2014 BIKE MS: COAST THE COAST AMBASSADOR jessica bills
My story begins when I was only 14, back in my junior year of high school in 1999. My Dad wasn’t feeling right. He seemed to be always sleeping, having horrible headaches and he always said “Everything tastes like cardboard.” I really didn’t know what to think. My parents hid the severity of what really was happening. Diagnostic terms like stroke and brain tumor were mentioned but thankfully all ruled out. I remember him getting frustrated because he must have gone to every type of specialist you could possibly imagine. Finally after going to one neurologist who told him “ I don’t know what is wrong with you, but I am 99% sure you don’t have MS!” and this was after a MRI of the brain and spinal tap, he refused to go to any more doctors and was basically giving up.
My mom wouldn’t give up and she researched until she happened to come across with a neurologist that she was told was top in the state. She convinced my dad to try one last time. They brought all the test results, including the MRI. He reviewed everything, looked into my parent’s eyes and said, “You have multiple sclerosis, but I would like to do a spinal tap to confirm.” My parents explained how my dad had been poked and prodded by many specialists and even had a spinal tap done that was performed by another neurologist. It turned out the neurologist did not take out enough fluid so there were no results given. So in June 2000 my dad was officially diagnosed with Multiple Sclerosis. When my father finally told us kids, it was the first time I had ever even heard of the disease!
After a few months of treatment, my dad was back to working steadily. He seemed to be managing very well. Of course he’d have his good and bad days but life was okay! A couple years later my mom had been complaining that she had fatigue spells, and pins and needles in her arms and legs sometimes. We convinced her to go to the doctor who sent her on to see a neurologist, same one as my dad. He requested a MRI of her neck and spine and found 3 herniated discs in her neck and 1 in her back, so that made sense for the pins and needle feeling. She went to physical therapy but was feeling worse. During one of her follow up appointments with the neurologist, he asked how she was doing and then how her vision was. She explained her peripheral vision comes and goes sometimes but she assumed it was just stress and working too much. He sent her for a MRI of the brain and to an Ophthalmologist that specialized with the brain. When the MRI came back, sure enough she had demyelinating spots on the brain and the eye doctor found nothing wrong with her eyes. So the next step was a Spinal Tap. The neurologist assured her and my dad that my family had a better chance of winning the lottery than BOTH my parents having MS. Well as you may have figured out, we haven’t won the lottery, and in October of 2002, my mother was officially diagnosed with MS. My parent’s neurologist dubbed them “The One in a Million Patients”!
After my mom’s diagnosis, she went through many different drugs with no positive results. She was slowly having more and more trouble, which she would try to hide it from us. Every year she would be forced to take a month off of work to try and to get back on track. In February 2011, my mom was the worst we ever saw! She was forced to go out on disability. She was having a hard time making complete sentences, always exhausted, and had SEVERE heat intolerance. We literally had to play charades to understand what she was trying to say. She had started to give up on talking, which anyone who knew my mom before her diagnosis would know how much she loved to talk to everyone! She believed her MS was taking over and this was it.
In June 2011 she requested some blood work that revealed severe anemia. It took 3 ½ weeks to get an appointment with the hematologist and in that time her blood count dropped from an 8.6 to a 6.8! She was admitted to the hospital and required a blood transfusion for a total of 2 pints of blood. The day after the blood transfusions, my mom was like a whole new person. She could talk again, not like before her diagnosis, but well enough that we didn’t have to play charades as much as we had to. It truly felt that I had my mom back. Unfortunately most of her cognitive issues were still present but dulled so she was never able to return to work, however she tries to keep herself busy.
After everything we had been through, I knew I had to do something. I wanted something that would be challenging that I could be proud of when I crossed the finish line. That is when we found Bike MS, there had lots of rides, all raising money to help find a cure and treatments for MS.
Team JanKel’s Angels was born! In September 2011 we rode our first ever Bike MS Ride! We did the 20-mile option on our mountain bikes and we made it as best we could (except for the BIG hill) all the way across the finish line. I had tears in my eyes from all the support we had waiting for us! Not only were my parents, family members, and friends there, but the National MS Society had a crew of welcoming faces, ringing cowbells and cheering for us! It was truly a moment I will never forget. That year we won Rookie of the Year and Best Dressed team! We were so excited to be recognized for what we are so passionate about. We are a small team and didn’t bring in as much money as most of the other teams but we were able to raise over $4,000! That night we agreed we were going to ride next year. It felt like we belonged. Something I will never forget. Since then we have increased our miles continuing to ride the Country ride but also did 85 miles in the Coast the Coast ride this year.
Team Jankel’s Angels is now in the 4th year with Bike MS and we have raised a total of over $10,000! Despite all the hardships we have been thrown, my family has always been there to support each other through the good, the bad, and the ugly! I think this is what sets us apart from other families. Nothing has ever been handed to us and we have been made stronger for this. Our strength is our identity, not this disease!
Being asked to be ambassador for this upcoming Country Challenge is something I never thought I would ever be asked to do! I am so thankful to have the opportunity to not only share my family’s struggles, but to share how we continue to overcome anything that is thrown at us! Hopefully I can inspire everyone to help in this fight against Multiple Sclerosis.
2014 bike ms: coast the coast ambassador candace prZygoda
Candace Przygoda is a long time fundraiser for the New Jersey Metro Chapter. She became involved with the chapter and MS fundraising events because of her mother, Barbara Przygoda , who was living with multiple sclerosis. Barbara was diagnosed in the early 90's with multiple sclerosis and she and Candace started participating in Walk MS. Walk MS was a great way to support her mom and help all those living with the disease.
As the years passed Candace and her mother continued to participate in Walk MS. In 2006 Candace began to experience numbness in her face. The numbness seemed to progress, spreading to her hands and upper body. Knowing what she did about MS she went directly to a doctor and was quickly diagnosed with multiple sclerosis. After that diagnosis Candace made the decision to ride in the Bike MS: Coast the Coast and make that her annual event.
Candace formed Team Bugga's Bikers and the rest is history. Riding with family and friends down the coast since 2009, Candace and team raise well over $1000 each year for Bike MS! This year Candace will be the Bike MS: Coast the Coast Ambassador. "The National MS Metro Chapter does so much to help those living with MS and their families, that when you're given the opportunity to give back, it's and honor and privilege to be the 2014 Bike MS Ambassador", says Candace. "The MS Society is more than just a pretty face, it provides programs, assistance and support to those in need. I want to make sure people know what's available and who to reach out to when they need help or have questions."