I’m Goin’ For A Bike Ride
Preface
My goal is to tell important stories with pictures and words to make a difference. Most of my work is related to social justice in some way which includes bringing opportunities to people with illness and disabilities- they deserve all the opportunities everyone else enjoys. There are so many people and organizations that have this commitment. One great organization is the Pennsylvania Cener for Adapted Sports. I’m delighted to help tell their story.
Introduction
“I’m goin’ for a bike ride!” Those six words wouldn’t be given a second thought by the vast majority of people. But for a person with disabilities, going for a bike ride can seem as far away as going to the moon- unless someone brings it closer. That’s what the Pennsylvania Center for Adapted Sports does- brings sports closer to people with disabilities. The benefit can be reduced to just five words: “It makes me feel alive!” For someone with a disability that keeps them out of the mainstream of life, feeling like they’re really living is worth its weight in gold… PCAS is a great organization that is below the radar of most people- that needs to change!
Pennsylvania Center for Adapted Sports (PCAS)
The best way to introduce PCAS is to let the organization speak for itself:
All great organizations have strong visionary leaders behind them and the PCAS is no exception. One of these leaders is Loretta Cohen. She joined as a volunteer in 1994 (the organization began in the early 1980’s): “This program opened up a whole new world for me where we support people with physical disabilities but the disability is somehow secondary to people just living their lives; it’s about people who have decided that having a disability doesn’t mean they’re not going to live a terrific life- that’s why I fell in love with it!”
Loretta started the Chester County Cycling Program: “I modeled it after the Philadelphia program for people who live in Chester County; at that time the Chester Valley Trail was being finished- this was in 2011… We ran a pilot project and got a really good response- a dozen people were coming to check it out, and we had a great volunteer response as well- one volunteer from the West Chester Cycling Club who was particularly jazzed up said: ‘We have to do more; when can we do more?’… Having volunteers like that made me feel we could make it happen.”
They started with loaner bikes from the Philadelphia program: “As we branched out I wrote a grant to get money for new bikes and equipment (grants and donations are how PCAS is funded).” Then Loretta had the brilliant idea to have a benefit event- the annual Cinco de Mayo Benefit Bike Ride and Walk: “It benefits the whole organization and it helps us serve more people… In 2017 the Chester County Cycling Program has twenty three active cyclists and twenty three active volunteers.” Sounds like a perfect match. In fact this perfect match holds true for all of PCAS which has three hundred athletes and three hundred volunteers.
All great organizations have strong visionary leaders behind them and the PCAS is no exception. One of these leaders is Loretta Cohen. She joined as a volunteer in 1994 (the organization began in the early 1980’s): “This program opened up a whole new world for me where we support people with physical disabilities but the disability is somehow secondary to people just living their lives; it’s about people who have decided that having a disability doesn’t mean they’re not going to live a terrific life- that’s why I fell in love with it!”
Loretta started the Chester County Cycling Program: “I modeled it after the Philadelphia program for people who live in Chester County; at that time the Chester Valley Trail was being finished- this was in 2011… We ran a pilot project and got a really good response- a dozen people were coming to check it out, and we had a great volunteer response as well- one volunteer from the West Chester Cycling Club who was particularly jazzed up said: ‘We have to do more; when can we do more?’… Having volunteers like that made me feel we could make it happen.”
They started with loaner bikes from the Philadelphia program: “As we branched out I wrote a grant to get money for new bikes and equipment (grants and donations are how PCAS is funded).” Then Loretta had the brilliant idea to have a benefit event- the annual Cinco de Mayo Benefit Bike Ride and Walk: “It benefits the whole organization and it helps us serve more people… In 2017 the Chester County Cycling Program has twenty three active cyclists and twenty three active volunteers.” Sounds like a perfect match. In fact this perfect match holds true for all of PCAS which has three hundred athletes and three hundred volunteers.
Loretta Cohen with cyclist Beth Davis- the affection is clear to see.
