Just a question.: Good Evening! I hope this... - PSP Association

PSP Association

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Just a question.

Gracie_Girl profile image
22 Replies

Good Evening!

I hope this finds everybody well.

Just a quick question. Has any of your loved ones have any success reading with an e-reader or tablet? If someone has, which worked for them?

It was suggested that a Kindle would be something that my sister could use to read again. The suggestion came from the person staying with my sis and dad that stuck their nose in business they shouldn't have.(I'm trying to be nice, but, alas, I'm not doing very good.) I bought a Kindle and there is no way she would be able to see the print (too low light), although the font gets big enough. Any suggestions?

Thanks,

Gracie girl

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Gracie_Girl profile image
Gracie_Girl
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22 Replies
abirke profile image
abirke

My husband lost his sight to supranuclear palsy pretty quickly. When he could no longer see the regular computer, that pretty much defined the rest of the reading material, mechanical and otherwise! We do use a self made alphabet board so he is able to see those letters and basic words; but as far as literature , it went the way that everything else did; completely or severely limited . I know you wanted positive experiences, I do hope you get some!

AVB

millywigg2 profile image
millywigg2 in reply to abirke

My husband can no longer read anything really.We use the alphabet so he can try and point but dexterity is poor too,you cant win which sums up CBD/PSP.The SALT team provided a large tablet/communication aid but it was short lived.Audio books good but concentration levels brief and he cant put them on or turn volume up etc.Sorry it sounds negative,but these digusting diseases conquer all.Thats in a nut shell xx

D0ttieL0ttie profile image
D0ttieL0ttie

My husband's left eyelid closes due to PSP. He was an avid reader but now reads with audio books. He gets through 3 audio books a week using a small CD player and earphones and enjoys this a lot. I get them from the library free of charge. Good luck xx

NannaB profile image
NannaB

My darling's reading ability went very quickly. I tried him with several different electronic devices but none worked. He falls asleep listening to audio books. He never did like reading though so someone who does may gave more success. I now put the radio on for him most of the day. He can't see the TV anymore. I also read to him and stop when I know he is asleep.

X

MaddyS profile image
MaddyS

We tried several reading/communication aids, none worked. He enjoyed listening to BBC worldervice, which we kept on all day. Their programmes last about 20 minutes and are repeated throughout the day. I assume that by the end of the day he understood what was being reported. One can only hope. He always loved music but did not want to listen to it any more when PSP progressed.

Pippin123 profile image
Pippin123

Hi Gracie girl. don't know if you know that kindle has audio books on a section called Audible. They have a massive selection. I think you can try for free then I not sure if you pay for each download or if you can download them through a subscription to kindle unlimited. I Ave Cbd and docs tell me it doesn't affect the eyes but I have been having eye problems. Luckily my kindle fire is quite brightly lit and I can read it ok at the moment. I know I would definitely miss having a good book on the go xx

Heady profile image
Heady

I don't think there is any thing. S can't concentrate long enough to read. I tried audio books, again the concentration wasn't good enough. I'm afraid in our house, it's the 24 hours news programmes or sport that we have on, from morning until bedtime!

Lots of love

Heady

easterncedar profile image
easterncedar in reply to Heady

Our experience exactly. TED talks seem to catch his interest sometimes, though, too.

Judes1 profile image
Judes1 in reply to Heady

Same for us too, what would our loved ones do without the TV, it's so sad when they have been so active all their lives. xx.

Amilazy profile image
Amilazy

Hi Graciegirl my experience with M was the same as milliwig and NannaB. It's not just the eye coordination it's the concentration that PSP robs.

As she cannot lift her head TV is no longer any good, though she listens to radio music stations most of the day and gets hers news from repeats or from me reading the local paper.

I have found downloading TV programmes on the iPad/tablet great way for M to watch programmes as she watchs with me stopping and restarting later as her concentration varies. Usually takes 4 sessions to watch an hour programme.

I have tried DVD films but no good as usually too long though I have found she loves cartoons: minions, bugs bunny, finding memo, etc. Great to see her smile and chuckle though often a prelude to a choke. Also found a way to relax her for sleep in the evening is to play her a classic comedy from bbciplayer radio. She chuckles and drops off for the night.

I have tried audiobooks but M finds them too slow but she enjoys adaptations such as "Book at Bedtime" from BBC tend to be 5-10 15 min episodes so easily handled. Again downloaded to tablet or smartphone.

