Pass to Pass On The Pacific Crest Trail
Editorial note: This article was written prior to the implementation of the Shelter-in-Place policies. Pass to Pass cares deeply about the health and safety of program participants, trail communities, and other stakeholders, and the referenced "2020 hike" will proceed only if it is deemed safe and responsible to do so.
“Doctor, let me get this straight. You’re telling me, a seventy-year-old guy with gait and balance issues combined with tremors in both arms and hands, to go on a sixty-mile nine-day backpack adventure on the Pacific Crest Trail? And you think it’s going to be fun?”
That was my introduction to Pass to Pass on the Pacific Crest Trail. My neurologist was convinced it would be to my benefit and urged me to accept the challenge. It includes all aspects of positive activity for people with Parkinson’s disease: cognitive, physical, and social. I was introduced to Beast at a Parkinson’s conference, and his passion and excitement were contagious. Looking at maps, preparing checklists, and trying to get in shape all helped me prepare to go face-to-face with Pass to Pass.
The genesis of PasstoPass.org is straightforward. The Beast has been a hiker and outdoor enthusiast his entire life. He and his wonderful wife of 47 years spent their honeymoon hiking about 700 miles on the Pacific Crest Trail (PCT). Through kids, jobs, houses, and travel, the Beast made hiking, camping, and the outdoors a priority. He has been a strong political advocate for the PCT and makes an annual trek to Washington DC to meet with politicians of both parties. Somewhere along the way, the Beast was diagnosed with Parkinson’s disease—a chronic (it isn’t going away) and progressive (it is going to get worse) neurological condition. The stereotype of an elderly person bent over, shuffling along with the help of a cane or walker, with occasional flailing arms is not accurate. Different persons with Parkinson’s exhibit different motor symptoms that are generally accompanied by non-motor symptoms, including depression, loss of smell, memory, and other cognitive issues, pain, difficulty swallowing, constipation, or hallucinations.
To demonstrate the invincibility of the human spirit, the need for unfiltered nature, and the determination to prove the Parkinson’s community can achieve more than many believe possible, Pass to Pass was born. Hikers with Parkinson’s, support hikers and a few pack animals were rounded up and into the wilderness we went. Of course, dozens of hours of deliberative planning and the resolution of numerous logistical issues took place behind the scenes to make the dream a reality.
Pass to Pass has four seasons under its belt and has been successful in helping Parkies to achieve dreams and overcome challenges through their trail experiences. We have accomplished a great deal over the past four summers—and committed some blunders. As in life, we tried to learn from our mistakes.
What follows are the actual words from various hikers—those with PD, support hikers and even one of the pack animals (Farimer). To protect both the innocent and the guilty, trail names will be used. Information about Parkinson’s will be sprinkled throughout.
Professor: As the founder, you get the first words. Why did you create Pass to Pass?
Beast: After being diagnosed with Parkinson’s in 2009, my tremors got considerably worse until I opted for Deep Brain Surgery in January 2015. (DBS is deep brain stimulation, a surgical procedure to implant electrodes in the brain to reduce tremors. Think of it as a pacemaker for the brain.) DBS was life-changing for me -- it was like night and day. My tremors were reduced by approximately 90%, and my medications were reduced by more than 50%. I felt great compared to where I had been, so I started thinking about getting back into the wilderness. I selected a trip into the Enchantments over Asgard Pass and I was joined by my wife, Nadean, my good friend Scott, and my nephew, Marcus. The test hike was going to be before the permit season started, it all went pretty well but I soon realized carrying a full pack was not going to work in the long run. The pack straps that I had modified were putting too much pressure on my neuro-stimulators implanted in my chest below my collar bones during the DBS procedure. The last 2 days of the hike, I was totally spent and my legs felt like rubber. I knew then that if I was going to do a multi-day backpacking trip that I would need somebody to carry the bulk of my gear. So, the next spring, I met up with a friend who also has PD. We came up with a crude plan to use horses to carry the gear, so in 2016 we planned the first hike from Stevens Pass to Snoqualmie Pass.
Professor: Why did you choose to participate in Pass to Pass?
Hulk: I like to hike, and I have Parkinson’s Disease. Pass to Pass is a great way to combine two important parts of my life. I lead a Scout group and we hike all year. Over a week on the PCT was a new adventure.
Beast: As John Muir said, “I go into the forest to lose my mind and find my soul.” I really get an adrenaline rush when I am out in the mountains.
Doc Holliday: I work with Parkinson’s patients. The Professor has been encouraging me to participate, I thought it would be fun and interesting. I love hiking but had never done any backpacking. My son has been after me to try it.
Superman: As a person with Parkinson’s (PWP), I like to challenge myself. I’ve never hiked fifty-three miles before, and I wasn’t sure I could. I didn’t want to look back years from now and say, “I should have tried.”
SkyClad: My wife saw the Beast’s video about his DBS and information about the inaugural trip in 2016. We were heading to Seattle the same weekend, so we stopped at the trailhead to wish them a good trip. That winter, I was wondering what I could do “to give back” and my wife mentioned PasstoPass. I’ve been backpacking or climbing most of my life, so it seemed like a good fit. I called the Beast to volunteer as a support hiker and the rest is history… and a few hundred more miles on the PCT.
