It’s been a year since I did what I thought I no longer could do. October 2017, gratefully in the company of my daughter and wife, with effective drugs in my bloodstream, and putting in the work every day, I learned to not put boundaries on myself and hiked 3.5 miles up 2000 feet and 3.5 miles down 2000 feet, along the way scaling to the top of Yosemite’s famous Vernal Falls and my goal, Nevada Falls.
I felt like I was fighting for my life… What kind of life… I didn’t know. I still don’t know. Certainly not the one I was expecting. Not one where I struggled walking up a moderately steep street. Not me. I’m sporty. I play softball… Hard. I streak around the bases. I hike. I backpack! I ride my bike home from work. Me with a debilitating, incurable disease? No way.
But here I am. 50 years old. 2 1/2 years since my diagnosis. Following doctor’s orders: Tai Chi, every day. Walking at least an hour, every day. Hoping, like everyone else, I can slow the progression of the disease long enough, that I can benefit from a medical breakthrough, a cure.
Last year, I started my journey to the top of Nevada Falls, not knowing what I could still do. I made it, of course. Inspired, I wrote about it. It was published on the Fox Foundation website. Dragon slayed. Victory at hand… That’s it, right? Happy ending. Put down the book. Move onto another story.
But..you know..unlike a book or movie, the battle goes on. Parkinson’s, doesn’t give up. It pushes every day. Farther and harder. And…it can not be broke. Not yet. Not by anyone.
But, it’s been a good year. No increase in drugs. I strolled around the doctor’s office, not a twitch or a limp. I played twenty or so softball games…hitting pretty close to what is used to do. Did I feel my PD? Absolutely. But so far, I’m lucky. Mostly my symptoms on my right side and I’m a lefty, through and through. I can play…and play well. If anyone noticed my right arm hanging down while I played shortstop when I was tired, no one said anything.
So, when I found out my cousin’s daughter announced she was getting married one year to the day since my hike up to Nevada Falls, did it occur to me to do it again? To do it every year. An annual, flip my middle finger at Parkinson’s. ‘Fuck you, Parkinson’s Disease. I’m still here.’ Yeah… You better believe it. No one, no disease was going to stop me. My wife and daughter couldn’t go this year. No problem. So off I went.
The Four Mile Trail warm up
The wedding party decided they wanted to hike the 4 mile trail on Thursday. So I scheduled my hike for Friday. I was hoping to hike with the wedding party. But… The four mile trail… a few things about that. Its right there in Yosemite Valley. It is not really 4 miles. It’s 4.6 miles… one way! Which makes it a 9.2 miles trail. And it starts on the valley floor and climbs 3000 feet to Glacier Point, which makes it a “Are you crazy?” Trail, especially since you can drive to Glacier Point. I suggest that trail only be taken by the young and…um…strong.
However, if you get a ride to the top of the trail and walk down with good knees and a hiking pole or two, that works. I have done that before, years ago with my brother-in-law. Tremendous views of Yosemite Falls…except, in October, after 6 months of little rain… It’s just a spot on the cliff across the valley. But, there are views to be had.
That’s what my Dad and I did. We drove to Glacier Point, which had about 40 feet of visibility since a cloud had settled on the cliffs and poles in hand, we started walking down. But after a few minutes we broke through the clouds and were rewarded with spectacular and unusual shots after an evening of October rain.
We met the wedding party along the way. They were going up, crazy kids. After some light chit chat, down down we went. Did I make it down in good shape? Yes. My feet were
a bit raw and my muscles around my knees tired, but I was in good shape. My Dad, , the youngest 79 around…was not so good. 3000 feet down. 4.6 miles. Let’s see you try it at 79.
The next day, my legs were a bit sore, but I walked off to conquer Nevada Falls again. However, this time, all by myself. Was I worried? Nope. I’m an introvert, baby. I can thrive by myself. No one to worry about except me? No problem. I have everything I need.
The walk to the first famous spot on the trail, Vernal Falls bridge… well, it’s a short distance. However, I’ve seen many people on that paved trail in shoes that have no business being there. Because it’s hard! It’s up, up, up. Fooled by the short distance, they are walking in flip flops or high heels. Soon they are sitting on a rock, watching people go by. So bring good shoes and be ready to go up! Besides, you will want to hike beyond the bridge because there is so much tree growth blocking the view from the bridge, you have to walk up, up, up before you get great views of the falls. And… when you do, even with little water, it’s great.
Last year, we were at the top of Vernal Falls at lunchtime. It was an emotional time for me. Full of doubt, I was realizing, my dream was possible, and frankly…my life wasn’t over.
