I find that sadly that my husband's way of dealing with my ataxia is to make believe its not happening. For example, now he's away for 1 month. He harrumphs when I say I cant accompany him somewhere. He has developed his own medical condition which is minor (in my opinion). He refuses to take me by car to most places,saying, instead, "take a taxi." He has stopped talking to me; forget about intimate relations. In short, he seems to be angry at me, for insufficient exercising (he says). He is generally compassionate but not to me. He seems embarrassed that I no longer work. He doesnt seem to want responsibility 4 me. Not helpful is his mother who is a busy body and goes around saying that I am "crippled".
My PT said that generally family members are not good at this sort of thing . Is this true?
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MY neuro said it is auto-immune induced. As a result I have taken 2 years of IVIG treatments---these are painless 6 hr trasfusions each month. This is by no means a miracle drug but rather designed to slow progression by masking the strange antibodies that my body produces. I do not have any cancer. Lately, I find progression to be rather fast. My neuro agrees that degeneration is more pronounced--although he claims that the next meds can be more toxic and even lethal. Now I wonder if this autoimmune aspect was the reason I got CA to begin with. XXXN
I'm so sorry you have gone through all of this, it's certainly not sounding like you've been dealt the best hand in the health department. That's an interesting point about the antibodies! I recently had surgery for a hernia, while they were doing the standard group and save (incase I needed a transfusion) they noticed ihad a load of antibodies in my blood and it took hours to find blood similar enough to my own so it would not make me ill. I've got a lot of other symptoms of an auto immune disorder but for some reason my doctors are very reluctant to order the relevant blood tests to confirm or deny this fact. Whenever I go and ask they just come up with another reason for my symptoms and excuse not to test me. *raises eyebrow very odd. Kxx
Yes, there is a British neuro in Sheffield whose first name is Prof. Mario and whose surname is something like Hadvasliou. He knows alot about this and has written about auto-immunity and ca. You might want to consult him. In my case, my immunologist said my situation is not hereditary per se but I have a very profound auto-immune "file", for example, my Mum has alopecia areata, a very auto-immune thing; my brother has a super-mild case of Raynaud's (cold hands) also very a.i and my sister has something too,
Yes, family members can have a very hard time accepting the changes in their loved ones. The anger they feel towards the illness is often misdirected at the person instead. I too have seen my relationship change since relapse and worsening disability. A big one was the loss of my job and financial struggle since I am no longer able to contribute to the pot. I was always relied upon financially and physically - I cannot make that grade anymore. I manage less at home and cannot keep up, either financially or physically with 'going out and about' with my partner, like before so I stay home trying to catch up on jobs while he goes out instead. He just gets on with his socialising arrangements and hobbies now, without consulting me anymore. Kind of feels like I have become semi transparent - a part time ghost ! I know exactly how it feels to lose a measure of independence, financial security and self worth. Yet we are so much more than just a pair of hands - it would be good to be valued for who we are, not just by our physical/financial contribution !
I deeply dislike the word 'cripple' - it is a very old fashioned word and conjures up images of inability, fragility, dependence and burden. We are not like that, are we ? We still strive to do as much as we physically can and be as independent as possible yet recognise that we need help in some areas. I am surprised the word is still in use.
At some point, the penny will drop and family will realise that this is for real, not a passing phase, or lack of exercise or lack of willpower. We have had to be strong for ourselves and learn to accept and adapt - they will have to work it out for themselves too. Regardless of disability, there is the same person inside this malfunctioning body, the same person my partner fell in love with 23 years ago, with the same needs, desires, hopes and dreams. Perhaps we need to remind our partner's of this.
