Okay, okay I get it, no one wants to outright say that my daughter is going to deteriorate and noone wants to predict how quickly, but can someone please just be honest with me........with a diagnosis of ataxia...........is the progression of losing bodily functions inevitable?
No.
The course of ataxia is different with every person regardless of the type that someone has. Eating radically healthy (See Dr Joel Fuhrman- Eat to Live) and consistent exercise can slow the progress too as can other treatments.
Have hope and you can give your precious daughter the gift of hope! :-)
Well said, Julie. Some people can hold their progression at bay, I believe.
I am not sure about anything when it comes to ataxia.. No one really says anything-- I mean doctors--- on these type of sites or anywhere. Example: there are hopeful mini-explosions of "cure" every so often however then all of a sudden these balloons disappear. No one says anything. There is only silence. Since, it seems, that no one knows anything, I don't see why you have to assume anything. Find a routine that works for your daughter and keep a journal of her accomplishments or setbacks. Make sure she keeps her muscles in shape, eats and sleeps right, I have heard that in children (is she a child?) ataxia can disappear. I hope it does. Don't think about it 24/7. There is a strong psycological factor at play-- that much I can say. If you believe the worst, it might come true. Best thing: don't think too much. Good luck. Neta
There was a question similar to this, at one of the Ataxia UK annual conferences. The response was that the cerebellum seldom showed further shrinkage but the body's ability to cope with the symptoms is more difficult as we age .. hence the progression of disability.
Some ataxia's present problems with heart and bladder but not all of them.
If you need further reassurance, Ataxia UK have a helpline and research team available to answer queries.
Check out Ataxia UK website.
Take care, Patsy
READ THIS WEBSITE!!!! www.walkingwithataxia.com with DR.THOMAS CLOUSE it helps a lot!!!! Good Luck!!!
Hi, On here most of us agree on one thing, that no two cases are exactly the same, they don't necessarily follow the same course. A mother's first response is to protect, be prepared, hope to soften the blow to a child at the very least. I believe that no-one knows most outcomes for sure. Arm yourself with knowledge of the condition, ask your doctor plenty of questions.
Hi,
Staying positive will help a lot in keeping the ailment at bay. Always imagine strongly that your daughter is going to improve very sincerely and attract the positive energies towards her. Exercises and right diet will help very much too. I suffer from PMA and I am slowly deteriorating but I have not given up for I try very sincerely to attract positive vibrations and keep the progression at bay. We cannot conquer the ailment but we can bring some color to our living to move on cheerfully. Will pray for your daughter and good luck.
I'm going with "NOT"! Yes, I know that everybody is different and not all will respond with the same degree of ... lack of progression. I was diagnosed 13 years ago with a Unknown type of an SCA, with healthy eating habits, plenty of hard exercise, DAILY aerobics and some specific balance and CORE training, God has BLESSED me more than I could even imagine. My goal was to slow or even stop the progression - well, I now talk & walk better than I did then! God uses "means" as the way to bless us - a good friend with F/A
"if you have faith, you have hope and if you have hope, you have everything"
Well said you 2 thqats right,so do as i do,HEAD DOWN AND GET ON WITH IT if you see me from the outside the sun shines,but outside the rain falls i dont believe it thats me ,and you Head Down i hope by the way i just want to love my type again John x
I like your poem! N
Hi I agree with everything you say except one thing. I wonder if doctors know anything either. N
Beryl Park said:
Hi, On here most of us agree on one thing, that no two cases are exactly the same, they don't necessarily follow the same course. A mother's first response is to protect, be prepared, hope to soften the blow to a child at the very least. I believe that no-one knows most outcomes for sure. Arm yourself with knowledge of the condition, ask your doctor plenty of questions.
What are you referring to?
Lori said:
You sound frustrated! You asked the Forum about chairs. You received some good answers. You Never asked about the deteriorate of the body. I take offense to that statement. Getting ataxia is NOT your daughters fault. It is very sad. Think you should do whatever you can to make your daughters life easier and Love her. Instead of worrying about how fast she is going to deteriorate. Like Julie said. Everyone's ataxia is different! Everyone does different thing to handle it.
Lori
Yesturday she asked on mobility Chairs. Today: Nobody will Out right say my daughters going to deteriorate.
neta said:
What are you referring to?
Lori said:You sound frustrated! You asked the Forum about chairs. You received some good answers. You Never asked about the deteriorate of the body. I take offense to that statement. Getting ataxia is NOT your daughters fault. It is very sad. Think you should do whatever you can to make your daughters life easier and Love her. Instead of worrying about how fast she is going to deteriorate. Like Julie said. Everyone's ataxia is different! Everyone does different thing to handle it.
