The bitter reality of ataxia

I guess one could say that my ataxia is relatively mild (so far). In the past two weeks, for example, I managed to travel across the world; go to a ballet (tripping over people in my row but what the hell...); go to the movies; shop in various stores; play with small grandchildren; even take escalators (UP) and people-movers. (Both these latest developments were new to me.) However, when I went to a family party recently, and saw everyone, even my older sister, dance in heels as if w/o a care in the world, I felt like an invalid. I basically sat and smiled in my ridiculous boots. I felt sad and worried and idiotic. I guess I shouldn't complain so much but I do better alone or in a quiet place, these days, I think. What a change for me. Neta

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  • I felt sad and worried and idiotic.

    ********************************

    Hello "neta".

    that´s me too.

    But: all one could do is just to make the

    best of it

    Regards

    Jurgen

  • Yeah, I did try to make the best of it. I guess it could be worse. Neta

  • Hello Neta

    I too feel as you do. I hate seeiing other people. I keep thinking of what I used to do. I know it's silly but there you are I can't help the way I feel.

    Take care

    Fifa

  • I wrote a general "friends" response. In short, I dont plan on going to big events anymore and hurting myself. My shrink says to do what makes me feel good only. Take care too Neta

  • There's a video of me crawling around posts and sitting on a chair at a friends wedding while the guests were folk dancing.I looked silly.

  • So as not "crawling around posts" or "look silly" I am using an indoor-rollator.

    My family and our friends feel a lot more at ease now.

    I know it´s hard - but what else can we Ataxians do ? --since

    you shouldn´t be without social contacts.

    Regards

  • Right. Silly is the word. Crawl around posts---- what does that mean?? Read my "friends" message. Specifically, I mean to avoid large events in the future or just stay briefly. Although my shrink says most observers are not staring at me. Its (alot) in my mind.

  • Hi Neta,

    You have at least done somethings. I have had C.A now for 6 years but like you I dont let it stop me. I too have just recently travelled around the world including Bangkok, Sydney and New York. I also go to the Tjeatre and Cinema. As for dancing I can't move my legs while doing it, but i can still move my body, so I always get involved.

    Do as much as you can while you can, think of everday as your last because one day it will.

    What I am trying to say is dont give up like others, but enjoy life to your full. I do.

    John.

  • Read my "friends" note. I am going to my HMO now by foot which is about 20-30 minutes away. I am going to pick up this IVIg stuff.

  • Dear Ataxia Friends,

    I have read all you comments to my blog-post and am taking it all in; your sadness and your optimism (John). Today I met some close and dear friends for lunch. Only two of them are aware of my auto-immune induced CA. They are focused on the auto-immune aspect. The fourth isnt aware of anything--- not that she's not empathetic; she is but since we once shared an office (which I quit), I find it hard to share this with her.. Friends No's. 2 and 4 are going tomorrow to meet another ex-colleague who tragically has ALS, Lou Gherig's disease and they admire his courage alot. So do I. He is such a great and young guy and now he is a fossil of his original self.It kills me. I adore him and am reduced to watching him waste away. Where is God? I dont know if I can bear to see him but compared to him, I am a movie star.

    I came back from the lunch somewhat more confident. Life is a fight indeed but it is a fight we were chosen for. I truly believe this. We apparently have the strength to fight on. On a practical note I think it is wise to avoid large events where everyone seems just fine; I know I will. Thanks for sharing your thoughts. I will fight this thing withball my might while trying and praying for a miracle. Neta

  • Hi Neta

    Thanks for your comment. As I said the other day there are people worse off, as you have sadly discovered.

    I am pleased you have come back more confident, but don't avoid large events, go out there and show them how strong you are.

    Tonight I am going out for a meal and then to the cinema'

    Think positive, you seem to be getting there.

    Take care

    John

  • I am trying to be positive although its like a high wire act. Sometimes I feel defeated. Other times I feel tough. My son is my booster; my husband is my enabler.

    I read in Monday's International Herald Tribune that the USA government is about to invest billions in "mapping" the brain. The article mentions that new technology plus info from the project will result in cures down the road for diseases like Alzheimer's and Parkinson's, I wonder why CA or any ataxia isnt mentioned? Are we so under the radar? Neta

  • Hi Neta!

