Another way of holding symptoms at bay is exercise. I'm a big cyclist, and I have found that my cycling has improve my entire body. And the way I improved my voice was by singing karoake.
Hi Michael,
I would never be able to balance enough to ride a regular bike. How do you manage it, or is it a special bike?
Michael Geilen said:
Another way of holding symptoms at bay is exercise. I'm a big cyclist, and I have found that my cycling has improve my entire body. And the way I improved my voice was by singing karoake.
your daughter may have Ataxia you know the signs look for them now,and dont worry,as she may not and you have worried for nothing.and you can lose some functions mainley strengh you may not feel as strong ,think now rather than later of getting about,on line shopping etc
,any more questions ask after all, we are here for support for and of each other arnt we.John x
Indeed what kind of bike do you ride? I run for 1/2 an hour daily and do floor exercises By then I am sweaty and exhausted. I have a large three wheeler in a garage in Pennsylvania which I rode last summer quite happily but am dying to find a two wheeler but I am afraid to fall off. To keep my voice in shape, I read aloud five articles from the newspaper everyday. N
Michael Geilen said:
Another way of holding symptoms at bay is exercise. I'm a big cyclist, and I have found that my cycling has improve my entire body. And the way I improved my voice was by singing karoake.
I agree that everyone is different, especially depending on the type of Ataxia and that anyone who has Ataxia didn’t pursue it nor should be blamed for having it; some things will probably help, no matter the type:
-exercise, including balance, glut., and core practice
-meditation -stress relief, quiet the chitter-chatter in the mind, etc.
-affirmations - that whole “I am…” focus, even if he or she isn’t currently
-health-conscious diet
-positivity and positive outlook
-adopting a “how can I do ____?” instead of “I can’t do _____ anymore.”
-being involved in an enjoyed hobby that he or she can do
-a good night’s sleep, I think at least 6 hours + naps when needed - listen to whatever the individual’s body needs, without pushing it /going for longer and being completely wiped out
-being part of a group with commonalities - online, real-life, or both
-establish some goals - short-term and long-term and keep them realistic
-drink plenty of water
-listen to calming music
-stretch muscles, consider taking calcium both for possible cramps and/or bone strength
-smile and laugh
-brain games
-all-in-all, these things keep the body and mind going.
Phew! Most importantly, remember to whole-heartedly enjoy the good times.
A great resource that was mentioned is Dr. Tom Clouse. He has first-hand knowledge on Ataxia, and his website is filled with very useful information.
Another great resource is the National Ataxia Foundation (and there are members of that organization on this site).
Thanks for this list. Amazing that doctors know less than patients. My first neurologist, a woman whom I like, told me to sit-- this after I told her that I like to sit. But then I said, "How can I sit for the next 40 years??" Another neuro, when asked about food, said "eat anything that is tasty." There was no knowledge or interest or information regarding the things you mention. One Amerrican neuro did advise me to walk "even if you dont feel like it" another said "just imagine that you are getting glasses at a young age." And this was a guy at Columbia-Presbyterian Hospital in NY! Doctors, it seems, are only interested in medication not alternative stuff, I think. N
Hi Neta,
I recently considered a 3 wheeler. We would have to drive to somewhere I'd feel confident enough to ride it.
Where I live people drive around like maniacs, I would be too nervous here. I tried Pilates, and quite enjoyed
it but gave up because of the disorientation and nausea, I know I should have perservered! I'm most impressed
by the fact you run, I really can't remember the last time I did!
neta said:
Indeed what kind of bike do you ride? I run for 1/2 an hour daily and do floor exercises By then I am sweaty and exhausted. I have a large three wheeler in a garage in Pennsylvania which I rode last summer quite happily but am dying to find a two wheeler but I am afraid to fall off. To keep my voice in shape, I read aloud five articles from the newspaper everyday. N
Michael Geilen said:Another way of holding symptoms at bay is exercise. I'm a big cyclist, and I have found that my cycling has improve my entire body. And the way I improved my voice was by singing karoake.
Wow, this question has obviously 'touched' a lot of people's emotions. I thank you all for your suggestions and help.
