Spasmodic Dysphonia Bulletin Board

Neck Pain, along with the SD
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Posted by: possitiveJ ® 01/11/2007, 09:40:14

Hello everyone, I have been on a roller coaster ride like so many of you! I have been dealing with the SD since last Easter. I have a wonderful neurologist that keeps track of my progress. I have found that my SD is brought on by enviromental stimulation and I must have proper sleep. When I was first realized I had SD I tried speech therapy. Looking back, she gave me some great tips, my neurologist has given me some helpful tips also. Use a soft voice and do not force. Use eye to eye contact. You are more likely to speak in a normal voice if you have contact. This has helped, I hope it is helpful for all of you! My choice was not to have Botox. I have a leison on my brainstem, myocolonus I had multiple shots in my facial and eye area. They did not work, it was painful and I was going to do everything in my power to keep a possitive point of view and learn. I have experienced a very sore neck, this has also been going on for a long period of time (Easter) All the DRS. Throat specialist, Primary Care, and Neurologist have said that my trapezias muscle that goes into my shoulder is in a knot. I am now going for physical therapy. Is this one of the first signs of spasmodic torticollis? Will ps help or hurt it? What is your opition? Should I get a second opition? If you folks have any suggestions, help I would love to hear from you! Thanks so much for reading this long winded posting! Jen

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Re: Neck Pain, along with the SD Re: Neck Pain, along with the SD -- possitiveJ Top of thread Archive Posted by: jwillford ® 01/11/2007, 13:12:03 A couple of things that I've found that trigger more severe SD symptoms are sugar and caffeine. I use very little of either and have found that helps. As to the tight muscle, I have had problems with that and have talked with others too who feel it is due to tensing up under the stress of trying to communicate. I tense up way too much! I have found that therapeutic massage has been very helpful. I too have tried many different doctors, therapies, etc. and am open to try anything that may prove to be of help. Seems like I pick up at least one clue from each, so I just file them away in my mind and try to remember to use them! Stay positive! While SD is life altering, in the great scheme of life it's just a small inconvenience compared to what many others deal with everyday. Good luck! | Recommend | Alert Where am I? Original message Top of thread Current page Re: Neck Pain, along with the SD Re: Re: Neck Pain, along with the SD -- jwillford Top of thread Archive Posted by: The Godfather ® 01/11/2007, 14:42:29 I also have had neck tension and or "stiff neck" problems over the years, and still do. I went to a chiropractor for a while which helped for a day or two, but the tension always returned. I agree with you, I think with the SD I'd tend to "tense up" trying to communicate, especially on the phone. I would catch myself looking like a frozen zombie! I've noticed now with the Botox I am so much more at ease when speaking, so hopefully I'll learn to relax my neck and shoulders. A nice big Hot Tub would sure help too! | Recommend | Alert Where am I? Original message Top of thread Current page Re: Neck Pain, along with the SD Re: Neck Pain, along with the SD -- possitiveJ Top of thread Archive Posted by: Laurie ® 01/11/2007, 13:14:05 Hi, Jen - welcome to the NSDA bulletin board. Sorry to hear of the problems you are experiencing. You might want to also post your request to the main DMRF dystonia bulletin board - the url is http://www.dystonia-bb.org/forums/asd/ There is also a link at the bottom of this bulletin board to "Dystonia BB" that will take you there. You'll probably get more responses on that board (which covers dystonia generally) regarding your shoulder/neck issues and/or physical therapy questions than this board which focuses mainly on SD = spasmodic dysphonia which is one form of focal dystonia. SD is laryngeal dystonia and affects the voice. Of course, you can find support and information regarding your voice issues right here. Good luck in your search for answers. Laurie | Recommend | Alert Where am I? Original message Top of thread Current page Re: Neck Pain, along with the SD Re: Re: Neck Pain, along with the SD -- Laurie Top of thread Archive Posted by: possitiveJ ® 01/11/2007, 18:13:25 I want to thank everyone for there responses! I really appreciate you all taking the time to read and reply! You are all very kind! Jen | Recommend | Alert Where am I? Original message Top of thread Current page