You asked the million dollar question Jill! I have ataxia 24/7, and some days are better than others. I have no idea why! I know if I over-do activity one day, I pay BIG time the next (I'm really fatigued and have to rest a lot), although I can be really fatigued, and my ataxia symptoms are worse some days, even if I haven't over-done the day before. What's up with that? In answer to your question Buffalo Bill, I learned a lot more from this site and my own research, then from my neurologist. My neurologist has told me to be as active as possible (easy for him to say...,ha!). I do exercises for strength and balance (as long as I can hold onto something, I'm good to go), as well as walk on my treadmill, as I can hold on. Ny neurologist said there has been successful studies(on rats), showing the brain can make new neural pathways. He told me the key is to keep challenging myself. For example, I stand at the ledge between my kitchen and family room and balance on one leg for as many seconds as I can, without holding on. I switch legs and do the other. I keep trying to up the seconds. I do this several times, switching legs. If I start to lose my balance, I grab onto the ledge. Glad to hear the gluten free diet is helping with your headaches! ;o) My neurologist also doesn't keep doing MRI's, as he said that even if atrophy increases, it doesn't necessarily mean ataxia symptoms are worse. I don't know how I feel about that. I was diagnosed 10 years ago and had an MRI when diagnosed and one 5 years later. My opinion is that the medical community doesn't know that much about ataxia! So, we have to help each other, as we know how we feel! Also, I agree Marie, Dr. Tom Clouse does know a lot about ataxia. He has a good website! ;o)
What has recently helped me is understanding why I am wobbly.My brain can't do certain things anymore but it can do some things.I willmake the most of what I can do....I am seeing my Neurologist this month but I am not expecting a miracle cure. I feel grateful for everything I have \and see each day as a bonus.I am not going to struggle anymore and there is a huge relief in feeling that there is only part of my brain that is affected.I cannot walk and talk and my eyes are not as good but I can still see and hear and read and watch rubbish on tv and see what my children are up to on facebook.
Buffalo Bill,
I had experience with two doctors, who I feel added value during my visits. Originally I saw Dr. Christopher Gomez, who was in MN when I first saw him. Eventually he moved to Chicago, which was better for me, since I'm in Ohio. Wanting to be closer to home, he referred me to Dr. Todd at U of M in Ann Arbor, who I've been seeing for 4 years. Both doctors made suggestion on eating better with exercise and made me all around feel better about everything.
Thanks,
Gianluca
I had seen 3 different neurologists to no avail before I was referred to a geriatric balance disorder doctor by my physical therapist. I am not a geriatric patient, but this doctor saw me anyway. He, like the other neurologists, admitted he did not know much about the disease, but he, unlike the others, did not just shrug his shoulders and turn me away. He did a lot of research, and because cerebellar ataxia is often inherited, he drew blood and did more testing. From what he told me, one type of this ataxia has to due with gluten in the diet. He referred to that type as being reversible. In other words, the gluten was causing the ataxia, and by removing gluten from the diet, you could reverse the symptoms. Therefore, if not eating gluten is helping you then by all means, keep it up! He could tell from the genetic testing he did on me that I did not have the kind that was reversible. I am also on gabepenton, used for nerve pain. He is taking me off this medication because he said that it affected the cerebellar in ways that can make symptoms worse such as balance, and speech. I live in upstate NY. This doctor is located in Rochester NY. He does not specialize in ataxia, but after seeing multiple doctors myself, including Pain Management Specialists, ENT's, P.T's and other neurologists, this doctor is willing to go the extra mile to learn more about our situation. Let me know if I can be of further help.
Being that you're in upstate NY, would it be to far for you to go to Ann Arbor, MI? That's where I go, and the doctor I see was also in the geriatrics area, but specialized in Ataxia, he just moved to the main hospital. His name is Dr. Peter Todd, I like him a lot. Also at the same hospital and in the same group is Dr. Henry Paulson, who is also a specialist. I was originally diagnosed by Dr. Christopher Gomez, who recommended me to Dr. Todd and he is very well known in the Ataxia world, he's In Chicago, much further for me being in Ohio. I would definitely recommend seeing a specialist, not just a neurologist, although, they should know the signs. From the sound of it, you should have a specialist make the call on the Gabepenton. If interested in any of them, let me know so I can give the information.
Good luck,
Gianluca
Hi Gianluca, It really is a small world, as I live in Michigan and see Dr, Shakkottai at U of M. He's a neurologist and researcher for ataxia. I was diagnosed ten years ago with my ataxia, and saw Dr. Gilman, also a specialist in ataxia (at U of M) up until he retired in November 2012. I started seeing Dr, Shakkottai in January of this year. I like him very much! I've heard of Dr. Todd and Dr. Paulson. Glad you found a doctor you like! My best to you..., ;o)
I'm glad too, I wasted 2 years seeing doctor Gilman. Dr. Todd was telling me about the new Ataxia doctors, my guess is your doctor is younger, like doctor Todd, l that's a good thing :).
Good luck with all.
