Lori DePorter, who lives in Pennsylvania, was diagnosed with young-onset Parkinson’s disease at age 45. She shares how redefining her role with her husband helped them face Parkinson’s progression together.
Transcript
Is your caregiver a caregiver or your care partner? Because there’s a difference. And my husband does not see himself as my caregiver. He sees me as his care partner, which is true. He gets me places where I need to be. He keeps me on time, keeps me focused.
Wish you were here today — when I started going, “Ah!” — when I sort of forgot about the question. You’re going to have a life, it’s just going to be different. It’s not going to be the one that you planned.
It’s not going to be the one you expected. It’s almost a grieving process, but once you get past it, you realize life is still mine, and it still can be good.
As much as Parkinson’s has taken from me, it’s given me a lot. I’ve met a lot of people. I’ve had a lot of opportunities—things I wouldn’t have done otherwise. My relationship with my husband has grown. As much as it took, it gave me things as well.
One thing that my husband and I did—we started a journal back and forth. Something I would like to say to him that I really don’t have the guts to say to his face, I’ll write it in the book.
And then I put it on his bedstand, and then he’ll write back to me. But we never talk about it. It’s a way to unload without unloading. We used to do it more often, but I don’t do that quite as much anymore.
I hope someday my kids find it and be like, “Wow, they really did care about each other and try to help each other.”
