Growing up, I didn’t have heroes. I never really thought about it. Maybe I didn’t like the idea of putting someone on a pedestal above me. But as I age, I have more and more heroes: First Responders, people of the armed forces, firemen, teachers, single parents…. all parents! Really, the list goes on and on. There are too many to count, but they all deserve to be counted. Every one who spends their days doing good in the world.
Their are plenty of heroes in the Parkinson world. Researchers, doctors, the volunteers, spouses, even the dreaded pharmaceutical companies. And since the onset of the disease can be delayed through exercise, every one that wakes up and does battle through walking, tai chi, golf, etc, etc… Every one who chooses to fight every day, is a hero.
By far, the most famous hero in the Parkinson’s world is Michael J Fox. Who knew the actor playing Alex P. Keaton in a sitcom called Family Ties in the 80s would turn out to be so important in my life. Diagnosed with PD as a young man, instead of crawling into a ball of depression, he created the Fox Foundation whose goal every year is to fund research through donations to find a cure for the disease so the foundation is no longer necessary. That’s right, everyone in the foundation wants to be unemployed. I can’t imagine a more noble goal. Operating 100% on donations and 100% of the donations go to research for a cure. Every time I meet with a representative of the foundation, I could not be more impressed.
On October 13th, the Foundation is having a fundraising 5K race affectionately called a Fox Trot. I’ve participated every year and it’s a fun, hopeful, positive event. This time, I have a team of racers call Green Machine. OK, we will be strolling. And what can I say, but I am giving you an opportunity, through donation and/or participating in the race, to join the group of heroes and bring us closer to the day when there is no Parkinson’s Disease. If you are unable to donate you resources, consider other ways by volunteering or even sending us a few thoughts of well wishing. Having you on my side, aides me on my journey and helps me battle… every day.
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.
Approaching Nevada Falls from the left
At the top. Sorry I don’t look happier. LOL
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!
UPDATE: Yesterday (7/3/18) Rasagiline cost me only $2 a pill! Whoo hoo!! (And it was still high enough where the clerk pointed out the high cost. LOL) Fingers crossed the price stays that way. Still, the lesson below is worth reading…
UPDATE 2!!!: Picked up my monthly set of Rasagiline pills and… now they are only $!0 for the whole month. So, what happened? I have no idea. I think I’ll write another blog complaining about the high cost of living in California. Maybe the cost will magically go down! In all seriousness, why was a pill $10 a piece, then two months later, $0.30 each? Thank goodness I decided to take the $10 pills or I may not have known about the price drop. Such volatility in health care costs… Remind me again why people love our system so dearly?
Since being diagnosed with Parkinson’s Disease, I’ve spent a lot of time picking up pills from my pharmacist. I swallow at least 4 pills, three times a day. I suppose I should look at this as a blessing. At least there are pills to take that help. But, there is a price to pay. And, there is one pill… It’s Rasagiline. No, there are no side affects that I’m aware of. And, no offense to the researchers that developed it. No offense to the drug company that produces it. Heck, it could be a miracle for me. But, I it was months before I bought and then it was weeks before I’d swallow it…
It started innocently enough. My current drug levels were masking my symptoms pretty well. The neurologist was pleased as punch to have a patient that was working so hard, practicing Tai Chi every day, walking an hour, every day. “You should give motivational talks.” “Well…” I tell him, “I don’t think I’d do very well with those. I do it all out of fear. I’m only 50 years old and I have Parkinson’s. I’m scared. The fear is a very powerful motivator, but not exactly inspiring.”
(But… thinking about it, maybe using your fear as a motivational tool is worth sharing. I wake up every morning, get scared, get up, and off I go. How’s that strike you? Inspiring? Maybe…)
That reminds me… of the secrets I have now. They are piling up all over the place. At work, they don’t know my diagnosis. They know I don’t ride my bike to work anymore nor play golf, but not why. The neurologist doesn’t know I had a blog posted on the Fox Foundation website. I totally lied to the optometrist about my diagnosis and drug intake. It’s softball season and I’m playing better than I have for a couple of years. I had two weeks in a row of great play. 8 straight hits, including a game winner in the bottom oft the last inning and an inside the park home run. And, my teammates have no idea what a miracle this is. They don’t know how so impossible it would be without my hard work and the drugs.