I am a person that believes in getting as much information as possible, learning about all different forms of 'therapy' and then finding what works and does not given each indivual situation. I deeply appreciate learning from all of you. I am going to set aside any negative comments, because that is obviously due to miscommunication.
I love my daughter so very much. She is and always has been a light in my life. She has taught me more about love, acceptance, and treasuring the moments we are given. I do not blame her for anything. I want to help her live the fullest life she can while keeping her safe.
I expect that I will be learning a lot from all of you that have traveled this journey before us. I appreciate the community of support and look forward to what we can all learn together.
Speaking only for myself: The onset of this condition was certainly not overnight and did not even require a medical opinion for several years. In my case, I was required to climb stairs everyday. The exception here was these stairs were were industrial and the treads were welded metal grids such that you could see straight through them. Eventually I would freeze, have to test each step. Finally, generating a daily excuse not to do that part of my job.
Other oddities developed over months and years. However, my opinion only, the brain has ways of adapting, developing alternate pathways to accomplish the same goals. Quite often this 'healing' (for lack of words) occured at a pace similar with new symptoms developing. This occurred over years and often made me feel as if nothing was progressing.
Only if a new symptom arrises, I begin to think about it. I was once told 'don't sweat the small stuff'. I have gone from mobility aid inevitable to walking (or my version of it). All in 13 years. I have learned that acceptance of this condition is often harder on those around us!
Always Optimistic!
Loss of functions are inevitable.Since you are talking about your daughter, I'm assuming 'Friedreich's" Correct me if I'm wrong. There are over 55 different types. All are different flavors of the same thing, some pretty severe, some not. Everyone has the ability to slow the progression through ultra healthy diet, exercise to capacity, and attitude. A depressesd ataxian who sits on the couch and eats McDonald's alll day doesn't have a chance in hell. Everyone's ataxia is different based on the way they respond to it, but overall rules of thumb and generalizations DO apply. Living a healthy lifestyle helps everyone. A health conscious person is much better off than a non-healthy 'don't give a damn' kind of person who smokes and drinks to excess. An ataxian who walks, bikes. does water activity, stretches, etc., and eats lots of fresh fruits and vegetables will be better off than one who doesn;t. If further advanced, sitting exercise, chair yoga, etc. is a must.
The thing about ataxia is that no one, including most doctors, has any answers because there ARE no answers. Ataxia is a fly by the seat of your pants thing where you make your own answers.
I have deteriorated rapidly but I certainly don't have all the symptoms.There is no pain or fatigue or swallowing problems.
The doctors can't tell us if they don't know what caused it.There are a lot of us with CA and don't know what caused it.
It seems there is acquired and genetic and some of us that just don't know.It is only mobility and speech and handwriting that is affected with me.Only a small amount of the brain and not the whole lot for me.
I don't think anyone really can answer your question fully. Everyone can only tell you their take (exsperiences) having ataxia and give you some tips on how they slow this progression and possibly stop the progression. I'm blessed to say that is what actually happened with me, it stoped in my case. So I don't have the fear anymore that it will get worse. I focus on reversing it if I can. Why not I say?
I was gettting a MRI every year since 2007 to watch the progression. Once I stoped the combination of Gluten, all flours and refined sugars, packeged, focused movements etc., somehow the degeneration stoped.My Dr. said I'll now be getting a MRI ever two years because they still can't believe that it stoped. So yes it is possible regardless how we got this I believe. I came across it purley by accident.
Yes I still have symtoms of ataxia that I got before letting go of foods that interfear with the brain (cerebellum degeneration). I think ballance in all area's make a diffrence for me. Physical, Mentally, Spirtually, and Emotionally.
I also realize it's not an easy thing to monitor or do, but to me it's worth doing when something works!
Even my Dr.'s have said that once the progression starts it can't be stoped. I told them there is always a first time for everything.
