Posted by: Mary Bifaro ®
04/08/2008, 15:08:54
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Dear "TMK",I'm sorry that you felt that you couldn't talk about specific SD struggles at the recent dystonia support group meeting that you attended. Each of us has unique reactions to support groups and their meetings. I can tell you first-hand that the NSDA support leadership volunteers do their best to make sure that support is there when it is needed. Regarding your comment on fearing that SD will progress into another dystonia, I'm going to quote you from the new book on living with SD. It is called "Easier Done Than Said: Living With A Broken Voice". It says on Page 11 that "people have described their symptoms as worsening over an approximate 18-month period and then remaining stable in severity from that point onward". Hope this helps. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Kelly Jean ®
04/08/2008, 19:25:34
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I've also been fearful of developing other dystonias. Several times I've had one of my nostrils twitch... sort of like when you get a spasm in your eye lid. I could visibly see it when I looked in the mirror. It has not happened again for a long time but I think about it sometimes.I visited the dystonia board a few times but had to stop. I feel so bad for the people dealing with that, especially the visible things they cannot hide. At least with SD I can choose not to talk if I want.
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Posted by: Mary Salisbury ®
04/08/2008, 21:01:23
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When I was first diagnosed with SD a few years ago, there was quite a bit of discussion on this bulletin board about SD and the development of other dystonias. If I remember correctly, the consensus of opinion was that MOST people with SD never develop other dystonias. However, I believe it was said, that people who are first diagnosed with OTHER dystonias, sometimes go on to develop SD or other additional dystonias. (In my own experience, I personally know 5 other people with SD and none of them have other dystonias.) Can someone with more knowledge on this subject (perhaps one ofthe moderators or volunteers who was diagnosed many years ago years and has followed the bulletin board for a long time) shed some reliable light/info on TMK's inquiry and fears? (TMK is the one who posted the original message in this thread.) (Perhaps you could also search the archives under something like "SD and the development of other dystonias.") I also remember going to the general dystonia bulletin board when I was first diagnosed, and kind of freaking out with worry that my dystonia might spread to other parts of my body. After reading what people with other dystonias faced, I felt almost blessed to just have SD! So, I can imagine why it was hard for you to go to that support group. In general though, I think support groups are a really good idea, but it is unfortunate that there aren't more people there who have SD "only." Mary Salisbury
AB/AD SD
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Posted by: TMK ®
04/08/2008, 21:10:38
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Thank you for everyone who replied to my post! I just had to let someone know what I was feeling and I know that here I am among others who understand and care!Mary Bif.- I am encouraged by the quote from the book. I have only been diagnosed for 14 months but know that I had SD before that so maybe I am in the clear? Kelly Jean- Thank you for being so supportive - I am having fun talking to you on my blog! Mary - I am glad to hear that someone else shares my feelings. I am already freaked out enough about having SD - thought I have my moments of acceptance - that thinking about the possibility of getting worse was a bit much to handle! TMK
ABSD
Dallas
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Posted by: lillygirl72 ®
04/09/2008, 14:40:45
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TMK, Let me start by saying that I am new to this board as well. I have been posting & reading for about 2 or 3 weeks. I was officially diagnosed w/ dystonia in 2003. Although, I have had some symptoms since elementary school. I have dicussed some of my issues in other posts & don't want to bore everyone who reads on a daily basis, but I will try to discuss it enough to fill you in. That was the only diagnosis I was given, "dystonia." For the most part, after that most of what I learned was from the internet. I started having voice issues in about the 4th grade & writers cramp maybe even before that- My teachers always said I didn't hold my pen right & writing has always been kind of a struggle. As time went on, I developed new issues w/my speech. I have SD and oromandibular dystonia, which causes problems when I form the words. Over time the issues I have have progressed, & I have developed some new ones. Other than the 2 problems with my speach, everything is pretty minimal, or sporatic( I have one thing that only happens when I am really stessed out-my head wants to turn to the right. But I just prop my chin & lean in on my elbow & no one ever notices). But I don't have anything painful or debitating. When I was 1st diagnosed, I went to one of the forums-It must have been the general dystonia one. It REALLY freaked me out too, so don't feel bad. I only went there a couple of times & felt so depressed I didn't go back. A couple of weeks ago, my husband said "I don't know why you never go on any of those discussion boards" & that is when started reading this one. And, I have to say, I am hooked!!! I look forward to reading it everyday.(Does that make me a nerd?LOL) It is nice to know that there are people out there who understand what I am dealing with, who can vent, but are not always negative. The post on the SD under 30 thread from Magistramarla was very inspiring to me(thanks, Marla if you read this). Anyway, don't worry about what might happen down the road. I lead a normal life, & you probobly would too.