“Adapted” Is More Than A Tag Line
Loretta: “We adapt to people’s needs because every disability, even within a single diagnosis like a spinal cord injury or MS, is specific to the individual; for each cyclist we figure out how the sport will meet their needs rather than how they can adapt to the sport… For example, we had a hand powered bike that worked well for many of our cyclists, but for one woman the handlebar system was not right; so we purchased a new set of handles, specifically for someone with quadriplegia- now we can swap them out as needed to suit the rider’s particular disability.”
In addition, many cyclists may lack the mobility, strength or balance to get onto bikes by themselves- many bikes are very low to the ground. So volunteers transfer cyclists and that must be done correctly so as not to cause injuries: “I have to give a huge shout-out to Bryn Mawr Rehab Hospital- their staff volunteers to educate our volunteers in proper transfer techniques.”
PCAS adapts with bikes of just about every shape, size, and configuration- some are hand powered.
Some are foot powered.
Some have an extra motor.
Some are for the kiddos.
Volunteer Chris Robinson demonstrates the true meaning of “adapted” as he “fine-tunes” Bob Marron’s seat position- whatever it takes.
Loretta carefully lowers Beth Davis onto her bike. This routine is repeated for every cyclist that needs help- getting some cyclists ready can take 10-15 minutes.
If It’s Sunday, It Must Be Time To Go For A Bike Ride
From April through October, 1:00PM means it’s time to go for a bike ride on the Chester Valley Trail. The bright red PCAS trailer arrives with its precious cargo of bikes.
There’s no missing that sign.
The Cyclists: Six Are Featured
What stands out about the cyclists is that they are so happy when it’s time to ride. They’re excited, talking and laughing with everyone- this is better than any medicine that comes out of a bottle.
Allison McCool (61) was diagnosed with Multiple Sclerosis at 47. She suffers from an extreme and very rare form known as Progressive Relapsing MS.
It started with loss of balance and problems with gait. She tried to ignore it as long as possible, but when her yoga instructor asked if she had ever been diagnosed with a neurological disorder she knew it was time to take this seriously: “After the diagnosis I worked three days a week from home, but it finally became apparent that I couldn’t keep up with the work.”
Athletics has always been important to Allison and she likes to think that it helps her maintain strength in the face of MS. But the impact of MS on her body makes it very difficult to stay active: “I spend the whole day in my power chair except when I sleep.”
Allison learned about the PCAS from the National MS Society website: “They offer many different activities at many locations including cycling in center city but that is too far away, so Loretta brought the program to us… We just had our fifth anniversary.”
What does this mean to Allison: “It’s so great to be outdoors; it’s important to be part of things and to show people that you don’t have to sit home and feel sorry for yourself- you can have a life; this makes me feel normal and I have a great time… If this wasn’t available I wouldn’t have physical activity.”
How does PCAS provide support at the ride: “They help every rider because every adaptation is different; they have to keep adapting to me because my situation keeps changing- I used to ride an upright bike but then I needed something lower, so they found this new bike which works much better for me.”
Allison is a great example of the care provided by volunteers and of the joy of the experience- she prepares to be transferred to her bike.
The bike is fitted to her needs.
Her helmet is strapped around that smile.
She’s ready to go and couldn’t be happier.
It’s off to the races with volunteer Greg Walters in tow- every cyclist rides with a volunteer for support.
As she rides, her thoughts couldn’t be any further away from MS- and that’s the whole idea!
Today’s ride is over and Allison is already thinking about next week… This program is surely a gift!
John Langdon (35) was playing with friends when he was hit by a car, at just 9 years old: “The car hit me in the face, spun me around and broke my leg; paramedics flew me to Children’s Hospital of Philadelphia.”
“They said I died, but they were able to bring me back; they told my parents I was completely brain dead, but an experimental drug reduced the swelling and I was able to come back.” He was an inpatient at the Nemours/Alfred I. duPont Hospital for Children for three months: “I had to learn how to do everything- walk, feed myself, talk, everything.” Today John works for Good Fellowship Ambulance, the people that saved his life.
