...To Redefine What it Means to Have a Degenerative Disease
Jan 31, 2017 | By: Jennae Geren
It’s one of those Colorado blizzard days when I look out the window to see the snow and the wind join forces in a freezing-temperature tango and think, “It’s a good day for the Senior Center.”
Minutes later, I push open its door as a torrent of powdery snow bursts in behind me.
Not yet 10 a.m. and already a line is forming from the front desk to the entry doors. Squished among the crowd’s excited chatter I can’t help feeling that I’ve arrived at its version of Happy Hour. Fortunately, I have somewhere to be. I pull out my notepad that reads today’s date and, “Parkinson’s Support Group: Prairie Sage Room, 10 a.m.”
“Down the hall, the second door on the left,” the front desk attendant instructs me.
I nod in thanks and dash down the hall.
Prairie Sage Room, the sign above the door reads. I stop at the doorway to reexamine the sign and then look into the room. “This can’t be right,” I think. I expected a small room with a huddled group of five or six people wearing sticker name tags and shifting uncomfortably in their seats until a guy with a clipboard clears his throat before his opening announcement. No, this vast banquet room is packed predominantly with seniors who dared to fight the snow today, casually seated around 10 circular tables with a snack bar and pots of hot coffee off to the side.
I seat myself at a back table and pick up on the chatter of friendly conversations. The man across from me introduces himself to the woman next to him and steers the conversation in the direction of the origins of his Parkinson’s disease. “Genetic,” he says. Biting into a croissant, he continues, “My sister had a severe form of Parkinson’s disease,” flicking crumbs from his sleeve.
Leaning in and cocking her head in empathy she asks, “Oh yeah, how’s she doing?”
“She’s dead,” the man says.
(Parkinson’s disease isn’t usually fatal by itself—falls and pneumonia account for most final exits).
At the table behind me, a woman exuding excitement passes out flyers. “Two weeks ago, I couldn’t draw a stick figure,” she says.
Later I find out the woman is Billie Pawlikowski, one of the group’s Leadership Team members. A profoundly conscious and intelligent woman, and a former RN and teacher, her life was transformed taking on a whole new meaning after being diagnosed with Parkinson’s disease.
Pawlikowski pans her phone around to the viewers at the table who are examining what appears to be photos of her artwork. I hear gasps of awe and approval.
“If Parkinson’s disease can do bad things to your brain, it can also do good things to your brain,” Pawlikowski says, throwing her head back in laughter before proceeding to the next table.
Suddenly a man walks in the front center of the room, microphone in hand and speaks about hope and attitude. The captivated audience’s conversations simmer to near silence. The man’s right arm has a slight consistent tremor which he pays no mind to, and his appearance mirrors much of his attentive audience: slacks, a button-up shirt, early to mid-70s, but his demeanor is refreshingly warm and humorous as he recounts the haunting words that link everyone in the room.
“When you get diagnosed with Parkinson’s disease, the doctor lowers their tone of voice, leans forward and says, ‘Y-o-u h-a-v-e P-a-r-k-i-n-s-o-n’s d-i-s-e-a-s-e,” the speaker mimics as he leans forward, the last line lingering in a baritone chord of gravity with a hint of haughtiness.
Light-hearted chuckles ripple across the audience.
“Parkinson’s disease is progressive and degenerative. You might be able to slow the course of the disease. But it’s all downhill.”
His eyes open wide like a parent’s eyes do when speaking slowly to their toddler about why they are being disciplined. “Do you understand?” the parent usually asks nose to nose with their toddler who wiggles, peeking over the parent’s shoulder, looking for freedom in the distance.
The speaker continues his monotone mockery.
“I might be able to give you medicine but it might not work after a while.”
The speaker steps out of character.
“From then on, you’re hypnotized. These words reach the deepest recesses of your brain and it becomes a prophecy you live out and you believe you’re dealing with the concept of something that’s god-awful.
“This group gives us things that can be done. The operative word is do. If you have Parkinson’s disease, the worst thing that you can do is sit down and watch TV. Especially the 10 o’clock news.”
The crowd chuckles in response.