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Posted by: hoarse whisperer ®
04/12/2008, 01:24:59
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TMK,I feel the same way you do about the recent support group meeting. I’m glad we were able to discuss some of these issues at the meeting and get feedback from others who were there. My impression was that most people felt the same way. There’s obviously been a lot of time and energy put into the current group, and I certainly don’t want to hurt anyone’s feelings or step on anyone’s toes, but it’s just really not possible to get the support and help we need when the meetings are only 3-4 times a year. This probably also contributes to our low turn-out. Additionally, one would think that a three hour meeting (noon to 3:00) would provide sufficient time to discuss issues applicable to both the SD and dystonia groups, but it really doesn't, especially when the meetings don’t actually get started until almost 1:00 anyway. For this last meeting, Dr. Doug Whitley and I presented a brief synopsis of the Annual SD Symposium in SLC that we both had attended the previous weekend and we also answered a few questions. This may have been somewhat interesting for the dystonia attendees, but they weren’t really getting the information and support they needed either. However, Dr. Whitley was able to answer several medication related questions from a couple of the dystonia attendees. When it was finally time for the dystonia speaker (Amy) to give her presentation, she had been sitting for so long, that her symptoms were aggravated, which made it much more difficult for her to get through her presentation. She’s an extraordinary young lady with a marvelous sense of humor. However, most SD patients can’t really relate to her experiences either. They also had a video presentation, but I don’t think they had time to show it. I stayed until 3:30 (30 minutes after the meeting was supposed to be over), but then I had to leave because of another commitment. Correct me if I’m wrong, but I think the basic consensus was that everyone liked getting together for the current support group, but that it would be a better use of everyone’s time to have a speaker who would be interesting and helpful to both groups. Then, in addition to the current support group, smaller meetings could be held more frequently in order for both groups, SD and dystonia, to get together separately in a more informal setting and traditional support group format to encourage and allow open discussion among all participants, share experiences, and provide advice, support, and help, rather than having an official speaker, etc. Apparently, the dystonia group already had the same idea as they had planned a small meeting with their group earlier in March; however it was canceled because they didn’t have enough time to organize and advertise it in order to justify using a room at the college that Amy works for. Another issue is the current meeting room at the Callier Center, which doesn't allow much interaction between participants because the seats are permanently attached to long conference tables, so participants are forced to face forward, which is okay when listening to a speaker, but is uncomfortable and doesn't allow a typical support group setting where attendees can visit and share information. I know how uncomfortable it is for me, I can’t even imagine how bad it must be for the dystonia patients. After discussing this, I believe Peggy was going to find out if the Callier Center has another room more conducive to our meetings. I am eager to work with you and everyone else who is interested to schedule our first SD Support Group meeting. If we could find out where most people live, we could consider finding a more central location or even move the meetings around to make them more accessible to more people. I would be delighted to host a meeting at my house. I know you made the same offer as well. So, where do we go from here? Lori
AB/SD and VCD since 2003
Dallas, Texas
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Posted by: Maria ®
04/14/2008, 07:40:05
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Hi!I can really relate to your fear. One of my major fears right now is to develop generalized dystonia. I got SD 22 years ago, but wasn't properly diagnosed until quite recently. Lately I have tried alternative therapies, since I can't the doc's to start with a lower dose than 10-15 units of Botox (so frustrating. I'm going to another country to see another ENT this month and maybe be able to get enrolled for Botox over there). On these alternative therapies I've experienced tearing/squeezing of the muscles in my arm/hand and in my diaphragme - and I do have pain in my right arm most of the time. Makes me think that having "just" SD was kind of okay after all. I think it's said that people who get SD at an early age are more likely to develop generalized dystonia. I do sometimes hope that my pains would be fibromyalgia or something else than dystonia, since I don't really have full-blown cramps and spasms (yet?), but it is more likely that it's dystonia. It is very hard to live with all this! I don't think you have to worry about the dystonia spreading if you didn't get it when you were young. Ciao,
Maria
(Scandinavia)
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Posted by: snowie ®
04/17/2008, 04:56:03
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Hi there,I first got SD when I was 31-32 years old. It started very very gradually, and it was only when people started asking me if I was 'deaf' and asking me to repeat myself etc that I realised something was wrong, and finally got a referral to a neurologist. I was then diagnosed with SD and have been getting botox injections for about 5-6 years. I'm 41 now, and last year was diagnosed with hand dystonia, after a period of time having difficulty with writing and dropping/ knocking things over. When finally diagnosed, it took me a while to come to terms with it, just as it did initially with my SD. When I'd been diagnosed with SD, I had been told that it was very unlikely that the dystonia would spread if you get it as an adult, as it normally stays focalized in one place. Before I was diagnosed with hand dystonia, I had started getting involved with a local Dystonia Support Group in my local area in London. Initially I had been so worried that I would be frightenned by seeing others with different types of dystonia, and frightenned that my SD would get worse, and the dystonia would spread etc. But, after getting over my initial fears, I have to say that it was so good to able to talk to others who understood about dystonia, regardless of the type of dystonia, and what was really touching was that everyone was a different age, from someone in their 30's, to a lady in her 80's , from different walks of life, with completly different types of dystonia. So, when I was diagnosed with hand dystonia last year, it threw me again, but I didn't feel quite so alone with it all, what with this Bulletin Board, and the Dystonia Board, and my local support group. All these things have really helped, and have been much appreciated, and I think I am becoming more accepting of things, whilst also realising that life doesn't stop, it carries on, and I can actually with stand alot more than I thought I could. And have gained alot more than I ever thought imaginabale when I was first diagnosed with dystonia. It felt like the end of the world then, but here I am, still here, moving along with life, so there is hope. Snowie
Devon, UK
Modified by snowie at Thu, Apr 17, 2008, 07:06:52
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Posted by: Gary Lea ®
04/19/2008, 13:57:38
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For my experience with Dr. Cooper and botox as well as my SLAD-R in Jan 2007 please write me at glea@shaw.caGary Lea
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