John’s accident took him to “hell and back”. He is paralyzed on his left side and has short term memory issues. He jokes a lot but it’s clear that his accident left an emotional wound beyond the physical injuries- a wound that is relived every September, the anniversary of the accident: “I don’t like it when people say they can’t do this or they can’t do that; I have one hand and one leg so I tell them- you CAN do it!… But there are some days I can’t move and I can’t get out of bed, and I’m always nervous about hurting my good arm and hand.”
John was very athletic as a child: “After the accident I was disappointed that I couldn’t play sports anymore… A few years ago, someone said I should try biking; they gave me Loretta’s contact info- I called and she said come on by… I’ve been doing this for years.”
What does this mean to John: “It’s awesome- it gives me the chance to be normal… If this wasn’t available I couldn’t ride a bike; because of this organization I can say: ‘I’m goin’ for a bike ride!’” (Perfect title for this photo essay.)
How does PCAS provide support at the ride: “My weaker leg turns inward and could slip off the pedal so they use a bungee-cord to help keep my foot in place- that way I’m able to pedal with my legs, Thank God!”
John makes a hairpin turn in his ‘mean yellow machine’: “Every time I ride I go farther and faster”. (Actually he’s been trying to do a wheelie!)
Beth Davis (46) was at Disney World fifteen years ago when she experienced a severe headache. It was the symptom of a stroke which left her with aphasia, an impairment of language, and paralysis of the right side of her body. As difficult as this sounds, she says with determination: “But it’s OK- I drive and can get out into the world!” The smile on her face never seems to go away.
Before the stroke Beth was an elementary school teacher. While she can’t work anymore, she continues to volunteer.
Any mention of athletics gets a huge response from Beth: “I LOVE soccer- I played in college and coached; I also love rowing (she won a gold medal in a regatta), swimming, skiing and cycling.”
Five years ago she was introduced to Loretta and started cycling with PCAS right away.
What does this mean to Beth: “Oh My Gosh- fantastic!… It means a lot to me; I appreciate it… It gets me out to meet people- I cannot explain how important this is to me!… If this wasn’t available- no way, it can’t happen!”
How does PCAS provide support at the ride: Beth has her own custom made bike, but she needs help to use it. PCAS volunteers take the bike out of her car, make sure it’s ready such as checking tire pressures, and help her onto the bike: “I can’t do this on my own".
Beth beams after a great ride on a picture perfect day. (Beth rides so fast she’ll probably get a speeding ticket one day.)
Larry Way (69) just missed out on the polio vaccine- he was diagnosed at 4 years old. He spent a year in the hospital, including time in an iron lung. He slowly progressed and eventually was able to walk without the need for any support equipment, though his right leg is paralyzed. He went to school and became a CPA.
As time when on he developed PPS (Post Polio Syndrome) which attacks the nerve/muscle connections that were not destroyed by the polio: “I’m back to using crutches and someday I’ll be in a wheelchair.”
Larry was always a strong swimmer: “I swam the Chesapeake Bay from the Annapolis Side to the Eastern Shore to raise money for Muscular Dystrophy.” Larry sees athletics as a way to put off being in a wheelchair for as long as possible.
A friend in Larry’s community is an able bodied cyclist. Last year he was in Exton Park on a Sunday and saw PCAS’s red van and all the special bikes: “He knew I wanted to do some sort of cycling; he took photos of the logo on the van and some of these ‘trikes’ and sent them to me… The next Sunday I was out here and have been doing it ever since- before this I’d never been on a bike in my whole life.”
What does this mean to Larry: “It means everything to me- it means coming out here on a Sunday afternoon whether it’s sunny and bright or rainy and dismal, getting on a bike and feeling fresh air on my face… I’m able to power under my own strength- I forget about my disability… What does it mean to me- it means freedom!… If this wasn’t available I’d miss it- I’d try to find it somewhere else.”
