Farther newly diagnosed with PSP

[khola]

My father has recently been diagnosed with PSP. The one thing that is bothering him is his eyelids. They can close in the evenings and he struggles to open them. I am also concerned about his eye movements. Can anyone recommend what we can do to help him?

[easterncedar]

Please do a search on eyes and eyelids on this site. you will find many discussions about this. botox is one common option for keeping the eyes open. There are springs that can be implanted and gizmos attached to glasses that hold the lids up, apparently. My guy simply ceased to complain about the problem, when a fall made us put off the botox injections. I'm sorry he has given up caring, but I think the injections would have been more trouble than worth it for us. Others have had good luck, at least temporarily, with botox.

As for the eye movement, nothing I have heard of helps this. Prismatic eyeglass lenses, mirrors on the dinner table may provide some functional benefit for a bit, but the eyes most often just become more fixed in an upward gaze. Some folks don't experience this at all, but that is fairly rare.

[khola in reply to easterncedar]

Thanks for this. Very helpful. I am new to this site so was a little confused about how to search but have figured it out now. Finding out so much, so much knowledge here. I'm really pleased.

[easterncedar in reply to khola]

I don't know how I could have coped without all the help I've gotten here. I'm glad you found it, too.

[NannaB]

Hi, I'm sorry about your fathers diagnosis. Unfortunately the supranuclear part of the title refers to the eyes and their restricted/lack of movement. Being unable to blink is also part of the condition. I know some have had Botox to help the eye lids and no doubt someone on this site will tell you about that. Are you in the UK? If so, contact the PSP association and they will be able to send you lots of information.

Your father will need a lot of support, practical and emotional, in the future as will his main carer (you?) and family and I hope you get all the help you can.

This site has helped me for several years now and I'm sure it will do the same for you.

Best wishes.

Nanna B

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[jillannf6 in reply to NannaB]

ia gree nana b

lol jillxx

[NannaB in reply to jillannf6]

How are you doing Jill. Are you still managing to get to the choir etc.

Any more holidays booked. I hope you enjoyed the last one.

Take care

Lots of love.

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[jillannf6 in reply to NannaB]

yes nannna b we have 2 more wee booked 1 ion n yrkahire & t other in dumfries and gallloway again r-just got back from there and had goofd weather !Reply

im stilll going tot choir d tai chi d arknsons bt I'm a bit of a part ttimer at th e mo

;lol;jill

xxxx

[NannaB in reply to jillannf6]

Jill I'm so pleased you can still go away and also go to your clubs/groups. Long may you do so.

Lots of love.

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[Nanny857]

Sorry your dad has been diagnosed with PSP. I agree with EC and Nanna B, this site is great for getting help/advice/information, and also comforting and supportive when you are down or feel like screaming. Take care, Nanny857 xx

[abirke]

My husbands lids get very tired and droop over his eyes too....B has learned to live with this and thus we really don't do anything . Maybe not the right attitude and certainly not an answer you are looking for so let me just say that Eastercedar is correct! Recently, there have been a few very good discussions so I think if you look a t the right hand column under "Related Posts" you find what your'e looking for.

Good luck and I am sorry for your father's recent diagnosis

AVB

[PUTLAND]

My husband had been suffering from eyelids closing for about 4 years. He was getting botox every 3 months it did help and throughout the years treatment needed to be done more frequent until it was no longer effective. Our eye consultant did an operation about a month ago to connected the eyelids to a muscle in his forehead to open the eyelids this has helped but I know myself that it is getting to the stage that his eyes will eventually close completely. Try the botox and ask your eye specialist about the operation. Best of luck I know we are all trying to help as much as we can. xxxx

[NannaB in reply to PUTLAND]

Wow! I've never heard of that kind of op before. I hope the effects last a good period of time.

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[NHGrace]

Sorry to hear of your news. I don't know where you live, but in the US they do botox to help with eyelids. i've also heard massaging the face can help. good luck!