Good day? Nope....: Woke this morning feeling... - Ataxia UK

Ataxia UK

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Good day? Nope....

paullymaie- profile image
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Woke this morning feeling quite positive, planned to try to find my old self and focus on my creative side. Then......I got out of bed....struggling to keep my balance and by the time I'd got washed and dressed my positivity had wobbled out the window. Is this normal with Ataxia, days really vary, some days just wobbling and unsteady but others absolutely rubbish, crashing and banging about hanging on to furniture, walls, window ledges the works. I always have a stick but on days like this it hardly helps. I've only just been diagnosed with Ataxia and haven't had a conversation with anyone yet about walking aids etc. Thank goodness I'm retired and have my lovely hubby to help me. Is this the way my life's going to be from now on?

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paullymaie- profile image
paullymaie-
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goodenough profile image
goodenough

Fraud so but keep exercising and doing what you can. I still knit and crochet with difficulty (eyesight is poor) and make cards (they are much simpler now). I live alone but have some good friends.

sylviagreenhalgh profile image
sylviagreenhalgh

I have a wonderful lightweight walker as I find a stick is not enough. It costs £40 and it makes a tremendous difference- you get it from Coopers of Stortford on line. I have a frame round the loo to get up. I have a handle on the side of the bed to help me get out of bed.I was given a powered wheelchair by the NHS but found it too heavy and I did a lot of damage to the paintwork so I returned that. the occupational dept at your local council will send an OT round to assess possible changes you may need in your home. They advised me to put ramps at the front and back door so I can get into the garden for the first time for 3 years. The OT also suggested adaptations to the shower - in the end I changed the shower room to a wet room. with each of these changes I got them done quickly by people who work for the council but I am self funding- if you have to be accepted that you need these things the council will do them for you but there is quite a long wait. I live alone so have to be able to cope. if you drive you have to tell the DVLA- they took a while to tell me I could drive. If you apply for anything always I enclose a copy of letter from the hospital with the diagnosis recorded - it save a lot of time- I go to 3 exercise classes a week which helps me a lot- both socially and physically- you need to stay active as much as you can. the cards you get from Ataxia UK explaining what you have are useful to give people such as exercise tutors as it is hard to explain the condition. best of luck Sylviaxx

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