Wow go to bed! ha, ha
I see my neurologist yearly, as he checks to see how my ataxia has "progressed". He looks for signs of multiple system atrophy or parkinsons disease. Every five years or so I have an MRI to see the changes in my cerebellum atrophy. I've basically learned all I know about ataxia from the web, other ataxia sites or people that share ataxia (like this site). Because this is no "cure" for ataxia, I try to eat healthy and exercise for strength and balance. On my bucket list is to get a monthly massage for my tight muscles and take a yoga and/or pilates class. I did physical therapy for over a year, which was helpful, and continue to do the exercises at home. I've also been researching stem cell treatment. In fact, today I posted a question about it on the forum, although it hasn't come up yet. Wish I knew more of what could help ataxia, but I know as much as the next person, which apparently isn't much...ha! I live by the words, "I may have ataxia, but it doesn't have me"!
Somewhere here i have read that so 40 % of the Ataxia is not determined by the brain-genetics. So, having read one of the newest articles regarding investigations/autopsies of Ataxian Brains (German), and afterwards trying to exercise some mathematics:
100 % determination = 100 points
60 % determination = 60 points
40 % determination by other = 40 points
Akita 60 pts Ataxia genetics, 40 pts other = 100 points
Rose 60 pts Ataxia genetics, 40 pts other = 100 points
Akita + Rose = 60 pts Ataxia genetics, 80 pts other = 140 points
(subsuming that at least one of us has got such genetic ataxia)
LivingWithAtaxia ... 1000 members 60 pts for Ataxia genetics 40 000 for other= 40 060 points
Actually unsure where to place the impact of Neurologists...
Dear Rose, discipline and exercise are so important, but it would be necessary to begin in childhood. My exercise experience goes back to childhood where i was doing training in a sport club. But i never was perfect in this discipline and i never used more of so 1/6 of my time for it. i know others are much better. Hopefully i can replace some exercise by reading studies? Don`t know. But this exercising is really important for me. Otherwise my health will get faster worse than necessary. But its decouraging for me to die in some years (from my added illnesses) or lying in bed, with closed eyes, in a caring home, on dirty feeding tubes. I hate it!
So i am thankful for everybody giving me hope.Exercise would be a hope for me. but i want to do it together with an experiment: Maybe some days in a Zen Monastery sitting chanting, bowing and walking, and doing some hand work, will improve my ataxia? Lets see. Today i will try to register in an Hungarian Zen Monastery for some day in community practise for some day. Must confess them that i would need a chair! Sitting pillow is not actually possible... I will then notifiy the forum when i would have fixed it. Furthermore i will visit a very ill friend in a Viennese hospital today, - and then to try to cancel as much as i can in Vienna - have already started to pack my things and to check the train times, - and then travel.Here in Vienna i am too much disturbed and too much in the internet to have a regular life... Lets see.
Have an nice day!
Watch, the morning bell is ringing! Morning sun has gold !
Thanks Akita! I hope you're friend gets better! Hugs to you... ;o)
Thanks! Somehow my friend is getting better. He has successfully used the walking cane during the day. When i came he was already too tired to stand up. In general its an unsatisfying situation. Seemingly - as i heard - he has got some metastasic cancer and some weeks ago a stroke. He does not see the banana when i show it to him and i must give it into his hands. He has been to weak to open the banana, but had a good appetite. The situation in the hospital is triste for him, not enough care. Sisters expect the friends and relatives to do the job - e.g. of supplying him with drinks. My friend is also confused in some extent. He ignores his illnesses totally, thinking he would not have to change his live, would go home at weekend. He also denies that he is almost blind. I offered him to bring a laptop to his room with mobile internet connection. There is a man who has actually got no free internet access (only for one hour per day in some library during the week) and this man would be helpful to him sitting beneath his bed, bringing him drings and other necessary things. He knows him from past days. Somehow this man is handicapped but nice. No, - he refused that - he does not want somebody sitting at his bed, having plans for the next days, walking outside with his dog which the mother of his son would bring to him, and beeing taken "home". He has got a tiny appartment in Vienna, with elevator, and could get some caring services here, - don`t know if sufficiently. His alternative would be to go the mother of his son where he had been most times in the last years, but she has got a job and seemingly does not care about him very much, not able to do the caring job. In my impression the nurses are very happy when anybody comes to visit him and want to mediate a solution for him that anybody would take care of him in the future. Yesterday he approached the idea probably trying to stay at home. i could not reach his "partner"-mother of his son (he is no more "together" with her) by phone, will try this again.He told me that this would not important, if i would try to reach her or not... I ve no idea what will happen next. it saddens me thinking of his situation, but i must also take care for myself, it would be too much to go to the hospital more often. Yesterday i was in a bad state of balance, probably also the internet is not healthy for me; the vibrations of the light take some strenght from me. Solutions will come. Thank for your virtual "ear". Have nice day! Akita
You sound as though you are a very caring and thoughtful friend, Akita! Hugs to you!