Farimer: I heard about Pass to Pass when my owner loaded us into the trailer and drove us to the trailhead. I’m a llama, and we are great pack animals—better than horses or donkeys. We each carry sixty pounds of gear, so the Parkinson’s hikers get a break and we also carry the communal gear. With custom made panniers, we look good walking down the trail. Almost everyone we meet wants to pet us and get a selfie with us.
BearBait: My grandpa has Parkinson’s. When he told me about Pass to Pass, it felt like a really fun way to spread the word. The people you meet on the trail are truly amazing.
Altitude: I have a passion for backpacking and am committed to the benefits of exercise on the aging and disease process. My family has a history of Parkinson’s disease, so when I learned about Pass to Pass, I was excited to become involved.
Parkinson’s Fact: The single biggest risk factor for PD is age. The older you get, the more likely you will be diagnosed with Parkinson’s. PD involves the death of neurons in the brain in a specific part that produces dopamine, one of the brain’s neurotransmitters.
Professor: What did you get out of the experience?
SkyClad: Not to get too squishy, but the people I met on the first Pass to Pass hike were a huge inspiration to me. I’ve stayed in touch with most of them and consider them friends and comrades of a shared adventure. I have continued supporting and leading trips. Every hike, I make new friends. I cannot begin to explain the huge amount of respect I have for the Parkies that undertake this adventure.
Doc Holliday: It was rejuvenating to be completely unplugged for a few days, inspiring to see resilience in action and I also learned the basics of backpacking. I had a buzz going for a few days afterward—much longer than the usual post-vacation glow.
Altitude: [Altitude will be on the 2020 hike.] I have witnessed the beneficial effects of physical exercise on the symptoms of someone with PD and another with Lupus. I have also seen the effects of lack of physical exercise on someone with PD. It was these observations that inspired me to seek a more active lifestyle. In doing so, my passion for backpacking and just being active in the outdoors has been contagious to those around me. I have been leading regular day hikes and backpacking trips amongst my family and friends for several years now. I find so much inspiration in watching others push through challenges to continue to live a full and adventurous life. I want to live with that same strength, determination and vitality no matter what comes my way. I am looking forward to sharing the love of the mountains, the love of adventure and the love of a challenge with others on the PasstoPass hikes this summer.
Beast: I exercise every day and walk a lot to minimize my symptoms. I found a community of Parkies who enjoy the outdoors. We are willing to share our experiences. It is not just the hike experience, it is exercising to get ready, planning the hike and talking together about the hikes.
Superman: On the 2018 hike, my adult son (BigDog) was able to go, and it was a real bonding experience for the two of us. We slept in a tent that was too small, however, we went to bed every night talking and I learned a great deal I would not have learned if I had not gone on that hike. BigDog had to skip 2019, but we’re already signed up for 2020.
BearBait: I got more experience camping and hiking that will be of service when I go on multi-day solo hikes. Also, I got to do it with my grandfather [Professor] which is truly amazing because we will have those amazing memories from on the trail.
Hulk: Backpacking is about the people I’m with. I enjoy meeting other Parkies, learning about their journey with PD and chilling in the mountains with my buds.
Farimer: Humans are hard to understand. They do strange things. I saw Professor run around doing some kind of dance at one of our campsites. He ran around yelling and slapping himself on the shoulder. He repeated his dance every half hour for two hours [Apparently my new tent had some kind of hornet attractant on it.] Most importantly, there were all kinds of new green plants to eat and sometimes we go on strike just to get a few treats.
Professor: What would you say to somebody considering Pass to Pass? What would you say to convince them to go?
BearBait: I would tell them to definitely go because being away from technology and forgetting about the outside world and just focusing on the beauty of nature is indescribable—and you’ll never get that from pictures.
Superman: Go for it! This is a group of really good people, some with a great deal of experience, some not as much. However, everyone is willing to help each other, and I guarantee you will make life-long friends.
Hulk: I promise you’ll enjoy it, meet some good folks, have a sense of accomplishment—and forget you have PD for a while.
SkyClad: Go. Do it. This is a chance to see some absolutely stunning wilderness, meet some great people. All of this supported by pack llamas. There aren’t many affordable opportunities like this.
Farimer: You do know llamas can’t talk, don’t you? Some guy keeps putting words in my mouth. But if I could talk, I’d say that I’d be glad to carry some of your stuff and how much I respect you for being willing to take a chance on an opportunity like this and don’t forget to bring the TREATS!
Doc Holliday: Backpacking in the Pacific Northwest is spectacular and would be reason enough to go all by itself; but the comradery and the opportunity to witness people rising to a challenge was really special.
