I'm wondering if anyone else has this problem and what you do about it. I can walk for a bit in my house unaided. On short trips out i use a roller. At the mall or longer trips like the grocery store i use a wheelchair or scooter. I find as i get more tired my torso starts bobbling front to back until i can't walk. My neck gets the same sensation until i can't hold up my head. It falls back if i don't support it. It even happens when im in a scooter at the grocery store and I'm looking up at the shelves. When i get tothat point i can't walk when i get off the scooter. I have really slurred speech then too. I don't want to wear a cervical collar because i don't want to get weaker and i live in Florida and it's hot. Anyone have this problem? What do you do? I exercise 3 times a week with no improvement.
I have a problem where my head will jerk back and forth and find if my partner is near by that if she just touches my head it will stop and if I can get my own hands on my head the jerking stops.
And yes there are times my torso movements are a problem as well.
The movements are unsettling.
The most scary to me is when trying to make my way to the bedroom, wheelchair does not fit, my right leg seems at times not to receive a signal to move.
Dee:
I can related to what you said. My neuro says I got truncal ataxia. How about you?
Core exercises help some.
Yes core exercises crucial. I come from a place that resorting to a neck collar could actually contribute to a weakening of the neck to the point of no positive returns.
Chris said:
Dee:
I can related to what you said. My neuro says I got truncal ataxia. How about you?
Core exercises help some.
Chris,
My neuro said the same thing, but offered no solution or suggestions for how to deal with the neck problem. The torso i can deal with by using a walker or wheelchair. I do lots of core exercises, but nothing helps my neck.
My head bobs up and down as I walk so that I can't see properly unless I stop. Is this what you mean? I'm clearly not as bad as you because beyond what I've said, I don't really have a problem. I just put up with it. But it is a fairly recent addition to my other problems so it may get worse.
Hi Dee:
I went to UF for diagnosis and they gave me a 'truncal ataxia', unknown reason. You are the second person I met who has 'truncal ataxia'. They say my midline cerebellum is impacted so we have weak core, weak hip joints, shoulders and neck. I guess you have the similiar symptoms?
I searched the internet, not much information there. My doctor did not give me medicine and only some PT for core.
I have all kinds of tests excerpt for genetic test (too expensive, I am the only one in family have this), all negative results. How about your test results?
Chris
Chris,
I also went to UF. Because my symptoms were one visit than another the doctor thought i was exaggerating my problem. My brother has sca as well with similar symptoms. I changed to USF and really like them. I have not had genetic testing. It is $11,000 and my insurance doesn't cover it. Since i have abrother and our father had iti would rather spend the money for something i would enjoy more. I see my neuro at USF in June. I've gotten much worse since i saw her last. Hopefully she will have some suggestions. It's really painful when you can't keep control of your head. My neck is always sore. Hopefully yours won't progress to this. Thanks for the replies.
Do you know what type of ataxia you have?
No. I haven't had genetic testing. My insurance doesn't cover it. My brother is a disabled vet and goes to the VA. They don't cover it either. They are calling it SCA, type unknown for both of us.
Dee:
Thank you for reply! Do you have any positive test results at all?
Chris
I've. Had tons of negative test results as has my brother. My MRI showed some atrophy of my cerebellum. My father probably had it as well. He had a CAT Scan that also showed atrophy, but it was a long time ago before much was known. He had similar symptoms as me and my brother.
I've also had the feeling that some doctors think that I'm exaggerating.
Dee said:
Chris,
I also went to UF. Because my symptoms were one visit than another the doctor thought i was exaggerating my problem. My brother has sca as well with similar symptoms. I changed to USF and really like them. I have not had genetic testing. It is $11,000 and my insurance doesn't cover it. Since i have abrother and our father had iti would rather spend the money for something i would enjoy more. I see my neuro at USF in June. I've gotten much worse since i saw her last. Hopefully she will have some suggestions. It's really painful when you can't keep control of your head. My neck is always sore. Hopefully yours won't progress to this. Thanks for the replies.
Hi Dee:
This is what I copied from FB friend, he suggested following:
Shrugs are good. Allso you could try lying on a bench or bed with your heed over the edge. Lye on your back, belly, and each side. Carefully raise your head upward for reps. I saw a pro boxer do this to help him absorb punches. He wore a weight on a head band.
Hope this helps! And let us know.
Chris