BrettDarby2 months ago

Yes, and I would add, of course it has! Actually, I was thinking this morning that I'm getting worse, physically speaking, maybe mentally too.

Elizabethtracy in reply to BrettDarby2 months ago

Thank you for your reply will fetch it up again when I see the specialist not that they seem much use x

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BrettDarby in reply to Elizabethtracy2 months ago

All that I can add is do stuff, anything just to keep yourself ticking over.

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Ostap2 months ago

I’m guessing strength is far more complicated than just pushing hands. If your legs are weak a lot of strength will be gone everywhere, simply because so much of it is supported by the legs. This is just my view and experience.

Elizabethtracy in reply to Ostap2 months ago

🙂 thank you for your reply

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Guardsman682 months ago

Hello Elizabethtracy I’m definitely with you on this one I refuse to do the pushing a squeezing type strength tests they don’t prove anything only to tick a box for the neuro that I can squeeze a thumb or push a palm but In reality I’m struggling with everyday stuff that requires some strength to do but it’s a lot harder than it used to be for me 12 months ago 🤨

NO SURRENDER

coat2003 in reply to Guardsman682 months ago

one has to change how one does all.you have to adopt according to your needs.Peoplem OFTEN FORGET and EXPECT DOING eg hovering LIKE HEALTHY. My balance is shot to bits,using a walker, and have allergies, hence my carpet had to be removed.

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Millwallben2 months ago

yes, in a nutshell. I’m very strong at gripping and certain movements. But others I’m so weak at that it’s like a child could do better. I can’t make the bed anymore as I can’t lift the mattress and tuck the sheet in and moving furniture is almost impossible. I think that some movements require different groups of muscles to work together and these are the difficult movements. When your specialist did that test it may not have replicated the movement you feel week at if it only tested one muscle group. When I had my occupational therapist session she found lots of things I could not do that I did not know I could not do. She spent an hour checking movement and balance. It might be worth seeing an occupational therapist to get this examined.

coat2003 in reply to Millwallben2 months ago

correct,i am in the kitchen and get cramp, regulary i twist like n owl. only an owl has no neck verterbas.i often have to stand wide, wider than my ALREADY WIDE GAIT,m for safety reasons.we all have to relearn things.BREATHING i often choked, now i have to CONSCIOUSLY BREATHE BETTER.that is an example.REMEMBER ATAXIA IS PROGRESSIVE CONDITION.

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Elizabethtracy in reply to Millwallben2 months ago

Hi I did see aiccupational therapist that I got through the doctor but he was useless he didn't help me at all he even came to my house and said I needed rails but then didn't arrange for me to get some so I ended up paying for some myself and told him I didn't want to see him again

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penelope22 months ago

Yes I feel so much weaker. Other posts have explained it so well, re different muscle groups working together to complete tasks that we took so much for granted.Years ago I would regularly move furniture, sofas etc around, decorate, garden, work all day doing household jobs and fit in 2 dog walks a day. Now I manage a fraction of this and don't even attempt most.

As so far as I understand things a lot of people with ataxia don't sleep well but I regularly sleep for 9 hours or more. So what is going on there? The more I sleep the better the symptoms in the morning. Unfortunately this doesn't last long.

Take care.

wobblybee in reply to penelope22 months ago

For many years I had no problems with physical tasks, and mobility was normal. My major problems were Vestibular but I somehow got by.

I’ve been aware that physical abilities have steadily declined ….I’ve noticed these creeping in but somehow managed to work around them. On reflection I realise there has been an insidious decline to where I am now…My strength is seriously effected, motivation isn’t what it was…. I struggle controlling a vacuum cleaner, dread making the bed and I can ignore household tasks no problem…because they are so exhausting. Just this morning I thought I’d kicked the television remote under the sofa..and abandoned any thought of looking for it. My daughter recently asked me and my husband to babysit…and I was relieved I had an excuse not to do it..

Clearly it’s not just lack of physical strength that’s causing my change in attitude..I think realisation has finally kicked in..

Generally I’ve slept well, apart from the usual bathroom breaks during the night. But recently this routine changed and I find even though I go to bed very late (and don’t sleep during the day), I wake before 6 in the morning. It makes for a very long day.