Thanks for you beautiful response. Indeed I hate being a ghost. Cripple? Indeed old fashioned but she is 86-- so it makes sense. I also stopped contributing to the pot. I sometimes have this fantasy that I escape to a Rose Cottage type place and I live out my life there in peace. I (nor you nor Anyone) picked this. L,N
luckily my husband has been incredibly supportive. But in our bad moments when he said my opinion doesn't count cos I can't do anything, I have shouted back "even if all I can do one day is sit in a chair all day, I still have thoughts and opinions and they definitely DO count".
however when I was depressed I would have just cried😢. I think you should try to be strong and remind him that you're still the same person and that this isn't your choice.
my husband also likes to try to give me (helpful!) advice when I'm walking. Like try moving your hips, lift your legs more, pull your belly in etc etc. He really means to be helpful but I can't focus on correcting more than one aspect at a time.
it sounds like your husband is really angry about you becoming ill and unfortunately is directing that at you.
there are partners and carers who use this site too, maybe some of them could give their thoughts on your problem
Thanks for getting back to me. Its just that this catastrophe happened when we were/are relatively young and I am consumed by guilt. I cannot expect him to keep up with me; on the other hand, I feel angry and abandoned when he simply goes off. I dont know how this saga will end but I will take your words to heart. N
Oh that is sad and not sure what to advise. HOPEFULLY time will help but not convinced. Sounds like he has real problems with your ataxia.
My Ian needed to talk to a professional. There are some wonderful psychologists that specialise in the difficulties of ataxia. Perhaps if you offer to talk to someone too? Hopefully rediscovering what you want will help you both. Good luck : )
Thanks for your response. He did see a psychologist but I have no
idea what went on there or what was discussed. I feel as though he is making life impossible for me. I wonder sometimes whether I am better off with him or not. In truth, I think you are right; he doesnt fully appreciate my
saga. I, have to be quite frank about my limitations which I havent been. N
I think you seem to have tried everything and it sounds like he has real problems. Only you can decide but I do think that even though it would be VERY hard you might be better off and have miles less stress (which is not good with ataxia). The progressive nature of ataxia too means that you are only going to be able to do less together.
Dear Neta I have S.C.A had it for about 4 years , it was a gift from my mums gene ! My husband was a bit like yours ,me do the shopping get a bus or taxi even though we have a car ( I can't drive blind in one eye ) . Of course I don't need help i'm wonder woman can do everything he thinks I can , my daughter who is 21 and lives with us doesn't think she should do anything its not her house ! I asked him to come to one of my appointments to see the neuro doc , and I kind of got her to explain what it was like and that there was no cure and it could only get worse ! I think he was taken back by what she said as he had only heard it from me or read the details on line . He still thinks I can do everything most days but he has more kindness towards me , which is silly he's my husband but he knows I have a battle to fight and I am trying . I have been going to the gym , not doing a lot but slowly getting stronger walking and building strength in my arms , its my me time . I hope this might help you or at least encouraged you to go on and not be so available might make them sit up because you DO still have a life !!! Hugs Julie x
Indeed I, too, am seen as Wonder Woman. I think he thinks that giving in to me, is bad for me. I am not sure he has even consulted the Internet regarding ataxia. Once,he came with me to the neuro, who invited him to ask whatever he wanted so he asked,,"what should she eat?" Whatever.... A friend says men are not good carers-- can this be? Sometimes he can be considerate like ordering aisle seats at the theater or ballet. But I am generally way down on the list of priorities. Ironically, he adores anything British. L,N
How are you ? I just remembered lol he says he lets me get on with ever thing because he doesn't want to make me dependant on him . Well I certainly won't become that ! that's for sure . I don't know about not being seen with me because my husband doesn't often go out , he is a couch potato , finish work and that's where he sits , I think if possible you should take a step and find a class of some sort ,it won't fix him but it might help you just a little bit . Hugs Julie x
I am alive. As usual, I am debating (with myself) all kinds of things. I am increasingly dependent on a shoulder for support. His or anyone's. This is in addition to a stick/cane in the other hand.
I cannot get rid of the extreme imbalance/dizziness otherwise I would have taken a class or even a degree, ages ago.
the thing is, we are not just handicapped but we are ill!
My husband also has a very bad back condition which is recent and degenerative. I hate to say this but it does kinda make things easier. He is also registered handicapped tho he is working full time now. Obviously he is more tired now due to pain but I'm tired from effort and pain. I often point out this difference to him. He thinks going to bed for 2 hours every afternoon is "me" time, so I'm quick to point out that I'd rather be doing something but it's essential for me to rest.