I see two neurologist one who is at USF and is an ataxia specialist. Go to National Ataxia Foundation it is most helpful and has a place to look for doctor in your area or close to you
Boy do I share your sentiments and frustrations. It seems to me those of us inlicted with Ataxia are to fend for ourselves.
Actually i am, too, very unsatisfied with the actual system, not having found yet a neurologist which i would find compentent and on the same time available/visitable for me. The neurologist in Austria from whom i wrote here in this thread did not answer to my phone calls, and so i will stop to considerate that he would be good for me. Yesterday i was in an neurologic ambulance where for discussing my new EEG. I was told to do another EEG, with sleep deprivation, on Nov 2, and not to return to this ambulance, but to go next to another ambulance, for movement problems in three weeks… It was not told me why i should get this second EEG, and did not get the paper for the EEG from the neurologist. I asked for it at the reception of the ambulance and the girl printed it out for me. The neurologist also did not know how many hours i would have to be sleep deprived, “they would tell me”. The girl on the reception told me then that it was clear that i would have to stay awake for the whole night and then come for the sleep deprivation EEG. One is not informed about the others… etc. It would be too much to decribe all the actual problems here, because i must go on with my morning duties. Maybe i am a too complicated person. But actually very unhappy with the treating/diagnosing.There seem to me absolutely too few neurologists doing that. Waiting times too long for an actual medicamentation problem. . But in which country would it be better? Seems to be everywhere the same. Have a nice day…Stay strong! Kind regards, Akita
Jim, - i am a girl! I will change my name into Margarete,-this is my original name.
My story continued..."Be your own self-advocate" you are right.
Thank you all for the thoughtful responses. I draw strength from the little community that we have here. The information that members provide here in has been so much more valuable than the questioning looks and general skepticism I've encountered from most in the medical community. I happily have a very supportive neurologist who treats my migraines; but have found no doctor with knowledge about ataxia approaching those that frequent this website. The shared experiences, support and recommendations (especially in regards to diet) have been a godsend.
In closing, I will continue my battle with ataxia on my own with the help of support groups. Finding an ataxia expert in the U.S. is a lesson in frustration that I know only too well.
Hi Buffalo Bill
It is frustrating isn;t it! I was diagnosed with CA.Looking at others responses on this site I get the impression that we alll have some similar symptoms but different causes;some genetic others gluten etc.Hence the variety which is confusing doctors and neurologists.I know that something is wrong but I don;t know what has caused it hence the ideopathic.
My MRI shows cerebellardegeneration but I don't know what caused it.I suppose it ispart of the brain! It may be even one of those ataxias they haven;t discoovered.
I can't walk or speak and I have intention treemor but I don;t get headaches or feel tired or feel sick or double vision so I an counting my blessings. I went down the same road as you with the ear,nose and throat.
Purely by fluke a year ago I went to see a biochemical rehabilitation specialist and he changed my 'ataxia' world. As I say it was by accident and he was the first person I'd met who actually knew about ataxia.
He said my pelvis was out of line (why wouldn't it be with my walking?) and 'adjusted' me a bit. My walking and balance ability improved about 40% after a 30 minute appointment. I keep going back for a readjustment, not often enough, money and time constraints, I understand that muscles have memory and hope eventually they will learn to keep things in the right place for me.
So my advice is to see someone that deals with getting people walking again after accidents etc, more specialised than a physio. I also find doing physio myself to music at home really helps as well. I have cerebellar ataxia by the way.
I've read for hours and hours about ataxia on the internet and I think I know more about it than my doctor now so I'm waiting for a referral appointment to see a consultant and I'm going to keep on at them until I see someone that can give me something that helps!!
That's encouraging Jill! How wonderful that your walking and balance improved! ;o)
This man is very interesting and his theory has certainly helped me as well
Same here Jill. Clouse certainly seems to understand Ataxia.He has given me some inspiration and was my guru.Now I struggle with doing as he suggests or just giving up.
I know what you mean Marie, when I'm feeling better I'm really positive then suddenly everything changes, I can't do the exercises, my legs go in every direction but the right one, they feel too heavy to do anything. When I evenutally get over the 'what's the point' attitude I go back to the rehabilitation specialist and the process starts again. If I could cut out the weeks of inertia I would help myself more, as overall, my legs and are improving - I think !!
What I want to know is what causes them to change ??!
Hi, you would be better off heading south to the Columbia Presbyterian Movement Disorder in New York.
I am new to ataxia, although I have been showing signs for twenty-two years. A neurologist in North Haven CT finally diagnosed me with SCA 5 – a neuro in New Haven dismissed me as not having MS or Parkinsons, and then basically told me to have a nice life… so my brief experience with neurologists has been disenchanting. At least I have a name to put on this “face,” and I am grateful to have found this site. Makes me feel less alone in my ataxic world.
I am headed to Boston for a swallowing study. I hope I might find a neurologist who knows more than the New Haven doctors. It is sad that Yale has no experts in this area.
Will post again if I find more help in Boston.
Wishing you all the best –
Regina aka Ladylocket777
Hi, you would be better off heading south to New York to Columbia Presbyterian Movement Disorder. Not that they any cure, but lots of experience with Ataxia.