    My daughter's wedding was on Saturday, and I was amazed to find I coped.

    We stayed at the hotel the night before because it was some distance away,

    my husband's first words on waking were - I've left my suit at home!

    15 mins before the ceremony, I was still sat on the end of my daughter's bed

    with t-shirt and jeans on, I didn't have a key to my room, and my husband was

    outside having photos taken.

    I'd had false eyelashes put on, and had to leave my glasses off. That turned

    out for the best, because walking down the aisle I couldn't see anyone properly

    so wasn't nervous.

    I wore flat shoes, and was one of the first on the dance floor, and one of the last

    to leave at the end.

    How this was possible is not something I can answer. Normally I wear glasses

    and use a stick outdoors, and indoors if I'm not familiar with the layout. I'm just

    glad adrenaline kept me going!

    I didn't expect to be able to enjoy dancing, it was a bonus!

    Now I'm back to earth, but with happy memories.

    Regards

    Beryl

  • Congratulations on your daughter's wedding. How wonderful that you enjoyed it so, and that you didn't let anything get in your way. Good job! My son in law's father also forgoy to bring his suit pants to the wedding. Wishing the couple and you, you, you every happiness. Neta

  • Oh Wow Beryl! - - how wonderful! Great you had such a good time!! - and don't concentrate on yiour Ataxia (although i see you don't!) - just know that as you get older (i.e. like me! ) - the intense/adrenalin-driven/showy-offy- stuff gets really boring..... if you can have a quick bop just to remind you how it used to be -remember - then retire gracefully to the sidelines --red-faced and panting - that's great!- that's normal ! Enjoy!

  • Good on you Beryl.

    John

  • Ataxia doesn't define who we are, unless WE let it! I'll NEVER give up or give in! Is it frustrating and challenging? YES! But I'm up for the challenge! Guess I'm determined that way...,ha! Do I feel sad and down sometimes? YES, but even if I didn't have ataxia, I'd be sad or down at times. Therefore, I may have ataxia, but ataxia doesn't have me! Can I do all I use to do? NO, but I probably couldn't anyway because of my age (59)...,ha! There are so many things I can still do, so I'll embrace those! I will continue to exercises for strength and balance, as well as eat healthy. Also, I don't care what anyone thinks of my "drunken" slurred speech or "drunken" balance, as the people (family and friends) that truly love me know I have ataxia and are supportive. I will spend as much time as I can with those people. In the end, that's all that really matters! The rest is just details...,ha! ;o)

  • I may have answered this. I never realized when the doctor diagnosed me that this was permanent. I admire your tenacity and strength. N

  • Loving you' Feb' go girl!

  • Reading how you feel could have been me writing, it is oh so similar. I went to my nephews wedding recently and the hardest thing was not able to join in the dancing - it made me feel so old. I used to love wearing heels but that is a thing of the past. However, I do have a lot to be grateful for and top of the list is a caring and supportive family.

  • Thanks for your candor. est, N

  • Similarly - I can't wear heels now. I can't stay focussed after greeting the bride/mother/etc - doing all the formal stuff! - always just want to go home!!

    I tell myself I am a boring old frt as I sink into my wonderful bed - with my Kindle.....!

    ... and it doesn't matter a bit....!

  • I was diagnosed with ataxia 10 years ago. I can't wear heels anymore, but I really don't mind, as there are so many stylish and comfortable flats these days! I also have arthritis in both my great toe joints (had surgery on one several ago), so flats are more comfortable anyway for me. Even with ataxia, I danced at my sons wedding 7 years ago. He held me up...,ha! I wore a cream-colored floor length dress with satin detail and cream satin flats! I was stylin...,ha!

  • So pleased to hear that so many people who have ataxia have accepted it although it is hard, but pleased to see that they get on and enjoy life as best they can. And it is important to have good friends around you, because they accept you as you are, with no fuss, as someone said being accepted is all that really matters.