I don't know the solution for you neta, but if you start to accept this yourself and learn what your needs are then put your foot down for yourself.
I'm really not someone qualified to give advice. In reality my husband is very supportive. I'm just relaying our frequent arguments.
maybe you should go together to see someone but really they need to understand your illness.
I think Nigel heath on this site (who started the ataxiafightback site) was a marriage guidance counsellor, you could privately message him I'm sure he will try to help you.
Thanks for your response. Indeed I think a marriage counselor is in our future. Increasingly,I feel like that weird wife hidden away in "Jane Eyre". Or is it "Wuthering Heights?" My husband does not seem anxious to be rid of me ("How would it look?") but nor is he interested in a life together. But thanks again 4 your kind words. N
Ps I'm useless in the advice department but would like to send you a massive ((((((((((hugs))))))))) I believe men find it difficult to communicate their feelings and tend to be quite distant/standoffish as a result. Sometimes they just need a strong lady to show them how to talk openly and honestly without getting annoyed in the process. I have to coax my partners feelings out of him when he shows irritated body language or he would never normally open up. I really hope that you are able to sort things out soon. Nobody deserves to feel like you do. I think it's amazing you have continued to be as active in working etc ad you have done. Xxx. Kxx
Thanks so much for your hugs and sweet words. Indeed many,not all, of the men I know are distant and standoffish as u say. I find it funny (or not) that a few of the men who know about my limitations have avoided me, not their wives. I have told my husband 1,000 times, in the least annoying manner, to be more expressive about his feelings...to no avail. He says allis just fine. Maybe nobody reacts to me direly because I have been "too busy" acting normal. Dunno. But this is about to change. Love N
I can't offer any useful advice, I can just extend my sympathy to you. But I just wanted to say that not all family members are not good at this sort of thing. My wife, sons, parents etc. are very supportive and helpful.
As I say, I have no words of wisdom, but just sympathise, because this must be very tough for you.
Hi, iam so sorry to read what is happening to you,how long have you had Ataxia,because some folk with Ataxia will not accept it themselves,my bro being one. I also have Ataxia as my bro does inherited from our mother,i was diagnosed 16 yrs ago. maybe in time your hubby will come to accept your condition but i am sad to read of the way he is being with you at a time you need his total support! He seems to be feeling it a huge impact on HIS life while not addressing the impact on yours and i am amazed at his attitude in telling you to use taxi's for transport.I think you both need to have a heart to heart conversation about the whole thing so you can begin to understand his feelings,and he yours...He is just not dealing with it is he!...and we as people accept things in different ways..I have a daughter who accepts Ataxia and a son who never speaks about it!!!...Your hubby i hope will come to accept it and work with you to make life as good as it can be for both of you...Eileen
Thanks for your response. Indeed, I think a heart to heart is in the cards for us
maybe with a third party. It;s true,maybe my own acceptance of ataxia is not what it should be. Its just tha t my world is so anti-illness at a young age; people stare, pity and stare some more. Also unhelpful is the fact that no one has heard of this. I am not sure why.
I have yet to find a group of similar people. My husband is alot like his late Dad (said this before) unless you have cancer or a heart attack or a stroke, you r fine. Recently, I found my husband staring at me in horror-- as if to say "yikes she is so disabled!! Is that whom I married and was in love with????!" Thanks for listening N
Dear Neta, I have always been very independant, so my fear of becoming dependant on others is great. My children are generally good and my husband can be over protective or not helpfull at all. At the table, he sometimes wants to put the food on my plate treating me like a child, and then when I want his support for walking, he walks so fast that I am hanging on to him for dear life, as I cannot go that fast. I do want to be independant, I feel it is important to me not to give in. I was getting weaker, my legs were very heavy and I got tired very easily. I realised that my muscles could no longer hold me. So I got myself a mini bique (just pedals) and peddal a lot with my legs and arms. Soon I noticed my legs were lighter, I was much stronger and then I read all I could on Dr Tom Crouse at this address walkingwithataxia.com/to-mo... and began his exercises. This has proved to be great at delaying my symptomos. I find it important for me not to give up. I am 62, in 2009 I was told to get a wheel chair, I am still walking (wobbling a bit) around unaided. I have difficulty going downstairs and ramps. Level floors are fine now. I often spend time at the shopping centre alone, as I cannot bear having someone asking all time, what else do I need? My neurologist has only prescribed vitamin E, but I also take magnesium for cramps, and I believe I am doing well. Keep positive, live one day at the time, don't think too much of your future needs. We must not br stressful and I like to think, that there are two days I need not worry about - yesterday and tomorrow. One is past and the other has not yet come. I have also followed the advice of Nigel Heath in ataxiafightback, which is also great. Hang in there and chin up all will work out well.
