The American Parkinson Disease Association is holding its annual Optimism Run & Walk Oct. 30 at South County Regional Park in West Boca.
There are certain phone calls you’ll never forget.Phone calls that change your life.Three years ago, I got such a call from my wife Diane.
But first some context.
Diane’s sister Joan had recently passed after a brave and brutal battle with a rare cancer.
Diane and her siblings went to Santa Cruz to spend those last sad days with a sister who had been larger than life. Joan was one of a kind—tough, independent, kind, spirited, smart.Losing her was like losing a limb, she was fundamental to our family dynamics even from her home across the country.When Diane came back she was understandably sad, notably tired and hurting. We all were.Cancer is a frustrating beast. You rally and then you get hit again.
While the impact is hardest on the patient, the disease hits everyone and it’s path is broad.Still, I sensed something more might have been amiss when Diane returned home. She seemed to be moving a little slower than usual: her gait was off by a hair. But I noticed.Over the ensuing weeks which included holidays, I asked our kids and family to let me know if they thought something was “off” with Diane.Some thought so, others didn’t notice. Like I said, it was subtle.
But I knew something was not quite right, and I asked that she get checked out. She was suffering from pain in a shoulder and weakness on one side, but despite treatment the symptoms persisted.So she went for another opinion. This time, to a neurologist.The diagnosis: Parkinson’s. Just the word takes the air out of you. She could barely get the word out over the phone when she told me.It’s a heavy diagnosis and we were shocked.
Parkinson’s is a progressive disease.
There’s no cure—but there’s hope and Herculean efforts are being made to treat the disease and ultimately find an answer.Until then you do what you can to cope and fight back.You also load up on hope, love, information and support.And here’s where awe takes over.I’m in awe of my wife.
Just when you think you know someone, just when you think you can’t love or respect them more, you find that she possesses whole other reserves of strength, resilience and beauty.It took a few weeks for her “fight” to kick in. A few weeks of emotion and deep depression. I was worried. She didn’t seem up for this challenge. And she said so in worrying terms.But she was processing the news and the impact it would have on our lives.
In an attempt to sort through the noise and anxiety we were experiencing, we reached out to friends who connected us with people they knew who had Parkinson’s. We soaked up as much information as we could find, and came through this process with a strong desire to lean in to our new reality and live with gusto.
The people Diane spoke with were inspirational. Through a friend we connected with a retired airline pilot who was positive and upbeat and living an amazing life. He called Parkinson’s an “inconvenience.” Diane was taken by his confidence and sense of self. We also spoke to a friend’s aunt who was traveling far and wide—living fully and in the moment. She was encouraging and urged Diane to strive for a full and adventurous life.
These calls helped enormously. I saw a change in Diane. She was processing the news rapidly. Her inner strength, which I have seen before, would be there once more.
But while we were grasping the meaning of this diagnosis, we were also beginning to shift as a family. For us, “someday” had come. Instead of deferring to the future, we would begin to do the things most important to us now.
The takeaway from everyone we spoke too about Parkinson’s was you have to keep moving. The best defense against Parkinson’s was exercise: boxing, spin classes, walking, exercise videos, “Rock Steady” classes anything that keeps you moving and works to keep your balance and strength.In typical fashion, Diane hit it hard. She works out every day—sometimes more than once. She’s in amazing shape.
She also found a wonderful doctor at FAU’s Research Park and has surrounded herself with a community that cheers each other on.To say we’re proud would be an understatement. Those who know and love Diane are in awe.She’s inspiring.
As her husband, I have long been fascinated by the different layers of Diane’s personality. Because she’s shy and reserved, only those closest to her see the depth of her character. But to me, that made uncovering her layers all the more special. She was sharing her professional gifts with the community during her very public career, but I got to see the rest and there was so much more to explore and discover.
To see her resolve kick in, to see her try and find the “gifts” in her diagnosis, gave all of us who adore Diane comfort and hope. This was important, because if you allow yourself you can easily fall down a rabbit hole of despair.
When Diane got the news I had just spoken at the funeral of a beloved Delray icon who suffered for years with Parkinson’s. I saw how this disease can level a strong person. I also thought about Michael J. Fox and Muhammad Ali, two people with all the resources in the world but still…
But we also learned that we don’t know our exact path. We are going to try and write our own story. We are going to have faith, do what we can and not allow this or anything else to define us.
I drew on those lessons a few months later when I got Covid and thought that I might die.
I was also told that if I lived, I may need supplemental oxygen for the rest of my life. But my doctor, Paige Morris, said “Jeff, let’s write our own story. Let’s try.”And we did.
I can feel the limits of my scarred lungs but I don’t need oxygen. And while I cannot keep up with Diane, who is in great shape, I do try and hang with her when we put on an exercise video.When we went to Maine this summer (because tomorrow is here) we took long walks every morning and I marveled at her stamina.She is doing well. And I love her even more if that’s even possible because she meets life’s challenges with a work ethic and an attitude that inspires all those who know her.
None of us knows what the future holds. Our lives can be changed with a phone call. Ours surely has been.But we move forward. We live. We are thankful and hopeful.
Always hopeful that we can write our own story….
In two weeks, there’s a walk and 5K run for Parkinson’s in West Boca.The event raises money for Parkinson’s research.Here’s a link. https://apdaparkinson.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=998
At last year’s event, Diane and I walked alongside brave families on the same path. The event was emotional for both of us. We saw a lot of brave people. But we didn’t see any broken people. Looking around the park that morning I felt the spirit of a community. I also saw Diane’s doctor, Henry Moore. There he was, early on a Saturday morning greeting his patients with a big smile and a whole lot of warmth. I knew he was the right man for the job. I knew Diane was in good hands. It was overwhelming and emotional.
Life changing news will do that to you. That’s why it’s life changing news.
But a year later we are strong, happy, healthy, hopeful and grateful for each other, for those who struggle and for those on the front lines seeking answers. Someday we will get there. Until that time, we laugh. We love. We live; a precious day at a time.
“One word frees us of all the weight and pain of life: that word is love.” – Sophocles
