Patricia Crebase Might Bear The Burden, But She’s Far From Facing The Challenge Alone - National Multiple Sclerosis Society

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The Connecticut Chapter strives to provide knowledge and assistance to help people with MS and their families maintain the highest possible quality of life. These goals are achieved through vital national and local programs.

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Patricia Crebase Might Bear The Burden, But She’s Far From Facing The Challenge Alone

August 5, 2014

MARLBOROUGH, Conn. – For most, cycling is an individual sport, but for the Crebase family Bike MS is a true family affair.

Many years ago, Joyce and Philip Crebase settled in Wallingford, anticipating a quiet life in a peaceful town. In 1967, the couple was blessed with a daughter, Cheryl, and then along came Karen. Twins Patricia and Pamela were welcomed into the world in 1971, bringing the Crebase family count to an even six. As parents of four girls, Joyce and Philip knew they had their hands full, but the family could not foresee the challenges that lay ahead.

Growing up with supportive siblings was ideal for the girls, always having a sibling to play with or someone to turn to. Eventually, one by one, they left for college. Cheryl studied at Gettysburg College, in Pa., before moving to Chicago. Karen headed north, landing at Maine’s Colby College before settling down as an Assistant Superintendent for the Nashua School District, in New Hampshire. The twins took separate paths, Patricia traveling to Lancaster to study at Franklin and Marshall and Pam following Karen’s trail to Colby before returning home to Connecticut as a schoolteacher.

For years, the girls welcomed any excuse to travel home for the holidays. Then in 1997 they were heart-broken to learn that they might need to start coming home for something other than family vacations.

“Looking back, I think the first time multiple sclerosis showed itself to me was while I was on vacation with my family, and a friend showed up as a surprise,” said Patricia Crebase, who was 25 years old at the time. “I jumped up quickly, and my knee gave out. It wasn’t until the lower left part of my face dropped that I decided to go to the doctor. Within eight months, I was officially diagnosed with MS.”

More than 6,000 Connecticut residents are affected by multiple sclerosis, a potentially debilitating disease affecting the central nervous system. The cause is unknown and there is currently no cure for MS. Symptoms can include, among other things, numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.

For Patricia, MS progressed quickly. Within five years she was unable to walk, was suffering from optic neuritis and battling terrible fatigue. Despite monthly doses of heavy steroids, Patricia’s severe symptoms forced her to take five months off work before returning to Cigna as a senior project analyst.

Always a tight-knit group, the family responded with unstinting support. While Patricia would never allow anyone to feel bad for her, the sisters knew that they couldn’t sit by and do nothing.

“Ironically, I was already familiar with the National Multiple Sclerosis Society through participating in Walk MS with a friend,” remembered Pam, who now resides in Marlborough. “When we found out that multiple sclerosis was also what had been causing Patricia’s mysterious symptoms, we knew that the MS Society was where to turn for support.”

To get things in gear, in 1999 Pam and Karen established Team PAT, Pedaling Against The disease, and signed up for the National MS Society, Connecticut Chapter’s Fourth Annual MS Sights & Sounds Bike Tour. The two-day ride, which began and ended at Hammonasset State Park, was a perfect challenge for the athletic Pam and free-spirited Karen. On day one, the pair saddled up with other cyclists and followed a 55-mile route to a night of relaxation and fun at Sunrise Resort, in Moodus. The next day, the pair set out in the early morning for the 60-mile return trip.

“The bike tour was a great opportunity for Karen and me to show that we were engaged and determined to fight this with our sister,” said Pam. “The hard part was knowing that while we kept riding, Patricia was losing more and more mobility due to her MS. But instead of feeling defeated, we knew we had to keep pushing forward in search of a cure.”

In 2007, Karen convinced her mother, who had just retired from a teaching position with the Watertown school district, to get active in the fight, too.

“I knew it was going to be hard to get on a bike at my age, but my two girls really wanted me to join them,” said Joyce, who continues to pursue her love for teaching as a substitute teacher at a middle school in Wallingford. “Karen lent me one of her extra bikes so I could start practicing around the neighborhood, and believe me, it was tough. For the first leg of training, she even jogged beside me to keep me going. Then, she would call me all throughout the summer to check on me, making sure I had gone out for my daily training ride.”

In 2008 Team PAT welcomed its newest member and the trio of mother and daughters rode the first 25 miles together. The women worked hard, but most of all had a lot of fun and ultimately received the Best Team Spirit Award for the 2008 Bike MS ride.

“I hadn’t been training for very long before the race, so I rode 25 miles the first day before my husband picked me up and brought me to camp for the night,” said Joyce. “Then, in the morning, I rode 25 more.”

Over the years, various friends and family joined the cause. In 2003, Team PAT was 22 riders strong. Cheryl even flew home from Chicago to participate. When Patricia’s nieces and nephews were old enough to ride, they too donned the team jersey.