Even Dr's don't give foods or our own bodies enough credit, nor any higher power (which is God for me). So it has to be indivigual right?! What seems to work for one doesn't always work for all. I think that everyone has a bit of a diffrent journey and they just need to turn over stones to see what works for them (within moderation that is-the more natural the better for me). This gives me some feeling of being in a little control of it and give me a reason why I have ataxia!
I'm actually greatful that I aquired ataxia now. It took me a long time but through this I've met alot of great caring people and am much less judgemental about life now.
Am I correct in understanding that you believe your ataxia is linked to the foods you were eating?
Because, as new to this as I am....learning something new nearly every 'minute', I am convinced this is partially linked to gluten in my daughter's case. She was also diagnosed with celiac disease this past August. She was severally effected by gluten, more than the doctor's even believed. They kept telling me that they didn't think her stomach aches had anything to do with gluten. But I insisted they test her for gluten sensitivity. Turns out she reacts very severly to gluten. I have since wondered if this a result of eating gluten for the first 6 years of her life. Guess I could ponder this forever, and I might not ever get an answer, but it is an intreging idea. I just wonder if her brain will be able to 'repair' itself or if what is done is done.......will progress? can we stop it? questions, questions....
Jeannie Ball said:
I don't think anyone really can answer your question fully. Everyone can only tell you their take (exsperiences) having ataxia and give you some tips on how they slow this progression and possibly stop the progression. I'm blessed to say that is what actually happened with me, it stoped in my case. So I don't have the fear anymore that it will get worse. I focus on reversing it if I can. Why not I say?
I was gettting a MRI every year since 2007 to watch the progression. Once I stoped the combination of Gluten, all flours and refined sugars, packeged, focused movements etc., somehow the degeneration stoped.My Dr. said I'll now be getting a MRI ever two years because they still can't believe that it stoped. So yes it is possible regardless how we got this I believe. I came across it purley by accident.
Yes I still have symtoms of ataxia that I got before letting go of foods that interfear with the brain (cerebellum degeneration). I think ballance in all area's make a diffrence for me. Physical, Mentally, Spirtually, and Emotionally.
I also realize it's not an easy thing to monitor or do, but to me it's worth doing when something works!
Even my Dr.'s have said that once the progression starts it can't be stoped. I told them there is always a first time for everything.
Even Dr's don't give foods or our own bodies enough credit, nor any higher power (which is God for me). So it has to be indivigual right?! What seems to work for one doesn't always work for all. I think that everyone has a bit of a diffrent journey and they just need to turn over stones to see what works for them (within moderation that is-the more natural the better for me). This gives me some feeling of being in a little control of it and give me a reason why I have ataxia!
I'm actually greatful that I aquired ataxia now. It took me a long time but through this I've met alot of great caring people and am much less judgemental about life now.
I wonder that myself because of the resultse that I have gotten too! I was given a Gliddian blood test and was told that I was normal/boarder line. My Dr. suggested to go off and see how I felt. She said that's the really only test. Blood tests etc can be falty.
After 3 days off all flours and refined sugars along with Gluten (in a bottle that has 2 or more spices in it usually) colors even became more clear to me. So that incurraged me to stay off. After 3 months I lost a siatic nerve pain that I was having. So to find out they say I need to go back to having everything then get tested again, but my thought is why?! I'm not willing to take the chance of it starting up again. To me it's just choices I see it as poison to my system so I'm turned off to it now. I don't miss it exspecially since I'm getting such great resultse. My Dr's are impressed and watching me closely. :0)
Mom of ataxic said:
Am I correct in understanding that you believe your ataxia is linked to the foods you were eating?
Because, as new to this as I am....learning something new nearly every 'minute', I am convinced this is partially linked to gluten in my daughter's case. She was also diagnosed with celiac disease this past August. She was severally effected by gluten, more than the doctor's even believed. They kept telling me that they didn't think her stomach aches had anything to do with gluten. But I insisted they test her for gluten sensitivity. Turns out she reacts very severly to gluten. I have since wondered if this a result of eating gluten for the first 6 years of her life. Guess I could ponder this forever, and I might not ever get an answer, but it is an intreging idea. I just wonder if her brain will be able to 'repair' itself or if what is done is done.......will progress? can we stop it? questions, questions....
