Hi, I found this site by chance and love all the information posted. I’m in the States, does anyone know if we have the equivalent over here?
As for coping, the only thing that works for us, is one day at a time.
And a heartfelt bravo to all caregivers of psp patients❤️
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Caro2132
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I’m in Philadelphia PA and use this site for information and support. There are people from all over the world on this site. CurePSP, based in the US, has a chat site that didn’t seem all that active to me. I found this to be a better site.
There's a CBGD (CBD) group on Yahoo. But this group is it. We're all just waiting for Kevin and Liz to move to the US and explain how the details work over here, too.
I live in Los Angeles, CA, and I agree with Jeff166.
Except for the difference in the health care system (we in the USA must have private medical insurance, and therefore pay for everything). It makes no difference to me where this is based. The sharing and information is beyond helpful.
You can visit the internet at all hours of the day or night. Some of us are going to sleep as others are waking up but the human experience of PSP and being a caretaker is universal, no matter where we are located.
If you click on the circle next to name of who has posted, or shared, it will lead you back to all their postings and when they first joined. It is helpful to tell us about YOU. What brought you to this site? What state do you live in? etc.
I am 77 years old, retired, and cared for my son with PSP. His story can be read under PARKINSONS TO PSP. You can go to the oval search bar "Search PSP Association" (above PSP ASSOCIATION and all the photos), and put in any subject, even the title for my posting. It will bring it up.
Writing is cathartic...helpful to the giver as well as the receiver. You will learn this if you post. I am glad you found this site. Read all you can....every time you have time.
I'm also in the states--California. I enjoy this site and have found it to be enormously helpful. Though it's based in the UK, there are people on here from all over the world. I enjoy that too and it means that no matter what time it is where you are there is usually someone on here. I also like SmartPatients which is in the US. It is more general because it covers a wide variety of illnesses. There are a few of us who are dealing with PSP who post on it occasionally. SmartPatients has a wealth of information on caregiving issues. That is where I learned about HealthUnlocked.
Welcome to the community no one wants to be a part of.
Thanks for all the replies. I love the warm feelings. I had already found cure PSP.org, but that site is more clinical. I’m in Northern California, Bay Area. My husband was diagnosed last year authorized psp after first being diagnosed with Parkinson’s in 2014. He can still walk with assistance and talk when prompted, but gets tired very easily. Nap time now... more later😄
I'm on the westcoast of Canada, and I too prefer this site to CurePSP's (although I check in there for info). My husband has CBD but sounds very similar in "stage" and timeline to yours.
There is a forum on CurePSP.org. This forum (PSPA) has members from all over the globe who keep it REAL and have a wealth of experience when it comes to caregiver concerns.
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