New to this

[PapHelper42]

My husband has just been diagnosed. Not sure what we are doing or where to go from here.

[OllieFisher1]

Hi, Am sure someone from the US will help you, but its a progressive disease hence the word, so needs are constantly evolving especially if he lives at home. A lot will depend on his current abilities. Lots of equipment for different sorts of mobility issues. How much support you have is also something to consider. Do you both live alone? If he fell, would you be capable of supporting his body weight etc. If you have nothing in the house, I would start with some rails in the toilet, shower and passage. The more you share on this site, the more help you will get. Good luck

[Troubleandstrife]

I’m sorry. I hope you have some support. If not I urge you to continue seeking support here and from family and your community. You cannot do this alone. PSP is one day at a time, and the uncertainty you feel, the feeling that the future is unknown, is common. And docs don’t really know how to help. They can only wait and watch as symptoms develop. Take care of yourself and try to be present every day. It’s all we can do.

[timbowPSP]

Hiya PH42, I believe its waste of energy to "fight" this disease. I am 82 M, PSP diag 5 yrs ago, and now putting my energy into living as fully as I am able, including my 7 page report on what I am (still) discovering about the options, etc. Happy to share, so need ur email address. All the best! TimbowPSP

[Black1dog in reply to timbowPSP]

I am interested in your 7 page report about options.

[timbowPSP in reply to Black1dog]

If you'd like a copy, pls send ur email address, as too large to fit in this format! ... Cheers! TW