    John

  • I agree with you but in my case, I have resisted telling "the world" (and I can still get away with it, if I try) so I dont have the kind of support or acceptance that you speak of. I hate pity and I am not accustomed to being "different" and certainly not disabled. Also, because I take the IVIg treatments once a month in a hospital, my close, inner circle of friends, think my issues will pass. It's pretty stupid because sooner or later, I won't have the luxury of living underground (unless this deterioration stops).. Also, I have managed to alienate many by coming late to weddings and not going to things like unveilings.I never say goodbye (or hello for that matter. I never call anyone or initiate get-togethers. I was always very friendly and lively. Now people think I am a snob!!! Neta

  • Hi Neta,

    You probably are still freindly, albeit not as lively. Dont hide your feelings away, tell people the truth, i'm sure they will understand. It seems to be you that can't come to terms with your C.A. If they don't understand then they are not real friends. I'm sure you have already gained many unknown freinds by your blogs.

    I can't understand why you are late to weddings and unveilings, get out there on time and show others that although you have a small problem it's not going to affect your social life.

    Last week I was in Ireland and getting involved in the dancing and even people who didn't know me, couldn't have been nicer.

    So Neta, get out there and show them.

    Stay frindly

    John

  • You are right John. I don't accept it myself so how do I expect anyone else to accept me. I don;t know why this is so hard for me. My shrink thinks I am too focused on looks. Cant help it I am a woman!!! I am tired of hiding; tired of worrying; just tired of trying to be brave all the time. Maybe people are nicer where you are, I just get weird stares when I make a false move and jumpy questions like "Are you okay???" More later.

  • Hi Neta

    Last comment should have been- Stay friendly. Shows my commputer skills again.

    John

  • Hi Neta

    Sounds from all you have said that C.A is quite new to you and it is hard to accept. I myself have had C.A. for 6 years now and although at first I found it difficult to understand, how I, a very fit and healthy man could become so debilitated, but I was determined not to let it beat me. Of course i can't do many of the things I use to do,but still do most other things and more.

    I am fortunatate in having a super wife, who always goes out with me, as well as many good friends who accept me for the person I was/am.

    It's not a matter of being brave, just being you.

    I'm sorry that people are not nicer where you are, but I'm sure if you dont concentrate on them and just think of yourself.maybe it might not be so bad.

    Think of YOU.

    John

  • Dear John,

    Thanks for your words of wisdom. It seems that I am caught between two worlds. On the one hand, my case is (still) mild enough to get away with appearing to be fine and I do little to change that. On the other hand, I feel changed enough to warrant some sympathy and some kindness--- which is not happening. I am glad you have a super-wife. I have a confused and frightened second husband who now realizes this is all not mental on my part (I mean the government did award me 100% disability and I do visit the hospital once a month) but he doesn't know why he is involved in this. I have tried very hard to keep things going. He has little patience for any of it. He's pissed off that I can no longer work and that our lives have abruptly stopped.He still (we are youngish) wants to travel; go to movies; theatre; ballet; weddings and all the rest and says I am "addicted" to my laptop and TV. Little does he realize that I am most comfortable sitting. I think I have been very brave in coping basically alone. He is not used to being the "caretaker." He is used to everyone taking care of him. His "tough-love" approach does force me to do things but the overall impact is negative. N

  • Hi Neta,

    I don't think we should warrebt sympathy and kindness, it should be shown by caring peoplr

    As for your husband, maybe he also is having difficulties coming to terms with the problem.Unfortunately its not just our problem, but also those close to us. Lets hope you both come to terms with it soon, because the correct support is invaluable. I know like you the computer is an invaluable friend, but dont stop going out, hopefully on your husbands arm.

    I now have difficulty speaking, seeing and obviosly standing, but I make sure I attend parties, weddings theatre and other functions.

    I know it is difficult, but get out there and enjoy yourself. Maybe, your husband will then appreciate you more

    From at least one of your friends

    John

  • Dear John,

    I am sorry the ataxia is taking such a heavy toll on you these days. You are really a source of inspiration and I enjoy hearing from you. What country are you writing from??

