopeful of keeping this particular one which relies on me being able to keep my head looking forward and play the piano. Do many of you manage to work?? I've also lost my driving licence now so actually getting to work relies on public transport or the school bus !
Last Edit: 1 year 3 months ago by Richards.
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Working with CervicalDystonia 1 year 3 months ago #4045

  • Anke
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Have you tried a soft cervical collar? Prior to my DBS I wore one whenever I had to be up and about and it helped, especially when I pulled it forward away from me as that would put pressure on the back of my muscles and relieved the pulling somewhat. As these type of collars are not rigid they will not weaken the muscles, just (for some people) help when going about the day ...
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Working with CervicalDystonia 1 year 3 months ago #4052

Hello,
might I suggest researching the effects of sensory mismatch processing often affecting the superior collicular retinotopic and somatosensory mapping grids contribulting to sensory error and eventual reflexogenic motor modulation error. Because the pathways are reflexogenic cortically activating directly the muscles involved, though they may provide some relief, therapy would be much better served addressing the sensory errors. DBS although effective at times can often be misleading. such that the stimulation does not induce brain activity but rather deactivates via electrical impulses. depending on the area of the basal ganglia involved associated with your dystonia, straitum, (caudate/putamen) pallidum, subthalamic, etc.. therapuetic modalities can potentially be introduced to improve your sensory grid system thereby improving position sensory awareness, thereby improving motor execution, modulation and tone. Research the work by the Carrick Institute out of Florida, they are doing work with Harvard, and Cambridge in areas of neurology related to these areas of brain. hope this helps.
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