Sore eyes

[Maxine12]

Hi everyone, recently my mam has been complaining that she feels like she has stones in her eyes. She had a appointment with the neurologist last week the first time since she was diagnosed last August and he said to get her some moisture drops which I have but they don't seem to of helped. We think she has had psp for about 3 1/2 years +. Does anyone have any recommendations for anything else that might help, it breaks my heart as I know it's really bothering her and she hates to tell me.. Thank you Maxine xx

[Hidden]

If she has "dry eyes" (a common symptom in PSP) then moisturising drops may not be sufficient since they only act for short periods. Try using a long acting medication like Lacri-Lube (Ircal) or similar liquid paraffin based ointment.

Cheers

T

[Maxine12 in reply to Hidden]

I'll try that thank you x

[jzygirl]

Does your mum wear dark glasses. Brians eyes are worse if he doesn't wear his dark glasses because people with psp are light sensitive and that can make the eyes feel worse. Janexx

[Joeglad]

Viscotears sometimes called Carbomer is good for dry eye (common in PSP because of low blink rate). It lasts longer than drops and can be used as often as needed. It is a gel type ointment.

[cabbagecottage]

poor mum . it's my first job every morning when I wake John up . bathe his eyes gently with a solution of warm water added a little gentle wash and baby oil .

it is where the sand man has been during sleep Lol .

the eyes are so sensitive to light they rub them and the crusty bits scratch .

it works like magic she will also have lovely longer soft lashes .

I also use eye drops , You have to be vigilant it won't stop it just cleaned and soothes .

I apdaresar you might finds her skin has becomes grenadier /dryer and itches . I wash that the same way daily

[peterjones in reply to cabbagecottage]

hi cabbage cottage don't forget the tea bags matey peter jones queensland Australia psp sufferer

[cabbagecottage in reply to peterjones]

dam I did forget Peter ,

[peterjones in reply to cabbagecottage]

cabbage cottage \\\ no you did not forget me \\\\\ you told me about the eyes matey thank you very much for that\\\\\cabbage cottage there has been some improvement for which I thank you for peter jones queensland Australia psp sufferere take care miss

cabbage cottage

[cabbagecottage in reply to peterjones]

that's good Peter , Keep it up . another tip . john has very cold hands , I keep a blanket over his knees but he is in and out of it trying to reach tissues to wipe his drooling , Which he has big time . I found a pair of cloth gloves and cut the fingers off . this helps keep his hands warm and spent need the blanket unless very cold . His fingers are then free to hold tissue . it also helps a little to keep his fingers from stiffening together and the hand open.

[peterjones in reply to cabbagecottage]

hi cabbage cottage howsit going mate ok I hope I think I overlooked this one mate but im answering it now well thanks for the tip on drooling which im glad to say I do not have at this time thank goodness you gotta have some relief from some of the stuff we get mate besides I don't want to take everything from psp I have enough to be going on with thanks

went into the garden today with some weed killer fell over twice before i had chance to use it mate well mate I just thought I would drop you a line you should write as book of tips for beginers with psp and what to expect should get everybody to send in 1 item on psp and then put it in book form mate you would make a few bob no good me doing it cause I have trouble with my eyes now and one finger typing id be dead by the time I got things together ahh well mrs cabbage cottag i will say see yer take care of other half best wishes peter jones queensland Australia psp person

[cabbagecottage in reply to peterjones]

bit late in the day for me answering you . you will have to take more water with it , it might help stop the tumbles ..

I went to. parkinsons awareness party this afternoon , they had lots of dancing going on . I did get my dancing shoes on for one dance but had to get back to John , I helped out with their teas . I believe they £600 for the Newport Parkinsons grouo .

talking about falls . the lady chair of the group shuffles everywhere , she has got it off oat bug she falls every hour m I know she sometimes wears knee pads . very stoic lady runs the show and won't give in .

John has one f his better days except for constipation , by the way I don't suppose you have any gunpowder . goodnight Peter

[peterjones in reply to cabbagecottage]

hi cabbage cottage cant help with the gunpowder sorry mate b ut at times I do get the s---------- but not very often matey regards to your husband try a relaxant its better than gunpowder my friend peter jones queensland Australia psp sufferer

[cabbagecottage in reply to peterjones]

he's blooming relaxed enough lol

sounds like you are coping pretty well Peter , keeping doing what you are doing .

at least that's what the GP and nurse keep telling me .

