- My father was used as a US Soldier Guinea Pig at the Einiwetok Island Bomb tests. Maybe I'm getting a little conspiracy theory here but I wonder if thats why my Friedreich's Ataxia Gene from my mother activated itself at ~32 years of age? Any thoughts? No I do not think there are black helicopters following me or ailens are controlling people like puppets.....
It is not the first time that I have heard of many theories, and many may have some truth behind them.
Proving them IS another issue.
I do think that some researchers are willing to think "out of the Box" although many researchers are reliant on Funding that may dictate how and where they research.
You keep on keeping on.
an interesting thought Mark .. my theory is that my cerebellar ataxia of no known cause is due to being born prematurely. there doesnt seem to be any research on this either.
I was a full term baby. There goes that theory!
Mmm, it makes you wonder doesn’t it?
I’ve got three theories -
My paternal grandmother passed on the gene for Muscular Dystrophy.
This is only supposed to be passed down through females, I’ve often
wondered if there was some weird connection there.
My mother had symptoms similar to mine, and also an eye problem.
My first whiplash injury was at age 5, I was catapulted from the back
seat of a car into the windscreen, since then I’ve had one or two more
whiplash incidents. I’ve had a seizure, a serious eye condition and
ataxia, these could be related to the first bang on the head. Also,
(nearly finished) I’ve got twisted blood vessels causing atrophy of
Oh, and I was two weeks overdue at birth. xB
I've racked what's left of my brain for eleven years...,ha!...,to try to figure out why I have ataxia, to no avail! Simply, it is what it is (in my case)! Even though there's no cure, guess I'll always wonder "why"..., ;o)
Sometimes, it is as simple as a gene mutation for whatever reason and which happens whenever…
I am the only one in my family with a rare heart problem. It is generally hereditary, but in my case, No one in my family has this problem. Genetic testing showed I have a gene mutation. Folks, I am a mutant! hey don’t look at me like that!
Unfortunately, chances of passing the gene to my offsprings was 50%, which I did! and one of my two children has the gene…I did not know until I was in my forties that I had a heart problem.
There are some genes which skip generations and reappear later…may be they are hidden some place in our body and fear coming out. It is a jungle out there, you know! With the same gene, two members of the same family can have a completely different reaction to the disease. I mean by this that that ataxia, or heart disease or whatever genetic illness you might have is not necessarily the same as your sister’s, ’ or brother’s or mother’s etc…
This is a very simplistic explanation, but that is the best I can do. It is a very complicated matter, and we may never know the cause or the solution in our lifetime. I prefer to not torture my brain trying to figure out where, when, why, how…
My theory is that there was a Neurological weakness as dad had Parkinsons when he was 49 and I was nobbled off by a virus.Either way it is cerbellar atrophy whatever the cause ie a brain disease in my case.
In addition, my neurologist does think my ataxia is hereditary, although the gene hasn't been identified yet. Even if I knew, I don't know what I'd do with the information, in relation to my grown children or grandchildren. Sometimes, ignorance really is bliss...,ha! ;o)
My Neuro thinks the same as Rose's.
Yes, Marie, my neurologist thinks all ataxia's (except, of course, those with a definitive cause) are hereditary. ;o)
I'm on the same wave length as Rose and Marie. I am 62 years old. My brother, sister and I have inherited Ataxia approximately at the same age at 52. We inherited ataxia from my Dad. My Dad had 6 sisters and 1 brother and none of them have ataxia or signs of ataxia. My Grandmother walked with a wide gait but didn't have balance issues, so we think that it started with her. No other ancestor had balance or coordination issues that I know of.
I've learned from this web sight that there are many causes that trigger ataxia. I keep an open mind as to any theories that arise. It really makes you become aware and get the word out that Ataxia do exist. I appreciate today's technology to make that happen.
Hi James, You make some valid points! I'm soon to be 60 years young, and no one in my family, as far back as we know, has/had ataxia, except me! Although I was diagnosed eleven years ago (at 49), thinking back, I came to realize I had subtle symptoms starting in my early 40's. I've had genetic testing for the known recessive types of ataxia, which was negative. I may have genetic testing for the known dominant types, although the percentage is low that anything would show up positive. So my juries still out on that. Therefore, at this point, I just do the best I can, as what's the alternative?...,ha! ;o)
My husband, Bob, started showing signs of Ataxia when he was 29. He is 65 now and was finally diagnosed a few years ago with SCA2. It was never in his family before so we assumed it was not hereditary, until my 33 year old daughter started showing signs 2 years ago. Bob was in Viet Nam for 18 months 1968-1970 and was on the ground where agent orange was sprayed heavily. I am convinced that is where his gene was mutated and then passed on to our daughter.
That makes sense, Kite! Agent orange caused our soldiers so many severe health problems! If I remember correctly, neurologically it was a catastrophic chemical! I'm so sorry you're husband and daughter have ataxia. Please thank your husband for his service from me!!! My best to all of you..., ;o)
Hi Rose, I've also had genetic testing done on various types and they came back negative. A Neurologist informed me that my symptoms leads to SCA6. The research I have done: age at onset,what you experience such as incoordination of gait which is associated with poor coordination of hands, speech, and eye movements. Unless there is another disorder with the same symptoms, I will never know. At the time, I just wanted the testing done for my family tree purposes. I am no longer interesting in genetic testing. I know what i have and that's all I need to know. I've always had coordination problems. I couldn't catch a ball with the other kids. I always thought I was just different. What I had learned in the last couple of years is it had to do with eye movement. My eyes couldn't follow the ball. The baseball or football come upon me too fast. I am always asked where I'm from because I sound different. I thought I sounded normal. However, I don't like the sound when I record the message on my answering machine. I just hope that in today's classroom that teachers and instructors observe the kids more carefully and acknowledge that if a kid is acting different than that kid needs to have further evaluation to find a solution as to why the difference in behavior. Kids today have more opportunity that we didn't have. There were no MRIs, and ataxia didn't come into existence until the 1990s. Well, I rambled enough. Take care.
No worries, James! You can ramble all you want, as I found your story very interesting! I agree, I think genetic testing for family tree purposes is the way I feel too! I have two grown children and two very young grandchildren. I don't know what I'd do with the information if I found out, definitively, that my ataxia was hereditary. Maybe I'm just doing it for my own peace of mind, as I wouldn't want to worry my children. I heard myself on recording machine one time too. Oh my! I realize I slur my speech, but I couldn't understand myself! No wonder people say ''pardon me" or "what" a lot to me...,ha! All I can do is try to speak slowly and enunciate my words. I agree with what you said regarding teachers and instructors in classrooms, paying more attention to kids behaviors! Maybe then, with evaluation and a proper diagnosis, a child could start physical therapy, and keep symptoms at bay for a longer period of time. In a perfect world...,ha! ;o)