The speaker is Christian Hageseth, the Director of the Parkinson’s Disease Support Group, a retired psychiatrist, author, and an outspoken activist on sweating out Parkinson’s disease through exercise.
“Now I’m going to guide you on a few things to wake your body up.”
Hageseth perches himself on the stage and leads the crowd to rise and stretch while roaring like a lion and howling like a wolf.
“We’re all wolves and this is our tribe!” Hageseth shouts playfully to us.
The attempt of our collective howls and roars resemble more of a barnyard of small critters than vicious predators, but we try, as we clumsily mirror our leader, arms stretched overhead and swinging.
I had no idea the Senior Center was so exciting!
“Arooooooooh!” a man on the far right screeches, his howl lingering a few uncomfortable seconds after the rest of the room.
Out of my peripheral vision, my eyes follow the shifting of heads towards a younger man who is grinning wildly, his hands cuffed like paws against his chest.
The man then pounces onto the stage and Hageseth extends an open palm in introduction of the speaker John Dean, Director of Healthcare Strategy & Technology and speech-language pathologist specializing in the treatment of Parkinson’s disease and related disorders at Davis Phinny Foundation, a foundation for Parkinson’s disease in Boulder. Hageseth informs us that Dean is a walking encyclopedia of all things Parkinson’s disease and that he’s so sharp, he will quote something from the literature, then cite the reference of the professor or institution and has often met them. Indeed, Dean proves to be a passionate dispenser of knowledge about all aspects of Parkinson’s disease.
Dean parks himself next to his PowerPoint projector in the front of the room; his talk jazzed up with witty anecdotes and numerous scientific case studies on the latest advancements in alleviating Parkinson’s disease. My guess is it’s three cups of coffee combined with a general zest for life. Dean is on fire.
“Any questions?” Dean asks before diving into the first PowerPoint slide.
Immediately a hand cuts through the air in the front row.
Dean anchors a pointed toe, swings into a pivot, then skids in front of a woman, pointing the mic inches from her mouth.
“What’s the cure?” the woman hollers.
After eight pages of notes that I took during Dean’s brilliant presentation, it all circles back to this one question, which he sums up frankly:
“There is no cure as of now, but medicine as well as lifestyle adjustments such as attitude and vigorous exercise can slow it down.”
Dean predicts the cure for Parkinson’s disease may look a lot like cures for cancer since people have different types and stages.
The neurological effects of this brain disorder that affect one’s mental ability and mobility can be as unique as each individual; one person’s Parkinson’s disease might manifest as a tremor in a hand or foot and grow gradually worse. Another person’s Parkinson’s disease may manifest as a rigid limbs and slow movements. Other common symptoms such as expressionless, mask-like faces, slumped posture and impaired gait is common. Some people with Parkinson’s disease might even be at risk of dying from starvation because they can’t swallow (thus, I learned later, the need for singing, or in Hageseth’s tutorial, howling and roaring – I figured that it wasn’t just random).
Dean clicks through slides that overview the scientific neuroprotective benefits of intense exercise, eating organic foods (especially with animals and dairy) and avoiding chemicals, which may have contributed to many person’s Parkinson’s disease in the first place.
I learn the drugs are expensive – some even up to $1100/month and most of them focus on replacing dopamine in the body. More complex treatments use instruments like insulin pumps, dissolvable strips, pills or even surgical implants. Dopamine (the chemical that helps people move normally) is crucial because the cells that produce it started dying years before people are diagnosed with Parkinson’s disease.
Millions of dollars have poured into research on Parkinson’s disease. The cause has been linked to genetics and chemicals, but most cases are termed, “idiopathic”—a word used in medicine when the cause isn’t known. Some people have developed Parkinson’s disease overnight after chemical exposure but most show a gradual onset of symptoms.
As of now, 10 million people in the world are waiting for a cure.
Well, make that 9,999,999.
Hageseth referred to battling [a disease] as a bad metaphor, where somebody loses or somebody dies.
“I say it’s a condition that I have to dance with. Nobody dies from dancing but they do die from battles.” - Christian Hageseth
I caught up with Hageseth earlier in the week after his intense yoga with weights class at his health club.