We had stopped at that small, odd lake about 50 yards up from Vernal Falls at lunchtime. But this time it was 10:30., I did not stop for lunch. It was too early. I was too fast! I flipped my finger at Parkinson’s. Take that!
Let me mention though, this is a difficult hike.
Did I have to rest often? Yes. Was I panting and gasping frequently, definitely. The difference is…. this time I knew I could get through that. And I knew I was a going to make it.
Up, up, up I go. Nevada Falls via the mist trail, without the mist. Oh, those steps. They totally kick your butt.
At the top of the Falls again. Was I overwhelmed? Did I cry on the bridge again? Um… Not really. Honestly, I was very proud of myself. Sent texts to my family, which they would get later. I mostly enjoyed being there. And then.. I wanted to go back to the room and have chips and salsa.
It was a long trip back. My knees got tired. I love the John Muir trail side. It’s a longer hike, but very few steps like the ones that dominate the Mist Trail side. I made it back. No problem. So worth the effort, I got to my room and had my reward.
The Wedding Reception
I still keep my diagnosis private. People are on an ‘as need to know’ basis. That includes just about everyone in the world but my immediate family, my doctor, financial adviser, and neurologist. And.. anyone that can read this and know who I am. In addition, my wife and kids could tell special friends and family and my parents, can tell my extended family, which they understandably did.
So, I am at the wedding, suddenly surrounded by people that know of my diagnosis and what it means that I completed these hikes. So cheers to me. Can anyone see any symptoms on me, (standing still, with my right hand in my pocket most of the time?) Nope! Cheers to me again.
So it was great. Hanging out with my parents and extended family. I had the cat by the tail… a mountain lion’s tail!… A tiger by the tail!! The next day, I drove all the way home.
Coming down off the mountain…
Back home, it’s time to get some stuff done. First on the list, renewing my driver’s license. No biggie. No tickets nor accidents in over 20 years. It’s a slam dunk. I go to the DMV website and….
The tiger is waiting for me.
First question:. In the last three years….have you been diagnosed with…blah, blah, blah, no, no, no…and… there it is…Parkinson’s.
And I am deflated…
Frozen, I blink at the screen peeling all the layers off:
1. Of course the DMV needs to know.
2. Of course they will have to test me…
3. Often…. All the time… Every year?
4. And they will pull my license someday. How will I get to work? To the store, anywhere?!
5. As it frequently does… I am overwhelmed by the thought: Parkinson’ is never going to give up. It’s never going away.
The Battle On
And this is how it is for me. I fight and fight. Exercise. Drugs. Jab, jab, jab…keeping it at Bay. But PD is always there. The tiger awaiting, only it’ll keep getting bigger and stronger.
So I try to get back up. Own the feelings and keep moving until… well… I’ll keep moving.
The Community of Battlers. The Fox Trot
October 14th at Coyote Point in San Mateo, California is my second straight year walking the 5k Fox Trot. The Michael J Fox foundation is spectacular. If they have an event, I’m going.
I don’t go to support groups. Again, an introvert going it alone. For now… no problem. So, I don’t see a lot of others with PD. But I can spot someone from time to time. Stiff gait. Arm pointed down and barely swinging and the hand is shaking.
But I have to say. Seeing my peers out there, battling, and their families supporting them. It’s wonderful. My fellow warriors. We are all unique, and No matter where your fight is, Battle On My Brothers and Sisters!
4 thoughts on “Nevada Falls 2018 – Up and Down Again”
Steve, you an inspiration!
You inspire me, every day. Thanks for fighting this thing for all of us.
Thank You… Another introvert, Yeah, I identify! ” ‘Parkie’ the Backseat Driver'” was delegated to live in the backseat for several years. So much like a squeaking wheel that gets oiled, the nagger slid into the shotgun seat- Navigation Rider, right? So you live with ‘Tony the Tiger’, guess a name helps to objectify & give us space? 9/2018 now 17+ years with PD, recently took part in a short study using chemo-therapy within 10 days , WOW factor “I’m back”! Foggy brain gone, all systems go, what seemed to be lost has just been hiding & my sensory switches are ‘On’. Next week my farewell appt & last spinal tap, still reaping benefits of clear sensory input= almost perfect MDS-UPDRS scale plus FATIGUE is gone. Study is about Over but my Hope , Joy & Peace is Renewed. Still Smooth@ 72 lol.
Thank you for the great message. 17 years and the wow factor is back. That…. is very hearting indeed!
I’ll be very interested in how you are doing. Feel free to stay in touch.