My husband has PSP gaze. He has trouble keeping his eyes open and on a good day when his eyelids are open he cannot focus on my face.He has

[Pippalina]

Peripheral vision only which frustrates him very much.Has anyone found found anything to help with the gaze side of this devastating illness.Ed can longer write or read so I. do read to him and he listens to the TV. Has anyone found anything to help.

[SharonAB]

Dear Pippalina -

I have heard of people with macular degeneration running the TV through their computer and magnifying the image many times over and watching the screen very close. I wonder would the same be of some benefit or make life impossible...?? Possibly worth trying or not??????

Also I met someone with PSP and he had the TV mounted very, very high on the wall

Regards,

Alana - Western Australia

[Pippalina in reply to SharonAB]

Thanks Alana..Anything is worth a try..best wishes..R.

[NannaB]

Hi Pippalina, You could have been talking about my husband. We have put the TV low down as his head is bent forward so he had a job to look up, even with prism glasses. A couple of weeks ago I went into a charity shop and found an old game of bagatelle. It is brilliant and we play it every day. My husband even wins. He can't see the score but he can pull the spring back and loves the tinkling sound of the metal balls as they hit the pins. Something very simple but there is so little he can do that any little thing helps. He even laughs when I score nil.

I'm sure others will give ideas and I look forward to reading them to help us as well.

Best wishes.

Nanna B

[Pippalina]

Thanks Nanna B for your ideas I am sure we will get other ideas to help with this problem. R

[erin]

Hello Pippalina,

My husband has Botox injections every six weeks, which helps to keep his eyes open for longer.

They do seem to be getting less effective now, but they definitely help.

We have black out blinds now, as he is very sensitive to light, and his eyes stay open for longer in a dark room.

Artificial tears also help, and the Botox actually makes them more necessary.

The eye closing issue is what my husband finds the most difficult to deal with.

He did try 'Lindy loop' glasses, they have a kind of spring that holds the eye open, but he wasn't that keen. Worth a try, though.

The ophthalmologist can also put you in touch with someone that can help you adapt to living with limited sight. I'm not sure what their job title is, we haven't accessed it yet.

He also has an 'alto' talking mobile phone, which is brilliant, and a 'talking' watch, both bought from the RNIB website ( UK)

Best wishes x

[Trish-dave]

Hi. We found something that helped big time.My daughter bought I head band with speakers in it,picked up a old I pod and downloaded history items off the computer and books.Dave can't work it but I can.He loves it

[Pippalina]

Thank you to everyone with their suggestions they are all worth a try.This site is so helpful. I appreciate the replies.Rx

[mommajo]

I feel your pain. My husband's eye closing all too often occurs while he is driving his electric wheelchair. I try to monitor him and grab the controls if his eyes close, but it's really nerve wracking! In some cases we can use his manual chair, but unfortunately, since he weighs twice what I do, my pushing him is not always feasible (and he balks at being dependent). Meanwhile, I try to not get too attached to furniture, walls, or other nice things while demolition derby guy is on the prowl. I try to check with him on the condition of his vision before taking him out to dinner or a store (I keep expecting them to meet him at the door with a big burly bouncer to keep him from entering and bouncing around like a pinball). Why do I feel so put out? He's the one who's a prisoner in his body....

[jimandsharynp in reply to mommajo]

Mommajo, Yes we do, at times, feel "put out" when we aren't the one with the problem. It's all part of the PSP trip you are on. I tried my Sharyn on a riding cart in Costco and after almost knocking down two displays it was off the cart and back to using the wheelchair. lol Jimbo

[Heady in reply to mommajo]

Hi Mommajo, I understand completely what you say about feeling put out!!! We all have to remember, that PSP, does not just affect one person, the loved ones/carers are also blighted by the same disease, yes, we are not the ones in the wheel chair, relying on others, we are not the ones who are struggling to see, going to the loo for the hundredth time in the last half hour, the ones who can't express their feelings, so have to go along with what ever. WE are the ones to have facilitate, the going to the restaurant/store, we are the ones who are driving everywhere, when previously, we were not capable of even driving to the restaurant( maybe, on the way home!!!) we are the ones cleaning up, picking up, second guessing what's our loved ones are thinking. I could go on. Nobody in this world of ours, is getting an easy ride. All we can do, is our best, some days that works, some days not! I mean everyone, not just carers, we are in this TOGETHER!!!

Lots of love

Heady

[Pippalina]

Hi Mommajo

This certainly is a cruel disease?We have not got an electric wheelchair, we have one with a power pack as I cannot push my husband up any sort of incline.He is still at the stage where he doesn't like being pushed around so he tends to travel mostly in the car not driving of course. it is very hard for the carer as well to come to terms seeing the person you love suffering with this awful condition. Take care Rx

[jimandsharynp]

My wife Sharyn has some eye issues but not to the extent of your Ed. Keeping a gel (not drops) in the eyes might help to keep them lubricated and thus better. Unfortunately eyes are the distinguishing part of PSP. Perhaps others might have answers. Jimbo

[Pippalina]

Thanks Jimbo for your thoughts.Yes the eyes were the only way the diagnosis was made after numerous scans and tests showed nothing.He is having a bad time today trying to focus I feel so helpless.Rx

[JudyJ]

I agree with the recommendations of Botox injections; in fact, I have a consultation appointment in 2 weeks tho my Doc recommended it 2 years ago; I have just been chicken about needles anywhere near my eyes.

