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BY JERMEL-LYNN QUILLOPO / Special to the Star-Advertiser
When I asked a handful of people in Chinatown if they knew what Multiple Sclerosis (MS) was, I discovered many heard of the disease but weren’t sure of its effects. This weekend’s Walk MS Field Day on Saturday at Aloha Stadium hopes to change all that.
MS is an immune disease that attacks the central nervous system, including the brain and spinal cord. Common symptoms are fatigue, blurred vision and loss of control in one’s limbs. The difficult thing about MS is that it does not discriminate and is unpredictable as far as when or how it will affect individual people.
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Edith and Perky Mattice. Perky has been living with MS since 1988. (Courtesy Jermel-Lynn Quillopo)
Honolulu resident Rosemary “Perky” Mattice was born and raised in upstate New York. She lived a very normal childhood, and as a single-mother she worked as a school bus driver supervisor and was very active, coaching several high school sports such as basketball, tennis, and bowling. During summers she was a supervisor at the local pool in Stamford, NY.
Frequent episodes of double vision pushed her to see a doctor, and in April 1988 she was diagnosed with MS. Just two years after her diagnosis, her symptoms interfered with her work and forced her to retire.
“My double vision, balance, and stress got the best of me,” she said. “I thought that my life was over.”
The disease not only affected her career, but her family as well. When she was diagnosed, her son was still in high school and the pair lived with her parents.
“I coached sports like high school tennis and basketball and I had to give it up,” she said. “I noticed my son being very protective over me because people would make fun of me since MS effected my coordination and reaction time, tiring me easily.”
Needing extra care, Mattice moved from New York to Arizona to live with her cousin. In 2000 and 2006, she experienced MS attacks, which are similar to a stroke and left her left side paralyzed. Now her sister, Edith, has taken on the role of primary caregiver. Mattice said her sister has been more than caregiver; she has been her best friend and made an extra effort to accommodate her.
“She has to put up with a lot,” Mattice said. “She bathes me, she makes sure that I have all of my mediation, she take me to the movies … she makes sure that I have everything.
“I often feel like she sacrifices her other relationships because she has to take care of me … she has really made me a part of her life.”
Mattice admitted it was hard to ask for help during the early stages. Now she gets around with a powered wheelchair, since she often can’t walk long distances. Still, extra-curricular activities, like volunteering at her church, help make her feel normal.
“Another thing that helps is being able to paint twice a week at the Rehab Hospital,” she said. “I get to paint turtles and landscapes. It helps me forget that I have MS.
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Jeff Root said it’s a struggle to live with MS, but fundraisers like the one being held this weekend help create resources and outlets for people living with the disease. (Courtesy Photo)
“One of the things that I fear about having MS is ending up in a nursing home. I don’t want to lose my independence.”
MS Society of Hawaii board member Jeff Root shares similar frustrations. Originally from Indiana, Root was stationed in Hawaii to be a part of the POW MIA recovery missions team. After feeling tingling in his limbs in 2002, he went to see a neurologist and was diagnosed with MS. Root continued his career as a solider till 2006.
“Before I was diagnosed, I could run two miles in about 12 minutes and now, I can’t even walk a mile,” he said.
Root’s family has been the foundation of his support system. His 19-year old daughter has been by his side since his diagnosis and is also a big advocate of educating people about MS.
“She is a student at Hawaii Pacific University and in school, she does a lot of her projects on MS and it’s medications,” Root said. “She originally wanted to be a lawyer, but because of her MS experiences she might want to change her career path because she loves working with people, possibly social work.”
Root said his MS prevents him from living a normal family life.
“I don’t get to do what regular couples get to do or what a father gets to do with their kids,” he said. “You have to plan things out and do what you can when you can because some days you are just too tired.
“With MS, you have map out your life because you don’t know where it may go. You have to able to think about the different roads that MS will take you on. … You have to think about the worst case scenario and best case scenario.”
Education is the key to advocacy, and both Root and Mattice hope people come out this weekend so Hawaii’s communities can meet people who live with MS while supporting a great cause.
“The MS Society makes you realize it’s not the end of the world and it’s not a death sentence when you are diagnosed with MS,” said Root. “With the research and money involved from fundraisers like this, there are new medicines that are being developed that improve the quality of life with people with MS.”
“Anyone can have it and you might not know it,” added Mattice. “It’s important for people to come out and support. The money we raise will help with progress (towards) making (the) world free of MS.”
Papa Johns, Menehune Water and Paradise Beverages will be there on Saturday with food and refreshments for participants; the family-friendly event will also feature music and fitness entertainment such as Zumba, mini golf and a balloon toss.
Funds raised will help provide programs and services for more than 800 families living in Hawaii.
The Walk MS Field Day will take place at Aloha Stadium; check-in and last minute registration starts at 4 p.m. and the walk starts at 5 p.m. For more information, visit the MS Society of Hawaii website.
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Jermel-Lynn Quillopo is a multi-faceted, energetic individual with experience in both print and broadcast journalism. “Social Encore” aims to tell diverse stories about Hawaii’s food, events and people; share your tips with Jermel via email or follow her on Twitter.