I first met him at a local church that I visited in Fort Collins, Colorado about two years ago. It was a church for people who don’t attend conventional churches (more meditation, less preaching). Hageseth was the leader of the Making a Difference Team, where he was deeply engaged in the community helping those in need such as the homeless or women in safehouse shelters.
I remember at the time him showing me the slight tremor in his hand, and telling me how he sweats out his Parkinson’s disease through yoga and other exercise.
It wasn’t his philosophy that really interested me as much as his attitude. His eyes lit up and he talked with a fervor you might see in a child buckled in the window seat next to you on the plane, embarking on their first flight.
Hageseth reflects a sense of sincere magnetism. He listens to people with compassion and, as his wife Laurel Hageseth told me, “He never returns an unkindness when one is perpetuated on him.”
Described by Laurel as a man who would “fade away if he wasn’t making a difference in people’s lives,” Hageseth has received countless emotionally-drenched testimonials of letters from his days as a psychiatrist that began with, “I used to be your patient,” and ended with, “You saved my life.”
She recalls a particular event that sticks out in her mind. While practicing psychiatry, Hageseth fetched a patient about to shoot himself who had called a crisis helpline. He raced to the man’s house, gently coaxed him to relinquish his firearm and then drove him to the psychiatric facility. With help from Hageseth, “the man was made whole again.”
Hageseth’s life stirs a colorful narrative of adventure and altruism. He’s flown jet planes through sound barrier while serving in a U. S. Marine Corps Air Wing in North Carolina. He recalls training missions where he dropped napalm in the morning and then returning to the pediatric clinic to run a well-baby clinic in the afternoon. He’s traveled the world as professional speaker conducting seminars on humor for 11 years, has published several articles and a book that sold over 17,000 copies.
It’s this confident immersion into life and everyone he touches that may have you later wondering at 3 a.m. whether you need to collect another hobby or two, as your life dulls in comparison. This might play out with you contemplating buying some snowshoes or a plane ticket, but you’ll eventually settle into a safer display of edginess, such as growing a mustache.
It makes you wonder where this rare creature came from.
“I grew up as a strong Norwegian Lutheran and was prepared to work hard and not enjoy life very much,” Hageseth told me.
Raised in North Dakota, Hageseth attended Northwestern University on a scholarship graduating with a bachelor’s degree in chemistry before heading to medical school in Rochester, New York. After 21 years of school he volunteered to became a Navy Flight Surgeon at the height of the Vietnam War. When he left the military, he worked for a couple years in general practice and emergency medicine. Realizing his skills and temperament were more suited to psychiatry, he undertook a three-year residency in Southern California before moving to Fort Collins where he wrote a book on the therapeutic use of humor and traveled the world, and twenty years later producing a Cable TV series about bird hunting dogs.
The dizzying variety of ambitious ventures Hageseth pursued were his career, “not Parkinson’s disease,” he stated matter-of-factly.
Hageseth’s transparent, often humorous and detached approach to his Parkinson’s disease is refreshing. Many people wear their disease as a Purple Heart, something they are battling or have battled.
Hageseth referred to word, battle as creating a bad metaphor. Battles are where somebody loses or somebody dies.
“I like to challenge that and say it’s something I can learn from. Now I’ve gotten even crazier and I say it’s a condition that I need to dance with. Nobody dies from dancing but they do die from battles.”
Hageseth recounts a haunting tale of a woman who upon her diagnosis spent a year in her home, watching old movies, eating and “waiting to die.” Avoiding scenes like this is the sole reason why Hageseth leads the support group. He wants to give people hope.
“As soon as you show people things that they can do it’s amazing how things change.”
“The only thing people couldn’t figure out was why I could move so damn well." - Christian Hageseth
During Hageseth’s first year after being diagnosed with Parkinson’s disease, he was “doing exceptionally well.” Four years ticked by and he was doing better than the day he was diagnosed, surprising even the world’s most notable neurologists and movement disorders specialists and researchers on the cutting edge of neuroplasticity.
Norman Doidge, M.D., an internationally renowned psychiatrist, world-traveling lecturer and author of books on how the brain rewires itself examined Hageseth.