I thought I answered you.Maybe not.My computer is insane. Anyway thanks for your words of wisdom.I am also a mixed bag of can and cannot do's. Whatever it is, it seems like I can always do less. I try to keep positive and not to dwell on the future because mine is as cloudy as they come
Just recently, my neuro(whom I like and trust) said to me, "you will end up in a wheelchair." Great! Right? I recall my NYC PT told me,"Eight months after you start using a wheelchair, you will die." Sounds great, no? I came home from the neuro determined never to get in a wchair. My husband, Edward, believes or acts like he believes that my situation is minor. N
First I wanted to share what happened to me. I was seeing someone and he disappeared and left once I started using the crutch. He felt too ashamed to be seen with me. Second my friends are of two kinds - one help me and try to find things I can read, do, etc. and are in touch - others feel sorry for me and show their concern through talking to others, Not me - the have moved away.
Third I do think this is a phase of my life and have to get on with it. Let me explain - I lived in South Africa, in Mozambique, in India, in Portugal and now in London. With every change I made new friends and did new things. Some friends tagged along for some time but only one has tagged along 38 years.
So think of yourself lucky a things without your husband and mother in law. Say t yourself - 'This is the new me with Ataxia, I am going ..... I don't care .....'
Once you accept yourself you will not feel bad about not exercising - I too feel that there are days when I can workout an hour in the gym - but there are days when I just want to sit and watch TV or read.
Thanks for getting back to me. I know there are good people on Earth. Once I read in the New York Times about a man who married his fiance even though 2 weeks before the wedding, she found a lump in her breast. He could have vanished but he didnt. I always remember that story. There r hero's around. Plus, you r right: this is the new me. N
I too lived in South Africa for about 30 years and now live in Portugal. I donot know why, but I get the feeling that I know you. I lived in Witbank Transvaal from 67 to 93.
Is it possible that I may have met you.
Do keep your muscles toned. I am doing alot of crochetting, it helps my small motor co-ordination and eye hand co-ordination, and I enjoy it very much.
I don't think we have met - I was in SA from 6 months until 3 years - can't ever forget this because when I went to Mozambique (portuguese speaking) and when people talked to me I answered them in English. Then when I lived in Portugal-lisbon-Benfica, I became bilingual - piortuguese and English.
Your name is typically portugues - where are you from and where are you living., if I may ask?.
I was born in Portugal but went to SA when I was 10 and lived there till I was 40. I live in Coimbra Portugal. I am Portuguese, just raised and educated in SA, so I am also fully bilingual.
