Monday, April 12, 2004
The Quincy Herald-Whig
Kathryn Mangold Morris worries about the future.
The 45-year-old Quincy woman's life has been turned upside down since she found out almost two years ago that she has a relapsing form of multiple sclerosis, or MS.
"I don't know what my life's going to be," she said. "It's scary."
MS is one of the most common diseases of the central nervous system, with symptoms ranging from numbness in the limbs to paralysis or vision loss. It generally is diagnosed between the ages of 20 and 50.
There is no cure.
Morris endures occasional pain, particularly from her neck to her waistline, and sometimes has trouble with her speech. Her right leg gives out without warning, and she fears her staggering makes it look like she's a drunk.
The once-active woman, who spent more than nine years as a certified nurse assistant, hasn't been able to keep a job because of the disabling condition. She feels confined to her home and is forced to rely on her 83-year-old mother, her son, boyfriend and others for support.
"You lose your pride," she said.
Morris says her only hope is that researchers find new and better ways to treat the disease.
"I'm hoping for a treatment that's going to work, that will allow me to go back to work or to college," she said. "I just wish they could find better treatments."
The National Multiple Sclerosis Society recently committed $12.4 million to support 23 new research projects with terms running up to five years. The projects, which began April 1, are part of a larger research program slated to invest more than $30 million this year alone to advance MS research.
By the end of this year, the society will have invested a total of $420 million since its founding in 1946 to support research aimed at finding a cure for MS, as well as better ways to manage the disease.
Among the most intriguing research under way involves remyelination, or repairing of the fatty tissue called myelin that insulates the nerve fibers in the central nervous system. Destruction of myelin is the primary cause of MS symptoms, including impaired mobility and fatigue.
If researchers find ways to repair the myelin, it may result in a return of function for many people with MS.
Other research is focusing on rehabilitation, genetics, immunology and potential infectious triggers.
For now, Morris is relying on her current treatment, including daily medications and injections of Copaxone, a synthetic protein that helps reduce the frequency of relapses, or flare-ups.
She typically gets an IV drip of corticosteroids during flare-ups to shorten the duration and intensity of symptoms.
"That gives me more strength," she said.
The first sign that Morris had MS was in June 2002, when she lost vision in her left eye. A month later, she saw a neurologist. She had six MRI (magnetic resonance imaging) scans of her brain, and an examination known as a lumbar puncture, in which a long hollow needle is inserted into the spinal column to take a sample of the fluid surrounding the brain and spinal cord.
She didn't want to believe it. But she had MS.
In the almost two years since the diagnosis, Morris has had multiple flare-ups, some requiring hospitalization, and various symptoms. She regained sight in her left eye, but has blurred vision occasionally. She has difficulty with balance and coordination, and from time to time has a shooting, burning sensation in her back.
She can't do things she used to love like bowling, dancing, fishing and camping.
But one of the most troubling symptoms, Morris says, involves problems with memory and speed of thinking. She has difficulty concentrating, and her speech sometimes is affected.
"I don't get my words out," she said. "My thoughts are running faster than I can speak, and that gets frustrating."
Morris also struggles with depression, which is compounded by her inability to work and financial frustrations. She applied for Supplemental Security Income in August 2002, but says she wasn't approved until a few weeks ago.
She's attempted to work at a couple jobs, but her condition makes it nearly impossible, at least for now.
Support group meetings and church help her cope, and so do her family and friends.
"Without friends, I don't know what I'd do," she said.
Morris would like her life to go back to what it was before she was diagnosed with MS, but she knows that's not realistic. So she lives day to day, embraces small victories and holds out hope for a better future.
"My brother has a Harley and I want to go on a ride on his Harley," she says. "I want to go to a beach and walk in the sand. And my son. He's 26, and I want to spend time with him."
Morris manages to smile through her pain, and attests, "I'm not going
to let it get ahold of me."
Copyright © 2004, The Quincy Herald-Whig