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 An Interview with Patricia Richardson (Page 3 of 3)

An Interview with Patricia Richardson

PR: Yes, that is the thing. Most of the nurses really mean well. You want to have a good relationship with them and treat them with the respect they deserve, but it is like a two-handed thing. On the one hand, you want to treat them with respect and have a good relationship. On the other hand, do not count on anything.
 
GB:  You mean you should trust, but verify, and it is a partnership. You cannot immediately assume everyone is going to be terrible, but you cannot immediately assume that you are going to get the best care the system has to offer.

PR: Your parent cannot tell you.  They have no way to tell you what is really happening.  Sometimes your loved one will try to communicate to you.  Sometimes you will sense that they are hearing something or that they are uncomfortable with someone. If you get that feeling, trust it and try to figure out a way to get your loved one to communicate to you.

Get a white board.  See if they can scratch something out on the white board.  I did that with Dad for a while. What was hilarious was when I finally got that idea and got a white board and magic marker for him to scroll something out, it was really hard to read. What was the first thing he wrote after months of not being able to communicate to us?  You would think it would be I love you or blah, blah, blah.  Guess what he wrote?

GB:  Go ahead.

PR: Vanilla milkshake, vanilla milkshake, vanilla milkshake. That is what we got. Vanilla milkshake. I was like, okay, you got it. I was off to get one.
 
GB: Can you tell me a little bit more about CurePSP?

PR: The Web site is CurePSP.org.  Now we are helping people with CBD (corticobasal degeneration).  We are helping people with MSA (multiple system atrophy) and a couple other rare brain diseases. We are covering more than just PSP. CBD is close to PSP in so many of the symptoms. We are helping people with CBD and also doing research as much as we are in PSP.  We are helping the caregivers with MSA. Then we are helping a couple of the other rare diseases that just would not be able to have an organization of their own. That is why we changed our name to CurePSP: Foundation for PSP, CBD and Related Brain Diseases.

GB: What would be the one piece of information you would really love to leave them with as a family caregiver?

PR: When we were going through this with my dad, we did not have the help of CurePSP. We did not even know about the Web site. I really believe that the most important thing is to get with a group. Go online, find out everything you can about the disease and find other people like you who are going through what you are going through. They are going to be with you. Your loved ones are going to see other people like themselves.  If you go to meetings, not only are you going to be with other caregivers that you can share what you are going through with, but your loved one is going to see other people going through what they are going through.

 

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