Posted by: Mary Bifaro ®
05/10/2005, 13:26:01
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Dear Bill,Thanks for letting us know about this interesting article. I was glad to see that NSDA was mentioned as a resource at the conclusion of the article. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Lynne Martinez ®
05/11/2005, 20:55:56
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Thanks Bill!Great article. Good to know how my former work colleague is doing and that his experience with dystonia (and this excellent article) will probably raise some awareness. Scott Adams and I worked down the hall from each other at a monstrous corporate telecommunications company for several years in the late 80's - until 1991, when I took early retirement because of my voice. We were both in engineering fields (different ones). Thus, we didn't know each other as we both worked in cubes in different wings. In the late 80's, while everyone else in Corporate America was beginning to read "Dilbert" and was saying, "Gosh --- that sounds just like the place I work!" ... it really WAS the place I worked. Scott carried a huge burden on his shoulders then, expressing the frustrations and demands we all dealt with, at a mega-company which shall remain nameless. "Dilbert" mirrored our work lives everyday, so he provided daily watercooler conversation. I didn't know Scott had dystonia. Last time I talked to him was at a large professional association meeting in 1994 when he was the keynote speaker. I was still without a diagnosis or voice and he was still at the "nameless" company. We had all thought he would be fired much before then (the mega-company did such things) when Dilbert started becoming successful. Another interesting element about this article (for theorists, regarding SD and other focal dystonias), is that I had writer's cramp for two to three years in the late 70's and also had the experience of making a change to control it. Nobody diagnosed it then (doctors said it was nerves, but I also could not replicate it for a doctor) but I was a computer programmer, using my hands 8 hours a day, and for two/three years, I could not do anything (including writing a check) in cursive or printing. At that time, I started to print everything in block letters, which seemed to work. Realizing not being able to sign my name on a check or write out instructions/procedures for co-workers was a serious problem so I completely changed my handwriting. My signature looks nothing like it did back then. About that time, the hand spasms disappeared. Appears Scott did something similar. Shortly thereafter, I became a manager of software programmers/engineers. So, 8 or 9 years after my hand (the one I needed to work) went, I then mostly needed my voice to work. So, what went then? My voice, with SD. I remember saying to myself about a year after the SD started and was increasing in severity, "I cured the problem with my hand, so I can cure this one also." Unfortunately, it didn't work for the voice. But, for some reason, they seemed to be connected even though no doctor ever made a connection. Reading this article about Scott and his "workaround" (old software engineering term) brought back all those experiences from years ago. Is there anyone else out there who has had one focal dystonia remit, and then developed another one after a period of time? This article about Scott highlights how unusual/challenging/confusing some of our cases can be, with the origination in the brain. Thanks for sharing this excellent article, Bill. It's given me alot to think about. I'd forgotten about my writer's cramp 25 years ago. Then again, sometimes I forget I have SD, if it's a good voice/breathing week. --Lynne (AD-SD; RLN surgery; PVFM; Northern California)
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Posted by: Mary Bifaro ®
05/12/2005, 06:50:43
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Dear Lynne,Thanks for your fascinating post on working with the "Dilbert" author. It is quite curious how your hand problems were resolved and then your voice problems arose. It will be most interesting to hear if others report similarly. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Lynne Martinez ®
05/12/2005, 19:46:15
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I'm also interested in knowing if others have had a similar situation. Best guess, with what I know now about focal dystonias, is that my writer's cramp case went into remission. I was fortunate in it remitting, as I couldn't use my right hand to do specific tasks during that 2-to-3 year period. Similar to some SD cases remitting for unknown reasons?
