What to expect long term.

[Amelia87]

Hello, I'm new to here and this is my first post. My mother has recently been diagnosed with alcoholic cerebellar degeneration. She had a truly awful few years and she coped with alcohol and even though she didn't and doesn't drink anywhere near as much as what you would expect from an alcoholic this diagnosis is still the outcome. I can't find any useful info online and I would like to know what we can expect to happen to her. She is already in a wheelchair, severe memory loss and basically needs assistance with every part of her life. She can't organise her doctors appointments or remember to book her prescription. She can't cook as she can't remember how and would likely start a fire. She needs assistance with going to the toilet, showering and dressing, she can't leave the house alone but doesn't go out anyway due to her depression. The latest development is incontinence, she has been wetting the bed every night for the past week. As much as we are trying to stop her drinking it feels like she's given up trying after the neurologist said she would not improve but may not progress if she stopped drinking. I would really like to know what to expect, at what rate does the degeneration happen and what areas are affected. Will she end up losing all motor function and speech? I just want to be able to prepare so that we can care for her in the best way and look into what help we may be entitled to. If anyone has any info I would really appreciate it, I know so little and am feeling a bit overwhelmed as it's coming on quickly and I am clueless. Much love to you all

[Pheobe13]

Hi Amelia I’m going through the same with my partner who’s had this now for 3 years is his progressive we have carers in twice a day now but he has developed msa as well now my partner is 60 years of age we have funding now so that helps a great deal and have a great team of professionals to help John can’t walk can’t talk properly etc life is hard on both of us

[benning]

First time Ive heard of this,i really didn't know that you could get ataxia because of alcohol??? all I can say is DO YOUR RESEARCH ,online,doctors??

[wobblybee]

Hi Amelia🙂 I’m so sorry. This is known as an Acquired Ataxia, and generally speaking there isn’t much information available, possibly because every case is so individual. There can be numerous reasons for someone acquiring ataxia. It is said that if the cause of an Acquired Ataxia is discovered early enough, action can be taken and hopefully the condition won’t progress beyond the stage it’s at.

The best person to advise on this is your Mother’s Neurologist. Obviously you also need to know of help and care she is intitled to. Speak to your local Social Services department, or contact ataxia.org.uk who will be able to give you advice.

With many of the Ataxias progression is very difficult to predict, and symptoms can sometimes be erratic. We can only generalise here. It really is the best option to make an appointment with the Neurologist concerned.

Best wishes 🙂 xBeryl