PSP Association
5,563 members7,580 posts

Newly diagnosed with PSP

After 4 years of seeing countless doctors and specialists for the cause of my "unbalanced" state, i finally saw a neurologist 4 days ago who diagnosed me with PSP, after extensive testing. Although I am relieved to get to the bottom of my suffering, i am grieving at the thought of what lies ahead. Already my eyesight is bad (blurring, watery eyes, double vision, can't look down) and my balance is worsening to the point I use a walker or cane when I go out. I worry about becoming a burden to my family; I currently live alone and hate to lose my independence. I am scared.

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You can voice any concerns, thoughts or frustrations here. There is a vast wealth of collective information to be found on the site.

I would start looking at the types of caregiving options in your area. Talk to the doctors, they may have some ideas on dealing with any current and future needs.

Ron

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Sorry to hear you have to join this site but everyone here is most helpful and give comfort. Suggest your GP, OT, and DN's become involved in your welfare as soon as possible. Lots of helpful information here and you are not alone post as often as you wish someone here can always give good advice.. Sad to say it but "welcome". Jx

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I am sorry that you have this PSP

I don't know what else to say.

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please don't be scared remember that psp affects people in different ways and there are sub-type of psp some are less aggressive that others. I have had psp for about nine years now I was first diagnosed with parkinsonisms and am currently not an any medication as nothing seems to work. try all the drugs they give you but if they don't work just ditch them. i have seen so many over-medicated people it makes me cry, good luck with your journey.

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Sorry to hear. The unknowns are the scary part. Everyone presents differently. The watery eye treatment we found out is an eye ointment that is 97% petroleum jelly and 3% mineral oil. Comes in a tiny tube. Put on the lower eye lid to get it in the eye as needed. Hot compresses for 5 minutes as well. The cornea is drying out because you are either not fully shutting your eyes when blinking or they crack open while sleeping drying the lower part of the cornea out. If you haven't seen a neuro ophthalmologist you may want to. I had no idea they existed until this disease showed up.

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Interesting. Thanks.

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We are here for you. 💛🙏

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You will find lots of support on this site, also there are some sufferers who live alone and will know exactly how you are feeling. I do hope you are getting lots of support from friends family and medics to help you along this journey.

Much love

Kate xxx

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Im sorry and im sorry your scare. I can only give you some things to learn and do for the future. Please for give me if I up set you. Every day having PSP things are different and you have to come up with new ways to get things done and get through the day. Most important get someone to be your Power of Attorney for medical, let them know your wishes what you want and dont. Some day they will be your voice. Second your never to old to learn sign language or even your own for things around the house like remote, drink just everyday things so it will be easier for you to communicate with others and tech them. Communication seems to be the hardest so I come up with every thing I can for my Aunt to let me know what she wants or needs. Get a care giver through Social Services to help you , PSP is progressive and you are going to need help at sometimes. Teach your family every thing you learn here so it makes life eaiser for them. Walking will get hard so think of safety first put hand rails up to help you all threw house if you have to bathroom, next to your bed down the hallway. i hope with all my heart you have someone who loves you and will be there for you. I have taken care of my Aunt who has PSP going on 15 years now I have been taking care of her for 5 years now and believe me as a person taking care of someone with PSP it gets real frustrating at times but if you prepare it will make some things easier for both of you. Go to a warm water pool as often as you can you will be amazed at how you feel. We made up our own sign lanuage , when she could no longer yell for me I got her a whistle so I could hear her no matter where I was , when she was in the hospital I made her little hold up signs so the staff new what she wanted and a wireless door bell so the staff new they were wanted get a type and talk if you can so you can type and it will speak what you wrote. Communication is the hardest I can not tell you enough and someone to speak for you later on down the road. I hope I havent scared you more if you ever need someone to talk to feel free to email me at krystetorres@yahoo.com there is a lot of things I could suggest to help things easier for you. No one should be alone who has PSP I wish I could bring you all over here with us and we would watch the the snow fall soon. I just got out of bed with my Aunt I like to lay with her and rub her hair back or eat a big bowl of Ice Cream of course she shouldnt have things in her mouth but we dont care she loves it and we sip plenty of water so it dont stick. They turned me in to Elderly Protection for giving her food but I just told them to F--- O--. Sorry I got side tracked. Email me anytime.

Lots of hugs Kryste

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Aurora, my thoughts go out to you, my husband was also just diagnosed with PSP this year. Yesterday I finally was able to post information about creating a computer game in the Tynker app for eye exercises from his functional neurologist. It is posted to LuisRodicioRodicio on Sept 30. Or message me and I will try to send it directly to you. We live in Oregon, I only know of one other person, the brother of a friend living in Washington state with this dx. This website is a great tool to learn so many ways to make life a bit easier. Every day brings sometime new, it is encouraging to hear people finding some joy in each of them.

Hugs,

Kathy

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