    I do get out. I think you are right. My husband has trouble coming to terms with this stuff. Also he is a tad selfish to begin with. Also he did not "sign up" for this.Ironically, my ex was better/good with illness. My current husband comes from a family where even serious illness such as cancer, is pooh-pooh as self-indulgent. (His father is 92 and strong as an ox.) He (my husband) has gone to funerals and wakes and so forth so he knows that there are some bad endings but the thought that something bad would happen to him before his father, is unconscionable.... Your wife is a saint whoever she is.

    Enjoy myself?? Are you kidding?? Well, I try. I shouldn't complain. Certain things do make me happy like seeing my grandchildren. Right now, I am going out by myself (I can) and I will buy some food and go to the library. Does sitting or lying give you some relief? It does me. N

  • Hi Neta

    IT seems as though I am always on the computer, but it's only about an hour a day to look at my e mails, although as I am passing I may have a look. I do however buy many goods on the internet.

    With your husband let him know how you feel and how you would appreciate his help, it might even bring you closer. I know now with my family we are now even closer.

    As for other people staring at you, that is their problem, or do you only think they are staring. Did you not look at other people, before you were disabled, lets hope they never have the same problems. See things like seeing your grandchildren make you happy, maybe you should try a hobby or something. Here in England, it is very cold, but I have just come in from my garden shed after planting some flower seeds. This certainly takes my mind off every problem.

    Sitting or lying down might give me some relief, but I don't give myself that time, I like to be doing something rather than giving in to the problem. I am determined to enjoy my life no matter what. I am even planning holidays this year and a trip to Australia next year to visit my son.

    Keep smiling and don't let others get you down

    John

  • You are amazing. Maybe it's the British in you. I, by comparison, am the daughter of Holocaust survivors, very panicked defeatist types. They (my parents) are from Belgium and now reside in NYC. Everyone is busy telling me how good I look. They should only know the truth..... I admire your energy. I told my husband several times about my "problem". His idea of empathy is to then by me a new piece of jewelry or clothing. He is starved for conversation and people. I dont know what to say to him. N

  • Hi Neta

    Before I was ill, I bungee jumped, white water rafted and paraglided, no I was not an adrenilin junkie. I just felt that if it was there why not try it, alas no more. But what I have done now is make a list of everything I can do once a week, now that I can. It may only be go to a museam or art exhibition, although I intend to do sky diving. There are so many things I didn't do when I could have, so why not now. Maybe if you drew up a weekly list and did it, your husband would not give you empathy or sympathy, but actually be very proud of what you are doing. He would also have something to talk about, his wife. You have said you are youngish and from your blogs, I imagine talented and intelligent. Go out there and show those doubters what you can do. Don't think about who or where you came from, only where you are going.

    Good luck in everything you do.

    John

  • Amazing John. I never did bungee jumping or white water rafting (too scared) just once para-sailing in Mexico. I was never attracted to extreme sports. A bit of basketball and tennis. ice skating, swimming and that's it. Oh yeah, and I loved bike riding. These days I am happy to shop for food and cook it. I told my husband that I recently started to take escalators up again. He sort of nodded, Cest la vie He's not really "into" this. I think (he thinks) that I am insane or lazy. On the other hand, he knows and, is happy, that I was awarded a large disability pension by the government which knocks off or property tax and provides me with a modest pension. My doctors said (outraged) "you don't deserve it!" (I think I do.)

    Your parents must have done good job on you because you are very upbeat. Inspired by you, today I went to synagogue ((I am Jewish) and spoke to several people after services (never did so in the past-- just ran away). No one asked me anything (like, are you okay) and I said nothing, I can talk normally for several minutes before slowing down, and walk relatively normally, If one doesn't stare, my impediment isn't noticeable terribly.. Later, I joined my husband at a reception. It meant walking up three or four flights to the social hall. . Up is no problem; down I am slower. I am still wary about "coming out", so to speak, but am de-icing as far as fear is concerned.

