One small step for reading, one giant... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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One small step for reading, one giant leap for concentration

Regaining-control
Regaining-control

So excited... I have just finished reading my second book of the year. Doesn’t sound much but I used to read a book every 1-2 weeks so it has been a slow journey. Funny the simple things you once took for granted can now be so important as milestones to reach...

Now to work on lasting more than an entree when hubby and I go out for dinner ( sadly not often at all as the shaking/ myoclonus usually gets so bad we have to leave in a hurry). Thank goodness for takeaway 😉

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Hi there,

You're so correct in that the simple things now mean so much.

My wife has FND, and can only read for a few minutes before her eyes tremor.

Brain stimulation again I guess.

Does this happen to you and how long can you now read for.

Sincerest of wishes always!

Tony and Kim

Hi Tony and Kim

I can read no more than 4-5 pages at a time as too much for me and eyes hurt, brain hurts ( if that’s a thing). I can surprisingly cope pretty good at work 5 hours at s computer yet maybe cause it’s night but I read and I get exhausted quickly and of course my shakes start so not easy to hold book but I couldn’t read last year so hopefully by Christmas I will have read heaps more. 🤞

Many thanks for your reply.

Much appreciated.

Have a lovely day.

Tony and Kim 👍 👍

M3rry
M3rry in reply to LEEJUNFAN

Touch wood I haven't got this problem (yet).

But after talking to people who have had other reasons to find reading difficult - and letting them play with my tech - we found that e-books are not the same as paper. We found that changing font size to the right comfort size; some wanted it smaller, some larger, or double line spacing, possibly change the font, definitely change the page colour.

Now admittedly most of this tried and testing came through dyslexics and people who have physical sight problems but it might also be relevant for you.

This does bring up the problem of sourcing the e-books, I have heard some really nasty behaviours from the big companies (down to deleting an authors work in progress from their system due to copyright issues!?). You might have heard the

at the Microsoft library has been shut down - everyone was given a refund.

There are companies out there who treat e-books like a book, you buy it you keep it - and they even supply them in various formats to meet most systems and don't care if you have to format-shift to make it work. (Baen books is at the top for that, they even have a free library, a bit limited but they are free to try!)

All the best in continuing your reading - getting lost in a good book is a great and safe escape mechanism.

Well done thats awesome im trying to start reading my self to keep the brain going but the words move i swear lol which make it hard but slow and steady

Thanks... I started with just a paragraph a day, felt so hard but there’s hope for you. I switch between reading and sudoku. On the phone so I can cheat s little 😉

Congrats on the book! I get it. I haven't read one in four years. My FND started with my eyes and worked down.

Hoping someday, I'll get there again too. 😀

Thanks

I hope you get to this stage one day soon or at least have found something else to keep your interest 🤞

I used to read my paranormal romance novels along with other fiction stories, every day for years and since this happened to me I haven’t been able to read a book since. It’s hard enough typing this and reading comments my eyes get blurry and sometimes vibrate and then I get dizzy. I read a couple paragraphs of a new novel but had to stop cause I felt bad and got so frustrated cause before I used to read two whole novels a week. I lost my passion to read. I hope to try again soon.

It’s so hard the “simple things” that were once so easy.. I really hope you get to the stage of focusing and reading again. Have you tried some brain focus exercises? I found this the best thing to gain focus and help with balance early on... four X’s in my fridge ( magnets in back) done as a north south east west configuration and I stand s distance that I’m comfortable with and keep head straight and just use eyes to look between them changing it up as I go. May just help or may not but if like me, I’ll try anything. Mind you I haven’t been able to read s book since I wrote this ha ha

Good luck though

I think u mentioned this to me before and I forgot to try it. The one my physical therapist does is to focus on a letter on the wall and move your head up and down for a minute and then side to side another minute. Then I had to follow my finger and let me tell you it makes my feel a dumb feeling like I’m slow or drunk but it doesn’t feel good at all and last time I got very dizzy had a headache and then started to shake. It happened last month and I haven’t done it since and now my eyes are worse but it’s so freakin hard. So for your exercise you said to just look between them? Like the center of them? Do you actually look at the Xs at all?

Sorry hadn’t seen your reply... moving my head up and down like you mentioned was also really bad for me and made me horrid. Could take a day to recover sometimes so I feel for you. With mine I have to keep my head straight so no body movement and just move eyes up/down, left/right. To the four X’s. Then when I got adventurous I would change the way I looked at them eg left to right or in circles between X’s... I still do this now 9 months on as never took them off fridge ( will not admit I forgot to take them off🤪)

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