WOW, I WISH I HAD THOUGHT OF THAT!

WOW, I WISH I HAD THOUGHT OF THAT!

By Sandy Rodley, Former Caregiver to Ralph

Recently I was reminded that even though I thought we had taken care of everything and had planned it all out but forgot to have the one conversation we should have had. It wasn’t a topic often spoken about when making final arrangements nor is it a topic easily had ahead of time, but because of my husband’s recent passing, I realized it was something I forgot to address. And then it was too late.

The topic is the Gift of Hope-Brain Donation. Also known as an autopsy. The benefits are enormous and can potentially provide valuable information to you and your family but also the information gathered may help researchers make new discoveries about Parkinson’s and other diseases that can save lives in the future. It can also provide comfort by either providing or confirming a diagnosis. Since Parkinson’s has so many branches, I think finding out for sure would be helpful but also the possibility that your gift could help someone else is what we call a “mitzvah.” 

There are actually a few different ways you can handle this and all require advance planning. You can join a clinical trial as sometimes it is included as part of the participation. You can also reach out to universities such as the UCLA Decedent Affairs Office or the Brain Donor Project but have a conversation with your neurologist as they can sometimes offer some insight especially on clinical trials and brain banks that specialize in researching neurological disorders. 

So, I am the inner voice that sits on your shoulder and is here to remind you, to have that conversation so you don’t say “Wow, I wish I had thought of that”…. before it is too late. It truly is a wonderful gift. 

There is a great article in the PRO blog archive here: ParkinsonsResource.org/news/articles/the-gift-of-hope-donor-program/. And Jo Rosen recorded a YouTube video you can see here:  ParkinsonsResource.org/gift-of-hope-donor-program.