However, over time, the tremors (daily) I get in both the upper and lower eyelids have taken a toll. My right upper lid is droopy and on occasion, shuts completely involuntarily. I cannot open it manually either; have to wait for the spasm to subside.

And, my fluttering lids skews my vision.

As to the PSP gaze itself, it was with me 24/7 for a few years. Over the winter/spring months, I went thru a rather intense physical therapy program at a facility that specializes in movement disorders. One of the things we worked on slowly was regaining the ability to move my eyes from left to right. I do that exercise daily and repeat it several times. It was as if my brain forgot I could move them if that makes any sense.

My Neuro considers me "mid-stage" in my PSP journey. However, the more I read from caretakers on this site, I question it. Meaning from what I've read about the abilities or lack of them for those who have PSP from their dedicated caretakers, I very, very grateful I have the abilities I do. I'm not deluded; I know what's coming. But I cherish everyday.

I was diagnosed 2 summers ago and was in terrible shape up to just recently, when I started physical therapy. I'm not saying PT is THE answer; not at all. I do know it helped me and by the grace of God, I've entered the first period of stability I've had in years (my Doc, for specific reasons, is sure I had PSP at least 3 years or more before I was diagnosed).

I do hope you check into Botox; it might help; can't hurt. Also, because we blink less if at all, consider applying artificial tears several times a day if you aren't already doing it. Dry eye is a common complication. And it can get extreme. Because of my PSP gaze and lack of blinking, my eyes were so dried out I developed pits in my corneas and cataracts in both eyes, and had to have surgery on both eyes.

Better hydrated eyes can also help with eye movement, as I was told. I use fake tears 4 to 5 times a day, as well as had tear duct plugs inserted to help the situation.

The very best to you and your husband. I have enormous respect for the caregivers on this site. Please take the time to take care of you, too. I know it's easier said than done.

Judy Johnson

MN

USA

[Pippalina]

Hi JudyJ,

Thanks for your reply, we do use eye drops for dry eyes and are awaiting a reply from our GP about Botox injections he told us he had not heard of this but our community Matron had recommended them.Eddie's physiotherapist also gave him eye excercises to try and improve his upper and lower eye moment. I have support from family and friends so feel quite lucky and we are taking each day as it comes. Kind regards R in Devon.

[JudyJ]

Good to hear; sounds like you are on top of things, difficult as it is.

My understanding from my Neuro, who's referred me to another Neuro in his practice that does the Botox injections, getting approval from insurance companies is quite complicated and not always successful, at least here in the States. Very strict criteria is applied to the approval process.

Because Botox is associated with a cosmetic procedure and used quite excessively here in the States, (I am NOT a cosmetic surgery/alteration advocated; my money can be better spent and I insist on aging naturally), it comes under close scrutiny even tho Botox can do wonders for persons with certain medical conditions.

It's my opinion only, but our culture in the States is very youth-oriented and/or driven to do what it takes to appear 'youthful'. It's a thorn in my side, particularly being the parent of 2 daughters in their early 20's. Been talking to them since they were wee ones on this subject because it's so predominant; many of their peers, even in high school were getting cosmetic surgery done. Coached and coached them what is important and of value is achieving self-esteem and then keep improving upon it. Changing your outer appearance, particularly at a young age won't accomplish that at all. Happy to say, so far, so good.

I do hope obtaining Botox procedures for his eyes in the UK is an easier, more attainable treatment than here in the States.

Finally, as to ability to improve then succeed in my ability to move my eyes back/forth, up/down during the PT process, happened spontaneously. It just happened during a session. I was stunned. So were they. I really believe my brain had forgotten I could move them. Never thought it would happen again in my life time; I truly feel blessed.

Wishing you some smooth sailing in rough waters going forward.

All my best,

Judy

MN

USA

[Hidden]

Hi Pippalina,

I help care for my friend who has PSP. He too has a gaze like you describe, but it's different from your husband in that he has no peripheral vision at all, he can only see what is straight ahead, and he finds it very difficult to move his eyes from one line of texts down to the next. He does however enjoy watching sport on TV and also listening to it on the radio. I have also just bought him an Ipad so that he can listen to his favourite music, and read the bible, listen to sports podcasts. The beauty of a tablet/iPad is that you can increase the font size to what is suitable, adjust the background lighting on the iPad itself also so it's not too glaring, and then scroll up or down, so there's minimal eye movement involved for the PSP sufferer. He loves it and uses it every day with a bit of help from myself and his wife. Also this week I have ordered a tablet/iPad holder that will clamp on to the table that sits in front of my friend, and it has a long bendable arm that will very easily hold the iPad up at eye level for him so he doesn't have the hardship of holding it himself or moving his eyes to see the screen. You can also get talking stories, radio...the list is endless to be honest. So it's another suggestion for you anyway, I know it's not for everyone though.

[Pippalina]

Hi scotsgals77,

Thanks for your reply, funnily enough my brother- in- law has just suggested the iPad for my husband he has put sky sports go on for him. Your other suggestions are worth looking into.