October 03, 2002
By Kelly Fagan
Imagine you wake in the morning, stand up out of bed, take two steps and then fall, face- first to the floor. You can't seem to stand up because your body won't let you, and so lie there, terrified you can't move.
Welcome to Marie Perna's world.
Perna grew up in Middletown, NY, where her and her husband, Don, went to high school together. They have lived in New Jersey, Long Island, and East Greenwich, RI from 1985 until 1994. Perna had medical symptoms throughout her life that finally led to her being diagnosed as having Multiple Sclerosis (MS) in 1998.
"It is a difficult disease to diagnose," said Perna. She had numbness in her fingers and toes; stiffness in her legs and hips; pain - always the pain; and also had difficulty walking. Fatigue was also a constant throughout her life.
Doctors told her it was arthritis and pinched nerves. Perna endured numerous tests, medications, and physical therapy. Every time she left a doctor's office it was the same result, more questions and less answers. While Perna resided in East Greenwich several years ago, she was posed with more medical questions than ever before in her life.
"I kept trying to get better," said Perna. Perna would religiously walk three miles a day while she lived in East Greenwich. It came to the point where Perna couldn't walk more than half a mile a day. Eventually her body started to slow down. On one of her walks she couldn't help her left leg from dragging. Something that she could once do with ease, became a painful task.
Between the years 1994 to 1998, Perna saw five different Neurologists. Neurologists can find lesions in the brain that indicate infringement on the nerves, lesions that may be caused by MS.
"Between 1985 and 1998, I don't remember a day when I was not in discomfort," Perna said during a recent interview. She thought she was suffering from arthritis.
In 1998, Perna was in a hospital having a spinal tap done. Don had come into the room with a brochure on MS, and shortly thereafter was diagnosed with the disease.
Perna was relieved to find that she had MS. Finally she had an answer to her all medical questions, now she could educate herself with the disease and arm herself with it.
"MS is such a misunderstood disease," said Perna. MS is nerve damage. Our nerves act like conduction wires. If the outer coat of a conduction wire is worn away, electricity won't flow through. The nerves then don't send messages to the brain, letting it know to open right hand or pick up coffee cup. MS is also an Autoimmune Disease, where white blood cells work against the body.
MS treats every person differently. Some people may lose their eyesight, some people may have a complete paralysis of their body and some may look like they don't have a disability. Perna walks with a cane because from her hips down she has trouble with feeling and control of her muscles.
"You have to compromise, make adjustments," said Perna. When Perna first learned of her MS, she educated herself on the disease. She went to the library, read books and searched the Internet.
Luckily, Perna has always been a physically active person. Lifting weights, stretching and muscle movement helps to keep muscles working in those that are struck with MS. Ironically Perna's profession was in physical education.
"Life can be full and complete, if you want it to be. Life is prime," said Perna. MS is a disease that has been around for years and a new disease in terms of treatment. MS has dated back to the 1880's. MS didn't have a specific name back then, it was know as an unknown disease. Today there are four different injectable treatments offered to those with MS. These shots help to slow down the progression of MS in those who hope a cure is found.
"It has never stopped me. I am able to play golf...there not the scores I would like to have," said Perna. Perna is an advocate for living life in a positive way.
Dare to Dream, is the name of Perna's book that has recently been published and the name of her support group. Perna had worked with the MS Society in Long Island, where the president of the society encouraged her to write. Perna's one brother also gave her positive influences to write the story of her life. Perna decision was to get the message out that MS is just a disease.
"It was a way to get out thoughts and questions," said Perna. It is a story of what it is like to live with MS. Throughout the book Perna is looking at life on the brighter side. She hopes the book brings answers to those who know someone with MS understand what it feels like. She also hopes it inspires and encourages those with MS who don't have a friend to help them with everyday living. To bring hope to those who face medical uncertanity in their lives.
"Some days you win at the card game, sometimes it's a little rougher," said Perna. Perna feels for those who are afraid to accept their limitations in life.
Perna's new project is to head a state wide assebility brochure for those with mobility challenges in RI. There are 155,000 handicapped people in RI, according to Perna. The brochure is sposored by the MS Society and other organizations will contribute information.
The brochure will advertise restaurants and public places that are truly
handicap accessible. Perna feels the brochure will make it easier for those
with disabilities to leave their home.
© The Pendulum 2002