    Also early on Friday, I saw one of my neurologist's who generally gave me a good report. I "celebrated" by buying something in a store and not falling into the rack as I feared I might. It still pisses me off that all this brain research is going on in the USA and Europe and no mention of CA. Hello out there, does anyone know about us or care????? N

  • My husband gets increasingly angry that my Gp does not help a great deal where as I get more accepting (we cant expect our GPs to Know about everything I remember Harry B saying thaT AGP may never see a case of Ataxia during his working life)Most of my freinds and aquaintances knew me when I was fit and active so they are quite concerned to see how I am now their queries about my health is a comfort if not greatly helpful at least most of them do keep in touch.I am learning to cope but get frustrated with the lack of advice for easier living but I am gradually feeling more able to cope.The biggest problem is coping mentally but I expect that comes with time.Keep on battling Jackie

  • Dear Jackie,

    Its been my experience that only certain neurologists know what ataxia is. I guess the average GP or doctor was absent that day in medical school when weird diseases were discussed. Having said that, my GP, gynecologist and internist did know what it was but not in any detailed way. Believe it or not, I have also met brain surgeons who were hazy about ataxia. What shocks and infuriates me is that the USA govt and the EU are separately embarking on a massive, billion dollar studies of the brain,in the hope that illnesses such as Alzheimer's and Parkinson's are cured. Great . Those are indeeed terrible illnesses that affect many. But there is zero mention of ataxia in articles I have read. I don't know if you are British or American but I recommend writing to one's congressman or MP about this. I would also like to know if a cure is on the way or years off? Perhaps put your husband's anger to work in the form of activism. Neta

  • Thankyou Neta for your comments I also feel that a certain apathy exists and we could certainly benefit from more research here in the UK. I have been told so many times that my various complaintshave to be "lived with" that I have accepted defeatand try to help myself as much as possible

    I spoke to my cardiologist early on about my balance problems but his reply was "not my field" my rheumatologist saidit was not due to my arthritis.The consultants are only iterested in their particular bit of you!

    Itis very waring to deal with this as I am a complete person not a series of parts how do others deal with this attitude?

  • I have also been told repeatedly "to live with it" and "it's mild" I find none of this comforting. More tomorrow, It is after midnight here,

  • As I have said, I am often told things which I find unhelpful. No one, it seems to me, knows about this illness or cares. It seems, we are on the very bottom of priorities. News flash, there is a new world out there today, with new technologies and medications. Where are we living? In the Middle Ages? I have said this before: The breast cancer lobby and the AIDS lobby have managed to budge thing along,. Why not us?

  • Hi Neta

    Sorry for not getting back to you earlier, but have had a busy weekend with family and friends. I'M sorry to hear "laddies" complaints. I only have respect for the British N.H.S. Obviously the G.P.s may not know a lot about ataxia, they are general practioners, as for the consultants they spend many years practicing in their particular fields, they are not just a series of parts, but each are part of the whole picture. There are certainly a lot of angry people out there.

    I am pleased you are now confident to be able to do more things now and talk about your problem. One goal at a time.

    I remember a true story. Two women aged about seventy, one said she had brought up several children and grandchilren and would be happy to go and meet her maker.The second woman had done almost the same, but said it was now time for her to enjoy her life. The first woman died aged 74. The second climbed Mount Fujiama when she was 90.

    It's all about your state of mind.

    Over here in the U.K. we have a unit called 38 degrees, who obtain signitures for major causes and then lobby parliment.There is no reason why we cannot do this with all goverments around the world for ataxis?

    Keep thinking positive, as you seem to be.

    John

  • John,

    I will write back tomorrow. It's after midnight here. Neta

  • Dear John,

    Thanks for your encouragement and for your stories. My husband's cousin just climbed Mt. Kilimanjaro for his 70th birthday.(He has no ailments) I am happy if I can shop and cook. Last night, and all of Monday, it was the holiday of Purim here in Jerusalem. (The rest of the country celebrated on Sunday,)

    Masquerades are important. I bought a crown, sunglasses and pink fishnet gloves and a big heart ring that lights up. I drew two hearts in my face and filled one with glitter. I went to the synagogue and the ladies told me to come forward and applauded my gumption. (They had no costumes--staid lot..) The next day, I set the table and made a marvelous dinner. I went to see one of my neurologist's on Friday ans she barely gave me the time of day. I was a tad late for my appointment.