Jeannie Ball said:I don't think anyone really can answer your question fully. Everyone can only tell you their take (exsperiences) having ataxia and give you some tips on how they slow this progression and possibly stop the progression. I'm blessed to say that is what actually happened with me, it stoped in my case. So I don't have the fear anymore that it will get worse. I focus on reversing it if I can. Why not I say?
I was gettting a MRI every year since 2007 to watch the progression. Once I stoped the combination of Gluten, all flours and refined sugars, packeged, focused movements etc., somehow the degeneration stoped.My Dr. said I'll now be getting a MRI ever two years because they still can't believe that it stoped. So yes it is possible regardless how we got this I believe. I came across it purley by accident.
Yes I still have symtoms of ataxia that I got before letting go of foods that interfear with the brain (cerebellum degeneration). I think ballance in all area's make a diffrence for me. Physical, Mentally, Spirtually, and Emotionally.
I also realize it's not an easy thing to monitor or do, but to me it's worth doing when something works!
Even my Dr.'s have said that once the progression starts it can't be stoped. I told them there is always a first time for everything.
Even Dr's don't give foods or our own bodies enough credit, nor any higher power (which is God for me). So it has to be indivigual right?! What seems to work for one doesn't always work for all. I think that everyone has a bit of a diffrent journey and they just need to turn over stones to see what works for them (within moderation that is-the more natural the better for me). This gives me some feeling of being in a little control of it and give me a reason why I have ataxia!
I'm actually greatful that I aquired ataxia now. It took me a long time but through this I've met alot of great caring people and am much less judgemental about life now.
Mom Of Ataxic, If your daughter has confirmed Celiac Disease, she MAY have "Gluten Ataxia". Therefore, if this is the case, I assume she already eats gluten free. If her ataxia was caused by the gluten she had in her diet for the first six years, she may improve or at least "stop" the progression of symptoms. Google "Gluten Ataxia" for more info. Just a thought. There are many "Gluten Ataxia" people on this site who could give good advice if this is the case. I have Sporadic Cerebellar Ataxia (diagnosed 10 years ago) which is of unknown cause. I have no idea why, as no one in my family as far back as I know has/had this. Guess I'm just special...,ha! Seriously, there are many different types and degrees of ataxia, some are hereditary (identified genes), some are not (idiopathic).I know you are just worried about your daughter and what the future holds for her. Exercise for strength/balance and eating as healthy as possible helps my ataxia. My ataxia has progressed, albeit slowly. Everyone is different though, depending on the type of ataxia they have, the age they were diagnosed and whether it's hereditary or not etc. Unfortunately, for most ataxia's there's no cure-yet-although research is being done and there's more awareness regarding rare diseases. Hold onto this hope! You/your precious daughter are not alone in this journey! My best to you..., ;o)
Yes "Mom"! I have Celiac Disease and was diagnosed with Gluten Ataxia at the same time (Jan 2009). I now think of food as medicine. When I found how much going 100% gluten free helped me, I started looking at other foods that perhaps needed to be eliminated as well. Processed foods where quickly out of my life. Then sugar and dairy.
It took about a year of being gluten free for me to start feeling normal again. However, I was already over 50 years old when I got the diagnosis, so it's much harder and takes longer for someone my age to recover. I was given prescription pro-biotics and gut anti-inflammatory medications. I take pro-biotics on a regular basis. I now eat mostly whole veggies and fruits. I mentioned in my first post Dr Joel Fuhrman's Eat to Live. My husband and I started this plan about 6 months ago and people have been saying to me "You look really good". I didn't initially attach that to the dietary changes, but I do now.
If you want the very best for your daughter,(and it sure sounds like you do) I strongly encourage you to have your whole family eat this way. I know this is a huge thing to suggest, but if it can stop or even reverse her ataxia, I have to believe you would do it in a heartbeat. Having your whole family eating this way makes it normal for her and keeps her safe from any inadvertent gluten. If I eat even a microscopic amount of gluten my ataxia is back full force and I'm using my walker or wheelchair again for at least three weeks. Then the extreme fatigue keeps me at home for another 3-4 weeks. In 2008 I was essentially bed bound most of the year. Having this diagnosis has been a blessing. This is something I can do and be proactive. It's been a tremendous change for my health.
