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Ataxia UK
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finding communication hard

I have F.A, diagnosed aged 18, now aged 55 years. I recently moved to Merseyside to be nearer my youngest of two healthy daughters, she's now aged 26 and recently married. I have gone through or, am still going through, the dreaded Menopause. Have deteriorated a lot and am now finding it hard to communicate. Because of bad hearing, I cannot use the phone and rely on emails and texts. Due to recently obtained [from NHS!] hearing aids, my speech has slightly improved!!!, though still slurred.My eyesight has recently gone very bad. I now have tunnel vision and am blinded in bright lights e.g. shop lights. My dexterity has got worse, now I'm finding it hard to feed myself and typing takes me so long now. I already use a trackman marble mouse, operated via my thumb and even this is hard now! Is there any help out there?How do you cope?Any tips? How do I register as partially sighted?

6 Replies

Hi😊 I googled 'how to register as partially sighted' and a whole host of helpful links came up🙂 I clicked on the first one moorfields.nhs.uk ( in search box I put 'confirm partially sighted') and basically an appointment is required with a Consultant Opthalmologist (my Optician referred me for treatment at a local hospital Eye Department). An Eye Test is done, a form filled in, and this is then registered with the local authority🙂

My menopause finished when I was 54, I really sympathise with you😏 I don't have FA but it certainly challenged my ataxia symptoms.

Contact AtaxiaUK helpline, explain your specific difficulties and you should be able to get practical advice 😊xBeryl

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hi, thanks so much for searching for me, I have been referred to a specialist and I have had a brain scan. Just waiting now for an appointment now to discuss the results.I shall ask then . U are lucky not having FA but, can I ask did any symtems got better, after the 'M'?

ihllask him.


🤔 Hard to say whether ataxia symptoms eased. To be honest, it was way back in 2004 and my memory is inclined to be hazy😏 I was very stressed at the time anyway because my GP wouldn't take my symptoms seriously. I only got diagnosed with SCA in 2011, after I started having falls.

My ataxia symptoms fluctuate, the basic imbalance is with me constantly, as are eye problems (double vision & Nystagmus). Triggers can cause deep fatigue, I have to be careful not to get overtired, or too stressed😏 When this happens I can be literally 'laid up' and zombified for a couple of weeks. But, as you say, I am lucky it could be far worse😏

If no-one here with FA sees your post, I do know there is at least one Facebook FA Support Group🙂 xB


ok, thank you


Hi i am Louise 32 I have fa I was dignosed at 14 I'm wheelchair full time I one eye that works when Im tired my speech is slurred and I only have one vocal cord. 2 yrs ago I got hearing aids my right ear is the bad one my hearing on left side is medium.

1 like

Arh.... feel so sorry for you....I seem quite well of compared to you........you need to be a strong character......so how do you manage? feeling so silly now, there's always somebody worse off than yourself!! Be brave


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