Degeneration in non-genetic ataxia

[Larobby]

My brother has cerebellar ataxia caused by a lymphoma (now defeated). He feels that he is slowly degenerating (eyesight is getting worse and he is no longer able to read or watch telly, balance is worse and he’s on a wheelchair for most of the day). Is degeneration “normal” in ataxia even if the causes are not genetic? Any help or tips to manage his quality of life?

[springlove]

Hello, I'm the same way except I got myself a mobility scooter so I can get out of this 'cell' I'm in. My eyesight is very poor and I get very close to obstacles. sunny days are blinding so that's a nuisance. My left leg gives way sometimes in the flat. I have CA too

Jean

[wobblybee]

There are some types of ataxia that are linked to cancer..but it’s likely your brother would have been tested, and told if he had a specific type.Ataxia doesn’t need to be genetic in order to have progressive symptoms, my own ataxia is said to be Idiopathic ( cause unknown), but I have general ataxia symptoms, and they are progressing, slowly but steadily.

Illness is one of the triggers for Acquired Ataxia, and sometimes if the cause has been found and action taken, symptoms won’t progress, but this doesn’t happen in every case.

My problems are centred around balance and eyesight, this makes me want to sit still quite a lot. I used to be an avid reader but concentration isn’t what it was and I tend to skim through books now. I can still enjoy watching television so that’s a bonus 🙂

It’s all too easy to be apathetic ..difficulty enjoying simple things can definitely do that..so I find I have to grit my teeth and just get into the fray sometimes 🙂

🤔 Maybe your brother would like to listen to the occasional audio book..depending on what his interests are.

I’ve had very good care and treatment from a NeuroOpthamologist, it could be worth considering asking his GP for a referral.

🙂 I hope you find something to spark his interest

[PatsyIpswich]

Good replies and just want to add my good wishes. I am almost 80 with CA and have found much encouragement in being in touch with others in vary situations. Ataxia UK have a befriending service which can be by phone. Tell him to stay safe and don't forget to smile 😊 Patsy x

[Larobby]

Thanks everyone ❤️

[Ukalimcn]

Hi, I am52, my brother and I have cerebellar hereditary ataxia, my balance , mobility and eyesight poor atm, not sure if ataxia is getting worse or my menopause or thyroid.I hope it doesn’t progress but trying to stay really positive.

Even though it’s hard, I truley believe positively is the way forward.

All the very best to your brother x