    How does one get in touch with the "38 degrees" group? I am not British. Does it matter?

    Neta

  • Hi Neta

    Pleased you have achieved the courage to stand out regardless of your condition and are not staid like some. It was even better that you got applauded. Go on girl..

    I'm not sure if 38 degrees is just British, but can be found on facebook or twitter.

    John

  • Dear John,

    I started to answer this but it vanished. I just came home from my latest IVIg treatment and I have mucho paperwork to do. My shrink told me to be more positive, and to take advantage of my relative good condition (so far) so I am trying. The University of California at San Francisco ( UC has several campuses) announced that as part of the new Obama plan, they will be working on improving speech disorders in brain impaired folks. Again no mention of ataxia per se but maybe it covers that too. I don't know. I saw an article on this in today's International Herald Tribune.I t might also been in the digital NYTimes under health by Jane Brody. Best, N

  • Reading this you seem to have got more and more positive just from these bloggs.

    Sometimes I'm really positive and sometimes I'm really down. Two years ago I felt that all my dreams collapsed as my ataxia really took hold. I used to love to dance, wear high heels and walk for long country walks. Now all three of those are finished for me. But I have always been very open with friends and family about my condition, and I know its been frightening for them too to see the speed at which I have deteriorated but being open is much easier. I walk with a gait and look and feel like i'm very drunk all the time. People used to avoid me in the streets as they thought I was a drunk or druggy, until I started to walk with my stick. If I don't have my stick will just fall over - Have done that a few times.lol

    However. on new years eve I went to a very close friends party - only about 20 people and had a fantastic time. Think it must have been an adrenline rush or something. I danced - all be it with my stick, I sat on the chair and danced, even amused them all with some air rock guitar whilst sitting on the chair. I haven't tried dancing in public yet or at big events - but may do one day. When I am with my close friends I feel comfortable and know that they understand as best they can.

    I don't tell people in other situations often - unless they ask - and then they don't really understand anyway - but hey who does?

    Sometimes I don't care what people think - I have to do things they way that I can.

  • You are indeed very brave, I vascillate from optimism to pessimism. I can still walk without a stick or accoutremets and have decided to focus my narrative on the autoimmune aspect of my condition. Most who know me, assume this issue will straighten out and they have never heard of ataxia. Never. They are led to believe (by me) that I will improve. This group includes friends, kids,husband, parents and other relatives. But I am doubtful if this will happen. Lately, I have developed a "que sera" attitude-- whatever will be, will be. I am sick of worrying about all this. Only my shrink and my doctors really understand what is going on.Thanks to people I have "met" on this site, I have forced myself to stop creating horror scenarios of the future. I am still at the "caring what people think" phase, I danced a "hora" type circle dance at my great niece's bat mitzva two weeks ago. I managed to do two rounds before my head went spinning and I bowed out. I was really jealous that my much older sister, in high heels, kept going. My shrink thinks I am too focussed on the heels thing but I disagree with him on that. Sometimes II want to cry; other times I try to convince myself its not so bad.

    Today, for example, I went alone to have my hair washed and blown. This kind of girlie stuff always gives me a lift==makes me feel more "normal".

  • hi Neta I too had trouble accepting my ataxia my walking has deteriated quickly I went from walking slowly then with a stick to a rollater and now a wheelchair I dont get out a lot and spend most of my days on facebook sad I know but it does pass the time . I knew about the way people treat you with ataxia as I watched my dad suffer the prejudice so all though people ignore me in wheelchair I try not to let it get me down though like you I also get some very bad days . I feel guilty that I cant look after my grandaughter by myself or take her out in pushchair as I get so tired and out of breath but ive come to conclusion that I can still laugh at myself so that helps hubby thinks I have lost plot some days when im on floor and crawling to try and get myself up and laughing at myself but I am also stubborn so I am going to put up a hell of a fight with ataxia it will win I know in end but while I can still laugh I will take care one day at a time regards Linda

  • Dear Linda,

    I am sorry ataxia has gotten you so down. I find walking on the beach to be challenging (to say the least). I seem to be ahead of the curve for a while or maybe due to the IVIg. I am also a fighter but there is a limit to how much one can fight. As I mentioned to a different reader, it might be helpful to get a celebrity on our team. Are you saying that your Dad had ataxia?I find the mornings (like now) to be most defeatist and the evenings to be more optimistic. I never thought this would happen to me. Best, N

  • I don't really know if i am very brave. I really miss wearing heels too, I used to wear them most of the time. It's much harder to feel elegant without them. Last year I wanted to do a kind of short skirt and chunky boots punky look - but then decided that really i'm prob a bit old for it!!!