So I would suggest rather than a kindle get a tablet (not necessarily an iPad) the bigger screen the better but check the weight as you will be holding it as PSP removes grip and muscle coordination. Download the programmes at home onto the tablet as this easier to manage especially if using in an area without wi-fi (M's nursing home good for lots of things but has no wi-fi and poor mobile signal). Remember to charge battery each night.

Good luck Tim

Gracie_Girl profile image
Gracie_Girl in reply to Amilazy

Thank you for all the ideas. It's wonderful you have found so many things for M to do. I hope I'm able to do the same. I'll look into as much as I can here in the states. This is all new to me, so wish me luck. And luck with figuring out how to work the tablet. I'm not very tech savvy. Should be interesting. Lol!

Good luck to you and M. Here's some ((((((hugs)))))) for ya!

Gracie

abirke profile image
abirke in reply to Gracie_Girl

If you have a good library, you might ask them what sort of ereaders or audio books they have. My husband uses PLAYAWAY. Basically using earplugs....If Bs falls asleep to it...nice way to nap and if/when he wakes up while it's still on....he just continues on.....He does have the concentration level to rewind if he wants . The book is about the size of a deck of cards so it's light and fairly manageable for Bruce. Our library has a good selection and you can order a book if you want.

AVB

KJN99 profile image
KJN99

The one good thing about the kindle is that you can download audible books which my husband uses every night when he goes to bed. He chooses which book he would like to listen to and it is soothing before dropping off to sleep.

Good luck.

daddyt profile image
daddyt

I'm fortunate enough to still be able to read at this time... the larger the font the better. My church actually prints the weekly order of service in a large font just for me (: When the time comes where I am unable to read any further, I'd consider audio books, radio or the 24 hour televised news feeds. I'm quite sure that some of the caregivers on this site will share what is, and what isn't going well for them. One thing is for certain though, as the PSP progresses... strategies will need to change also.

Gracie_Girl profile image
Gracie_Girl in reply to daddyt

Thank you for your information. I'm glad you are able to still see to read. I don't know if S. can, with help, read again, but I'm willing to do anything I can. Good wishes and ((((hugs)))) to you.

Gracie

Gracie_Girl profile image
Gracie_Girl

Thanks everybody for telling me what works for you or more ideas to try. This disease is so insidious to rob our loved ones of everything, even the little things that they could enjoy. It could give them something to hold onto. S's eyesight was one of the first things that started to go very early. She tried prisms in her glasses, but that was no help at all. Her eyes are still open, but she sees double a lot of the time. Unfortunately or fortunately, I'm not sure which, she's able to see the tv, but she fixates on it and it is hard for me to get her to do anything else or concentrate. I hope I can find something she can do even if it's temporary. If she isn't able to see, I will definitely try audio books. As you all can testify, we'll do ANYTHING to help them feel comfortable or give them something to live for. My heart and my (((((Hugs))))) go out to you all and your loved ones.

Love,

Gracie girl

ps. I have to tell you what we did celebrate this week. I had my colonoscopy and PET scan this week and I am happy to announce I have been cancer free for 3 years now. We did our Happy Dance and had a little party. It's always a sigh of relief every year when I get my tests done.

Heady profile image
Heady in reply to Gracie_Girl

That's wonderful news.

Lots of love

Heady

Robbo1 profile image
Robbo1 in reply to Gracie_Girl

Great news, from one survivor to another. Here's to many more C-free years! X

Gracie_Girl profile image
Gracie_Girl in reply to Robbo1

Thank you! In my mind, I'm still partying. WooHoo😀

hellebore profile image
hellebore

I have found that a Kindle Fire works well. It is small but the screen can be altered and has a brightness button. It is internet ready and so you can get loads of apps for tv , film and radio. Talking books are great. It's also good for putting privacycontrolls on so no worry about unauthorised access. It is a bit too tied into Amazon but does give a lot for its size. I have one of my own and use it for all sorts including this post. I would recommend a non slip cover that doubles as a stand and you can get clamps that will hold it up on a bendy stalk. It's not perfect but does the job.

I have to say the Olympics and 24 hrs news keeps my F entertained. He can't concentrate on a story line so anything that is instant and changing is great.

I bought a mini ipad to which I can download audio books. I download audio books from our library so they are on loan free for 21 days. My husband has earphones plugged into it and sits for awhile every morning listening to audio books.

goldcap profile image
goldcap in reply to

N, I just started with the audio books and he seems to enjoy them as well.

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