The ‘Ten Dollar Pill’ Lesson

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.

There… that’s an inspirational thought.

 

No matter what mountain stands in your way….

Battle on.  Every day.

 

The Nevada Falls Hike

***  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.***

cropped-nevadafalls2.jpg

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.

me
My ‘bed’ in our 1967 Volkswagon Camper was a hammock slung over the driver and passenger seats.  Check out those classic curtains.

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.

vernal
Vernal Falls the day of the hike.  Thanks to a wet winter, for a day in October, that’s a lot of water

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,

Full Falls
Nevada Falls – Thunders like a freight train in the early summer.  For an October day, the amount of water was excellent.

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.

The Mist Trail
The trail begins at the back of Yosemite Valley.  My ankle was wobbly with nerves, but I just didn’t listen to it.

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.

liberty cap
My lunch view, Liberty Cap.  Halfway.    We are probably 100 yards upstream from Vernal Falls.  The trout swimming in this odd lake best stay put.

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.

cropped-steve_nevada
On the bridge over Nevada Falls.  Pulled myself together for a squinty picture.  We all have our mountains to climb.  On this day, victory is mine.

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.

Steve Green

valley
One the way back:  The valley below Nevada Falls, which is on the right, with Liberty Cap in the middle. The backside of Half Dome is almost completely cut off on the left.