    I have days when I'm really down too and cry easily. But i'm getting stronger. Last year I was really down and cried at least 6/7 times per day. But I found the shrinks really helped me through it.

    My husband goes through phases, mostly he's really supportive. The other day he was angry at me - which then made me angry - cos it's not my fault. I think really he needs to shrink help too, but not sure if he will take it.

    Last summer when we went to the beach the only way i can get in and out of the water is to crawl on all fours. I don't care i just do it. But walking on the beach is pretty impossible too - often have to crawl there too. Not the most elegant look!! lol. I can't imagine what people think.

    I can only walk about 400 metres now with a stick, so if we go out shopping etc I have to use the wheelchair. But at least that enables me to go out more.

    Linda is right. It's good to laugh at yourself. Before i knew i was ill, people used to laugh at/with me as I was always falling over and making a fool of myself. I mean my friends so in a good way. Now i tell them they can still laugh at me as i can see that it must look really funny sometimes. I try to walk in one direction and end up in another. lol

    The illness will get us in the end but on the way it helps to keep positive and laugh as much as possible. Don't get me wrong, i can be miserable and down too.

  • I just cannot understand why everyone is so complacent about their fate and why some of this self torture is not "converted" into action. I feel as I am at an :earlier stage than many you (or perhaps this IVIg stuff has slowed or stopped deterioration). In either case,it seems that no one is up for the research fight including the national ataxia groups who seem content with the status quo. I have encountered thiis organizational refusal to cease ti exist before.. I can't believe in this age of technology and endeavor, there is nothing to be done just flit away. Maybe I am wrong ;maybe not.

    Yesterday was "rare disease" day in Israel. Frankly, I did not see much about it. I think it would be great if someone like Kate Middleton or Michelle Obama or Chelsea Clinton became our sponsor or took an interest. How does this happen?. N

  • One more thing... about the heels. I have had this discussion with my shrink 1 million times. He thinks I am too focused on my looks but I think he is merely not woman, so he doesn't know. I told him this and he became insulted, "but I am a professional" he said. I stopped crying with the anti-depressants but I still feel sad sometimes. My whole world, too, seems to have crashed. I don't know if you can do this but try black suede boots with a small wedge instead of flats. They may give the leg some elegance. N

  • most wedges are too narrow for me. Stopped wearing them 3 years ago. Now a heel for me is solid, square and about 1 inch high

  • I must admit I sometimes miss been able to dress up in pair of heels and just go out without having to plan things like a military operation ,but ive been wearing flat shoes for that long now think I have been suffering from ataxia for longer than realised as put early signs down to other things .It is 2 years in April since I was diagnoised and when I remember that my dad did not deteriate as quickly walking wise as I have . I think the only way to get help is if we are are more open and honest about our illness this morning I have posted about ataxia as my status on facebook to make more people aware maybe more could do the same regards Linda x

  • Perhaps. I still think a celeb behind us might help. But I admire your pluck! It is truly amazing how so few people know of this, care or relate to it. When I buy something, I am routinely asked to sign (a credit card statement) as if that was the most natural function in the world. Shopkeeps or anyone for that matter such as bank tellers or postal workers, doesn't even think for a moment that perhaps someone, who looks normal, can't sign. (I sign in block letters or just initials.) Best, N

  • I have had quite a good response this morning to my posting on facebook so as I say the more people we can make aware the better I dont know how to get celebrity involved though perhaps others might are you on facebook Linda x

  • Good work Linda. I think it is great that you are doing something important. N

  • I think you are really brave linda posting on your facebook. I am in contact with people in Uk that have not seen me for ages and most of them have no idea that I am ill. There is a photo of me in a wheelchair on my photos but with no explaination. I have no idea what to put. Will think about doing it. hmmmm.

