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Hi Sadnancy, I think you know this monster originates in the basal ganglia of the brain that controls movement. Mine is GENETIC! I find relatives because of this disease. I am from the south and my mom's family married and remarried each other over and over again. The disease spread like wildfire. Her 11 brothers and sisters mostly showed signs of the disease. Her 35 great aunts and uncles also showed signs. If not, they were carrying the gene or enzyme that causes the monster. It usually effects victims in mid-life and blacks do not get this disease like whites don't get sickle cell anemia, but everyone else gets this monster. My world famous neurologist told me that but I knew it! I am related to two famous people who have this disease. Sam Elliott, the actor has Spasmodic Torticollis just like me. Yes, we are related.The famous Ted Turner and I are related and he has limb dystonia. My uncle worked with him in Savannah and I've heard all my life we're related. Limb dystonia confirmed it. We need to gain awareness of this disease and I tried to contact Sam Elliott, but to no avail. I guess he thinks he's a big shot actor, so be it.
My first cousin is showing essential tremors of her head and neck and the doctor stated it was her thyroid. I told her "Kathy, it's a form of dystonia. My mom had essential tremors of her head and neck!" We are still being misdiagnosed, but I am smarter than many doctors who have never heard of the disease. I thought Sam Elliott could help us gain awareness, but not. I don't like Hollywood, anyway.
Many doctors don't have a clue. Make sure you contact a movement disorder neurologist. Get one who knows what they're doing. I'm going to one now and teaching him what to do. I'm a RN not a medical doctor. If he doesn't improve, I'm looking for a new movement disorder neurologist.
Klonopin has helped me along with Selective Denervation performed by Dr. Arce. Seven nerves severed. My throat was closing up and choking. Mom had the same problem and we can't smile. Smiling is hard to do. Sam Elliott's voice is deep and harsh because he has dysphonia. It's effected his vocal cords.
Hope that helps. Dorothy Rockwell Olson Williams
Replies to "Hi Sadnancy, I think you know this monster originates in the basal ganglia of the brain..."
Hi, Dorothy,
I too have genetic dystonia and my symptoms started very early but similarly were undiagnosed. I was labeled clumsy (falling and tripping) and boy when I got to school and we had to color those ridiculous cartoons of animals, I could not color inside the lines. I couldn't hold my head straight so was also labeled sneaky. I couldn't hold a pencil or crayon without snapping it because of muscle surges and was labeled TROUBLE. I was told to just try harder and practice writing the alphabet a 1,000 times and my script would improve, as if! So when I found computers, which because my life's work, I was saved! Before I took control of my own life which included the insight that dystonia is forever and no amount of praying, meditation, thinking good thoughts or exercise will make to go away, I was suffering. I started reading everything I could find and combing the research archives. I just had to push through life. To control tremors I had to lay my head on the desk and write. This trick worked to enable me to succeed at school and work.
There are all kinds of dystonia and you are right, it takes a neurologist working with the patient to find the best medication regimen and treatment plan; because these vary. Because my treatment is so effective only I know that I am working so incredibly hard to make my body behave; although, one of the doctors at the medical center where I live told me I am what they identify as severely disabled. Another equates dystonia s working out at the gym all day while trying to have a life. Nobody can tell because I absolutely own it and have mastered all of the tricks we teach ourselves and am appropriately medicated because I asked for different protocols until I finally found something that works and have a very caring neurologist who worked with me. Doctors are always looking for ways to treat this disability and sometimes its a success. Research is being funded finally and today when I say dystonia most doctors do know. In the past they would just say oh yeah Parkinson's. I would correct them and call it a teaching moment and educate them. Before that people were put in state institutions for these movement disabilities. I tried the Botox and I drooled. Not a great fashion statement🥳. I finally looked back through all of the research and found the carbidopa-levodopa myself and asked for a two week trial. I agree with you, Dorothy, I recognize dystonia in others too and sometime I ask and they know they have it and sometime they don't and are just suffering in denial. We often stay closeted because of the stigma. Oh yeah I have the type that worked its way up over my lifetime from my feet to my throat and didn't miss a single system as the years passed. I consider it my wicked task master and my education in compassion. I think owning it and mastering it with meds, behavior or changes in life style can work. And ultimately accepting that dystonia is for life. Do what you can and never take any crap about what you can not. My face will never light up when I see a loved one but then I don't have a single wrinkle 😉!
DD
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Thank you, @oakbourne, for all that information. I am also an RN and I research even before I go to the doctor. I'm kind of in a funk, not improving from the botox injections and having difficulty using the new high walker. It is very awkward to use and it "trips" over every crack in the sidewalk. Just like a rusty old truck, I'm breaking down. Life isn't fun anymore between my own issues and COVID restrictions. I'm hoping I'm near the end of my life.