Does anyone know----?

[Greenkerrycounty]

Does anyone know of anything that works to improve the lack of eye movement in PSP? I think this is the symptom that breaks my heart the most.

[Amilazy]

I try making Margaret follow my finger while holding her head, but it tires her very quickly, I have also noticed that her blink rate has almost stopped our GP has prescribed eye drops but M hates having them though they do help reduce the redness. The fixed stare can be disconcerting but my worry is that as her neck stiffness worsens the lack of eye movement will effectively make her immobile. Sorry not much help but it is unfortunately limited eye movement is a major symptom of PSP. Our optician suggested eye exercises but said they would only be delaying tactic. Best wishes Tim

[abirke in reply to Amilazy]

Delaying tactic? whats' that?

[Amilazy in reply to abirke]

He says that the eyes will become fixed eventually exercises put that date off. My exercises for Margaret are siting her in chair I hold her head in one hand and using other hand move fingers in front of her eyes at about book reading range. Encourage her to use her eyes to follow the fingers. I can see if she moves her eyes and congratulate or encourage, it looks a bit like Middle Ages torture but it seems to work though she gets very tired concentrating hard for 5 min, so only do it in morning for a couple of times.

I agree with the mantra exercise keeps functions while apathy loses them.

Best wishes Tim

[Heady in reply to Amilazy]

Is your optician says we are wasting our time? I hope not!!! My way on thinking, every day you can save your loved one from serious eye problems, is worth its weight in gold!

Lots of love

Heady

[Amilazy in reply to Heady]

No Heady, she suggested the exercises almost 2 yr ago to extend Margaret's eye movement but she was realistic in saying that exercise would extend movement for a period and that there would be a time when no matter what exercises given, PSP would stop the movement. Margaret is nearing that stage as I can only get a slight movement from her eyes now and she tires very quickly and gets grumpy if I force her for too long. I agree any exercise whether eyes or standing up and assisted walking helps slow the progress of the condition and keeps our partners with us longer.

Tim XX

[Heady in reply to Amilazy]

That's alright then, she demoted from top of the list, come the revolution!!!!

Lots of love

Heady

[Heady]

My theory at the moment is exercise,exercise, exercise! I am sure any exercise improves all movements, including the eyes!

Lots of love

Heady

[abirke in reply to Heady]

How do we exercise the eye? I have tried having him move his eyes with my hands ....he simply cannot....If you have some exercises , I would love to know what to do....I have failed here

AVB

[drameet]

U mean the double vision? Double vision management to some extent using special glasses. Consult a optometrist

[alibid]

I've heard some people say the've had Botox in their eyes, but I'm not sure how much that's for the movement of eyes or eye lids.

[Amilazy in reply to alibid]

Botox seems to be suggested for a few things eye movement, reduction of saliva, wonder if it is just a last resort by medics who may be grasping at straws or if it is a magic bullet. Anyone had any experience would be great to hear if any good?

Best wishes Tim

[abirke in reply to Amilazy]

The only thing I have heard about botox with the eye, is the eye lid.

It may not be able to close...they botox it to remedy that situation. Or, as in my husbands case, the lid may not be a able to open.....they can rememy that. However, for the price and the temporary results , I have not talked to B about it....He seems to remedy it by holding the lid open....though most of the time he has his eyes closed; opening them when the tv comes on. Has anyone noticed the color of their mates eyes have faded? B's eyes were a hazel with green around the pupil. they are now a pale blue sort of the color of the reply box on our posts!

AVB

[ketchupman]

My wife got another round of Botox to the eyes 2 weeks ago. This is probably her 5th treatment in the past 2 years. I guess it helps. It does cause the eye to draw and stay open more, but sometimes I wonder if it's harder on the eyes and on her. She usually only keeps one eye open at a time, once the Botox has worn off, which is usually after 3 months. Since she doesn't blink but once a minute, her eyes dry out, which then causes them to water. So by having Botox done, it keeps the eyes even wider, causing more dry eyes. It does help with her appearance by having her eyes open, but that's something she could care less about these days. While she doesn't tell me this, I'm afraid it causes her to have more double vision, since she can't close one of her eyes. I have heard that when you see double, closing one eye helps, which is why they often have you wear an eye patch. Another freaky thing is the first month after having Botox, I've noticed her eyes wide open in the middle of the night, even though she is truly asleep. Again, I think it's probably hard on the eyes to be open all the time.

It's a tough decision to make about Botox. And it looks really painful when they administer it (small needle that is inserted around the eye, above the brow, and on the cheek). But my wife is a real trooper and handles it well and never complains.

Best wishes to all who are dealing with this mean disease.

Ketchupman

[camper]

The first time I had botox in April it worked for 3/4 weeks. When I went back in June the nurse gave me double the amount and for some reason it hasn't worked in fact it seemed to affect my face. My eyes keep shutting due to blephorspasm. I'm due to go back in September so hopefully I'll get it sorted then!

[alibid]

I have a 38-year-old friend with PSP, diagnosed about 6 months ago. His main issues are that his eyes don't track and he is rigid in his neck and shoulders. He had Botox in the back of his neck, he said it was extremely painful to have done and it was just as much of a nuisance to have a floppy neck as a stiff one so he doesn't think he'll have it again.

It really is a nasty disease - we've been learning a lot in a short space of time! Our local support group is really great, but most of the people who go don't seem to come on here, which is a shame as it does help sharing experiences.

My friend is lucky, like so many of you, that he has a really caring and supportive wife of 2 years. His Mum is also amazing - she sadly just lost her husband to double pneumonia after 5 years suffering from frontal lobe dementia, but she' still keeping her spirits up and has a beautiful smile.

I love hearing about how everyone handles things and where you still find the joy in life, so thanks for sharing both the good and the bad. 😊

Alison

Shropshire, England

[Hidden]

I have no idea why and I won't endorse anything but I have been using a vitamin supplement from a Californian firm called RHP. I no longer take prescription drugs - which made me very ill indeed - and although I will certainly still die, I may do so without pain and disgraceful disability. In my last months all I want to do is help people. Love, Tim