Can anyone help? My husband has recently been diagnosed with PSP. He complains much of the time about lights being too bright although he wear sunglasses - even in the house sometimes! His eyes are also very watery and he has been advised to have special glasses made. My questions are two-fold: 1. Has anyone found any particular sunglasses which help the light problem? And 2. Does anyone know whether there are any opticians who understand PSP and can prescribe the correct glasses to help him focus? Boots Opticians don't seem to know anything about PSP and insist he has already had this year's eye test!
On another matter, I'm struggling like a lot of you I read about on the Forum with trying to be supportive but at the same time getting frustrated by the evidence of this disease and what it is doing to my husband of 56 years. 'Like living with a stranger' seems to be a common feeling but it's not one I like, however true.
All help much appreciated.
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Ruth1921
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He should see a neuro ophthalmologist. It’s a subspecialty. We were told Larry’s eyes watered because while sleeping he didn’t keep his eyes fully closed and the corneas were drying out. He has used an eye ointment at night in his eyes. It is petroleum based to keep the corneas protected from drying out.
I agree, he needs to see an opthomologist, I also have psp and my last visit to opthomologist I was diagnosed with ocular degeneration, am taking special eye vitamins and tested every 6 months.
Ruth1921, It needs to be a NEURO OPHTHALMOLOGIST. My son's first symptoms were DOUBLE VISION, FATIGUE, and SLURRED SPEECH. The N-O should be aware of different neurological EYE conditions.. The glasses prescribed for my son, because of his double vision, were PRISM glasses. They were very expensive (but when the prism was lower, 5BO, we were able to purchase them at Costco. I live in the San Fernando Valley of Los Angeles, CA, USA). The prescription we brought was gotten from Kaiser Permanente...his medical insurance plan. The prescription had a slight darkening of the lenses which helped my son immensely with the glare (inside the house). When outside he would use FITOVERS, non-prescription sunglasses.
The Double Vision use to drive my son crazy and with the prism glasses there was relief. He was also told to use over the counter "refresh tears" or something comparable. He also got Blepharitis (sp?) and for that was given a prescription of "Erythromycin Ophthalmic ointment" and every monring and night we would clean his lids with over the counter LID SCRUBS and baby shampoo.
Thank you for that, enjoysalud. We live in UK and have a N-O hospital not far away but have to wait for a referral and I was hoping to do something for my husband in the meantime. What you say is very helpful. I can get some imitation tears here: the medication is called Hypermelose, so I'll see about doing that too.
Everyone on this site is so helpful. I guess we're all so distressed about this terrible disease that we're trying to help each other as best we can. Cheers!
Chris too struggles with bright light (photophobia) so often wears dark glasses indoors. We have a bright, light home with huge windows, so blinds are often drawn to take off the glare. His dark glasses are wrap around which help.
Re watery eyes, this can be caused by the tear ducts not working so our optician has given us some drops for dry eye which help.
With regard to the quality of opticians, we go to an independent family group in the county and they have been most helpful and knowledeable. Chris has prisms in tbis glasses which help focussing and eliminating the blurred or doible vision which is a symptom of PSP. However Chris' eye muscles seem to be affected more now so his vision is difficult at times
I can identify with how you feel, it is like living with a stranger at times, but I know deep down that he's still in there, just cant show it.
Thank you, Anne. That's good information and it helps me when I think I can do something positive other than see my 'stranger' just getting a little worse every day! All good wishes and return hugs.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
These are our experiences on eyes problems related with PSP:
•Dry eyes is a classic problem: drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative. Also warm moist compresses help. To clean the eyes, wash your hands beforehand and always use a gauze sterilized by each eye, moistened in physiological serum.
It can be also an allergic problem. Consulting an ophthalmologist who has experience in PSP is recommended.
•Clarity produces "photophobia" and irritation of the internal eyelids. She wears sunglasses frequently applied artificial tear drops or saline serum or artificial tears .
