*** Note: A truncated version of this blog will be published in the Fox Foundation’s monthly publication. I love the Fox Foundation, but they only had room for ~400 words and I had to edit a lot of the emotions I wanted to share out of that blog. So below is the full story. I realize I am not a great writer, but I tried to counter that by being as honest as I could. I am completely grateful to the Foundation for supporting me and adding a link to this page.***
August 25th, 2016, I entered into the PD community at 48 years old. Sitting in the neurologist’s office with an arm that didn’t swing when I walked and a foot that scraped along the ground, a lot of things entered my mind when the doctor closed the door, sat down, and delivered the diagnosis. Denial was not one of them.
I asked what would be my life in a year, 5 years, 10 years and, gulp, 20 years. Each time he responded that we’d be managing my symptoms with drugs. I remember thinking, How many drugs does this guy have? And, I’d seen Muhammad Ali. The pessimist in me thought… these drugs can’t be very good. But, as I’ve come to learn, every person with PD is different and you don’t know until you know.
The doctor assured me we’d find the right level and the right drugs to manage the symptoms. I took the lowest dose of the first drug expecting something. However, in the months that followed, as I grappled with this new reality, my arm and leg stubbornly remained indifferent to the drugs. I arrived at every appointment, defeated. In the many moments of despair, I had to take stock of exactly what I thought I wouldn’t be able to do anymore.
When I was a kid, ‘vacation’ meant the family piling into our ’67 Volkswagen bus camper and driving into the Sierra Nevadas for forced march hikes up and down the granite peaks of Yosemite. I’ve hiked to the top of Half Dome three times. A grueling 7-8 hour uphill climb, punctuated by a harrowing trip up the side of Half Dome, where you hang onto the cables or you are going over the side. And, that’s just half the hike. I was not interested in going to the top of Half Dome again.
There are two spectacular falls as you walk from the valley floor towards Half Dome. Vernal Falls is first, wide and powerful. But, Nevada Falls is my favorite. When you are on the way to Half Dome, you don’t have much time take in the tremendous views from the Nevada Falls trail. Hiking to Nevada Falls is not easy. If you start any hike at the Valley floor, to get up out of the U shaped, glacier-carved valley, you have to go up, 2000 feet up. If you have never been to the valley, it’s impossibly up. That puts a label on the hike: Strenuous. When the guide books say Strenuous, they aren’t messing around. It’s hard! I had been coveting this hike for a few years. The hike up to Nevada Falls is a completely worthy hike to arrange your weekend around. The views of the two falls, the backside of Half Dome, and Liberty Cap are fantastic. However, arranging the trip with two teenagers who consider “hike” to be a four letter word was difficult. I had been remaining patient,
usually a strength of mine. I’m good at following Doctor’s orders. The first day the neurologist said to start doing Tai Chi and walk every day. Exercise will slow the progression of the disease. At 48 years old, if he said to stand on my head for 20 hours a day, I’d have done it. So, every day, Tai Chi. Every day, at least an hour walk.
But still… after months of slowly increasing the doses, I felt the same. Worse, when I walked uphill, my right leg instantly got fatigued. One day, standing in the road, only 1/10 the way up a local hill, feeling my right ankle already tired, I came to the realization that the Nevada Falls hike, and maybe all hikes, were beyond me now. I quietly sobbed. Another part of my identity, robbed from me. How is it that my body has failed me so?
At some point, the drugs got to a level where I began to feel benefits. Despite my frequent moments of doubt and despair, I continued to do my part by performing my Tai Chi every day and my hour long hike/walk every day. My new mantra: Every day is a battle that I must win. Slowly, it occurred to me that the Nevada Falls hike seemed possible.
Finally, I admitted my dream to my wife. We made plans and nervously started the hike on a perfect day in early October 2017, not sure what to expect. The trail almost immediately goes into a steep incline. My ankle objected. I focused on one step at a time. Step… step.. step… It’s a long, long haul. So many steps carved into the granite. Not uniform little steps, but large, uneven will-breaking steps. Hundreds… thousands? So many chances to stop and go home. I remain focused and don’t tell anyone about my doubts. There is only the next step, and the next. Up, up, up.
1.2 miles in, and we’re approaching half way. We’ve climbed 1000 ft to the top of Vernal Falls, wide and powerful. Sitting next to a small lake a few steps upstream from Vernal Falls, we eat lunch and I take pictures of one of the mountains I was looking for… Liberty Cap. Huge! Free standing. I was excited. I had made it half way. The doubt was gone. I was getting to the top.
The hike from the top of Vernal Falls to the top of Nevada falls is another 1000 feet up. More steps cut into the granite than I can count. I lead the way. Occasionally, my ankle barked at me. But, I barked back, “Tough! Do it!” Eventually, it would stop barking and I marched on. A couple of hours later… At the top of Nevada Falls, there is a bridge just a few dozen feet from where the water tumbles over. I stood on the bridge, on top of the world, tears in my eyes, looking over the valley, in victory. My wife came over. I pulled her in and quietly sobbed in her shoulder. No one but my wife and daughter knew how much it meant to be standing there.
The view back down is spectacular. Nevada Falls, Liberty Cap, and the back of Half Dome. I’ve been all over that park and no view is framed quite so spectacularly. Two thousand feet up. Two thousand feet down. 5.4 miles of Strenuous hiking. A tremendous victory for me.
I don’t know what tomorrow will be like. I don’t know if I’ll hike the falls this October when we visit again. I am still getting used to my diagnosis and learning what I can do, and what I can do,with an extra measure of grit. I know I’ll be doing my Tai Chi, walking every day, and taking my pills.
I feel quite certain that the Micheal J Fox Foundation played a part in making that day possible. I just wanted to say thank you. It’s wonderful having the Foundation on my side.
Battling on. Keep fighting the good fight. Climb your mountain, in whatever form it takes.