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Five Boro Bike Tour Caps A Journey Through ‘The Wilderness’ Of A Rare Disorder

Among the 30,000 bicyclists breezing through the five boroughs of New York City in the annual Five Boro Bike Tour, Sunday, May 5, were six members of the Newtown Venture Crew 70 and one of their advisors, Peter Van Buskirk.

The 40-mile bike trip that starts just north of Battery Park at the tip of Manhattan and winds its way through Central Park, over the Queensboro Bridge and crosses the Verrazano-Narrows Bridge to end on Staten Island, six to seven hours later, is a mostly flat and not too taxing ride for the average bicyclist.

This is the third time that Mr Van Buskirk has led members of the crew on this all-day expedition through the heart of New York City, and the fourth time that he has ridden the course. It would be unremarkable, except for the fact that less than two years ago, he was in a wheelchair, diagnosed with the extremely rare autoimmune disorder known as multifocal motor neuropathy (MMN). The progressive muscle disorder attacked the nerves to his muscles, accelerating from the first vague symptoms in May 2010 to November of that year, when he found himself with no use of his arms or legs, and then the loss of his core strength.

“I consider myself lucky to always have had the ability to breathe and swallow,” Mr Van Buskirk reflected on the early days of his venture into “a wilderness” he had never before considered.

Prior to May 2010, the wilderness Mr Van Buskirk normally confronted was all that nature had to offer. He had led an extremely active life, playing soccer, backpacking, sailing, kayaking, climbing, and camping. So active a life, in fact, that at one point in his medical journey, he found himself wondering if he had perhaps used up his allotment of activity for a lifetime.

A difficulty in lifting finally led him to seek medical attention in 2010, he said. Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) was the diagnosis he was given. It is very treatable and doctors told him that he would do fine. But it was not long before walking became difficult, and he quickly began to lose use of his limbs.

“It was hard for me to say, but I had to say to my doctors, ‘I’m getting worse.’ Sometimes,” he said, “doctors need to hear that.”

Because MMN affects only about one in a million people, Mr Van Buskirk suffered the not uncommon misdiagnosis of a similar neuropathy. Prednisone treatment for CIDP, which has symptoms similar to those of MMN, was actually exacerbating the symptoms.

“That was in November of 2010. This was much worse than they said it would be,” he said. The day that he realized he could not lift a fork to feed himself or even get out of bed was the beginning of a dark time for Mr Van Buskirk and his wife, Tracy. He entered Danbury Hospital, with doctors now offering him a more measured prognosis. He resigned himself to accept that this could be his life, going forward. He worried about the impact on his family of a life in which he was unable to do for himself.

“It’s pretty daunting to think about. I was just trying to survive each day. You go pretty deep into your awareness [when confronted by this kind of challenge],” he said.

Nonetheless, he has some very good memories of the two months he spent in the rehabilitation unit of Danbury Hospital. Doctors had agreed that the prednisone was not helping. “I was coming out of that prednisone haze, and I actually got joy out of cheering up other people. I have a knack,” said Mr Van Buskirk, “of being able to get joy from the present moment.” That gift, he said, allowed him to reach out to people around him, even as his own physical strength diminished.

 

A Low Point

There was no joy in the moment, however, when January 2011 came and he was dismissed from the hospital to a rehabilitation home in Ridgefield. “I knew it was because they couldn’t do anything more for me,” he said. “It was definitely a low point.”

Arriving at Laurel Ridge Rehabilitation Center in Ridgefield by ambulance, in the middle of a snowstorm, he could have fallen into despair. There was no family member or even a friend to buoy him up. But he is eternally grateful, he said, for the smiling faces of the nurses and aides there who took him in that day. “I connected with them, and I think that it is important to connect with others,” he said. He nicknamed his caregivers the “LCGs,” or Loving Care Givers.

“This was an extremely pure experience, that I could do zero for myself. This is really not just a medical story, but a spiritual story,” he said, defining spirituality as “what connects us. That became very obvious to me through this whole thing. It became clear to me how much personal power we have to influence those around us, if you act one way or another. There was a lot of sustenance in that.”

He credits the power within himself and the power of those around him — professionals, family, and friends, far and near — collectively contributing to his ability to get through the days. Reaching out to friends and having friends reach out to both him and his wife was a raft they could cling to in rough waters. “That’s the big thing. Besides the excellent medical care, that’s what got us through this,” said Mr Van Buskirk.

Maintaining a respect for all those around him, and for himself, was a critical component to keeping his attitude positive. “In the hospital and in the rehab center, for example, I refused to wear those Johnnies,” he said. Setting his own hours for meals and for programs, as best could be done within the parameters of a setting, also increased his sense of empowerment. They were small things, but so important in a world where he now relied on others for everything physical.

 

A Turning Point

He also hung onto the words of one of his specialists at Danbury Hospital. “She told me, ‘You’re a young guy. We’ve got to get aggressive with this.’ That was the turning point, psychologically, for me. That’s when I started getting a grip about myself,” Mr Van Buskirk said.

It had been suggested that Dr Thomas Brannagan at New York Presbyterian Hospital, considered to be one of the top neurologists in the country, might be able to help him. But the earliest Dr Brannagan had an appointment was nearly six months down the road. Even though he could barely hold a phone or use a computer, Mr Van Buskirk became proactive.

