Reading: I Always loved reading and b elong to a... - Ataxia UK

Ataxia UK

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Reading

silkwood profile image
8 Replies

I Always loved reading and b elong to a book club.Over the last year my Ataxia has got very bad.

I have had huge difficulty turning pages. I bought one of those rubber things(I'm not being rude)like a thimble that cashiers used when counting notes.It really cuts down the frustration.I ` found it helped.

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silkwood profile image
silkwood
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8 Replies
klazien profile image
klazien

Have you tried reading an E-book? It idoesn't weigh much, I only a to press down lightly on the side to turn the page and can enlarge the fond. The added benefit is that it can hold many books. That is good since I read a lot.

silkwood profile image
silkwood in reply toklazien

I do use a Kindle sometimes but my motor skills are so poor thAt my fingers wwobble all over the screen.

wobblybee profile image
wobblybee

I used one of those when I was working, panic set in when I couldn't find it!

These days I tend to skip over passages that drag the story out, I suppose it

really relates to lack of concentration.

I've always loved to read, getting lost in a story can be very relaxing :-) xB

klazien profile image
klazien in reply towobblybee

Many books have boring passages. I scan the boring bits. It seems that writers have to fill pages with anything but the plot to have enough words for a book.

Once I can't see at all anymore I will have to go to books on disks and it is not possible to scan those so I will have to listen to everything. Still, it is better than no book at all.

silkwood profile image
silkwood in reply towobblybee

Hi Beryl

I have read many of your posts and wonder if you could help with regard to vision/.eyes and CA.I was diagnosed in 2009 but had investigations about 2 years prior to that.I had no` problems with my eyes until my 40s when i needed reading glasses.I was expecting that and over the years(I am now 55)I needed stronger magnification. Just 18 months ago my eyesight got a lot worse.I have been to several opticians but they hadn't heard of ataxia and when I described MY symptoms,it was decided varifocals would not be a good idea soo for years II just wore prescription reading glasses. Now this year all my symptoms are much worse.Both long and short sight is bad and I am having some double vision.I have spoken to my Neurogist whho says no hope.Also I have seen an opthamologist to eliminate eye diseases.Should I go back to an optician or consider botox or further investigations.

I need to know the possible effects of Ataxia and eyes.

wobblybee profile image
wobblybee in reply tosilkwood

Hi Silkwood :-)

My eye problems started with what my GP thought was conjunctivitis.

Extreme pain ( like toothache, in my eye) had me rushing to the Emergency Dept at my local hospital. They diagnosed Iritis. It was quite severe and left me with double vision. Then Nystagmus kicked in.

From being a child, I'd always had a 'lazy' left eye, although treatment

was never prescribed to correct it. Iritis occurred in both eyes but it's the weak left eye that is most badly affected. Light coming in at an odd angle causes double vision.

In an attempt to correct the double vision I progressed through various strengths of prisms built into the lenses of my glasses, plus an additional stick-on prism! Normal vision was restored, it was fine sitting still but once I was on the move Nystagmus played havoc , my eyes bounced against the prism and made my balance worse.

So, I was given an Occlusal contact lens (it blocks vision completely) for the left eye and a variofocal prescription lens for the right eye. For me, this made a big difference to my balance, Nystagmus ( bouncing eyes) became less of a problem.

I see a Consultant Opthamologist and she offered Botox to try and realign the left eye, it does work well in many cases. Unfortunately my eye didn't respond, so she offered 'squint surgery' which was more drastic but which would hopefully have a more dramatic effect.

My distance glasses which I wear for watching TV and driving still contain a prism. I've recently had chemo and haven't worn contact lenses for a while, but I hope to reintroduce them soon because they're preferable when walking around. At the moment, I get by

with reading glasses from the pound shop :-)

So... I realise I've rambled on :-) I've tried to relate this in a logical sequence, not easy with Ataxia :-) Personally, I can say I've had more

positive help from the hospital Opthamology dept. than a regular Optician. Although I commend an Optician in Boots for recognizing

Nystagmus, refusing to prescribe glasses at that time and referring me to Opthamology.

I'm glad I tried every treatment offered, well you have to don't you :-) xB

silkwood profile image
silkwood in reply towobblybee

Thanks for your reply Beryl.

silkwood profile image
silkwood

In big libraries they have a whole shelf or two of books you can listen to. They use the latest technology and are called Playaway.Ask. Librariians should advise.

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