“You are one of the most remarkable examples of neuroplasticity I’ve ever seen,” Doidge told him during his examination, and when Hageseth demonstrated his gait, posture, and passion for yoga.
Hageseth was also evaluated by a movement disorder specialist at the University of Colorado who also confirmed he had Parkinson’s disease through a brain study.
“But the only thing people couldn’t figure out was why I could move so damn well,” Hageseth said.
Most agreed it’s the exercise. And I’m not talking about a light stroll around the block before curling up in your easy chair like a giant house cat.
Hageseth is an active yogi at his gym’s yoga classes at least four times a week, flowing through a Chaturanga like a swan diving in and out of the water, in between his outdoor wind sprints and dripping sweat through high-intensity cardiovascular training. He also walks three to four miles a day three to four days a week. He can challenge any 21-year-old as he zips from station to station at the gym on a mission in a no-time-for-pleasantries manner, whipping heavy cargo ropes up and down, heaving 100-pound weights and swinging weighted kettle balls.
“Sweating out Parkinson’s disease” is a concept epitomized by Hageseth and one of the main reasons he doesn’t take any medication for it (he did try that pricey Parkinson’s medication in the beginning of his diagnosis and found it mostly just made him sick). He knew there was a better way to live.
He demonstrates his high-intensity training called Tabata, a concept developed by a Japanese scientist that includes brief bursts of very high cardiac output in a row. You work out so hard you can’t talk, you’re out of breath and sweating profusely, then catch your breath in just enough time to do it again. When you exercise with this intensely, you put your body in a state of acidosis and the body’s recovery takes a lot longer.
“I will sweat for 45 minutes after a workout because inside the body is repairing everything,” said Hageseth.
The philosophy behind exercise especially for people with Parkinson’s disease is backed up by numerous studies on its improvement of motor skills and neuroplasticity (the re-wiring and growth of new neurons in the brain).
Fort Collins, Colorado’s Certified Parkinson’s Physical Therapist Specialist Bob Waldchen, trained Hageseth in the early days of his diagnosis. Hageseth’s personalized self-constructed Tabata routine resembles much of what Waldchen teaches his clients with Parkinson’s disease: intense, sweating, near-maximum effort through big amplitude movements in a short amount of time.
“The focus of the exercise is on challenging the nervous system and the brain in particular to work differently,” said Waldchen.
Does this type of exercise preserve dopamine, create more dopamine or make the existing nerve cells work better? Scientists and researchers investigating the disease don’t know for sure. The only thing we do know is that there’s enough research out there that show intense exercise does make a difference.
Waldchen teaches a boxing class in Fort Collins with 15 long-term senior-citizen clients with Parkinson’s disease who sweat intensely twice a week through high-intensity-training that Waldchen refers to as “PWR.” What you witness in Waldchen’s classes will change the face of this “degenerative” disease.
I learn through both Waldchen’s and Hageseth’s testimonials that the boxing clients aren’t just controlling their Parkinson’s disease, they’re getting better.
“You would expect the disease to take over at some time but no one in our classes walks with a cane, no one is falling – we’re not seeing [degenerative symptoms] at all,” Waldchen said.
“But before exercise, it’s attitude,” Hageseth said. “It’s the perspective you must adopt.”
It’s this, “positive, proactive, persistent, unyielding attitude,” that Waldchen has observed in Hageseth as immutable as Hageseth himself that launched his life-long quest to inspire people to live life to its fullest – despite their sometimes overzealous and wobbly “dance partner.”
For Hageseth, his dance partner came knocking six years ago.
“Emotion, which is suffering, ceases to be suffering as soon as we form a clear and precise picture of it.”
- Benedictus Spinoza
“The first inkling of Parkinson’s disease was a tremor in his right hand,” Hageseth’s wife Laurel told me.
There’s an adage in medicine that says never be your own doctor, but Hageseth ignored that and self-diagnosed himself as having Parkinson’s disease, despite the first doctor he went to who dismissed the disease as simply a benign “essential tremor.”