[peterjones in reply to cabbagecottage]

hi cabbage cottage well I am coping pretty well even if I say so myself I try not to let psp worry me its hard but I just let my mind wander off on other things

unless I want to get from a to b and then I try and think my way around don't get me wrong I still have falls;;;;; but im sure not quite as many and I try and stay positive as I can and a laugh and a bit of smiling to if I can get my face up to it well mate good luck say hi to George for me see yer peter jones queensland Australia psp sufferer

[peterjones in reply to cabbagecottage]

hi cabbage cottage hows it going mate

ok ===== that's good well I am coping pretty good I reckon and everybody else that knows me seems to think I am doing pretty good as well I just try and not let psp worry me to much matey if I can . if you think about it to much you'd go banana's , or around the bend, you have got to have some sort of normality whatever normal is these days but im still trying to stay with it mate and I am doing my best to help at home I do the washing up a few pieces of crockery have suffered under my hands but hey thats life i used to break things before i had psp so nothings changed really and make the tea and I try and make my bed where I had a fall two nights ago now and I hurt my shoulder in the same place as I tore it a few weeks ago but never mind it will get better im sure

well cabbage cottage that's my lot for now so take care keep up the good work all the best see yer peter jones queensland Australia psp sufferer

sorry to be late with an answer

[cabbagecottage in reply to peterjones]

hi Peter . good for you that's the fighting spirit . we all do a lot of pretending don't we .

when my husband was first diagnosed nearly ten years ago nor , I told him try not to think too much about it , you could get knocked down by a car before the worse happens .

if I see John struggling a bit more . I get him to start singing , that usually works .

[peterjones in reply to cabbagecottage]

hi cabbage cottage hows it going ok I hope is john a singer matey only I used to be on the stage singer and comedy magic but my voice has gone now that is one thing I truly miss but life goes on

doesn't it mate just thought I would ask that question just curiosity have a great day mate -------psp don't let it spoil it your day regards to john peter jones queensland Australia psp sufferer

[cabbagecottage]

let us know how u get on and if it helps .

[Maxine12]

Thank you everyone I'll try these ointments!!! And cabbage cottage your right I have noticed her dry skin on her face so I will also try bathing with water and baby oil xx

[cabbagecottage in reply to Maxine12]

Ears and eyebrows also can be a problem with greasy the dry skin and itch

[peterjones in reply to cabbagecottage]

hi cabbage cottage you want to try bio oil it would take any wrinkles out of you and start your motor bike mate

a lot of women use it over here and men for wrinkles

blemishes I even used it myself the other night it is supposed to be none greasy my wife grabbed hold of me and I just slipped up in the air through her fingers of course if you do not want that to happen YOU DONT USE IT SEE YER PETER JONES QUEENSKLAND AUSTRALIA PSP SUFFERER

[stalbans]

I also have this problem with my eyes the optision gave me a lubricant of which my wife puts a drop in each eye it seems to work

[cabbagecottage]

the simple things are always best because it's not going to go away unfortunately . my routine with John first thing in morning is , Eyes mouth which also gets mucky and crusty around the lips . I. Was that and have recently started to put a little Vaseline at each corner it looks red from drooling . I also clean his dry nose and the smear a little Vaseline around each nostril .it keeps it softer . as a matter of fact I have also had a very dry nostril problem and can bleed . I must stop picking my nose lol . Seriously th Vaseline also helps that .

john cannot do all these small things himself . Although small they cause him big problems .

watch out for the book of tips I am working on lol

[Tz2388]

Because of not blinking, eyes get extremely dry and are subject to infection. Doc at Mayo told us he was close to losing his eyeballs, and had us buy a vaporizer and at first we had to use a overnight moisturizer every two hours until it was better. Of course, that affected his vision. So as soon as the soreness was gone we went to the lighter ones during the day.

But, it happened again and the eye doctor at home had us do a short course of steroid drops and put him on Restasis. We keep the steroid on hand and use it for a couple of days if there is a flare up. Restasis is very expensive, but we were spending almost as much on over the counter suff. It has been a miracle for us. Some of the Neurologists had said it wasn't recommended for PSP, but we've been using it for about a year with no problems.

[cabbagecottage]

I have been thinking of what u said about stones in the eyes . when John wakes most mornings his eye lashes are very crusty and it does take a bit of clearing . I use a warm wet flannel with a spo of oil this softened and helps loosens it , if then you feel in the corners of the EU you might find that there will still feel bits of grit , which will feel like pebbles in the tender eyes . I clean there's first thing every morning otherwise they itch and she will rub it into the eye . f she still says it's sore use eye drops or and the tea cold tea bags .

[Maxine12]

Thank you cabbagecottage we have started bathing her eyes, and using a ointment, she says they seem to be helping soothe them, I appriciate all your comments xx