... others want to just stay home, away from people when the tremors and dystonia are at their worst? Do others have times when they look "normal", and then the abonormal posturing returns?
These organizations have established support services for individuals with specific movement disorders and their families - they may be able to offer you support.
All the best.
National Spasmodic Torticollis Association
Contact: Justin Aquines
9920 Talbert Avenue
Fountain Valley, CA 92708 USA
TEL: (800) HURTFUL
Web Site: http://www.torticollis.org
Spasmodic Torticollis/Dystonia, Inc.
Contact: Howard Thiel
P.O. Box 28
Mukwonago, WI 53149 USA
TEL: (888) 445-4598
Web Site: http://www.spasmodictorticollis.org
I have generalized Dystonia. I have felt the stares you mention. Having had this for over 4 years now, I can tell when the posturing is coming on so I wind up canceling dinners out or shopping until it settles down again. Though sometimes the posturing does come on unexpectedly and then I just have to tough it out. No one yet has had the nerve to ask me what is wrong when this does happen. If I dont get upset, they dont get upset. If it gets too bad then I just leave. It can be embarrassing but I have learned not to stress to much about it.
I was diagnosed just over 4 years ago. Early on I certainly felt like everyone was staring at me. My neck spasms were classic - pulling my head to left - and were also painful. I don't know exactly why but the day came when I persuaded myself that no one was looking at me. They were just walking to work like I was. I probably looked at them more than they looked at me. Thank goodness I am not nor have I ever been a male runway model. The less I thought about others' reactions, the less severe the symptoms.
yes, i have the same feeling too. the whole world is staring at me. i took botox injection, but no relief from that. The condition is same as before. My right hand is forever on my neck to bring it back to normal position so much so that my hand has started getting pain. Is there any remedy for this condition.
I apologize in advance for the length of this. I have had quarterly Botox injections since 2008. They have provided some relief, blunting some of the worst spasmodic activity and had some positive effect on the pain. Except for continuing Botox and relatively high doses of Artane, my general therapeutic regimen has radically changed since the middle of 2012, focused more on Eastern medicine. I was torn off benzodiapenes (a miserable experience), zero alcohol, introduced intensive daily stretching exercises, meditation with deep breathing, strict sleep time, weekly physical therapy, herbal supplements (boswellia as an anti-inflammatory, vitamin D-3, calcium, magnesium, Omega-3 fish oil) and, miraculously, the sharp relentless pain disappeared in the late fall of 2012. I still have some pretty obnoxious spasms and often find it difficult to get comfortable in a seated position and almost always resort to stabilizing my head with my hand.
I generally switched from glasses to contact lenses because the spasms can knock my glasses around, making me less sure-footed. My main goal right now is to do everything I can to keep my neck muscles from permanently shortening on my left side. There are times when it feels like all of this a full-time job but I feel much more in control and am able to work. As for the embarrassment, I decided to simply explain to people that I have a neurological disorder where the nerves in my neck don't fire properly, causing muscle spasms. I explain that it has nothing to do with my cognitive abilities and try to make a joke or two about it. No one has ever said or done anything negative. Some have said it is courageous to tell the truth without asking for sympathy. I'm not so sure I believe that. I am just trying to live with this without it taking over my entire life. One colleague described his wife's symptoms asking me if it sounded like my condition. It did. I don't know whether she has been evaluated and/or diagnosed but I suppose my colleague will let me know one way or another. The good part about those sorts of exchanges is feeling like I might be of some help to another person. I have to remind myself that this is a real medical problem and nothing I have done in the years leading up to the onset is any cause for feeling embarrassed. Some people are diabetic; some are allergic to nuts; I have a difficult disorder. I am much more than a diagnosis. Period.
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