How does PCAS provide support at the ride: “It happens in many ways; #1 is getting on the bike- as you can see, these bikes are very low so I need help getting onto it; I need help getting off as well… The volunteers remind us to drink water to keep hydrated… I love this group of people- some do it based on volunteering from their churches, some do it just to do good.”
Larry zooms by on his hand cycle as if he’s training for a marathon. (Maybe he is!)
Bob Marron (67) has had a lot of bad luck when it comes to health. In 1978 he suffered a cerebral hemorrhage while watching a game at Vet Stadium. After coming out of a coma he had to learn to walk again. His ability to walk was short lived- in 1995 he developed MS. Then two years ago he had a car accident which ruined one of his knees. In spite of it all, he remains positive.
Bob learned about PCAS from his neighbor Chris Robinson who is a volunteer. Bob started riding in August of 2017.
What does this mean to Bob: “I think it’s great- it’s helpful for people who need to get out to exercise… At home I have a stationary bike but this gets me out of the house; I’ll be back next year… If this wasn’t available I’d be stuck in the house.”
How does PCAS provide support at the ride: Bob is very lacking in strength. Volunteers spend considerable time getting him ready to ride.
Today’s ride was an achievement for Bob: “This was the first day I really got out on the bike- normally I can only get to the first stop and have to come back because I get tired, but today the weather was perfect and I felt great.”
Randy Armistead (55) was a Delaware State Trooper. In 1987 when responding to a high speed motor vehicle accident, he was forced to chase a suspect going the wrong way on I-95. Randy was hit head on.
“After a three month coma, I went to Bryn Mawr Rehab Hospital for a long recovery- I had to start from ground zero; the average person doesn’t give walking a second thought, but there is so much coordination required that most people take for granted… I had to re-learn everything- but it’s up to the Lord!”
Thirty years later, Randy continues to suffer from significant speech and mobility impairments. But like so many of the other cyclists, he has a totally positive outlook.
Randy was always athletic. With a chuckle he said: “Back in my ‘heyday’ I played soccer, baseball, and I wrestled.”
He found out about PCAS from physical therapists who were knowledgeable about this organization: “They told me how easy it would be to get hooked up for cycling and I’ve been riding for three-four years.”
What does mean to Randy: “It’s a way to get physical interaction… If this wasn’t available I’d have to find other ways to keep myself physically active.
How does PCAS provide support at the ride: “The staff works to help you overcome your physical deficits- they form-fit to your needs… At the ride it’s a partnership with the volunteers- I ride on a tandem with a volunteer.”
Randy heads out on a rainy day with volunteer Chris Robinson at the helm. The ride was somewhat eventful: their chain fell off and they hit a squirrel. (Randy and Chris were fine, but we’re not so sure about the squirrel!)
Cyclists and volunteers offer a big “THANKS” to all the people, organizations, and sponsors who support the Pennsylvania Center for Adapted Sports: “We couldn’t do it without you… Woo-Hoo!”
Final Thoughts
After doing stories about illness and disabilities, I started to realize that there is more than meets the eye when seeing a person in a wheelchair. How does that impact their daily life? I started to appreciate the hardships they must face.
Having spent time with PCAS and these amazing cyclists, I now have an additional appreciation about how, with a little help, people with disabilities can live life to the fullest. I only saw happiness on those Sundays from 1:00-3:00.
Loretta Cohen: “Another volunteer once said: ‘I’ve never seen a place where I see so much good’- and that’s kind of it for me… I love that this organization is about people who share a mutual love of a sport, as opposed to being about healthy volunteers helping supposedly less fortunate people- it’s not like that; it feels like everyone is on the same playing field- we all just want to go out for a bike ride and have a great time together… This is much more like real life than a program.”
It’s not clear whether this program attracts people who already have positive outlooks, or whether it’s the program that instills the positive outlooks. Loretta: “I think it’s both… Either way, let’s go ride!”
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I don’t have physical disabilities, but after watching the cyclists and the fun they have, I really want to try one of those bikes- it looks like a blast!
End
Published October 23, 2017