Not sure about next steps

[Larobby]

Hi all. My brother has been battling with ataxia for about three years (he is 46). It was caused by a lymphoma, which he has managed to defeat. But the ataxia continues and he is not leaving the house at all. He says he can barely clean his teeth. He is doing physio exercises everyday. We also did a treatment where they washed his blood, which gave minor improvements. But now we feel stuck at a dead end. I see people on this forum having a much more active life than him, so I am wondering if there is something else we should be doing. Any ideas? He is in Italy, in a small town where there is pretty much no ataxia community, so it feels very isolating for him. He never wants to leave the house because he feels disoriented and scared of everything. Sorry for venting, I really don’t know what else to do.

[pinjem]

I am sorry about this, some people have what seem to be 'better' lives. I wish I could do all sorts of things too. I get confused visually and disorientated too. I use a wheelchair if I have to go anywhere. The internet is an absolute blessing, I am fairly active on forums that interest me. I have no 'answers' and I understand not wishing to go out. This online community is a big help. I'd get a cat or dog except I'd step on it, or fall over it, if I get worse and am more limited I will as they can be great 'friends' and make you look outwards. When I am very bad, I watch the birds on the feeder. Small stuff but my world. I have a spouse who makes all the difference. I'd keep zebra finches in an aviary in a different situation, anything not too difficult but alive and pretty. My major achievement this year was filling some hanging baskets. I water them with a spray and I was proud of them for months. I work on what I can do, and exercise whenever I can safely. Then recover. I think lots of us are in the same situation but keep quiet most of the time. Obviously I have a lot more energy, I eat very well, simple food but fresh. I am very careful to avoid gluten, as you know. Some people take supplements, I slow down if I don't have Ginko Biloba each morning, my hands hurt if I don't have Curcumin every day. I wonder if there are ataxia specialists in Italy?

[Larobby in reply to pinjem]

Thank you for your kind words, it does help to hear other perspectives. We went to Milan to see a specialist, which involved flying and my brother was so brave to make the trip twice. We were told that he could improve with time, that he had seen patients getting better. However it seems that the only way forward is physiotherapy. I will look into getting him tested for gluten, who knows, maybe that could help. Thanks so much for the support.

[february]

Dear Larobby, What a kind, caring sister you are to your brother! I've had ataxia for 20+ years due to Niemann Pick C disease (extremely rare). My only suggestion is maybe your brother would see a therapist to help him cope with ataxia. I did this several years ago and it really made a huge difference for me! I've also been on an anti-deppressent for many years (as the result of a side-effect of a medication I was taking for a cardiac arrhythmia I was born with, which has since been repaired). Anyway, people with chronic health problems can suffer from depression so I'm glad I'm on it, as it helps me deal with my ataxia better! These are just suggestions, as some people don't believe in therapists or anti-depressants, so I can only speak for myself! I hope, with your help, your brother finds his way, as ataxia is very frustrating and challenging! He (and you) are not alone in this journey! Also, you don't have to apologize for venting, as the people on this site are wonderful for support and advice!!! My best to you and your brother..., ;o)

[Larobby in reply to february]

Thank you so much February, indeed this forum has been a life saviour many times. Yes, we will definitely try to get some therapy, we are on a waiting list for someone to come and visit my brother at home. I hope he will get some benefits like you. As a sister I’ve realised how much I have been ‘grieving’ my pre-ataxia brother. He was such a fun loving guy, and I know he still is somewhere inside him. Please feel free to share what makes you happy. Thank you.

[Catty-Jo]

I'm very sorry for your brother. Is the ataxia something to do with Hodgkins? Physiotherapy can help sometimes. Try to look at the activities that are possible or talk about anti depressiva. I wish him all the luck he needs. Does he like art, music or nature? I try to think about something he likes.

[Larobby in reply to Catty-Jo]

Thank you. Yes, the Ataxia was related to Hodgkin’s lymphoma, fortunately he’s now clear of that. But the ataxia persists. He loves nature, but doesn’t feel confident to leave the house. Hopefully he will improve, he seems to be getting better at times, but then has a regression. We can’t find a pattern. Thanks so much for your kind words.

[Catty-Jo]

Hai Larobby. Is is possible for your brother to try meditation? It makes your mind a bit more quiet. Or listen to nature sounds.

I wish you both the best.

Greetings.