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Monday, October 16, 2017

Ed Bieber hopes to regain a trail lost to Parkinson's

October 16, 2017  Peter D. Kramer

Ed Bieber, founder of The Nature Place Day Camp in Chestnut Ridge, talks about the camp and his Parkinson's disease, Oct. 6, 2017.


Convincing kids to take a hike in the woods is no easy task in a WiFi world, where devices offer constant distraction and conspire against reflection. It’s a task made tougher for Bieber in the past 13 years, since he was diagnosed with Parkinson’s disease. He hikes closer to home these days and can no longer hike alone. Even walking his dog, a Lab-husky named Charlie, has become difficult, as the disease has sapped his strength.
Still, Ed Bieber remains a voice in the wilderness for the wilderness, inspiring families to tune out of the wider world and take comfort in the solitude and wonder of nature. He is buoyed by the promise of a medical procedure that might diminish his symptoms enough to get him back on the trail.

Diagnosis and 'feel guide'

The fork in the road that took Ed Bieber off the trail came about 14 years ago, when he lost his sense of smell. Then his left arm wouldn’t do what he wanted it to do.
“Then I started to walk funny. My gait was weird. I didn’t swing my arms. People asked why I was holding my left arm funny, like I’d injured it. I didn’t know I was doing it.”
A neurologist took a minute to watch him walk and had an instant diagnosis: Parkinson’s disease.
Bieber had known people with Parkinson’s and knew that they shook a lot.
“I don’t have the shakes that much. I have the slowness, the muscle aches, the lack of smell,” he says.
In conversation, when his medication is working, Bieber’s face is animated. His head shakes when he speaks, his hands curl in at the wrist and he pretzels his legs around each other. At times, he tenses up and cannot speak, for which he apologizes. As his medication wears off, Bieber’s dyskinesia — body movements over which he has no control — increases. He needs a cane to get around.
tress and lack of sleep can make things worse – and insomnia comes with the territory.
But Bieber being Bieber, he made the most of those sleepless nights, lemonade from lemons. 
In 2011, he wrote “What Color Is the Wind? A Feel Guide to the Out-of-doors for Parents with Young Children.”
It’s not a field guide. It’s a “feel” guide, with activities tailored to each season.
“We’re home again when we’re outside,” he says. “Kids want to be outside. I see iPhones and technology and games really being destructive to childhood. Step outside and there’s magic everywhere.”


The book is a starting point, he says, a way of getting families out into the woods, where he hopes “they let nature take its course.”
Nature has taken its course with Bieber.
The native of North Arlington, New Jersey, near The Meadowlands, earned a degree in botany from Rutgers and a master’s in conservation and outdoor education from Michigan State.
His resume found its way to the Edwin Gould Foundation in Spring Valley, where he worked at the nature center at Lakeside School for dependent and neglected kids. He soon branched out from there, teaching about nature in public school districts across Rockland.
He still meets clerks in stores who ask him if he was the guy who took his elementary-school class into a swamp or to tap maple trees.
“The man who fixes my furnace said, ‘You’re Mr. Bieber! You came to Mrs. Schwartz’s class and tapped a tree! I’ll always remember that!’”

A natural connection

When Bieber was 15, he was on a trail in Harriman State Park when he reached a personal insight that would inform his life. It wasn’t an epiphany, more a realization.
He can remember exactly where he was when it happened.


Ed Bieber teaches a group of Nature Place campers about ferns at the camp on Hungry Hollow Road in Chestnut Ridge. (Photo: The Nature Place)

“It was on the R-D Trail, the Ramapo Dunderberg, it’s my favorite. And I came to a spot, right before I hit the Appalachian Trail, and I sat down and there was a sacredness in this spot, a bit of grace, if you can imagine that. It didn’t come down like a lightning bolt, but I said to myself, ‘What I want to do is to work with kids in the outside, to introduce them to the beauty and the joy that is the world.’ That’s the spot it came to me and it built up over the years.”
He knows Harriman’s trails intimately, and for years would hike there in all seasons.
“This is my calling,” he says firmly, like a man with a calling.
The “feel guide” opens with a quote — attributed to novelist, poet and environmental activist Wendell Berry — that could well be Bieber’s credo:
“Leave your windows and go out, people of the world, go into the streets, go into the woods and along the streams. Go together, go alone. Say no to the Lords of War which is Money which is Fire. Say no by saying yes to the air, to the earth, to the trees, yes to the grasses, to the rivers, to the birds and the animals and every living thing, yes to the small houses, yes to the children. Yes.”
He dedicates the book “To all the children with whom I have shared the out-of-doors.”
That’s a lot of kids, a quarter-million is Bieber’s estimate, since 1970. 
One was Peter Morgan.
Peter Morgan is a senior attorney for The Sierra Club in Colorado. He grew up hiking the woods of The Nature Place Day Camp in Chestnut Ridge and credits the camp with inspiring his career protecting the environment. (Photo: Peter Morgan)