“I started making phone calls and I made friends with the scheduling nurse at Dr Brannagan’s office. I sort of put a human face to all my calls, and eventually she said that if an opening came up — lots of older patients tended to cancel if weather was bad — she would call,” he said. Again, he said, it is about making connections. His persistence paid off. The night before a huge snowstorm was predicted, the Van Buskirks received a call saying that if they could be in the city by 8:30 am, the doctor could see him.

It was 8:30 am on the dot when they pulled up to the office, having made their way through the blowing snow and bad roads, to face a day of testing. It was 4:30 pm before Mr Van Buskirk met with the doctor, but it is a meeting that he credits with putting him back on the road to recovery.

It was the detrimental effects of the prednisone treatment that helped Dr Brannagan identify the issue as MMN, not CIDP, requiring a much different treatment. Dr Brannagan suggested a course of treatment including the biodrug Rituxan, approved for certain types of cancer. Finessing the insurance company would be the challenge, Dr Brannagan told the Van Buskirks.

“He was right. There was a lot of advocating by phone for myself, and I was still deteriorating physically,” he recalled. His patient advocates in the oncology department of Danbury Hospital suggested he approach the drug company directly. But it was not until he was twice rejected by the insurance company that he got the call for which he had waited.

“I remember exactly where I was when the drug rep called and said, ‘You’re approved.’ It was a ray of light,” Mr Van Buskirk said. That was a Friday. By that Monday in March 2011, he began treatment with Rituxan.

Dr Brannagan had told him it might be several weeks before results could be seen. Meanwhile, he continued on with the support of friends and family, viewing life from the wheelchair.

 

A Network of Strength

“My family and friends network was a huge, huge, thing. There is a lot of strength you can get from that,” said Mr Van Buskirk. When he was released from Laurel Ridge after three months, he was still in a wheelchair, unable to help himself in any way. Knowing that they would need assistance, the Van Buskirks arranged for a visiting nurse to come in the morning to help him out of bed and get him ready for the day. His wife worried how he would manage while she was at work; but 50 friends signed up on the Lotsa Helping Hands community assistance website that they had discovered. Those friends stopped by to help him with lunch, make sure he was comfortable while Ms Van Buskirk was at work, and give him rides to and from the hospital for treatment and to doctor appointments. Friends also pitched in to build a ramp from the driveway to the front door of the house, before he was released.

With MMN, the body turns on itself, destroying the myelin sheath surrounding the nerves. Rituxan controls the immune system to reduce that attack, allowing the body to heal.

“One night, all of a sudden, I was sitting in my wheelchair and just could feel my body move. It wanted to wiggle a little,” he said. From there on, very gradually, his body began to improve. By July 2011, he was standing with the help of a walker.

“One leg just went out, and I took a step. My body just knew to do it,” he said.

He was still “furniture walking” when a friend took him out for a successful first drive in his car. “It was a little crazy,” he admitted, but an affirmation that he could return to normal.

“I’m a competitive person and inherently cheerful. It’s a gift to be able to keep your head screwed on during something like this,” he said. Those qualities, he believes, along with his ability to move forward positively through resistance, and his good fortune in connecting with Dr Brannagan, are what brought him to the day when he found himself sitting in the saddle of a bike, his legs pumping, his hands clasped to the bike handles, and surrounded by 29,999 other cyclists.

It had been five years since he had taken part in the Five Boro Bike Tour, sponsored by Bike New York. “Last year, when I was still just sort of walking, I set the goal that I would ride my bike in 2012. Sometimes, you get an image of something, and it helps you achieve it,” he said. He kept that vision of himself aboard a bicycle, and last September, he put on a helmet and elbow pads, climbed onto his bike and rode two miles along the Cape Cod bike trail. It was a personal triumph.

Less than four months later, he decided to do the Five Boro Bike Tour. Along with his wife, Mr Van Buskirk has been an advisor to Venture Crew #70 for several years. Ms Van Buskirk shouldered that responsibility for the two years he was incapacitated. “So I don’t really know this group of Crew members so well,” he said. He was surprised and touched that the members who signed up for the Five Boro Bike Tour knew what a big day it would be for him.

Preparation for May 5 consisted of attaching a trainer to his bicycle and working out in his home until the weather cleared up. “Then I started to get out on some bike paths,” he said. There was a bit of falling and a few times when he overestimated his ability and needed to call for a ride back home, but his strength was returning.

 

Ready!

The week before the Five Boro, he told his wife and therapist, “I’m ready!”

“I am full of gratitude,” said Mr Van Buskirk. “The biggest thing was my ability to connect to people, and the totality of that is spiritual for me. That includes even the slightest chat with an aide, some nurse praying for me, wisdom from an occupational therapist, helping to brighten the life of an old guy in therapy, or a young cancer patient across the hall, telling some good jokes to the hospital psychiatrist, sharing discussions with a friend who would feed me green tea during infusions, or someone else hauling my floppy body through snowstorms to the hospital. That is how Tracy and I got the power to get through it,” he said.

The Bike New York event ends on Staten Island, where cyclists gather to celebrate and then catch the ferry back to Manhattan.

“There was this special moment. We were about a mile from the ferry. The wind was at our backs, we could look across the water at the Freedom Tower going up, and everything was perfect,” he said.

 “We’d done it.”

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