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Re: Project: Symposium for families impacted by dystonia
Posted Mar 27, 2009 1:55 PM
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How common is it for people with Cervical Dystonia to have some memory loss?? Has anyone done any studies on that? And what, if anything, can we do to help with that problem?
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Re: Project: Symposium for families impacted by dystonia
Posted Oct 7, 2008 6:08 PM
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Wow, I feel kind of blessed to be a part of this forum beacuse for such a long time I felt like I was pretty much by myself as far as my suffering goes. I had a pretty normal life for the most part, pretty handsome guy, tall about 6'2" tall athletic. In january 2003 I was in a car accident or actually I was struck by a car where I sustained a fractured skull, and I also injured a tooth in the incident. When I came to I noticed that my lower right molar was totally fractured but I guess considering the fact that I was still alive I didn't consider it a big deal. However, about a year or so later the tooth had to be extracted the lower right molar that is, and it was after this extraction which by the way was done quite horribly that my problems began. Since I am a stock broker and I spend hours talking on the telephone I began to notice a lot of tightness in my face when I was speaking on the phone, this tightness began to increase over time, until it developed into facial spasms and the more stressed out I was the more severe was this reaction. So I have dealt with this problem ever since, but my problem is isolated to my face or jaw. It is mainly apparent when I speak, but can also cause overall problems as far as relaxing my jaw and how my teeth fit together. It's tough dealing with it everyday, I take artane for the symptoms which does help, but of course there is no cure for the condition. God Bless all of you we will find a way through this I am sure.
DSJ
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Re: Project: Symposium for families impacted by dystonia
Posted Sep 3, 2008 12:34 PM
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I feel everyones pain here as my spasms started when I was 11 years old and took control of my life, I just wanted to know what was wrong with me but all the doctors found absolutely nothing wrong and yeah thought it was all in my head (which ironically enough it was). I did finally find a doctor that took me serious when I was 43 years of age, I am now 59 and on medication but its a small price to pay to lead a kinda normal life, well as normal as it can get when you have paroxysmal dystonia.
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Re: Project: Symposium for families impacted by dystonia
Posted Aug 30, 2008 10:16 AM
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It took over ten years and many incorrect diagnoses before our daughter was finally told that she suffers from dystonia. So many of our friends had similar experiences. Many were sent to psychiatrists because they were told that their symptoms were in their heads. The dystonia symposium is so important because it helps spread awareness and shortens the time that it takes to be diagnosed properly.
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Symposium for families impacted by dystonia
Posted Aug 29, 2008 9:01 PM
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I have had cervical dystonia/torticolis for forty seven years. When it started most american doctors had no idea what was wrong with me so they implied that I was crazy and that I should be seeing a pschycologist. Finally in 1972 I was sent to the Army hospital in Hawaii, where an army doctor diagnosed my condition as cervical dystonia. For those intervening eleven years I could not turn my head off of my left shoulder. Then I began different drug treatments, but it was not until 1990 when we moved to Maryland/ John Hopkins hospital, that Dr. Steven Reich treated my dystonia that I finally got some relief. I was so stunned I thought I had been cured, but soon learned that BOTOX could relieve some of the pain and some of the twisting of my neck and face to the left but that BOTOX is not a permanent cure. I continue to see the doctors at John Hopkins every three months for my shots, but the efficacy of the Bottulism Toxin no longer provides be with the sense that it is a miracle cure.
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Symposium for families impacted by dystonia
Posted Aug 27, 2008 1:59 PM
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I am praying that this project will succeed. There is no cure for Dystonia, and this disease changed my life forever. It took me 13 years to find out what I had, after being seen by 2 Neurologist, one MD, and finally I was diagnosed in AZ, with Dystonia- more specifically spasmodic tortecollis. Before my treatments, I could not hold my head up, could not sleep, as everytime I would lie down, my upper shoulders and neck and jaw muscles would go into spasms. I went from a normal life of being a Realtor, and a Pastor's wife, to a divorcee, and couldn't hold a job down because of short term memory loss. This was the effects of Dystonia on my life.
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Re: Symposium for families impacted by dystonia
Posted Aug 26, 2008 10:48 PM
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i can understan what you are going through,my little brother is now 15 years old and was diagnosed with dystonia at the age of 7. Everyday is a struggle for him and my family.
