any advise !

its early hours of the morning and got on the net which i very rarely use as not very good , and foung your ste , my mom is 78 and has had cerebella ataxia for 10 years , but was only really confirmed aprox 2 months ago after pushing for scans blood ect , its getting worse , the last 2 weeks she feels tired and vey low , some of your comments say a sugar fix may help but she is a diabetic , shes a real fighter and will not give in but this time it seems to be getting the better of her. any sugestions that may be of help ! signed beaver

10 Replies

  • well, I see my physio twice a week; I do exercises at home (stretching mainly): I use my

    pedal "machine"; I go for a walk ( 30 minutes ) daily with my outdoor-rollator


  • "pedal machine"= ergometer

  • not sure if I have any advice for you or your mom, except to say that I have been recently diagnosed myself. I knew something was wrong, but used to feel that "tomorrow will be better". Now with the diagnosis I know that is not going to happen. Its hard to get your head around and I totally know how she feels. All I would say to her is go with the flow, have a good old wallow and her natural fighting spirit will come back I am sure .xx

  • I agree with siver sometimes the shock of what you,ve got and that there is no treatment takes some time to get your head around; But keep moving and excercising and maybe seek professional help from a pychologue;

    I find sugar makes my symptoms much worse so although i love sweets i never eat them now - the sugar rush is very short with everything much worse for days afterwards;

  • I don't find the sugar affects me one way or another. I try to walk alot and exercise whenever can. Also I know it sounds crazy but she can turn everything she does into an excersize and should remain busy even doing household things such laundry and cooking and chopping. I also read aloud--5 articles a day. I don't use a cane or any device but she can, given her age. My CA is supposedly auto immune based and I get IVIG treatments each month. I don't know is this helps. I live in Jerusalem.

  • Hello Leaver

    Your Mum has a lot to get her head around what with Diabetes and Ataxia. Give her time and she will come through. I really don't know about a sugar fix but even if it did work it would be no good for your Mum.

    You're very welcome and we will help if we can.

    You and your Mum take care


  • It sounds as if you live in the states. I would investage wheather there are any specialist Ataxia Centre or clinics near you. Look on the web or ask your doctor. Good luck!

  • I live in the US, diagnosed 10 years ago with Sporadic Cerebellar Ataxia (unknown cause). I'm 59, diagnosed at 49, although I believe I had small signs before that. Anyway, enough about me...,ha! My suggestions: Physical therapy can be helpful, especially due to your moms age. Exercise for strength and balance and general stretching is good. A pt can advise good age appropriate exercises for your mom. As others mentioned, pedal machines are a good way to exercise legs. Eating as healthy as possible, although if your mom is diabetic, she already has to eat I certain way, I assume. Talk with her doctor/neurologist about supplements, like a multi-vitamin, fish oil, CoQ10, other vitamins etc. that may be helpful. Talking with someone, like a psychologist or psychiatrist, can help with emotional/depressive issues due to ataxia. A support group (if you have one in your area) or like others mentioned, an ataxia center/specialist can be invaluable for coping. A neurologist that specializes in ataxia can be helpful. I use a cane (past 2-3 years) to prevent falls. Others use walkers, power chairs or wheel chairs, etc., depending on needs. As others have said, ataxia id difficult to wrap your head around, but embracing what you can still do, rather than focusing on what you can't, makes all the difference. Ataxia is frustrating and challenging, although my neurologist always tells me be as active as you can be, safely, of course (easy for him to say...,ha!). Sites like this (Ataxia UK) can offer support, as well as the "Living With Ataxia" site, based in the US. The "National Ataxia Foundation" (NAF) offers helpful information. Sorry to be so long winded, just trying to help. Your mom is not alone in her journey! My best to you both..., ;o)

  • Remember her dignity.Loss of this is so important to me.

  • My wife takes vitamin C, D and iron supplements,which she says helps her energy levels. She also tries to keep as active as she can.

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