“The outpouring of support was unreal, even within our family unit,” said Pam, now a married mother of three. “My own son, Jonah, was so eager to help out that the first year he did a two-mile stretch with his training wheels.”

Since 2009, four members have consistently ridden on Team PAT: mother Joyce, sisters Pam and Karen, and cousin, Carter.

“Patricia has always been very independent and was optimistic when she received her diagnosis, despite some really tough exacerbations in the beginning,” said Karen, who plans on participating in Bike MS for many years to come. “While we all could look  at this diagnosis as a black cloud hanging over our heads, instead we followed her lead and chose to use it as a rallying point for getting the whole family behind one cause. Together, we know we can make a difference.”

In 2011, the chapter listened to suggestions from Bike MS participants and the two-day tour shifted gears, becoming a single-day ride featuring new courses.

“The new one-day ride through Hartford is great for people like us who are looking to have a great time while raising awareness and funds for MS,” said Pam, who is now Director of Alumni Relations for the University of Connecticut’s College of Agriculture and Natural Resources. “It also got easier once we invested in road bikes instead of pulling out our mountain bikes each year. There are, of course, still a few hills along the way but that’s nothing that can’t be conquered with a little determination.”

In 2012, Patricia took a train from her home in Center City Philadelphia, Pa., to Connecticut to ride with her family.

“I was on the phone with my nephew Jonah talking about the upcoming ride when he asked me, ‘Are you going to ride with us, Auntie Patricia?’” shared Patricia, who remembered the conversation fondly. “Who could ever say no to that?”

Despite initially experiencing some debilitating exacerbations, Patricia had regained a lot of functionality and was working out at the gym regularly. She used a hand cycle provided by Connecticut Adaptive Cycling to join the family on the two-mile course.

“Knowing that my twin sister is disabled due to her MS is very emotional for me but she’s a fighter, so I have to be too,” said Pam. “I am thankful that my children understand we’re not just riding when we sign up for Bike MS, we’re helping Auntie Patricia.”

Each year, leading up to the ride the family diligently raises funds for Team PAT, sending personal letters to friends and family announcing the upcoming ride.

“When my children write letters and see the responses that come back, they are learning that they too can make a difference and that little things can add up to affect change,” said Pam.

This year marks the 19th anniversary of the Bike MS: Cardio Express Ride. In its history, more than 2,000 cyclists have pedaled over 200,000 miles to raise more than $1 million to support local chapter programs and services as well as scientific research to find a cure for multiple sclerosis. This year, the National MS Society, Connecticut Chapter hopes to raise $120,000.

To date, Team PAT has participated in every Hartford-based ride since 1999 and has raised more than $100,000. From 1999 to 2007, Team PAT consistently ranked within the top ten fundraising teams. Even more rewarding than the growing collection of Bike MS medals and awards, however, is knowing that their contributions have already paid off.

“Patricia used to take disease-modifying injections every week that gave her flu-like symptoms,” remembered Joyce. “But now she is on a new oral medication, and she never mentions any side effects. While she was never one to talk about the negative, we all can see that this is a big improvement. Without funding from the National MS Society, I know the new medication could not have happened.”

This year, Team PAT is once again saddling up for the Bike MS: Cardio Express Ride, presented by Cashman + Katz. The ride will be held on Saturday, Sept. 13, beginning at the historic Boathouse at Riverside Park in Hartford. The city to country ride, which includes 75, 50 and 25 mile routes, will travel across three bridges, the Founders, Charter Oak and Arrigoni Bridges. While the terrain will include some challenging uphill climbs, overall the route is designed to be recreational, scenic and safe for all riders.

Finish line festivities will include a barbeque lunch, live band, local vendors offering product samples, free massage therapy and more.

“When I was first diagnosed, someone told me, ‘It may not be as good as you hope, but it probably won’t be as bad as you fear,’” said Patricia. “While my journey with MS has been a trying one, I have always been able to rely on my family for support and it really hasn’t been as bad as I once feared. I know we have made progress because of how much people, like my family, have done with the MS Society and all the advances it has made. And, I’m still stubbornly hopeful.”

Funds raised by the National Multiple Sclerosis Society, Connecticut Chapter, through events such as Bike MS ensure ongoing scientific research to find better treatments and a cure, as well as to provide vital programs and services offered by the chapter to those in the state living with multiple sclerosis.

For more information on the 2014 Bike MS: Cardio Express Ride, presented by Cashman + Katz, or to donate, visit www.ctfightsMS.org.

8/4/14

About the Connecticut Chapter of the National Multiple Sclerosis (MS) Society

The Connecticut Chapter strives to provide knowledge and assistance to help people with MS and their families maintain the highest possible quality of life. These goals are achieved through vital national and local programs.

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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