“With the exception of my immediate family, I can't think of a bigger influence in my life than Ed Bieber and The Nature Place Day Camp,” says Morgan, 38, who grew up in Nyack and was a camper there for 12 years and a counselor for another six.
“I have no doubt that my choice of career today as an advocate for the environment through my position as a senior attorney for the Sierra Club follows directly from the values and ethics I learned from Ed.”
Morgan now lives in Denver, a father of two teaching Bieber’s lessons to his children. 
“I think often of the hikes Ed led, and his joy and delight at sharing with us some discovered wonder of nature, whether it was a deer's footprint in the muddy bank of a stream, or the flash of a scarlet tanager high in the forest canopy, or an acorn just starting to sprout.”
Memories of Bieber are flooded with his gentle inclusiveness, a self-deprecating good humor, Morgan says. 
“I also think often of the skits Ed would perform at ‘morning share’ at camp, complete with ridiculous costumes and funny voices, and how his generous spirit would gently encourage the more timid among us to join in the silliness.”

A surgical remedy

Bieber, 70, knows the life he leads with Parkinson’s: the painful muscle aches, the facial masking, the falls and the dyskinesia. 
“A couple of years ago, I was working with a group of kids here and one boy asked: ‘Mr. Bieber, why are you mad at me? You look scowly. You look mad.’ That was the Parkinson’s mask.”
It’s called hypomimia and results in a loss of facial expression, a blunting of the expression that the boy interpreted as anger.
“I explained it to him, that I have Parkinson’s, that I walked differently, and my face is a mask, sometimes it looks angry but it’s not. And he said ‘Oh!’ and he went off exploring.
You don’t need big explanations with kids. You just need to tell them what’s going on.”
Parkinson’s has forced Bieber to cut back on his treks into the woods. He has handed the running of the camp over to his son, Daniel.

“I didn’t do any hikes in Harriman this year,” he says. “I just stayed around here.”
“Here” is 200 acres in and around the Threefold Community in Chestnut Ridge, where he has run The Nature Place for 33 years.
Asked if 200 acres is enough for him, he answers immediately.
“No,” he says. “That’s why I’m going for this operation. I want to get through it and be able to hike again, by myself and with kids up in Harriman Park on the trails.”
The operation — which Bieber underwent on Oct. 9 — is Deep Brain Stimulation. It involves placing two electrodes into the part of Bieber’s brain affected by Parkinson’s. A pacemaker of sorts monitors and can stimulate those areas to diminish Bieber’s symptoms.
The promise of the surgery has him visualizing a life closer to how he used to be.
“After the surgery, my posture will be more erect, I won’t get the facial mask,” he says. “The dyskinesia will stop.”
Those will be changes to his body, but he is also visualizing where he’ll take his body. If the operation is successful, Bieber knows where he will go to celebrate, to the Ramapo Dunderberg, where it all began.
“After the operation, I’d like to go there, to thank the gods or the spirits for allowing me to come here again. It opens me up for opportunity. I can take myself and my dog and my kids hiking again up there. I can get the physical and spiritual exercise that I need.”

'Outside/In'

Bieber hasn't stopped writing. His latest book, “Outside/In: Thoughts,” is about to be published. Written over the past four years, it takes its title from a John Muir quote: “I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in.”
There are thoughts on nature, on Parkinson’s, on going outside, on seeing a fleeting rainbow during a rain delay at a Rockland Boulders game.
“I’m hoping the book talks to people who have chronic diseases, how it’s simple to get out into the wonder of the world, into nature, and it’ll do you a world of good.”

'At home in nature'

Ed Bieber leads a group of Nature Place campers on a hike. 
(Photo: The Nature Place.)


“I believe we’re part of nature, we’re from nature, but we live in the whole world and the whole world is scaring people lately,” Bieber says.
When the headlines get to him — and they get to him more and more, he says — Bieber makes sure to take some time outdoors in the afternoon.
“You don’t have to achieve anything in nature to get to a good spot. With the trees you see, everything is as it’s supposed to be. You don’t have to reach a certain goal, or make as much money as you can, to be at home in nature.”
Some might call that naïve.
Bieber remembers an open house one spring where he talked about his non-competitive nature-oriented camp.
“One father stood up and said: ‘This is so unreal. This isn’t the real world.’ And I said, ‘Yes. And we’re glad that we’re here doing this.’”
You can’t fault success, he says. It’s been going 33 years. 
“People want this for their kids. We’re not a sports camp. There’s too much competition in the world of kids. We’ve chosen to be cooperative."

Learn more

The Nature Place Day Camp: July 2 to Aug. 10, 2018. For children age 4-16. On the campus of the Green Meadow Waldorf School and the Threefold Educational Center in Chestnut Ridge. www.thenatureplace.com
http://www.lohud.com/story/news/local/rockland/2017/10/16/ed-bieber-hopes-regain-trail-lost-parkinsons/731130001/
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