Diagnosis was a long, winding road; Woman's daughter organizes team for MS fundraising walk.
OXFORD - Debra B. (St. Martin) Lamarche was a 47-year-old, happily married mother of four on June 3, 2003, when her nightmare began.
"I went to bed fine, then woke up in the morning and I couldn't move my right leg. Both legs were numb. My right foot was purple and swollen," said Mrs. Lamarche, of 74 Old Webster Road.
Her husband, Dennis E. Lamarche, had already left for work, but their two youngest children, Kimberlee and Heather, had not left for school and immediately came to help.
Thinking she might have a pinched nerve, Mrs. Lamarche visited her chiropractor, then over the next three years, saw multiple doctors. She was referred to podiatrists, gastroenterologists, neurologists and family medicine doctors. She was diagnosed with cardiovascular disease, degenerative disc disease, fibromyalgia, flat feet, Crohn's disease, chondromalacia, spinal stenosis, celiac disease and other problems.
An MRI of her brain showed "demyelination," a loss of myelin, the fatty tissue that surrounds nerve fibers the way plastic coats wires. Loss of or disorders in myelin can result in scarring around nerves and can affect the way the brain communicates with nerves throughout the body. Multiple sclerosis, which means "many scars," can be evidenced in an MRI as many white patches on the brain, but so can other diseases. She still had no firm diagnosis.
"I told them all the same thing. I have a hard time walking and driving. I trip and fall all the time. My back hurts and my feet feel 10 times their normal size. It's hard to put my foot in shoes. I cannot put my right foot in water: It's like a shock, and my foot and leg shake. I cannot sit down, or my legs give out, and I can't stand up. I can't climb stairs. If I try to carry anything at all, I tip over. All the doctors agreed that something was wrong, but they weren't sure what," Mrs. Lamarche said.
Finally, in September 2006, she saw UMass Memorial Medical Center neurologist Dr. Nancy M. Fontneau. "She told me, `I think I can help you,' and she did. She diagnosed me with multiple sclerosis. I cried with relief. I wasn't crazy. She validated me."
Mrs. Lamarche has medications that help with some symptoms, such as muscle spasms, but her foot is still purple much of the time. She must use a cane to help her walk, and sometimes her hand unexpectedly grips into a claw, making it difficult to hold a pen or write. She wears a brace on her right leg, and often weaves and leans on walls and furniture to keep from falling.
"It's very hard. The worst part is when people think you're drunk. You wish people would be less judgmental. If I use my `handicapped' placard to park, people see me climb out, looking strong and healthy, and glare at me. MS doesn't always show," Mrs. Lamarche said.
Her friend Patricia A. (Puduski) Hale, 40, of 6 Country Lane, director of quality services at the Center of Hope in Southbridge, knows how Mrs. Lamarche feels. Mrs. Hale also has "relapsing/remitting multiple sclerosis."
Her symptoms crept up with much more stealth at a far younger age.
"I was 24 when I got blurry vision in my right eye. I went to an eye doctor, who told me it could be multiple sclerosis. I was devastated. I just cried," she said.
She also had some numbness and tingling in her extremities, but nothing serious. Two years later, in 1995, she was having trouble with coordination and balance. An MRI found multiple "UBOs," unidentified bright objects, or spots, on her brain.
"I never went through what Deb did," Mrs. Hale said. Instead, she was diagnosed correctly and quickly. She walks with no cane or assistance most of the time, though she does use a wheelchair while visiting Walt Disney World or other venues that require a lot of walking. She takes Avonex twice a week to control symptoms, and uses steroid treatments as needed for flare-ups.
"The Avonex causes flu-like symptoms, aches, chills and fever, but I take it," Mrs. Hale said.
Mrs. Lamarche said that the drugs don't cure the disease, but limit its "exacerbation."
"If I had been treated years earlier, I could have stopped or limited the progression. Doctors have to believe you when you tell them your symptoms," she said.
Mrs. Hale is a brave woman, who recently attended a wedding and danced for joy at the reception.
"My husband practically had to carry me out afterward. I know some people thought I was drunk. I told the bride it was OK to tell everyone I had MS," she said.
Mrs. Lamarche's daughter, Lisa M. Lamarche, owner of Starz Dance Centre of 4 Jackson Court, wants to help educate people and support research for a cure. She is sponsoring a Starz Dancers team of walkers in the MS Walk in Worcester on April 4.
Proceeds will benefit the National Multiple Sclerosis Society and be used for research, programs and education. Anyone interested in sponsoring the team can call Mrs. Lamarche at (508) 987-5275 or e-mail email@example.com.
"We have a goal of $550," Mrs. Lamarche said. "We already have $400 and a team of eight walkers. We appreciate any support."
She quoted a handout from the Multiple Sclerosis Society: "We are your parents, your children, your brothers and sisters. We are that lady or fellow who may walk a little funny at the grocery store. We are the people that you `tsk, tsk' over because we might look too good to use a handicapped parking space. We are the face of multiple sclerosis. We are the very best-looking people in the handicapped community. We want to live, and we want to end it all. We look for support, and we want to stand alone. We are people, just like you."
Anyone interested in joining a multiple sclerosis support group may call (508) 987-0997 evenings.
The MS Walk will be held at Green Hill Park in Worcester on April 4. For more information, visit htpp://walkmem.nationalmssociety.org.
PHOTOG: ELLIE OLSEON
CUTLINE: (1) It took several years for Debra B. Lamarche to be diagnosed with multiple sclerosis. (2) She is seen in top photo with fellow MS sufferer Patricia A. Hale, whose diagnosis came much more quickly. (3) Debra B. Lamarche and Patricia A. Hale have multiple sclerosis.