How does an ataxia terminal stage look like?

Hi,

My father is suffering from SCA. He began to have gait disturbances when he was 40. Now he is 54. He can barely walk on his own. He doesn't use a wheel chair but can walk with the support of a person, or holding something fixed, that too very slowly. Although he can eat on his own, he also has some swallowing problems, though not very often. We try not to give him hard textured food. He has difficulty speaking, and gets exhausted after a small conversation. I also feel he has some dementia. But it can also be due to the tension and anxiety of his disease.

My mother looks after my father and I am worried about how much more effort my mother has to put to take care of my father. My father is already completely dependent on my mother from bath to moving.

I want to know how much worse will it get? What is the ultimatum of this disease? Are there any descriptions of ataxic patients' terminal conditions?

Thanks in advance

16 Replies

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  • Hi

    Welcome to this forum and thank you for your post.

    It is difficult to answer your questions as all of the ataxias are different and people are affected differently. It is likely that your father's current symptoms will continue to progress but no one can tell the rate. It is possible his symptoms could plateau for a while. Your Mum and Dad must be guided by your GP and neurologist. However I would strongly advise that you contact Social Services for help for your Mum in providing care for your Dad.

    I would also advise encouraging your Dad to speak to his GP and neurologist about his symptoms of dementia. Although you are absolutely right his symptoms may be due to stress and anxiety there are other things that present with symptoms of dementia and these should be ruled out.

    Best wishes

    Harriet

  • Thanks for the reply Harriet. We will bring these to the notice of our neurologist :)

  • I'm sorry to be reading all of the above as I'm a full time carer now to my partner who at first was diagnosed with progressive ca 3 yrs to date but last June had another MRI and we were told he has msA please look this up ! Symptoms all sound the same it is worth looking into but still there is no treatment or cure and it is progressive it is awful as we struggle everyday he is on a breathing machine at night now and 3 wks ago had to have a bag fitted for the bladder hope you get help x

  • Thanks for your reply Pheobe. I am skeptic about whether my father has MSA. My father's sisters also had the same disease and the time they died, they were more or less self dependent. So I guess its not MSA. With new medicines, my father is definitely having a longer disease period than his sisters. However at the same his health is deteriorating with age.

    Nevertheless, your advice was helpful. I'll keep it in mind :) .

  • Hi I think if it was me would be to rule it out ? But this bloody disease is cruel and I feel your mum x

  • Yes it is indeed a cruel disease. But I don't let it take away all the happiness from our lives :)

  • May I know what we're the ages of your father's sisters at times of death ? Also did their symptoms appear late as well ?

  • Their symptoms appeared around 27-28. They died in approximately 12-14 years. My grandmother says they did not die because of complications from ataxia. They were still quite independent at that time. I do not know the cause of their death. My grandmother is quite old so she might make a mistake in the numbers. Had it been in this generation, with vitamin supplements and other medicines, I am sure they would have lived longer.

  • Yes . You are quite right

  • Both my father and brother had sca and there symptom started in early 30 and they both lost their fight mid 40's they both were bed ridden and unable to talk, my brother had a feeding tube, everything choaked him. So basically to answer your question it's the ability to continue moving and keep talking when those end life isn't very easy! Best wishes for your family!

  • Thanks for your reply. Did your father have a feeding tube? Also can you tell me how long they were bed ridden? Were they able to sit on their own?

  • Yes, my dad did have a feeding tube, his legs were amputated when he got gang green due to bed sores about 7-10 years after being bed ridden. My brother wasn't able to walk and was wheel chair bound for 12 years. They both were able to sit up while they were mobile but as soon as they ended up being unable to get out of bed they could not sit on there own.

  • For how many years were they mobile after the symptoms appeared?

  • My husband was diagnosed at 50 years old and is now 64, so in relation the same time span as your father. He has used a wheelchair for around the last 8 years, sight is affected, has a feeding tube and doesn't have any food or drink orally, his speech is severely affected and I usually translate to others. Has the Speech and Language Therapist (SALT) been to see your father? They will listen and feeling for the way he swallows and advise on the texture and thickness of foods to try and avoid aspiration, along with all the complications that brings.

    My husband has many of the Ataxia traits, but is happy despite being in and out of hospital for most of the last year. We have Personal Assistants through the week and I try to ensure he does as much as he wants and encourage him to go that one step further, such as fishing and target shooting. We're still able to have a good laugh and find humour in lots of silly little things. Don't get me wrong it's tough and I have shed many tears, but neither of us will give up.

    In answer to you're question about 'what terminal stage look like' in my husbands case I feel that would depend on which part of Ataxia is causing his illness i.e. Pneumonia with sepsis, urosepsis etc, I can't think of anything unique to end stage ataxia, but I don't have that experience therefore can't give a definitive answer.

    If you're father does have dementia, then that a whole new ball game, I hope you find the answers you need.

    I hope that all makes sense to you, regards to all of you, it's a hard fight, enjoy the good times and make as many memories as you can regardless of how long you may feel he has to live.

  • Hi angel cake

    Your story is very sad but sounds a lot like mine,my hubby was diagnosed 8yrs ago with cerebellar ataxia age 55 he's now 63 in a wheelchair last 4 yrs wears diapers has trouble swallowing which worries me he uses a straw. His speech is very bad most of the time which is really frustrating to both of us but like yourself I say the wrong thing sometimes and we both just burst into laughter. It's very hard indeed wishing you all the very best.

    pat

  • Pleased to meet you pat, albeit virtually, that was my fist post and Its lovely to get a reply 😀.

    In reply to your worry I'm going to start a new post about feeding, so not to high jack live_your_live post.

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