When I have good days, I barely mention it. When I have bad days, I never mention it. As I type this, I’m having trouble typing with my right hand because I haven’t had my evening pills like I should. But… I won’t tell you that. Everyone is on a ‘need to know basis’. Is this healthy? I doubt it. But…. really, do I have to run around telling everyone everything all the time? Well… I never claimed to be perfect.
OK….back to the drug: The Dr announces he’s got a new drug for me. One that slows the onset of Parkinson’s. “How does that sound?” I had not realized there was such a drug. Instead of screaming, “WHY AM I NOT ON THIS DRUG??? Why did we not start with this???”, I say, “Sounds good to me.” So he types up the prescription and sends it to the pharmacist like the drug dealer that he is. By now, I know to take all these drugs with a grain of salt. Every person is different. There is no telling if it’ll work. But, it’s worth trying. And, I’m feeling a little more hopeful than I’ve been for a long time.
Every time I pick up pills, I fear the price. Will this be the time my insurance decides to stop covering this pill? But, this is a new pill. What will this one cost? The clerk comes back with my drug. She focuses on the price and nervously points out the price to me. I look at the bag. 300. I look at it again. $3.00? No… $300. I look at the bag… there is no way there is 300 pills in there. Not 200. Not 100. 30. THIRTY!?! My heart sinks… I pay for it and blankly walk to my car.
Living with Parkinson’s, I’m always an inch away from a panic attack. I get in my car, turn the radio up and I’m reeling. My eyes water. My face frowns… My ring finger in between my two knuckles starts to weirdly hurt, like it always does when I’m upset. I hate it. That stupid finger. What the hell is that? Makes me more upset.
In my panic, I fail the math and visions of taking a $30 pill every day for that rest of my life fills me with despair. $30 dollars a day? I can’t do it. I can’t doom my family by taking $30 pills every day for the rest of my life. They won’t have any money for anything else.
Eventually, I calm down enough to remember math again. $10 a day. $3650 a year for a drug that might work. MIGHT. And really, there is no way to know if it is working since the disease is different for everyone. Ten years from now, did it slow the progression of my symptoms? No one can say.
I stare at the bag two days later… unopened. I hate it. At that price, the insurance company must not cover that drug at all. I check around and that’s the price. My contact at Fox tells me the drugs that they aren’t sure work are super expensive. So, I’m trapped. $10 every day or risk not slowing the progression of the symptoms as much as possible. Thoughts of not taking any pills and wasting away invade. How’s that for inspirational?
Days pass…. I stare at the unopened bag every time I go to bed.
Of course I am internalizing all this because that’s just what I do. I act normal at home, at work, but I’m stressed and full of worry. Then, I tell my confidant at last. We are walking in the early morning, and I tell my wife. $3650 every year for a might work pill. Can I do that? That’s every year for the rest of my life. EVERY YEAR.
And she responds: “You are so worth $10 a day. Take the pills.” She knows I’m still doubtful. This is not the only pill. And the cost for doctors…etc etc. So, she stops me. Looks me in the eye… “You are worth it,” nodding reassuringly. “You are worth it… take the pills.”
I stood there like the idiot that I am. And, it dawns on me at last. It’s not all about me. It is never all about me. But I forget this all the time. I don’t have to be controlling everyone by withholding parts of my life. And, all the exercise, pills, Tai Chi, etc are at least as much about my family as they are about me. Because… well, we are a family. We are in it together.
So, the $10 pill…is swallowed every day, just like all my other weapons against the progression of this disease. Do, I like it? No. Does it help? Maybe. But, every time it goes down my throat, I’m telling my family that I love them and I’m doing everything I can. And, every time I go to the pharmacy and they point out the price, I’m reminded that my family, my wife, loves me and believes that I’m worth it.
I wrote this back in 1997. My first child would come soon after and I was ready to give my kids all the wisdom I could muster. I suppose some kids listen to their parents, but not many. They are who they are.
None the less… more to say about fear of the unknown…
*** 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.