    Our problem with profile for advancing research is that our illnesses are so rare. Obviously there are more people with ms, parkinsons etc so they can more research. But a celeb would be a great idea. I've unfortunately no idea how to get one to help.

    There are things all day long that are very difficult - walking, writing, and many others. People have no idea at all. They just think - why are they taking so long. It takes me ages just to put my purse back into my handbag! Sometimes I want a sign on my head, and other times i want people to treat me completely normally. so they can't win really.

    My hands and arms have only had the problem for about 5 months now - before they were fine. The concentration for everything is just so exhausting.

  • I agree. Linda is brave. Very. I seem "normal" but am not. Hands: I can no longer serve soup. I bring the pot to the table and serve from there, hoping guests will grab the shifty plates. Nevertheless I do put on make-up and a dr. in NYC said this is a good exercise. Going from a standing to a sitting position requires me to hold on to the table, gingerly, but hold on nevertheless. I also run w/o holding on for half an hour, followed by floor exercises. But I am always getting shoulder straps tangled and in general bump into people and things non-stop. With all this one dr. says my deficit is small. I don't feel that way and want to find a cure I hate this.

  • what is IVIg please? Please could you explain

  • Hi there,

    I have read all your comments. In my case, the doctors here (professors) think my CA is auto-immune induced, and there has been research that IVIg, which stands for intravenous immunoglobulin, can help. There is a dr. in Sheffield, UK, who has written about this. His first name is Mario. I have been in touch with him. Prior to this, I was told that my CA was caused by unknown causes. Drs, seem to think the IVIg has helped me somewhat. I now belong to departments of neurology and immunology. One key prof. told me that I have a "heavy" auto-immune profile. My mother and brother have (mild) auto-immune conditions; my sister takes something for her thyroid. I walk w/o a cane, speak and write. None of these tasks are done with ease but perhaps w/o the IVIg, I'd be worse at this point. I cannot do a myriad things I once did such as work,dance, wear heels. I also tire easily. I still want to find a cure or more definitive treatment.

  • hi all,

    i have CA, can't walk in heels, went to the Nottingham branch " Ataxia Ball 2012 ",in heels!!!!!, didn't care, had my partner by my side, look and felt great!!! and just enjoyed having CA....

    helen

  • Good for you Helen. This Saturday, I wore (rubber) heels to my synagogue. My partner was also there but I made an effort to walk w/o holding on to him all the time. I hate CA however. I do wear heels at home, when I can. The perfect shoe for me is actually a low wedge, with a rubber sole, not too bouncy. On top of everything, I havw a bunion on my toe which hurts unless I wear suede

  • hi neta

    i have never heard of rubber heel, and would be interested in wearing them, also it would be good for me to try a low wedge......flat shoes make me feel all frumpy and dont look very ladylike, with a holiday quickly approching, it would look nice for me to wear a low wedge/rubber heels.....please can you direct me to a site with nice comfy shoes, that look ladylike.

    thankyou

    helen

  • The shoes I bought are from a store called Aerosoles. I also bought there (at their NYC store on Columbus Ave) low wedge black suede boots, very wearable and sexy. I don't know what I will wear this summer when the boot season is over. I don't know where you are but I suppose they have w website. Also try the brand known as Beautifeel. (That's with 2 ee's for real). Good luck

    PS There is rubber on the soles too. More of a wintry shoes but maybe they have something for the Spring.

  • hi neta,

    been looking at some sandles/shoes, think i've found an ideal pair, their a low wedge, slip on, high cross over straps, i've worn this kind of sandle/shoe before and they really are comfortable,there called " lotus trino cross strap sandles " and there by " barretts ". i hope these are available and suitable for you, as you are in the US and i am in england.

    good hunting

    helen

  • Thanks Helen.I will look out for them.

  • Have ataxia just had operation had implant in throat to try and help my voice as the left vocal cord had become paralysed has anyone else had problems with voice seems to be a slight improvement cindy1

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