Beast: We selected the Pacific Crest Trail for higher elevations that give great views and the trails are well maintained. We let the llamas do the work, so Parkies only need to carry a small day pack. We average approximately five to six miles a day. There is no fee for the hike. The llamas and miscellaneous expenses are paid by private donations to the non-profit passtopass.org
Parkinson’s Fact: Symptoms may occur as much as ten years before diagnosis. Loss of smell is one of the most common. Unfortunately it is not a reliable diagnostic tool because there are so many potential causes including aging, allergies or sinus infections. Scientists and researchers continue to look for a reliable biomarker.
Professor: What was the best part/experience of the hike?
Doc Holliday: The people [teenagers to septuagenarian; from WA, CA, ID, CO, OR and WI] were the best part.
SkyClad: I mostly answered this in my response to the second question. I would add the opportunity to see some of the best parts of the Pacific Crest Trail.
Hulk: Meeting some incredible, inspiring people.
BearBait: The best part was doing the hike with my grandpa. We joked around and told stories. I feel like it has brought us closer together.
Beast: Getting to know each other and our limitations and then meeting our goals one day at a time. On each trip the llamas pack in a watermelon. Have you ever had watermelon in the backcountry?
Superman: The best parts were bonding with my son, BigDog, making lifelong friends and proving to myself that I could do it.
Farimer: The best part was having the weight in the pannier get less and less as supplies were used up. Think about it, the 19-year-old (BearBait) carried over forty pounds while most others carried between fifteen and thirty. Each llama carried about sixty pounds at the trailhead. I mean, like who needs a cantaloupe and a watermelon on a backpacking trip? Water is heavy. So is wine!
Parkinson’s Fact: Almost a million people in the US have Parkinson’s disease, with about sixty thousand new cases a year. While most people are diagnosed in their 60’s, a significant number are referred to as young-onset and may be in their 30’s or 40’s or even younger.
Professor: What was the worst part or the most disappointing?
Hulk: When you’re on the trail, there is no “worst part.” Parkies lose their sense of smell, so nobody’s stink was an issue.
Superman: The smoke and fires on the 2018 hike.
Farimer: I don’t like smoke. I’m not a Camel. Get it? I just made a joke. We llamas have feet made for climbing around in mountains. I noticed some of the hikers didn’t prepare for the difference between walking on a paved road versus a mountain trail. I now tell all the hikers to prepare, prepare, prepare. Blisters and cramps are not fun.
BearBait: On my first Pass to Pass hike in 2017 the smoke from the fires obscured some of the views—other than that, there was nothing I didn’t enjoy.
Beast: The worst part was back trouble prior to the first hike in 2016 which lead to surgery for me and the group went on without me. In 2017, I had to have an emergency appendectomy and after missing the hike in 2016, I was determined to not be disappointed again. I was on the trail 9 days later. [That should make clear how he earned his trail name!]
Doc Holliday: I was accused of cheating at cards. [He didn’t cheat; he just didn’t explain all the rules.]
SkyClad: Having a couple of hikers drop out after months of planning. It was the right thing for them to do because of physical limitations, but I sincerely missed having them on the trip. I’m hoping that they’ll join an easier hike this year. [PasstoPass has grown from one hike each year to three or four options of varying degrees of difficulty at present.]
Parkinson’s Fact: There is no cure. Symptoms are treated with medication and surgery. The gold standard drug (levodopa) has been around for over sixty years. New drugs help with some symptoms while frequently causing new ones. For example, Professor takes a drug to moderate tremor but then deals with memory and recall issues.
Professor: Anything else you want to add?
Superman: Over the past two years, I’ve gotten to know the Beast and I can’t tell you how much I admire him. He is truly a great man.
SkyClad: Being involved with Pass to Pass over the last four years has been one of the most rewarding experiences of my life. Seeing the Parkies I’ve hiked with out there living large, overcoming obstacles, and not letting PD beat them is massively inspiring. That is something I cannot emphasize enough.
Doc Holliday: I feel very lucky to have been included in this great experience. Unforgettable.
Hulk: Yes, I’d like to add another hike sometime during the year. One Pass to Pass hike on the PCT is not enough.
Beast: We have learned a lot over the past five years; we do less mileage per day and less elevation gain/loss per day than the first two summers. The switch to llamas was a wonderful plan. They are much more flexible than horses, they go slower and are so lovable; we can manage them ourselves.
Professor: Altitude, you haven’t yet been on a Pass to Pass hike, so you get a different question and the last word. Why should people without PD care about Pass to Pass?
Altitude: Parkinson’s disease is the second leading degenerative neurological disorder after Alzheimer’s. This leads to the assumption that many people will likely know of a family member or friend that is diagnosed with PD or suffering from Alzheimer’s or some form of dementia. Scientific research is showing that consistent physical exercise slows down the progression of the symptoms of PD and improves cognition. Some who do not have Parkinson’s disease but may know someone who does would be interested in supporting PasstoPass participants as well as its message to tackle the aging and disease process through physical and adventurous challenges. PasstoPass.org is a non-profit 501 (C) 3 organization run entirely by volunteers with private donations supporting those with Parkinson’s disease, but it has a message for all of us: keep physically active. It is healthy for our body and our brain. Never stop living life large even when life throws us a curveball.
