Family members with S.D. | ![]() | ||
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Posted by: Sherry A. Kjellberg ® 09/23/2002, 13:49:03 Author Profile Mail author |
Just curious if anyone out there has family members with S.D. or other dystonias? I found out recently that my great-grandfather died with "some sort of movement disorder", not really diagnosed back then by small town doctors. My mother thinks it was probably Parkinson's. Also, she had a first cousin who died of Lou G.'s Disease. Since my SD was triggered by trauma (car wreck), I'm curious about how others first developed symptoms and about dystonia family history. Sherry/AD/Denver |
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Re: Family members with S.D. | ![]() | ||
Re: Family members with S.D. -- Sherry A. Kjellberg | Top of Thread | Archive |
Posted by: Lynne Martinez ® 09/24/2002, 04:03:03 Author Profile Mail author |
Sherry, Over time, on this BB, we have discussed various "Family Connections." I've been open about my own "family-history" (several cases of Parkinson's and other neurological disorders). Obviously, it is connected and I was blessed that my mother did extensive genealogical research on several generations. Her lineage research inspired my own medical research of recent generations. Every patient should do this type of study to determine "the Family WHY'S?." I've promoted this type of research on the BB for years. It's important, so that patients get some clue as to the why's and what's. It would be rare to have multiple cases of SD, or other focal dystonias, in the same family although one woman (who posted here several months ago) can document three cases of SD in her family. I'll ship this post to her so possibly she will respond to you. *NO Coincidence* that some of this stuff runs in families. Neurology is definitely hereditary. We've explored it here in the past and there is much to be learned while continuing to ponder this issue. Good luck researching your own personal genetic connections. There will be ALOT of info about genetic-connections and research at the Miami Symposium in November, in case you can make it. --Lynne (AD/SD; Northern California) |
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Re: Family members with S.D. -- Sherry A. Kjellberg | Top of Thread | Archive |
Posted by: Sherry Overholt ® 09/24/2002, 13:40:59 Author Profile Mail author |
Hi Sherry, Yes, my mom has a mild case of SD. She has had it for about 8 years and it has worsened in the last year or two. I wish she would try botox but she won't. Like everyone, she hesitates to answer the phone and people are always asking if she is sick. Actually, for an 84 year old, she is extremely active and healthy. She kids everyone that she got SD from me! My doctor diagnosed her and said it was the first time he ever saw a mother/daughter with sd. Mine was much more severe than my mom's and I received botox for over 10 years until Dr. Berke's surgery in 2000. My mom's voice changed right after the death of my father and mine changed after using a room humidifier for an extended period of time. We don't know for sure what caused our voice disorders and I don't think doctors know what really causes sd. Sherry Overholt |
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Re: Family members with S.D. -- Sherry A. Kjellberg | Top of Thread | Archive |
Posted by: Sarah Bayle ® 09/24/2002, 19:29:24 Author Profile Mail author |
My maternal grandmother had SD, as do I. She was never diagnosed but recently her sister told me that a doctor had told her in the 1950s), "she had a twist in her vocal chords and they could surgically remove the twist." (Well, she clearly had SD.) She never did the surgery and never was interested when I started to tell her about dystonia. I'm sure it is not coincidental that both she and I have the same rare disorder of the vocal chords. We was of Ashenazi Jewish decent and, thus of course, so am I. I find it very interesting that she was told she had a 'twist' in her chords. I assume the surgery would have simply severed some of the muscle. But, why didn't the MD just tell her that? |
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Re: Re: Family members with S.D. -- Sarah Bayle | Top of Thread | Archive |
Posted by: Francie Hornstein ® 09/27/2002, 02:21:06 Author Profile Mail author |
Lynne Martinez alerted me to your postings. I am the third person in my immediate family to develop SD. My mother got it first in 1968--a very severe case which came on rapidly after a cold. She was in her 50's. My brother developed it next in the early 70's. He was 31. His SD was different than my mom's. It came on intermittently--sometimes his voice was normal and other times it was very strangled-sounding. They both had Dedo's surgery in the mid-70's. My mom was Dedo's 3rd patient. I started developing very mild symptoms of SD in 1978 when I was 31 and pregnant with my first son. I had a very mild case (occasional vocal tremors). About three years ago, in my early 50's it started to get really bad--breaks in my voice, the need to expend a huge amount of energy to get words out, but I can always make myself understood. I started having Botox in Feb with moderate results. My voice isn't normal and I still strain to speak, but its much less difficult than without Botox. I'm still hoping for a better result through trial and error. I'm also of Ashkenazi Jewish descent and we have other neurological disorders in our family. My grandfather had Parkinsons. Two of us have had Bell's Palsy (a temporary facial paralysis thought to be caused by a virus). Ashkinazi Jews and Mennonites seem to be the two groups in which dystonias have a genetic link. There is a study at Beth Israel Hospital in N.Y. where they're looking for families with two or more people with dystonias. My mom and I just sent in blood samples and are part of the study. I read about it in the NSDA newsletter. I'm happy to hear from others re:family SD issues. Francie fhornstein@aol.com |
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Re: Re: Family members with S.D. -- Francie Hornstein | Top of Thread | Archive |
Posted by: Lynne Martinez ® 09/27/2002, 16:52:01 Author Profile Mail author |
Francie, Good to see you here, telling your family story in this thread. I've found your family SD-history captivating and am gratified to know you in person, as we share medical professionals and a support group over the past couple of years. For four years on this BB, I've shared stories of my family neurological history and personal theories about genetic connections in my mom's side of the family (based on fact and observation) in order to be supportive to other SD'ers trying to determine the origin of their cases. I figured my case out years ago but *the quest* can be quite challenging. Your genetic connections are SO clear that it's important we are all aware of such information from others. We as patients; and, also, the medical community. I'm so glad your family is participating in the medical study at Beth Israel. The docs who speak at the symposiums, and the clinical researchers, will be highly interested in your family history, as it would be very rare to have 3 cases in one family, based on espoused theories. Or should I say, the theories state that multiple SD-cases in one family are almost unknown. Your participation in the study will enlarge our Body of Knowledge on SD. The great thing about the two studies which have been done in the Ashkenasi Jewish community (Jewish immigrants from Eastern Europe/Russia...to make that clear for folks who may not know this term) as well as the Mennonite Community, is that these groups can be isolated and studied as an insular group (since they often stay in the same place), thus genetic connections are much clearer. Other family groups may not be so easy to isolate (such as mine...immigrated to the US between 1640-1827 and spread everywhere) as they disperse and are not easy to track as a group genetically. However, my family is FULL of neurological stuff (dispersed as they are) so I'm fascinated by your family. Also, my extended family (significant other's relatives and friends) is 100% Ashkenasi Jew so I find this fascinating. Thanks so much for sharing this. You confirm so much of what I've learned about my own family genetics over the past 12 years. --Lynne (AD/SD with tremor and RLN surgery; Northern California) |
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Re: Re: Family members with S.D. (excellent genetic information on SD) -- Lynne Martinez | Top of Thread | Archive |
Posted by: Sherry A. Kjellberg ® 10/07/2002, 10:56:58 Author Profile Mail author |
Thanks Francie and Lynne, for your excellent posts on this subject. I find such great information from everyone on the B.B. and I share important subjects with my team of docs/vocal therapist. The more we educate each other and the medical community, all the better! Sherr/Mixed/Denver |
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