The one thing I have learned about DYSTONIA is that it effects mostly northern Europeans and females. Blacks don't seem to carry the DYT1 Gene that causes this horrible disease. They can still get the disease from trauma. I am Norwegian, Irish, and German and it runs in everyone of my aunts, uncles and cousins. Only one parent has to carry this gene for it to cause DYSTONIA. You may get lucky and never have the disease, but the gene can be passed on to your children.
I've said many things to help GrammyKay and she has not responded to one thing I've stated. No Thank You, Nothing! I guess she does not appreciate my knowledge about this disease. I have nothing else to say if she does not respond. So much for helping people!
My mother had essential tremors in both hands at the age of 16, so the ill-logic of ET having to do with the aged is a misconception. This disease effects anyone, any age, male and females and many times it's hereditary.
It is hereditary, I have had essential tremors in both hands and arms, and I had 5 uncles on my
father's side that had it. I have had it since I was 20 I am now 81. It is good to join essential tremor.org They have new information every month.
I hate ET so much, there is no right fix for it, yes they have the Operation on the brain, but there are side effects to that, they can only do one hand, then I think a year later you can do
the other, you don't know how long it will last. As you grow older it gets worse, I can not
write anymore.
I think we should have a group for ET, that is by itself, what do you all think?
It is hereditary, I have had essential tremors in both hands and arms, and I had 5 uncles on my
father's side that had it. I have had it since I was 20 I am now 81. It is good to join essential tremor.org They have new information every month.
I hate ET so much, there is no right fix for it, yes they have the Operation on the brain, but there are side effects to that, they can only do one hand, then I think a year later you can do
the other, you don't know how long it will last. As you grow older it gets worse, I can not
write anymore.
I think we should have a group for ET, that is by itself, what do you all think?
Marcia, I've had the DBS surgery. They did both sides at once. It's probably the best thing I've ever done for myself, but it's not perfect. My left hand still shakes when I get to the intent of a movement. Fortunately I'm right handed. The surgery was two years ago (I'm 69 now) and I will have my fifth calibration session in May of this year (2023).
mmcfppd,
I am 81 so I am not so sure they can give it to me, I was just reading about the ultra
sound one, where you don't have to shave your head. I know there are side effects to
both of these procedures.
marcia, my first impression of the ultrasound treatment was, "Gee, why didn't I know about that?" But really, since the syndrome(?) is progressive, I think I'm better off having pursued this course because the amplitude can be increased over time unlike the scarring that is the treatment result with the ultrasound.
Are you sure they won't do it for you at 81? My docs are with the Methodist Hospital System in Houston for my neurologist and Baylor/St Luke's for my Neurosurgeon.
My Doctor has diagnosed me with Essential Tremors. This is much better than having Parkinson’s. I have been taking Primidone for the tremors for about 6 years. I’m interested in hearing from anyone who may have been diagnosed with Essential Tremor but later was diagnosed with Parkinson’s! And can anyone comment on what they think about being on Primidone for 7 years?
Hello, here in Brazil the Einstein Hospital in São Paulo started with High-intensity focused ultrasound (HIFU) for the minimally invasive treatment of tremor disorders in essential tremor and Parkinson's syndrome. Has anyone heard about it? Thank you.
Hello, here in Brazil the Einstein Hospital in São Paulo started with High-intensity focused ultrasound (HIFU) for the minimally invasive treatment of tremor disorders in essential tremor and Parkinson's syndrome. Has anyone heard about it? Thank you.
I looked into it about 7 years ago. The neurologist I had at the time was not in favor of it because it is such a small spot they have to hit to correct the tremor that he said if they hit another by accident it causes another problem neurologically., But perhaps things have improved since then.
My Doctor has diagnosed me with Essential Tremors. This is much better than having Parkinson’s. I have been taking Primidone for the tremors for about 6 years. I’m interested in hearing from anyone who may have been diagnosed with Essential Tremor but later was diagnosed with Parkinson’s! And can anyone comment on what they think about being on Primidone for 7 years?