•In the morning the eyelids may appear "stuck". To avoid it put eye ointment in at night to help lubricant the eyes. It is also possible that the eye may not stay closed all night and it dries the corneas. The ointment is 97% petroleum jelly and 3% mineral oil.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
Hi. My mum has PsP for about 6-7 years post diagnosis. Sharing issues on her eyesight. Her eyes started having an aversion to light about 5 years ago and she would wear sunglasses at home too. Parallely her eyelids would close involuntarily sometimes. Whilst medication was given to control that , and some reco Botox - which we didn’t get done , over a period of time drooping eyelids have moved to open eyelids - her eyes remain most of the time and hence eye drops are used for lubrication. Inbetween she had cataracts in both the eyes and was operated for that too by a Neuro opthalmologist.
Definitely progress the referral to the opthamologist, also get one for an orthoptist - they look at eye movement, so if double vision is an issue they are the ones to see.
My Mum wears dark wrap around glasses indoors and out. We went to the local blind society shop to get them as they did ones which different colour lenses, which colour helps most varies but Mum found green was best for her, you can order similar ones from the RNIB website. They fit over her normal glasses.
Your GP (or Community Matron) should be able to prescribe eye drops & ointment whilst you are waiting for an appointment. Mum uses Hyloforte which can be used as often as required, Clinitas Gel which is richer but impacts the vision a little more & Lacrilube or Xalin ointment at night. We are also waiting for a referral to a cornea specialist to see if they have any better ideas.
Try to get an appointment with a Neuro-Opthalmologist. People who have PSP don't blink often enough which leads to dryness and watering. Watering of the eyes contributes to blurring of vision and is the body's response to the eyes being dry. Lubricating artificial tears will help. We have found gel tears to work best.
Hi unfortunately this plays a big part psp with there eyes, the light hurts there eyes my brother said it was like someone shining a flashlight, he wore sunglasses in the house, plus the drops for dry eye, he is just about bedbound so we keep the curtain closed, but he wanted it even darker so we got room darling shades for him he is fine with that, so sad I hate this evil dreaded psp. Nettie
My husband has been diagnosed with PSP as well. For over a year he was going from Dr. to Dr. getting numerous MRI’s tying to figure out what was going on with him. He was told by every Dr. that he did not have Alzheimer’s or Dementia which he feared was going on. They sent him to a Phychiatrist thinking he was just depressed because of retiring, they put him on an antidepressant which made things MUCH worse! Finally we did a PET scan and found the brain definitely had damage in 2-3 areas in the frontal lob.
He went to the Brain Center in Dallas which is primarily a research center, we knew some people that were able to get him seen by some of the best of the best...that is where they concluded he had PSP.
I feel like I am living a nightmare, he is not the person I married, he is at times childish and at other times combative. He is in a constant state of confusion not able to find his words or at times how to find his way around the house!!!
He has a low tolerance for light as well and often wants to wear sunglasses. His eyes water or burn depending on the amount of sleep he gets. He is up most of the night shaving and showering at 1:00am sometimes getting dressed and getting back in bed!
I am at a lose.....I feel so so sad.....I am still full of life and was looking forward to this part of our life being filled with travel and happiness....I am scared as well....
Oh, how I can empathise with you. This is like living nightmare, you're right! Like you, I was looking forward in retirement to doing a load of things together... holidays, walking, having fun with the grandchildren and so on. Now, I'm the only one with any energy (and I've no idea how long that will last at the current rate of caring) and I'm so afraid of and for the future of us both. My husband was also up early this morning shaving and showering: when asked why, he said he'd got to go out. When asked where, he just said 'Later'. I could get no more out of him. I really don't know how to cope at present and despite kindness from friends and medical people, I do feel very alone and sad .....
My husband was finally diagnosed in July. They gave him Zoloft for the depression which made him worse, and then switched to Prozac which took 6-8 weeks to kick in. Now they increased it, and it still isn't helping much. Is this common with PSP? Is there any relief?
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