Hi everyone. This is Joy--I'm new here. Thank you for the welcome. My husband of 47 years has ataxia. Looking back, he had episodes of loss of speech, muscle control, falling, but it was sporadic and we never heard the word ataxia. In October 2009 he suddenly was unable to talk, walk, use his hands, and was helped out of a restaurant physically. We spent the next 6 months (him in a wheelchair) being driven to Atlanta (Emory) to see an expert who takes rare cases. Six months of tests that came back "normal" and was told "You have to accept a new reality. I have a handful of patients like your husband where we have no answers." Devastating words. Then a local neurologist suggested we change his anti-seizure meds (38 years from traumatic brain injury from a blackjack to front and back of head during attempted robbery). The expert first said it would make no difference, then said cut back one pill a day for a week and observe. That was the answer--he could speak--a miracle! We had to wean off that med (Carbatrol) and wean on new one --Keppra. Then he had to go to physical therapy for rehab to use his body again. So he could walk and talk but was still weak and a shadow of his former self--no energy, no stamina, just sit. Lots of prayer and God answered my prayer and I found out about a supplement that made a huge difference in his energy - has been taking it since May 2011.
We are now going to EEG Neurofeedback for help with the TBI/seizures. At that dr's office I saw an article titled Gluten Ataxia. Wow! I never heard of that before. I found a new book called "The Virgin Diet" that is an elimination diet (7 things for 21 days) then reintroduce to see which of the most intolerant foods causes your problem. We are doing the 21 days now --should be the definitive way to determine any food problem. I have such a sympathy and empathy for everyone in this group. It seems that so little is known about this. I am a great researcher --I look for answers. I am here to learn more and to share anything I can to help. On swallowing--my husband had problems choking on his own saliva and swallowing too.
You are the perfect wife! I want to find someone like you. Gluten free helps with some people. Not all. You are going to find. You know more then the doctors. Your research will do good. Good luck perfect wife! (Joy) And do all you can.
I chock to on my own saliva. More then food.
Patience and Love - the best therapy! Remember that communicating what is happening to us can be very hard!
Thank you, Lori and Debus. Your remark about the doctors made me laugh out loud. It seems that all they know is to test and prescription meds. Wikipedia said anti-seizure meds cause ataxia. Not on the side effects listed on the paper, tho. I am on a mission to get him off meds. I am not on scrips at age 67 (knock wood). This elimination diet is helping him already (less problems talking--dysarthria) and less fatigue, so we will see after the 21 days which foods are a problem. I will do all I can--my husband's quote in standstill 4-way traffic was "Do something!--even if it's wrong!" So we do that now--try and see what happens. Debus, I just want to help anyone else with this horrible condition that doctors seem to know little about. Another good resource is www.pubmed.gov where doctors go to research--it is too technical for the lay person but it gives you an overview.
Just because he can’t today - doesn’t mean he can’t tomorrow!
Welcome! Everyone here is so helpful.
Let us know what you find out with the diet.
Hi Joy, I'm new here too.
What a wonderful caretaker your husband has found in a perfect spouse!
Please share what suppliment your husband is taking that has helped him!
And keep us posted on if a diet change helps.
Nice to meet you.
Take care of you too!
Thank you for your kind words. The supplement was featured on ABC Primetime in 2005 and has been researched by 25+ medical universities as it is considered a medical breakthrough. To see the ABC clip, go to www.abcliveit.com. I have done research on it for almost 2 years -- let me know if you have other questions about it or if you want to get it--no longer in stores. Joy
You are so wonderful. I am new to this community and I will probably say stuff that is not scientifically backed.
Unfortunately sickness is a business for some. Not all professions are that way, there are good and bad. As we progress as a species we see darwinism at its best "Survival of the Fittest". This said, some people love to capitalize on our un-wellbeing. I am no way saying this is true for you just want to give you some awareness.
THIS SITE will lead you to the right path I am sure. Sadly enough, many doctors do not deal with our stuff, just a fact. Some neuro's go a lifetime without notice of a rare disease.
It is a rare disease because we are a RARE people. BING! Just dawned on me.
Take everything you are NOT SURE about and throw it out. Our shared experience is the key to understanding and hopefully a cure in the future.
Put every Ataxia patient in a hotel for a month and I GUARANTEE we will figure this out.
Follow your intuition, sometimes thinking does us no good.
Much love to you
A rare disease Convention every February 29 should be in order. Rare day for Rare Diseases.
We are all unique.Our prognoses are different.We have some things in common but sometimes we baffle ourselves and the Neurologist.Try things,it might take a time especially the gluten free diet but we can do it by a process of elimination.
It has worked for some,finally if nothing makes any difference there is acceptance.This is the hardest thing of all.But even then you can find positives.
I for example have some of the symptoms but not all. I have difficulty talking and moving but I have no swallowing or tiredness problems and may never get them.I think the people on this site are very brave and I find them hugely inspiring.
Just a quick hello and welcome. :)
Welcome Joy! You are truly you husbands angel with all your loving help/research. Everyone with an illness/disability needs a patient advocate like you...,bless you! Anyway, you're so correct when you say that little is known about ataxia! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago. My neurologist and I have no idea why I have this, as I was always so healthy and active. All my tests (blood, nerve/muscle, genetic) were negative. The only positive test was my MRI, which showed atrophy of my cerebellum. I find that exercise for strength and balance helps me more than anything else. Anyway, enough about me! Glad you found this site, as there are wonderful, helpful people on here! We all can be supportive, as we understand what it's like to have ataxia! Although there are different types and degrees of ataxia for different reasons, we all share common symptoms. Ataxia is frustrating and challenging so this is also a safe place to "vent"! You/your husband are not alone in your journey! My best to both of you...,;o)
Hello Joy and Welcome!
I too am a type of medical anamoly to my specialists, particulary because I am also a Lupus patient with numerous symptoms. I have been blessed with a very kind and caring spouse as well who would take this all away from me if he could!
Just keep on being there for your husband and help in any way you are able. Just remember to take care of yourself as well!
We are all in this together and here for one another!