When I first heard the words “I think you have Parkinson’s” from a Neurologist back in 2021 I thought my life was over.  My husband and I sat in the parking lot outside the clinic and cried.  I didn’t stop there.  I cried for days, alone mostly, I didn’t want my kids to see and ask me why Mommy was crying.  Eventually I stopped crying and got mad.  Who was this idiot doctor to suggest such a thing? I didn’t have Parkinson’s, people like me didn’t get Parkinson’s, that was an old man’s disease.  So off I went to prove her wrong.  Turns out she was right; I sent her a nice apology note and a copy of “the Parkinson’s Plan” book for Christmas.

Once the initial shock wore off, I decided I wanted to tell my story, of what had transpired. I chose to share my story on TikTok, which is weird, but worked out, better than I could have ever imagined.  Telling our stories is great therapy, therapy is also great though, and important.  I got a therapist in 2024 after some monumental mistakes I made those first two years of my diagnosis and the death of both my parents.  That year I was asked to do my first talk about Parkinson’s and hope.  I wrote a glossy speech with a bunch of slides and inspirational quotes, then threw it all away and just spoke from experience.  You see grief is a great teacher, as is Parkinson’s.  When you lose the things you derived your hope from, your loved ones, your youth, your health, your career, you think it will dry up and blow away, like a tumbleweed.  Maybe it does, for some.  If you think too much about the things you lost or regret, the mistakes and missteps, it’s like wearing concrete shoes.  You will drown.  I thought I was drowning, then I took off my concrete shoes and floated back to the surface, into the sun.  My mom used to say, “you have to keep on the sunny side Esther” and that’s what I do.  It’s not easy, few things are.  Some days, like today, when I feel loved and appreciated and useful, it feels effortless.  Other days, when nothing goes right, it feels impossible.  I like the quote from Rumi “this too shall pass”.  Because it’s true.  Nothing stays the same, in Parkinson’s especially. Symptoms come and go, you have good days and bad, unpredictably is the only real constant. Sometimes I think it will never end, but it does.

Hope in some ways is like medicine.  It’s not always at a consistent level in my system, and it doesn’t always feel the same, but I take it every day because it helps.  The question I think most people wonder is how you maintain hope with a progressive disease.  It is, like the medication, different for us all.  The most important thing I did in 2024 besides get a therapist and work through the trauma of my diagnosis, was stop looking for hope outside myself.  See I made it this far, I’m 51 and I’ve come too far to lose hope now.  I had it in me the entire time.  Sure, some days it felt dim, that little light of mine, but if I feed it good things it grows.  For me the good things are people, people that I love, people that love me back, like my parents.  My parents are gone now, but this was their final lesson, that love is very powerful, it doesn’t disappear when the person is gone.  Love is this amazing infinite source of hope, and the more you give it away the more you get back.  It works every time, and it’s the best medicine.