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penelope2 in reply to wobblybee2 months ago

Yes I feel it too. It is this slow insidious decline like you say. And I think I've stabilised too. I find it really hard to keep positive, From what I've read about the brain, our mental health is not "just in our head " but a real physical symptom of ataxia.

God if only I could only grow old gracefully.

But hey ho things could be worse.

Take care.

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Ostap in reply to penelope22 months ago

I sleep very well,! Which surprises me as I’m pretty idle compared to how I used to be before CA started to take its toll. I’m guessing staying upright consumes a lot of background energy during the day.

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PatsyIpswich2 months ago

I can't add much to these replies except to say a neurophysio explained to me the interference of messages from brain to neuromuscular movement. If you hold on to something solid your balance is much better than something that can move.. even with back against a wall, you can lift a mattress maybe. Certainly at my age of 80 years, despite passing strength tests, I have to reassure my brain that I am safe before doing anything. Stay safe and don't forget to smile x

Knittlng in reply to PatsyIpswich2 months ago

I agree on both counts holding something tight helps if I feel I can’t move also leaning against a wall helps if I have to stand for any length of time. The best thing I have done is to get a cleaner, she changes the bed for me, one hour a week is enough. I am 81 and so similar

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Cuds2 months ago

Hi Elizabeth,

yes, strength does go with ataxia. As others have said, muscles work in groups as well as isolation. you need the big muscle groups for lifting e.g. legs and trunk. Without these, lifting is really hard because you are usually concentrating on staying upright as well.....and if you concentrate on one thing and forget to tell the brain about the others e.g. knees, these can give way. A single push/ pull in a neurological screening test is not a test of your overall strength. Finding different ways to do tasks is the way forward and an occupational therapist from a neuro or reablement team would be worthwhile (not an occupational therapist from social services - they concentrate more on adaptations to your home).

Hope that helps.

Elizabethtracy in reply to Cuds2 months ago

Hi

Sorry i am only just getting back to you but how do you get a occupational therapist from a reablement team. I had one before he was useless i got him when I first saw the first specialist he arrange for me to see one

thanks

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Cuds in reply to Elizabethtracy2 months ago

Hi Elizabeth,Ask your GP to refer you. Its usually only for 6 weeks but you would get the input from different members of the team eg OT, physio etc. They usually refer people AFTER a bout in hospital but if you tell your GP that you are doing what you can to prevent a hospital admission e.g. falls they may refer you. Or depending on where you live, see if you can referred to one of the Ataxia specialist centres.

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Elizabethtracy in reply to Cuds2 months ago

Ok thanks 😊

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Rezzy662 months ago

Reading all the comments, seems as if we are all in the same category of losing strength and balance. From my neuromuscular recovery specialist, loss of coordination between the neurological and physical abilities plays a huge part. She always says focus more on what you Can do instead of what you can’t. But keep trying the things you can’t safely. You’ll be surprised how some tasks actually return. Your mind and body will figure out a different neuro-pathway to accomplish a task.

Stay positive. I’m 2 years younger than you and sometimes I can’t open a car door all the way. But I’m getting behind the wheel once I squeeze in.

Midori2 months ago

I'm 74, and can't get around so well any more. My knees are very unstable, and I'm getting Arthritis, can't open jars, can't bleed my house radiators, and things like that. My upper body strength isn't too bad, but below the waist, I'm falling apart! My hands are packing up grip wise.

Cheers, Midori

Elizabethtracy in reply to Midori2 months ago

I get around okay but it's annoying when you can't do things you have always done lm younger and at the start of ataxia so I know things will get worse my knee have started aching but didn't know if it was to do with ataxia or not but I suppose when you walk funny something else has to give I have just read your story it sounds like you haven't had it easy

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Midori2 months ago

You're right there!

Cheers, Midori

february2 months ago

Hi Elizabethtracy,

I have Ataxia due to Niemann Pick C disease (NPC). I’ve had it 20+ years and I’ve lost strength over time. I’m also 68 years young, so that probably has something to with it! I use a rollator 24/7, as my Ataxia has progressed . I can’t pick up and carry anything as my balance is so bad I can’t let go of my rollator (or I’ll fall)! I always say “Ataxia the gift that keeps on giving!

Elizabethtracy in reply to february2 months ago

Thank you for replying 😀

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