The situation years ago with "the Dilbert author" was beyond fascinating. Glad you enjoyed the story though. It was intense and went on for years. During a lengthy period, when the company was in traumatically stressful transformation from a mega old-world cross-country monopoly to a "lean-and-mean" 21st century tech/telecom company, much went awry and "Dilbert" expressed our universal organizational pain over many issues.Who ever knows what triggers dystonia, but "trauma" is known to be a trigger and that corporate situation definitely engendered trauma. Working 20 hours a day with unrealistic goals is no fun. Thanks for your response and something just occurred to me. We out here, in the Pacific Region, need to be careful. This is an alert to people in Northern California, many of whom read this BB even if they don't post. Because "the Dilbert author" lives nearby, and the level of SD-activism/advocacy in this area is extremely high lately (and the NSDA was foot-noted in the article posted on the BB), obviously a formal NSDA contact will be made in due time, as part of my official function. Since the article has come out, people outside this geographical area are obviously free to contact Mr. Adams over the Internet; but, he is very well-known locally. "Dilbert" was a strip in the San Francisco Chronicle many years before it was nationally syndicated. His city of residence was mentioned in the article. We need to respect his privacy in the San Francisco Bay Area. Best Regards, Lynne Martinez
NSDA Pacific Regional Coordinator
Modified by Lynne Martinez at Thu, May 12, 2005, 22:19:09
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Posted by: kfeeley ®
05/13/2005, 13:53:29
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More and more, my suspicions are increasing that the onset of dystonia might have to do with overuse of certain muscles. As I read through the BB postings over the years, it seems to me that a lot of people who get SD are people who talk quite a lot as part of their jobs (teachers, trainers, sales people, etc.). I've also read about all the string playing musicans who come down with focal dystonias in the hands and brass and woodwind musicians who get it around the mouth. Scott Adams' story of getting it in his writing hand is yet another piece of anecdotal evidence. Now Lynne writes that her hand dystonia remitted after she left the position which seemed to require a lot of writing. If I remember correctly, Lynne, didn't you go into HR and Organizational Behavior types of jobs, which are also bound to require more talking? Coincidences all? -Karen
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Posted by: Lynne Martinez ®
05/13/2005, 20:25:47
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Hi Karen,Yes, you are correct. I was a middle manager in Corp America (Information Technology) with an extremely demanding job where I had to talk constantly over 10 hours a day to represent my tech employees in the software projects we were doing to move the company out of the 18th century. Very large task. What I said in my last post was true. Many days, we all worked from 14 to 20 hours a day. In a three-week period back in the 80's, I worked 20 hours every day. That's why "Dilbert" was so important to us. Whew....what a relief he was. But I'd never say all that talking (or all that coding as a programmer) created my dystonia. There are such things as "causes" and there are such things as "triggers." I'm clear, in my own case, that the "cause" of my SD is genetic. My family is full of PD and ET. Parkinson's and Tremors. I had vocal tremors from the age of 6, which became more mild as I matured (read Keath Fraser's book, regarding his SD case, for an explanation of childhood vocal tremors and a maturing larynx). I literally forgot about the writer's cramp, until this Dilbert thread. It was so long ago. My maternal family line is "neurologically sensitive." My trigger (for SD) was probably the "trauma" of working those non-stop hours, back in the mid and late 80's. There was no time to sleep, while transforming a company from Alexander Graham Bell to super-high-tech/Silicon Valley. At a point, it all takes a toll on the human body. Afterall, the human body is a "system" and all systems have a breaking point, if not given what they need to sustain themselves (fuel and rest, etc.). After many years of personal research, and meeting several hundred SD and dystonia patients in person at support groups and symposiums, my theory is that we all have a cause and we all have a trigger for our individual cases, and it's not that difficult to figure it out. If people would do the research and look into their family history, regarding neurological responses. In the old days (rural/slow/stressfree) prior to TV and video games and computers, our families may have had "the gene" which would have pre-disposed them to have a movement disorder, but it never got triggered. In the 21st century, there are "triggers" on every block and at every stoplight. Life has become much more complex and stressful. The term "idiopathic" is often used to explain cases. What that means (scientifically) is that "nobody knows." In reality, it can often translate to "genetic" whether that be in the current generation, or two gens back. I always give the docs a break in my case. "Idiopathic" in my case can be traced to my mother's genes. When I explain that to them, they breathe a sigh of relief since they no longer have to worry about me wondering "why me?" Over the years, I've quizzed numerous SD patients who want answers about why they got SD. I've asked them...."is there anything in your family?" They almost always say "no." However, when it comes down to it, they tell me stories like, "well, my brother is on drugs and mom is bi-polar so she's on meds and my grandma used to shake before she died." All of this stuff is related. The brain and the CNS are the "supervisors" of all of this activity. SD (and dystonia) is acknowledged as originating in the basal ganglia. Brain. Since most of us only weigh between 120 and 250 pounds, and we have this incredible "system" going on in our body --- doesn't it make sense that it's all related, to some degree? Maybe not directly, but indirectly? It can't be that difficult to connect the dots. I don't believe in the "overuse theory," in general, since people who barely talk (or have no talking requirements) also get SD. But, with my bizarre family history, I clearly believe (and have found through research), that some people are PRONE to movement disorders, and that those movement disorders might likely manifest in the part of the body they use (and need) the most. Look at all of us (managers, attorneys, ministers, teachers, etc.) who have lost our long-established professonal careers due to SD. I love this topic, but write me off the BB for additional observations/research since we might be boring people in philosophizing. Great to see you in Portland. Thanks, Lynne
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Posted by: Linda Mott ®
05/12/2005, 14:19:29
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Bill,
Thanks for the article on Scott Adams. I have ADSD & CD. ABC's "Good Morning America" had a segement on 05/05/05 on a Mother/Daughter team; one with writer's cramp & one with generalized dystonia. Always good for dytonia to get any national publicity. Raising public awarness is indeed an uphill battle, but we move on! Sincerely,
Linda Cannon-Mott
ADSD/1973
CD/1989
B'ham, AL
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