Lori
Thats quite right,i agree but us men love our opposite as well,too little is knowen about our illness Ataxia,thats why we need to be together.United the whole world us all together ,there is more to life than a cold.John x
neta said:
Hi I agree with everything you say except one thing. I wonder if doctors know anything either. N
Beryl Park said:Hi, On here most of us agree on one thing, that no two cases are exactly the same, they don't necessarily follow the same course. A mother's first response is to protect, be prepared, hope to soften the blow to a child at the very least. I believe that no-one knows most outcomes for sure. Arm yourself with knowledge of the condition, ask your doctor plenty of questions.
Now Neta, I know you challenge everything, and I agree I think we should continually ask questions. Doctors know
how to diagnose the condition but you're right they can't predict precisely the outcome. Continual research into
rare diseases will be the answer. There will be no quick fix, we all know that. I'm just glad people are doing research.
In the meantime, we need to be armed with information and help ourselves as much as possible. Sites like this, where
we can share, are a big step forward. Support from fellow Ataxians cannot be under estimated. I had no idea about
IVI infusions (that may be the wrong description) until you mentioned them, I've learnt a lot and I think because of that,
life is much more bearable.
neta said:
Hi I agree with everything you say except one thing. I wonder if doctors know anything either. N
Beryl Park said:Hi, On here most of us agree on one thing, that no two cases are exactly the same, they don't necessarily follow the same course. A mother's first response is to protect, be prepared, hope to soften the blow to a child at the very least. I believe that no-one knows most outcomes for sure. Arm yourself with knowledge of the condition, ask your doctor plenty of questions.
Sorry but I don’t see anywhere in her post were she remotely blames her daughter for her attaxia she asked about chairs wouldn’t anyone and she’s asking for info on what maybe another effect. Seems a bit silly to call her out for it. Mom of Attaxia sorry I haven’t seen your profile. I had the same questions when my daughter was diagnosed with attaxia at 1 and Half she is now 4 she as had MRI Scans genetic testing and her consultant still does not know what’s causing it so like many others know one can actually say what will happen as so little is known. At the moment both sides of samanthas body have constant tremors she can walk but is a little unstable. Since her last check up 6 months ago they told she as some muscle weakness in her hands and can not put enough pressure on to write with a pencil and as some deteriation in her sight in her left eye. But that’s my daughter I can’t say if this will happen with yours cause you never know every case is indivdual
I see. Indeed, she must feel frustrated . N
Lori said:
Yesturday she asked on mobility Chairs. Today: Nobody will Out right say my daughters going to deteriorate.
neta said:What are you referring to?
Lori said:You sound frustrated! You asked the Forum about chairs. You received some good answers. You Never asked about the deteriorate of the body. I take offense to that statement. Getting ataxia is NOT your daughters fault. It is very sad. Think you should do whatever you can to make your daughters life easier and Love her. Instead of worrying about how fast she is going to deteriorate. Like Julie said. Everyone's ataxia is different! Everyone does different thing to handle it.
Lori
Katherine I did not say she blamed her daughter. I said: getting ataxia is not your daughters fault. And in my post I do not see where I said she blames her daughter. I'm sorry I have an option. And I am really sorry for children with ataxia. But they do have people to Love them and take care of them. There are a lot of us that are alone with nobody to help. Ataxia is not kind at all! For now on I will keep my mouth shut.
Lori
Yes, I realize that doctors, primarily neurologists know, however there is not much they can do. I am going for my third opinion on Sunday. Frankly, I don't know why I bother--- I m sure he will say and do what I have heard and seen before. But he is the head of neurology at Hadassah Hospital, so I will go. Another dr. there, named Karusis, a Greek guy, is doing a "test" but he dismissed me, saying my ataxia is not so bad, and that he idn't sure that his medication is useful for ataxxia.. I keep searching. I can't tell if the IVIg is helping or hindering but the doctor's who are giving it to me say it is helping very subtly. Dunno.... All I know is that my HMO hates me by now. Once never sick, I now have demands which cost mucho dollars. Too bad. I worked for a long time and paid into the system. Also, I never imagined this could happen to me. I feel better very late at night. Weird. My shrink says its because,by the, all the "happy mood" pills are in my system. N
Beryl Park said:
Now Neta, I know you challenge everything, and I agree I think we should continually ask questions. Doctors know
how to diagnose the condition but you're right they can't predict precisely the outcome. Continual research into
rare diseases will be the answer. There will be no quick fix, we all know that. I'm just glad people are doing research.
In the meantime, we need to be armed with information and help ourselves as much as possible. Sites like this, where
we can share, are a big step forward. Support from fellow Ataxians cannot be under estimated. I had no idea about
IVI infusions (that may be the wrong description) until you mentioned them, I've learnt a lot and I think because of that,
life is much more bearable.
neta said:Hi I agree with everything you say except one thing. I wonder if doctors know anything either. N
Beryl Park said:Hi, On here most of us agree on one thing, that no two cases are exactly the same, they don't necessarily follow the same course. A mother's first response is to protect, be prepared, hope to soften the blow to a child at the very least. I believe that no-one knows most outcomes for sure. Arm yourself with knowledge of the condition, ask your doctor plenty of questions.