I just joined this group yest I live in Malawi and my hubby was diagnosed with ataxia 8 yrs ago in a wheelchair 4 years and needs 24/7 around the clock care,his speech is so slurred now we can hardly understand him as you lived in Mozambique you will know that there's no help here at all no groups nothing. He's 63 yrs old now and we would love to hear from someone going through same thing thanks
Dear Neta, Sometimes the ones that love us the most have the hardest time seeing us having a hard time. This may be the case with your husband, although I certainly can see why it's upsetting to you. My husband has been incredibly supportive, but I feel quilty depending on him so much..., how's that for a scenario? I often tell him this! Now, it's quite different with my family/friends. My parents are in their late 80's so I rarely talk about my ataxia with them, as it upsets them and they really don't understand all this (hence, the ones who loves me most). And some other family and friends really don't understand as well! Wish I had better advice! Just do the best you can, which I know you are! And know you are not "alone", as we know how you feel! My favorite mantra is "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water". So you be that tea bag! My best to you...,;o)
I guess there are no perfect solutions. My parents are in their 90's Dad doesnt want to know, and insists exercise/physyotherapy is the key. Mom is more "au current" and quite upset and in disblief that I, her baby,is struggling with something. But at the end of the day, she is troubled by her own profound health issues. Edward (husband) thinks tough love is the way to go here. I t hink u r right: it's too hard to accept that Mum/wife is imperfect. Complicating matters: E and I are in a second marriage. I know that my older bro and sis (healthy) are furious about E,s long solo absences abroad. I am trying to be strong but I am not sure how long this situation can continue L,N
I have just read through your posts and all the replies. It has really made me smile and totally understand the woman whose husband givews advice on how to walk, then when she needs help walks at a fast pace she can't keep up! After over 5 years of denial and trying to act normal I have finally realised I too needed to accept the new me and be honest with some people how hard it is. My husband was also in the 'the more I help you, the worse you'll be' camp so totally understand. I read some stuff on how to talk about it with your partner, and the approach of starting each sentence with 'I feel......' works so much better than the more accusing 'you'.
Interesting to revisit this topic several months later. What has changed? Nothing. Only things became more extreme..although E seems a bit more aware. He has become quite silent around me. And he sighs a lot. That's funny...My typing is slower; my swallowing is more interrupted by coughs; my imbalance is more (I think) profound. E's attitude to Dr, Clouse was highly obnoxious and filled with disbelief and disdain. The car does not roll for me. (But I do find cabdrivers very helpful.) E now wants to go on vacation-- a new challenge-- because he thinks I should come. My Big Sis came and begged me to go back with her. Also not a solution long term. But anyway thanks for weighing in.Maybe Brits are better at this. I come from a diff. tribe. xx hugs back, N
Hi I have Ataxia as well, they act this way out of fear and hurt. They don't have understanding and education on what your going through, if you could get information to help them understand they might see it in a better way. The good part is your not alone, it's full of Ataxia people just like you. If they only new how much you suffer, if they could take your place and feel that awful treatment. There world would stop to inhale, then they would turn to you with that face of terror. It's ok to suffer like we all do, it's better to get stronger through this then worry about people who can't help your health. If only the world new we suffer in silence, in the U.S. I tell many and they have this look on there face like someone famous showed up. They all just listen when I mentioned all the men and women in Europe suffering, also how it's not just there it's here to. Trust me everyone on here cares because they live how you feel.
Hi neta, I am sorry to hear what you are going through and your husband not very supportive. My husband has SCA and though it's not easy to watch him go through this disease I am his crutch and fully support him and there for him constantly. He pushes himself every minute of each day and finds it depressing and hates himself for the way he is. He wishes his life was over.
This is hard for me to hear. As a partner I struggle because it worries me when I see him walk, go up and down stairs, showers etc etc. He doesn't give up and keeps doing everything. My frustration is he rarely uses his cane. The time is coming for him to use a Walker and a wheelchair. This is hard for him to accept. He's very independent. He has had some serious falls and hurt himself and needed to heal. He refuses to put bars in the shower or sit on a chair. I know the day is coming where I won't be able to get him up. I love him so much and I'm worried about him all the time. I hope your husband will change and be there to help you. I think he needs to research in this disease and it will help him. Stay strong and put you first.
ditch that unsympathetic and unempathic so and so.i dont have time for rudness. everybody was nothing but that and extrmelly helpful and i am talking strangers, NOT MY CLOSEST PERSON MY HUSBAND.MY HUBBY WLD BREATH FORM ME IF HE CLD, OR BRING AND DO FOR ME IMPOSSIBLE.DITCH HOIM EVEN AFTER 20 YRS MARRIAGE.How he LOVES YOU IS BEYOND ME?loves himself more like...my ataxia is inherited from my late father, his ma had it as well. at lest 4-5 generations back
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L,N
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