Over the course of nine months, Hageseth’s wife observed him stooping and displaying the typical Parkinson’s disease mask face. The tremor grew worse until “the evidence was pretty irrefutable,” she said.
The evening following the doctor’s visit confirming Hageseth had Parkinson’s disease, he sat down at his kitchen table and looked down at his tremoring hand.
“What am I going to do?” he thought. He didn’t know much about the disease as he hadn’t taken care of many Parkinson’s patients during his years of medical practice.
“But I quickly learned a lot. I learned that I could make a difference and that the biggest adjustment is my attitude.”
It was around the time of diagnosis that Hageseth re-read for the tenth time the book, Man’s Search for Meaning, a spiritual memoir of psychiatrist Viktor Frankl who survived life in a Nazi death camp. Frankl believes suffering is unavoidable – our quest for what we find meaningful is our primary drive that makes life worthwhile.
While most of the other Jews in the concentration camp slipped into a state of apathy due to the nightmare of disease, starvation, torture, loss of identity and thoughts of one’s inevitable death, Frankl maintained a sense of hopefulness and curiosity about human liberty.
“Is there no spiritual freedom in regard to behavior and reaction to any given surroundings? Is man merely an accidental product of conditional and environmental factors?”
Frankl discovered from his experiences in the concentration camps that “man can preserve a vestige of spiritual freedom, of independence of mind, even in such terrible conditions of psychic and physical stress.”
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.
It is spiritual freedom which cannot be taken away – that makes life meaningful and purposeful.”
Tired of daily and hourly trivial thoughts of survival, Frankl forced his thoughts to another subject: he imagined himself standing on a platform in a well-lit and warm lecture room in front of an attentive audience giving a lecture on the psychology of his stay in the concentration camp. Through this vision, his oppression had a place and he observed his current suffering as if it were already the past.
“I feel as if I live in every cell of my body.”
- Christian Hageseth (on doing yoga)
Frankl’s memoir resonates with Hageseth as his disease only adds another layer of first-hand validation that his primary drive and life mission is to help people master their own inner work to reflect an outer reality of peace and self-reliance, and that the body is also receptive to our inner beliefs and visualizations.
Over many career paths, his mission has always remained the same, but the meaning has changed. Hageseth once embarked on medical missions as a devout Christian, taught Sunday school and poured over his bible in study. Only in the last decade, he concluded that much of what the Bible claimed to be true did not stand up to his historical investigation. Christian principles of kindness, forgiveness, and compassion stayed with him, but the practice of Christianity as a religion faded from his life.
Hageseth’s self-directed spiritual study and meditation sets him in a realm resembling more of an eastern philosophy. Even the bible’s main theme, that Jesus died to save people from sins, no longer resonates with him.
“I do not believe it,” Hageseth said. But he quickly adds, “I think we are called to imitate Jesus, not try to curry his favor.”
“I know there is a transcending consciousness that brought all into being and is present everywhere. I don’t like the word God because it has too many conflicting connotations. But I believe in that consciousness and I believe it’s benevolent.”
Once Hageseth left behind traditional Christian beliefs, he turned inward. His wife noticed a change in him. “He focused more on possibilities, and his demeanor was more peaceful,” she said.
He now begins each day with a candle-lit meditation approach that was outlined in the book that became the catalyst for his daily meditation practice, Jon Kabat-Zinn’s Full Catastrophe Living, then practices yoga by himself for another fifteen minutes.
“The first day that I went to a yoga class in my life was the day after I was formally diagnosed.”
Afterwards, he noticed there was something very different about his body.
“I feel as if I live in every cell of my body.”
Hageseth’s four-plus weekly yoga classes immerse him in a thoughtless zone of being aware and peaceful in the present moment. His body and breath move in synchronicity, and a new vigorous life force enters his body.
His “dance partner” is silently submissive.
“I never thought to myself, the sky’s falling,” said Laurel Hageseth, recalling the early days of Hageseth’s diagnosis.
“Knowing Chris, if anyone could come through this and not steadily go downhill, it would be him.”
I would argue that Hageseth is doing the opposite and blazing steadily uphill, revamping the entire image of what it means to have Parkinson’s disease.
