How to help my husband?

I was diagnosed with SCA1. I don't have any symptoms yet. My husband can't deal with it. He's really old fashioned and don't want to speak about his feelings with anybody. I'm trying to keep myself positive but it's very hard when he's shouting at me for no reason. I don't know what should I do to help him. Does anyone have any suggestions?

Thank you.

11 Replies

  • Hi. Miranella

    Have you contacted Ataxia U K and asked them to send you all their literature etc? By then showing this to your husband he may understand what Ataxia is and be a bit more understanding and helpful Another thing you could try. Is to find your local support group and hopefully get him to take you to a meeting

    But I must admit that my wife and I were a bit shocked on our first meeting but quickly made friends and helpers (your husband ) were also able to chat with others. It all takes a bit of adjustment on both sides but eventually things do settle down. Good luck. Fellow Ataxian. Ted

  • Hi, he knows what's Ataxia. I have already checked and there's no support group in my town. The problem is that we're from Poland and our first language is polish. I don't have major problems with speaking in English but my husband is struggling a bit. And specially when it comes to speaking about difficult subjects.

  • Hello Mirka

    I too have SCA1 (older than you 53). Just wondering if you have no symptoms yet does it run in your family and if so has your husband seen affected members of your family? Do you think you might have a family? Sorry for all the questions : ) Litty

  • Hi, don't apologise. I'm happy that I can speak with someone who has the same type of Ataxia as me. I'm 31 and don't have any symptoms yet. My dad had it and died last year. My sister is 39 and has all the symptoms. She is dependant on our mum. Her symptoms started after she was 34. My husband saw how my dad was getting worse. We're from Poland but living in the UK for nearly 9 years. Every time we came to visit my parents my dad was getting worse. And when he fell and broke his leg that was the end. He never stood on his feet again.

    Will I have a family? Probably. We're meeting doctors to be sure that the pregnancy will not make my symptoms come quicker. But the problem is that I never was into having children. And my husband can't really deal with my illness. I don't have the quarantee that he will be by my side to support me when my symptoms will start.

    When did yours symptoms started? Were they developing slowly?

  • Sorry so long replying but I wanted to talk to my husband first.

    Right he says your husband is scared, frightened and frustrated. It is probably easier when you have symptoms he can help you. Ian went through and is still dealing with this. He is VERY private and old-fashioned but he says your husband needs to talk to a professional who understands what he is feeling. There are proper neurological counsellors who really understand what he is going through. It is really hard to watch someone you love struggle and know it is going to happen and there is nothing they can do. Ian was referred by our GP. If you know a good surgery perhaps you could have a chat first and explain. In a perfect world if you could find someone who speaks Polish it might be easier for him to talk.

    Ian says that no way would he have talked to anyone before the GP convinced him but now he tells all his friends with problems that they need to talk to someone. Good luck : )

  • Hello, thank you so much for that reply. It's very kind of you and you have asked your husband as well :-) On the 2nd of March we have an appointment with a neurologist. Maybe he could refer my husband to a counsellor. I will email the doctor who referred us to the neurologist (so many referrals :-)) and ask her if she can contact the doctor and explain what's going on. Did your husband went to the GP alone? The only time that a doctor could convince him to talk to a counsellor is when we're together at the hospital. I know that talking about it helps a lot. I was keeping it to myself for a long time at it was eating me from the inside. Now all my friends know and the people at work. So I can talk about it when ever I want. I will try to find a polish counsellor. Thank you again. It's so nice to talk with you :-)

  • Oh that sounds perfect! Good luck and we will be thinking off you on 2nd : )

  • Thank you and I will let you know how it went.

  • Hi, so we went to the neurologist and we have a green light for a baby. There should be no risk that the pregnancy will make me feel worse. And also I've found a polish counsellor and managed to convince my husband for a meeting. It came out that unfortunately he has a drinking problem:-( He is drinking because he can't handle that I am ill. So now he has a month to try and sort it by himself and if he can't do it then he will have to have private sessions with a counsellor.

  • Oh thank you for the update!

    How exciting and good luck with trying for a baby. I have 2 grown-up children but they will always be my babies!

    Well done on finding the polish guy and hope your husband can crack the drinking. It never goes away (my sister has a drink problem) but gets easier. 

  • I sympathies. My partner of 18 yr couldn't handle it and buggered off. At least ur man still there. Make app. wi doc asap , drag him along ,and TALK. I know it will feel awkward at first but even though I went myself I learned to live with it. All my hopes x

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