Hoping to walk for MS
AL ZAGOFSKY/SPECIAL TO THE TIMES NEWS Cindy Jones places "sneakers" inside the window of her home. The MS Society provides them, and on the sneakers, Jones has written the names of friends that she met online through her MS support group.
A Slatington woman who has gone from walking unassisted to walking with a cane to relying on a walker to using a wheelchair and back again several times wants to explain her curious situation.
Currently, 41-year-old homemaker Cindy Jones is able to walk unassisted, at least for short distances. She can even walk beside her Husky pup, Cheyenne.
But at four months old, the frisky pup is already starting to out-pace and out-pull Jones, who is hoping to participate in the MS Society's Walk on Sunday, May 5, at the Iron Pig's Coca-Cola Park in Allentown.
"I'm planning to walk this year," Jones said. "I have done the walk every year since I was in high school, before I even knew that I had MS."
Although officially diagnosed with multiple sclerosis at the age of 28, she began noticing symptoms when she was 12 or 13 years old.
"I remember complaining of pain in my legs. I told my mom and grandmother that my legs hurt. My doctor said it was 'growing pains'. I still get those pains-only today they are a lot worse," she said. "Before I was diagnosed, when I was 17 or 18 years old and having symptoms, I would get very fatigued after taking a hot bath and I wouldn't have the energy to try to get dressed, but I never thought anything of it."
Heat continues to be a trigger for Jones' MS symptoms, and that is typical for many people with MS.
"Warmer weather is a problem," she explained. "I stay inside and run the air conditioner. We have a pool, and I go into it to keep out of the heat and to exercise. I've had occasions when I was unable to walk, but I was able to slide into the pool, and family members would help me get out."
In 1999, the Northern Lehigh graduate was readying to go to her medical packaging job at B. Braun Medical in the Lehigh Valley. She worked the night shift, and when she awoke to go to work, "my arms felt sluggish, spaghetti like. My legs felt the same way. I told my husband I wasn't feeling right."
Jones opted to go to work, but as the night went on, she began dropping things.
"Nothing was going right. I lost all my coordination," she said.
The company nurse was called and thought Jones may have had a stroke.
"I was weak in my left arm and right leg. This was not typical of a stroke-which would affect my arm and leg on the same side," she said.
She didn't want to drive home in the dark, so she waited for morning, went home and then decided to go to the emergency room at Palmerton Hospital.
That was on a Friday morning. They thought Jones might have a pulled muscle.
"By Sunday, the weakness consumed both sides of my body. I was unable to hold a glass of water. My husband took me to the emergency room at Lehigh Valley Hospital," she said. "The ER wanted an immediate MRI. I had to contact my family doctor to get a referral for an MRI. He suspected MS. but wouldn't make a diagnosis until the test was run."
Jones was referred to a neurologist, admitted to Lehigh Valley Hospital, and given a battery of tests.
"I was there for about a week on an IV methylprednisolone steroid drip," she said.
Then, she was sent to Good Shepherd for rehabilitation, where she was fitted with leg braces, a cane, a walker, a wheelchair and an assortment of aids including "oversized silverware, which I was still unable to hold."
After being weaned off the methylprednisolone, she returned home, only to be faced with a two story home, with the bathroom and bedroom upstairs, and unable to climb stairs.
Six years later, she lost the vision in her right eye, and her left eye became blurry.
"I was sitting in my living room when all of a sudden it got dark," she said. "I called my husband, and then the neurologists. They sent me to an eye doctor who said I had optic neuritis. Again, I was put on a regime of steroids. It helped my left eye but my right eye never improved."
Despite all she has gone through, Jones looks perfectly fine and that's what the story is all about. MS is an unpredictable disease, unbelievably weakness one day, relatively normally functioning the next.
Jones wants people to understand MS.
"I would like people to avoid judging people when they see them one day walk with a cane, the next day they're in a wheelchair, and perhaps a week later, they seem fine. MS is very unpredictable and you don't know from day-to-day how you going to feel."