Ataxia Support Network



My partner was diagnosed 3 years ago but has given up on our relationship, he says this is how he is now, he just don’t seem to care anymore saying he feels nothing, it’s got to the stage where I am on the verge of moving out and he’s doing nothing to make me stay.
I think this is the end for us, has anyone else gone through thousand what did you do? Thanks


Oops predictive text! That should say anyone else gone through this and what did you do?


That's very sad...I have Ataxia and became a self centred monster..She left me but we remain friends..I have no

answer..Make sure you talk about it,ok!

Much love..Ozzy


Sorry to hear that Ozzy can I ask what you mean by a self centred monster?


I have not been through this but maybe they are pushing you away "because you're going to leave anyway". I would make sure you talk about it. Maybe he's in a depression because of the ataxia. Maybe talking to someone can help or even meds.


Self centred monster because my 53 years of activity,productivity were over..So I foolishly hit the booze and came verbablly nasty to my wife and friends and didn't give a Sh-t..63 now>>livingwithataxia the best way I can and won't consider a relationship because I still get mad at this hideous conditon..

.I'm much nicer now,thou! lol :-) Easy on the booze,good diet,exercise and await a cure?? Ozzy

Julie x


Thank you sorry to ask you that, my partner isn’t like that it’s just we seem so distant now, if I don’t kiss him or hug him while watching the tv he won’t do it to me, he won’t say he loves me, he says he loves me but he’s not ‘in love’ with me because he says that’s how he is now, he says it’s not me he would be the same with anyone.
Like you he used to be very active, he played American football for 5 years then went on to cycling which he loved and still does but misses it so much, he bought a sport 3 wheeled cycle but he doesn’t seem to be bothered to sort it out.
He has a tremendous amount of body pain is this normal? He’s been on gabapentin and naproxen but they don’t seem to work anymore so he’s stopped taking them.
I’m at a loss to know what to do, about 6 months ago he was very depressed where he didn’t get out of bed and I can see him heading that way again, he’s not safe out alone with his stick, he said he’s not sure if he feels safe out alone with his walker anymore either and feels his independence is slipping away from him and at 45 he’s still young.
I’m just at a loss now what to do, can you Ozzy or anyone who reads this give me any advice maybe I would appreciate it.
Thank you for the very long blog.


Julie, one thing that “might” be going on as far as the kissing goes is that he is not able to “think about doing it at the moment.” I know that it has happened to me several times. I have often been guilty of forgetting to say goodbye to my friends because I am so focused on using my walker and not falling. I don’t mean to do it, it just happens. I hope that this changes, you seem like such a nice person. Take care.


Thank you Bob. X


Emotional problems commonly occur along with cerebellar ataxia not just because of the feelings of self defeat and depression but also because the cerebellum plays a huge role in regulating emotions and feelings. You need to remember that it is not his fault he is going through this and experiencing these feelings, it is a condition of the disease. He needs you more than ever right now to be understanding, you may find that he wants more time alone and this is normal as he is trying to adjust to some major changes going on within himself. It will take a lot of patience and some sad days on your end but that is just a grain of sand compared to what your partner is going through. I myself have cerebellar ataxia and a lot of knowledge on neurological disease. I hope this helps!


Hi Julie
12 years and I’m still struggling with my condition. Depression comes with something like this and also mourning the old active body. There are days when I don’t want anyone near me and others when I need to be held. It isn’t easy for either party and so confusing when the boundaries keep shifting. I found swimming is a great way to exercise and relieve some of my depression and anxiety. Learn to speak with each other regularly about problems and positives it’s a tough road but so worth the effort to stick with it. Thoughts and prayers are with you