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Posted Aug 22, 2008 9:59 PM
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I wish my daughter could meet yours. She is also 12. She does not have dystonia but her 17 year old uncle does. To her and our family your precious daughter would be absolutely normal. We go every afternoon to my parents' so I can help them with my brother. Dystonia is a normal part of my children's life. I will pray for God to send a friend with an understanding and compassionate heart to your daughter and family. Edie
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Symposium for families impacted by dystonia
Posted Aug 22, 2008 9:51 PM
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My youngest brother has generalized tortion dystonia that causes severe muscle spasms all over his body. He is 17. He is totally dependent on our family for all of his needs. He is the most wonderfully upbeat and happy person you could ever meet. He has never had the opportunity to know a "normal" life. He has suffered from this disorder since infancy. He delights in watching his nieces and nephews play and being in our dad's automotive shop and watching the guys work. He also loves it when I take him swimming. He only weighs about 65 pounds and he's the height of the average 10 or 11 year old. Since he's not very big I am able to lift him and hold him in the pool. Please vote for this project. Ultimately finding a cure for dystonia is our family's hope for our dear loving Michael. Thank you to all who have voted for this project. Michael's sister Edie
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Symposium for families impacted by dystonia
Posted Aug 19, 2008 3:31 PM
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It took me 13 years to find out what I had, and an unhappy divorce. Dystonia prevented me from completing my education, as it also affects my short term memory. It also kept me from finding a good job because of short term memory loss: these were doors I could not open. I was finally diagnosed in Scottsdale, AZ, and continue treatments for Cervical Dystonia, and Oromandibular Dystonia. I was able to obtain my Certification to teach piano with the Music Teachers National Association in 2005, and I played 3 Concerts in 2007 for Dystonia Awareness. I am committed to helping research, and anything else I can do.
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symposium for families with dystonia
Posted Aug 7, 2008 1:57 PM
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Dystonia is a neurological problem with a variety of sub-types with differing symptoms. No matter what type you have, it has a huge impact on the patient's quality of life and it affects all the family members as well.
Education and support for those affected by dystonia and for their families is crucial to help deal with disorder and go on with life.
I have cervical dystonia, affecting my neck and shoulders. The pain and fatigue that my CD causes has forced me to quit working as a Registered Nurse. I am always so impressed with the courage that dystonia affected people display every day to try and lead as normal a life as possible.
PLEASE SUPPORT THIS WORTHWHILE EFFORT.
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Edited by CM598141 at 08/07/2008 11:00 AM PDT
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Posted Aug 1, 2008 3:16 PM
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Over 17 yrs ago my life was forever changed for the worse. I was diagnosed with cervical dystonia (dystonia affecting the neck muscles). This makes my head sit crooked on my shoulders and causes severe pain in my neck from my head being forced to move in an abnormal position. There is "NO CURE" for this disorder and public awareness is necessary to raise funds to help the hundreds of thousands of people like me who suffer from some form of Dystonia. PLEASE do all that you can to support this project.
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Posted Aug 1, 2008 2:20 PM
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I suffered from dystonia and lost my career due to its affects without ever even knowing what it was! This symposium will do great things to educate people affected by dystonia who like me never even heard the word prior to confronting it face to face. This is a very worthy project that deserves funding!
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Posted Jul 27, 2008 11:15 PM
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I was 14 when my dystonia started. I was a competitive swimmer and in the best shape of my life. I was strong and loved sports. I had always been active and aside from the normal flu I was always healthy. Looking at me now you wouldn't believe me if I said I swam a mile in a swim meet or miles during practices. Now you would see a person in a wheelchair being pushed by her parents. You would see a girl with batteries in her chest and braces on her legs. I was 18 when I finally met someone else whose body looked like mine. That was last year when I went to my first Dystonia Symposium. It was the first time in years that I felt normal. Words can not give justice to the feelings I got when I met people who could relate to me. The symposium gave me hope for my future. It was there that I talked to others with dbs (deep brain stimulation) and saw the miracles that it had the potential to do for me. The Dystonia Symposium was the best experience of my life.
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Edited by slz24 at 07/27/2008 8:16 PM PDT
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Posted Jul 25, 2008 8:20 AM
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My daughter was diagnosed with hemi - dystonia in December of 2007. She was a healthy, vibrant, 12 year old who dreamed of being a vet. Since last year, I have watched the depression and pain take control of her life. Where laughter dominated her world she is now dominated by spasms and embarrasment. It is hard enough manuvering the teenage years as a healthy teenager, but now she looks and feels different from the rest of the kids. That is why this symposium is so very much needed, she is like so many other children and adults affected by this disease. She feels alone, when we know that she is not! I pray for a day that she feels good again, and I pray for a cure!
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