any relatives with the same problem?

As you probably know, SD is classified as a focal dystonia. It is part of the dystonia family. Dystonia can be hereditary and genetic, but just because one member of the family has one form of dystonia does not necessarily mean that another family member will get the same kind of dystonia. It can and often does miss a generation. SD can run in families, but from what I've read there are usually other body parts affected in a more segmental or generalized form.

I believe that some time ago, Columbia-Presbyterian Hospital in NYC were looking for families where SD was present in more than one family member. More research needs to be done in this area.

Yes, my father had a gradual onset of SD in his late 40's (about 1960), and I had a sudden onset at age 28 (November 1975). I had the RLN section by Dr. Dedo in 1979 after I finally received a diagnosis. My Dad later tried Botox with limited results, but he also had essential tremor.

Sorry, Vicki. I've been unable to respond to your e-mail but my computer is not working so e-mails on AOL die. AOL is killing me these days. I'm stuck dealing with the Internet (ie: the SD-BB).

Moving on to answer your question: Extensive years of personal health research, which includes family genealogy research from the early 1800's to present (my mom started that in 1963), indicates that my SD case is clearly genetic. My entire biological family is *full of* Parkinson's, tremors and neurological disorders, generations back.

My personal theory is that if SD-patients captured/documented their last three/four gens of family genealogy (genetic lines AND medical history), they would likely observe numerous cases of tremors and other neurological disorders and it would help with diagnosis. I've mentioned this on the Bulletin Board in the past.

It's rare to have multiple cases of SD in a family but it is *common* to have cases of Tremors/Dystonia/Parkinson's (Movement Disorders of various kinds) in the same family. It's because of the rarity of the various disorders. SD is one of the rarest. Parkinsons is much more common than SD; thus, tremors and more common things are more likely to occur in patients who are born into these families. I have documented six cases of Parkinson's in my 2nd/3rd generation. Medical research has proven that SD occurs much more often in families with a large contingent of Parkinson's. My SD case is classicly genetic.

Come to a symposium, Vicki. We discuss these issues. With the family history you describe, you'll enjoy the pertinent genetic information.

I'll respond here since you said your AOL/PC is down.

In addition to my Dad's SD, my maternal grandmother had Parkinson's late in life (combined with severe crippling arthritis). My Dad definitely had essential tremor, and my Mom has Sjogrens (autoimmune) and rheumatoid arthritis. When I listen to my older brother speak, it sounds to me like his throat is so tight, I'm suprised it was I and not he who developed SD.

Thanks for the referral to Bill Piche. His surgery with Dr. Dedo was just a year after mine. Wish I sounded like I did 23 years ago right after the surgery -- was a miracle in my life. Oh well, hoping I'll see some improvement from the spasms over the next month. Today marks 4 weeks since my Thyroplasty.

(ooops - have to "modify"...I should give credit to John for originally bringing this subject up; I thought it was Vicki, due to the way the thread was partially collapsed; I was out-of-state when the original thread came up so I thought she started it...sorry John, and thanks).

I'll write more to your private e-mail after this (I got a computer upgrade on June 12th so decided to be brave and load AOL 7 on June 13th but it has caused me major grief so I'm now back to 5...and can e-mail again).

This topic of genetic-proclivities has always fascinated me so I'm delighted you have raised the subject currently on the BB. The subject has also been raised (quite articulately recently in the media) by Michael J. Fox when talking about Parkinson's and other neurological disorders, during his book tour and Congressional appearances.

Over the years I have been on this BB, I've stated that I may be one of the *fortunate* ones (an ironic twist) because I KNOW WHY I HAVE SD. Much of the conversation and angst during the history of this forum involves patient-searches for the *why* in their particular cases or searches for cures or solutions. I'm not talking about *why me?* as that is more of an existential question. But, many SD-patients ask the question, "how did this happen?" or "what did I do wrong?" or "what toxin did I injest/get exposed to?" or many similarly valid questions.

With me, those questions have been easily answered. I was born into a family full of documented Parkinson's cases and other movement, and neurological, disorders. Thus, my goal, in advocating for SD-patients (including myself), has always been to promote research for viable treatments and an eventual cure AND to promote patient support. When we're all going through this together, we have to share information and support each other.

Vicki, another patient who has written to this Bulletin Board who you may be interested in communicating with (if you haven't already) is Francie Hornstein. Her posts can be searched on the BB. She posts under her full name. There are three cases of SD in her family. She is a member of the SD-support group up here in Northern California and I bet she would be delighted to share family stories with you. Her mother was one of Dedo's first RLN patients, in the mid-70's.

Best of luck with your latest procedure and keep posting. You have once again surfaced my favorite subject!

I have Essential Tremors, Spasmodic Dystonia and SD. I just had Dr. Berke's surgical procedure done by Dr. Courey at Vanderbilt in Nashville last week, June 20th. The neurological problems also run in my family. My great-aunt, aunt, and two cousins that I know of, there were probably more. I come from a very large family. Out of four children I have three that show signs of the Essential Tremor. My SD came on suddenly in 1981 and I started having Botox injections in 1994, which worked very well and I believe gave me back my life. Good luck to you all!

I'm continually fascinated by other families that have multiple cases (as mine does). When there are alot of "cases" in our relatives, we can sort of figure out that our situations did not occur because we were in the wrong place at the wrong time (taking a sedative for a surgery, et al) or some other specific toxin exposure.

Since you are both in Northern California, I can say this. I went to a conference in Oakland, CA two years ago which had to do with ET and Dystonia and all of the medical experts there stated that, if a patient has dystonia and tremors in the same body part, the tremors are *Dystonic Tremors,* as opposed to Essential Tremor. They described Essential Tremor as only existing in people who do not have another reason for the tremor (ie: Parkinsonian or Dystonic tremors). Thus, I'm no doctor, but what I heard that day told me that, if you have tremors and dystonia at the same time, it's not Essential Tremor. Sure wish some knowledgable doc would expound on this.

I grew up in a family in which my mother refused to watch Katharine Hepburn movies, because KH reminded her of her own mother who had died of Parkinson's when I was one year old. Kate doesn't have Parkinson's though. She has Essential Tremor and she has acknowledged that her father had it also, thus a genetic connection in her family. If Katharine Hepburn had Parkinson's, she would have died years ago.

I'm very interested in all these femily stories and would be willing to collect them. Maybe we should do a big "collection project" together.