Dr Marios Hadjivassiliou is the world expert on gluten ataxia. Most doctors are clueless about this diagnosis.
http://www.etseq.urv.es/cdmedics/pdfs/Celiac%20disease%20from%20gut...
I hope this gives you hope for a more "normal" life for your daughter. Kids can recover from gluten ataxia quickly but even if they have NO gut symptoms they can still be having hidden damage going on inside if they eat any gluten. I never had any gut symptoms and yet my upper GI scope showed total damage.
Arm yourself with knowledge and again, have hope. Your daughter needs to see that you have hope. Encourage her to do more, have fun, be a kid! Let her (and any siblings) help you prepare healthy foods. Walk, dance, play, wii fit, whatever she enjoys to keep her moving and do it with her. She can build endurance and strength.
You will have periods of anger, frustration, mourning and fear. That's normal. Just don't stay there. Keep it in perspective.
Keep up the good work!
Mom of ataxic said:
Am I correct in understanding that you believe your ataxia is linked to the foods you were eating?
Because, as new to this as I am....learning something new nearly every 'minute', I am convinced this is partially linked to gluten in my daughter's case. She was also diagnosed with celiac disease this past August. She was severally effected by gluten, more than the doctor's even believed. They kept telling me that they didn't think her stomach aches had anything to do with gluten. But I insisted they test her for gluten sensitivity. Turns out she reacts very severly to gluten. I have since wondered if this a result of eating gluten for the first 6 years of her life. Guess I could ponder this forever, and I might not ever get an answer, but it is an intreging idea. I just wonder if her brain will be able to 'repair' itself or if what is done is done.......will progress? can we stop it? questions, questions....
Jeannie Ball said:I don't think anyone really can answer your question fully. Everyone can only tell you their take (exsperiences) having ataxia and give you some tips on how they slow this progression and possibly stop the progression. I'm blessed to say that is what actually happened with me, it stoped in my case. So I don't have the fear anymore that it will get worse. I focus on reversing it if I can. Why not I say?
I was gettting a MRI every year since 2007 to watch the progression. Once I stoped the combination of Gluten, all flours and refined sugars, packeged, focused movements etc., somehow the degeneration stoped.My Dr. said I'll now be getting a MRI ever two years because they still can't believe that it stoped. So yes it is possible regardless how we got this I believe. I came across it purley by accident.
Yes I still have symtoms of ataxia that I got before letting go of foods that interfear with the brain (cerebellum degeneration). I think ballance in all area's make a diffrence for me. Physical, Mentally, Spirtually, and Emotionally.
I also realize it's not an easy thing to monitor or do, but to me it's worth doing when something works!
Even my Dr.'s have said that once the progression starts it can't be stoped. I told them there is always a first time for everything.
Even Dr's don't give foods or our own bodies enough credit, nor any higher power (which is God for me). So it has to be indivigual right?! What seems to work for one doesn't always work for all. I think that everyone has a bit of a diffrent journey and they just need to turn over stones to see what works for them (within moderation that is-the more natural the better for me). This gives me some feeling of being in a little control of it and give me a reason why I have ataxia!
I'm actually greatful that I aquired ataxia now. It took me a long time but through this I've met alot of great caring people and am much less judgemental about life now.
Hi Julie,
Do you ever get an itchy rash when you've had gluten?
Beryl,
I don't get an itchy rash. That sounds like a form of Celiac Disease called "dermatitis herpetiformis". Many times the rash will be on elbows but can be anywhere.
http://celiacdisease.about.com/od/whatisceliacdisease/a/DermatitisHerp.htm
I hope that helps!
Did anyone answer? I need to know as well. Increased apnea at night even with Cpap, for example.
Did anyone answer what, Ali?
Alijames said:
Did anyone answer? I need to know as well. Increased apnea at night even with Cpap, for example.