I have been on primidone for about four years. No major side effects. I’ve had essential tremor since my 30s and I’m now 68. But in the last year and a half they’ve got exponentially worse. Last November I was diagnosed with functional neurological disorder known as FND. This disorder is a neurological disorder of the brain and bad tremors are a part of it. So my worsening in my tremors has been caused by FND. I can’t write well at all, and I can barely get food to my mouth. I’m trying physical and occupational therapy. Has anyone else had a diagnosis of FND? It’s got a lot of nasty things associated with it.
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The one thing I have learned about DYSTONIA is that it effects mostly northern Europeans and females. Blacks don't seem to carry the DYT1 Gene that causes this horrible disease. They can still get the disease from trauma. I am Norwegian, Irish, and German and it runs in everyone of my aunts, uncles and cousins. Only one parent has to carry this gene for it to cause DYSTONIA. You may get lucky and never have the disease, but the gene can be passed on to your children.
-
Like -
Helpful -
Hug
1 ReactionI've said many things to help GrammyKay and she has not responded to one thing I've stated. No Thank You, Nothing! I guess she does not appreciate my knowledge about this disease. I have nothing else to say if she does not respond. So much for helping people!
It is hereditary, I have had essential tremors in both hands and arms, and I had 5 uncles on my
father's side that had it. I have had it since I was 20 I am now 81. It is good to join essential tremor.org They have new information every month.
I hate ET so much, there is no right fix for it, yes they have the Operation on the brain, but there are side effects to that, they can only do one hand, then I think a year later you can do
the other, you don't know how long it will last. As you grow older it gets worse, I can not
write anymore.
I think we should have a group for ET, that is by itself, what do you all think?
-
Like -
Helpful -
Hug
2 ReactionsMarcia, I've had the DBS surgery. They did both sides at once. It's probably the best thing I've ever done for myself, but it's not perfect. My left hand still shakes when I get to the intent of a movement. Fortunately I'm right handed. The surgery was two years ago (I'm 69 now) and I will have my fifth calibration session in May of this year (2023).
mmcfppd,
I am 81 so I am not so sure they can give it to me, I was just reading about the ultra
sound one, where you don't have to shave your head. I know there are side effects to
both of these procedures.
-
Like -
Helpful -
Hug
1 Reactionmarcia, my first impression of the ultrasound treatment was, "Gee, why didn't I know about that?" But really, since the syndrome(?) is progressive, I think I'm better off having pursued this course because the amplitude can be increased over time unlike the scarring that is the treatment result with the ultrasound.
Are you sure they won't do it for you at 81? My docs are with the Methodist Hospital System in Houston for my neurologist and Baylor/St Luke's for my Neurosurgeon.
-
Like -
Helpful -
Hug
2 ReactionsMy Doctor has diagnosed me with Essential Tremors. This is much better than having Parkinson’s. I have been taking Primidone for the tremors for about 6 years. I’m interested in hearing from anyone who may have been diagnosed with Essential Tremor but later was diagnosed with Parkinson’s! And can anyone comment on what they think about being on Primidone for 7 years?
-
Like -
Helpful -
Hug
1 ReactionHello, here in Brazil the Einstein Hospital in São Paulo started with High-intensity focused ultrasound (HIFU) for the minimally invasive treatment of tremor disorders in essential tremor and Parkinson's syndrome. Has anyone heard about it? Thank you.
I looked into it about 7 years ago. The neurologist I had at the time was not in favor of it because it is such a small spot they have to hit to correct the tremor that he said if they hit another by accident it causes another problem neurologically., But perhaps things have improved since then.
-
Like -
Helpful -
Hug
1 ReactionI have been on primidone for about four years. No major side effects. I’ve had essential tremor since my 30s and I’m now 68. But in the last year and a half they’ve got exponentially worse. Last November I was diagnosed with functional neurological disorder known as FND. This disorder is a neurological disorder of the brain and bad tremors are a part of it. So my worsening in my tremors has been caused by FND. I can’t write well at all, and I can barely get food to my mouth. I’m trying physical and occupational therapy. Has anyone else had a diagnosis of FND? It’s got a lot of nasty things associated with it.