Hello all! my dad has PSP for about 2 years. it is difficult especially for my mum:-( who takes care of him all the time. one of the problem

we experience are his eyes. He rather keeps them close as they are itchy and very sensitive for light. also very red inside. The doctor gave us a cream , then eye drops but still nothing helps.... Did anyone experience anything like this? what did you use? My dad lives in Poland but i live in UK. Greetings to all !

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  • My husband has known about his PSP a little over a year now. Three years ago he was diagnosed as having left sides Parkinsons. His eyes are real bad but he has the opposite as your dad. He doesn't blink. He has stys in his eyes all the time. He has already had to have them lanced a couple times but they keep coming back. Has anyone experienced not blinking and eyes open all the time?

  • Yes mum had the same used cream and drops also regular eye masks the ones u put in the fridge also wrap around strong sunglasses which she wore all the time xxx best wishes louise

  • Hi, I am my mother in laws main carer and she suffers from this a lot too. We have noticed that the itchiness and the watering is mostly due to her sensitivity to light, which is part of the psp. We have got her a couple of peaked caps which she wears often indoors and out. We have also installed some blinds in the house so we can control the light better. My next step is I am going to ask the opticians about getting her her perscription glasses but using the adaptive light lenses. They get darker or lighter and adjust to the light. if your dad doesn't wear glasses then a pair of normal sunglasses would help too. Hope this is of some help.

  • My Dad often shuts his eyes - we were told that involutary eye closure is one of the symptoms - he never said they were itchy and they don't look red - he just can't control his eyes. We used to think he was tired but now know he's often awake with his eyes just closed. Please look after your Mum and put her in touch with any carers associations you may have in Poland. My Mum had a complete breakdown looking after my Dad - physically and mentally (also had a total hip replacement herself last year) and my Dad was an urgent case to move to a nursing home 2 weeks ago. I wish we had done it sooner (Dad has had PSP for around 6 years). Dad feels safer and more relaxed and Mum can focus on getting herself well again. Good luck. Tania.

  • We used Restasis drops two times daily (that is the maximum dose) along with lubricating drops throughout the day. She also wore sunglasses that wrapped around her face on bright days. This helped her with dry eye.

  • We found a baseball-type peaked cap useful for shading Tony's eyes from strong light.

    Mo

  • Hi Zuzanka2,

    My Dad had similar problems too. We are in the UK. Optrex makes an eye spray called Actimist 2 in 1, dry +irritated Eye Spray which you apply to closed eyelids. It is really good as it slow releases into the eyes and has a lipid(fat) in it which helps to lubricate the eyes as well as soothing the eyes. It is very expensive but I carried it with me always so that I could give Dad's eyes a spray whenever I saw the redness and soreness lurking. Another thing I think you should be aware of is not only the temperature of the room your father is in but also the humidity level. Often, I would go to see Dad and he was obviously suffering discomfort in his eyes and I found that if I opened the window which was close to him and generally freshened the atmosphere of the air in the room he was greatly relieved, could open his eyes and eat his meal happily. Ensure that there is no wind or breeze blowing onto his face though. Dark glasses were a help in the early stages and he wore those willingly, in fact actively looked for them to wear. So sorry for your problems, it is awful to watch the suffering. Any good chemist will have the optimist. There are 2 types, make sure you get the one with the lipid in, ask the pharmacist behind the counter.

  • Thank you very much for that!! I do appreciate all advice i get here. We are trying now a cream which i had to get from Germany- bepanthen. We will see what will happen after using it for a while. All the best .

  • Dear Zuzanka2,

    I am really surprised that you are using bepanthen from Germany. You can buy bepanthem from any Tesco pharmacy counter and it is widely used for nappy rash for babies' bottoms. I have NEVER heard of it being used as an eye ointment. Are you sure of your facts? Look it up on Google or go ask your G.P. Gosh, I am shocked, maybe I am very ignorant about the matter, but I know it was used in the nursing home on my father's bottom so you have me stumped and worried for your father.

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