Only a year-and-a-half ago, he and Laurel embarked on a 14,022 foot climb up Mount Bierstadt and the adventurous couple continues to hike year-round in Colorado.
How can one person’s diagnosis of Parkinson’s disease lead to her sulking in her house for a year, watching old movies while another person’s diagnosis leads him up Mount Bierstadt and immerse himself into a rich practice of yoga mediation?
This is the million-dollar question on human resiliency I don’t know if I’ll ever have answered.
“He who has a why to live for can bear almost any how.”
- Friedrich Nietzche
As the Parkinson’s disease support group nears a close, Hageseth introduces me to a woman he insists that I meet with: Billie Pawlikowski. She was the woman sharing photos of her art work.
“Can I see them?” I ask, and Pawlikowski eagerly pulls out her phone and scrolls through her photos.
The designs on stained glass and mirrors remind me of items shelved in the collectibles section of an art gallery.
I stop at a drawing of a large house.
Pawlikowski’s voice rises in excitement and points at the drawing.
“That’s my childhood home – my exact memory of how my dad built it. We moved it three times. I’m telling you, two weeks ago I couldn’t draw a stick figure. I don’t know where it’s coming from.”
Then Pawlikowski tells me her story and I have an idea.
There was a time when she was the sulking woman in her house, watching old movies, afraid to face her future with her the new stamp of Parkinson’s disease.
This reminds me of what Lao Tzu, a sixth century B.C. philosopher of Taoism once said:
“If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.”
“The brain is like the universe. I don’t think we’re ever going to understand the universe fully...The universe goes on to infinity and I think our brains could too."
Clearly, those depressing days are gone and Pawlikowski embraces the present. Parkinson’s disease is a minor part of what she does, not a major part of who she is.
“You can have Parkinson’s disease and you can have joy,” she tells people, who nod, smiling in agreement as one must politely do when faced with a loaded topic such as disease, but the distant strike of fear in their eyes tells Pawlikowski they don’t understand.
Pawlikowski is now as revived as a lead baton twirler, spinning out tricks like these crafty drawings that leave her audience with breathless exclamations.
I learn she’s a former teacher and RN and who momentarily lost her identity in the shuffle of retirement.
Then she read a book by Eckhart Tolle and her purpose shifted.
“Parkinson’s disease is my gift,” she now tells people.
I ask about career dates but Pawlikowski doesn’t keep track of time. She says life should be a continuum, like the branches of a tree that lead into even more branches, your purpose always in flux, propelling you in directions not always foreseeable.
I then ask if she takes any medication for Parkinson’s disease since I see no obvious sign of the disease in her thin and energized 70-year-old body. She mentions she does take one, and launches into the story of when Parkinson’s disease first manifested as a tangible crisis: she fainted and collapsed during her changing shift at the hospital and after numerous tests, no one could find out why. The medication saves her from these minor embarrassments but comes with its own adverse side effects propelled by too much dopamine.
“I have a shopping problem,” Pawlikowski admits, and my mind suddenly launches into other possible scenarios of dopamine-induced hedonism.
She barrels into the science of how statins may protect the brain by lowering lipids. But neither of us seem convinced that the Parkinson’s disease is resolved through medication.
“The brain is like the universe,” Pawlikowski says after a thoughtful moment.
“I don’t think we’re ever going to understand the universe fully. It’s too vast. Too complicated. The universe goes on to infinity and I think our brains could too. Everything in our bodies reflects everything in the universe. With our brains anything is possible.”
Pawlikowski’s philosophy resembles an unerring undertone of Hageseth’s. For Hageseth is also a man who gives seminars on the brain and body connection and has spent forty years witnessing the effects of human thought on the body.
Hageseth predicts that there will be a cure for Parkinson’s disease in 15-20 years but he’s not sitting around waiting for it.
“In the meantime, I am part of a tectonic shift in not thinking it has to be degenerative and progressive.”
And so Hageseth continues life with his dance partner, not in a slow-dance of any kind, but a kind of a fastidiously-free waltz, one that he’s in sync with and when it steps on his toes every now and again, he might just laugh.