Gianluca
Yes Gianluca, Dr. Shakkottai is much younger than Dr. Gilman. It's been refreshing to see someone else, and get new feed-back/idea's. The only thing I question is Dr. Shakkottai's view on MRI's. Dr. Gilman believed an MRI was necessary every 5 years. I was diagnosed with ataxia 10 years ago. Therefore, I've had two MRI's thus far, one at diagnosis(which showed atrophy of my cerebellum) and one 5 years ago (which showed a bit more atrophy). When I saw (for the first time) Dr. Shakkottai in January of this year, he said that additional atrophy in the cerebellum does not necessarily indicate symptoms are going to be worse. Therefore, he did not order one. I don't know how I feel about that. What do you or others think? Also EdMoose, I hope your wife continues to improve with medication! That's interesting information about lyme disease...,thank you for sharing! ;o)
Hi Rose,
I had my ataxia for about 8 years. In that time I am now with my second doctor. And I did have 2 MRI"s. But the second one I did order because I wanted to know if there was a change or what. Because the first doctor I saw could not see anything wrong. That's why I'm not seeing her anymore. I go back In May with a new MRI. So she will compare. Yes I feel they should do an MRI every 5 years. And I think they would
Lori
Thanks for your opinion Lori! I agree, as I thought I'd be up for another MRI. I see my neuro. again in July, so I'm going to talk with him about it again. Hope all's well with you! ;o)
Rose,
That is certainly questionable as to why he feels that way. I'm sure that in know way effects his ability, however, you're the patient and if you feel it's needed (if not for anything, but your knowledge) he should order it for you. If he's still apprehensive, then insist on the reasoning and if the atrophy doesn't necessarily mean it's worsening, how can he be so sure what exactly it is without the MRI? I know if I could do MRI's, I would be insistent on it. The fact that you say "I don't know how I feel about that" says you don't like that, we have to be vigilant about our health issues :).
Gianluca
rose said:
Yes Gianluca, Dr. Shakkottai is much younger than Dr. Gilman. It's been refreshing to see someone else, and get new feed-back/idea's. The only thing I question is Dr. Shakkottai's view on MRI's. Dr. Gilman believed an MRI was necessary every 5 years. I was diagnosed with ataxia 10 years ago. Therefore, I've had two MRI's thus far, one at diagnosis(which showed atrophy of my cerebellum) and one 5 years ago (which showed a bit more atrophy). I don't know how I feel about that. What do you or others think? Also EdMoose, I hope your wife continues to improve with medication! That's interesting information about lyme disease...,thank you for sharing! ;o)
"Yes, until you are diagnosed and No, afterwords",
However, it is good to have the guidance with the ongoing issues of what to expect as the disease progresses.
"So, better to have a neurologist than not to-"
Belonging to a support group helps.
All as quoted by my Honey who has Ataxia.
Hi..My father suffered with Ataxia and lived with the problem for about 7 years. We lost him just a few days back. I am sure that he got no significant help from any sort of neurological treatment. In fact no neurologist promised any sort of assurance. But my dad with the help of my mom tried several other treatments in India. I would definitely recommend any one against taking accu puncture if at all you plan to do so. My dad did it but I think it worked against him by quickly deteriorating his condition. However some ayurvedic massages seemed to relax him and bolster him body coordination.
Maintaining a good diet is definitely recommended. Something my dad did not do which caused obesity and organ failures in addition to his symptoms of ataxia.
My sympathy goes out to you Priya, for the loss of you dad! Thank you for you advice at this difficult time..., ;o)
Thanks Rose..I am glad to offer all that I can, though I did not personally experience it but have seen my father deal with it..
rose said:
My sympathy goes out to you Priya, for the loss of you dad! Thank you for you advice at this difficult time..., ;o)
I have to agree. After 20 years of progressive decline, neurologists have impeded suggestions and observations from neuro ophthalmology, ear Ned throat, rehab specialists, orthopedist, PT, speech and others who have tried to help. Love to say I am a nut case and that all psych Evals are wrong, ignore advice from Hopkins Evals…got the gluten info from my GI guy.
Jeff,
I participate in clinical trials and various NIH studies at university hospitals in a desire to help future generations. My experience with very skilled and knowledgeable physicians and geneticists leads me to believe that one can manage the decline but certainly not reverse it's course. in short, there is not much that they can do for me a 60 year old with SCA 6 but perhaps for my adult children.
Stay in good physical shape as other general health issues can develop that can make this experience much worse. I aw it happen with my father.
All the best,
Bob H.
Dear Buffalo Bill, My neurologist has been very helpful for my ataxia, although he is working with very limited information regarding ataxia. I see him every 6 months. At my last appointment, he gave me a list of exercises to do. He also told me there's been successful studies in rodents showing their brains make new neural pathways, to compensate for the atrophied ones. He said the key to this is to exercise for strength and balance at least 1 hour daily, and to keep challenging yourself. For instance, I stand at the ledge between my kitchen and family room, in case I have to grab on to keep from falling. Without holding on, I balance on one leg/foot for as many seconds as I can, and then the other leg/foot. I keep trying to up the seconds, hence challenging myself. He also said to be as active (safely) as possible. I use a cane, but will go for a pleasure walk with trekking poles. Although I have a handicap parking card, I will park a distance from the store, and my cane and I will walk from there, as it's good exercise. ;o)
I use to cut hair for a living before my ataxia. I had a few Dr's and Nero's as hair clients. When your a hairstilist your like a bartendar you seem to get people to really not only set their thoughts out but their guts! :0)
I came to a conclusion that all of them are just people too. They have good days and bad. Yes they have more book knowledge but very very few have ever had exsperianced what we do daily. They can only give us their best idea's and guesses.
I figure their thoughts plus mine could maybe work. After all I think we all have some thoughts that can work for us and help us out. If not dig for them, something that will help. I think your doing that being on here and asking for other's thoughts. Your doing great! Keep digging! I figure if one's not giving me what I want after a few times then that chapter is closed and I move on until I find something/one that works!
The mind boggles.Everyone gets out of the way when they see me with scissors advancing towards them.
You are doing a good job Jeannie by being positive.