Multiple sclerosis patients cope with unpredictable disease
BY DONYA CURRIE
Amy Talmadge first noticed some leg weakness and dizziness. Berna Shetti was suddenly having trouble with balance. Robin Wood had numbness in her feet she first attributed to a pinched nerve.
For all three Fredericksburg-area women, those were signs of multiple sclerosis, a condition that affects up to 400,000 Americans.
The disease is so varied in intensity and severity, a saying in the medical community is: If you’ve seen one case of MS, you’ve seen one case of MS.
“Sometimes the disease progresses so fast and you have to throw everything at it. In others, you wonder, do you even need to treat it,” said Dr. Amandeep Sangha, a local neurologist who treats patients with MS. “Just following things as they go along and taking things as they come is the key here.”
MS is caused by damage to a person’s nerve fibers, brain, spinal cord and myelin—the layer of insulation around our nerves—but scientists aren’t clear on how that damage occurs.
The disease can cluster in families or strike randomly. The condition is most commonly diagnosed in women in their 20s and 30s.
For someone living with the disease, “every day is a new day,” said Talmadge, 44, a part-time teacher and Spotsylvania County mother of two. She has more fatigue as the years pass and takes medication to keep progression to a minimum.
“You never know with MS how it’s going to affect you. I guess life is an adventure,” Talmadge said.
She said she can’t spend time worrying about MS “because I have now a 15-year-old and a 12-year-old and spend a lot of time following them around and transporting them. You know, mom’s taxi. I’m not ready to give in to this.”
COPING WITH SYMPTOMS
Like Talmadge, Shetti leads an active life despite the challenges of MS.
Shetti, of Spotsylvania County, was diagnosed eight years ago and said she can feel the disease progressing. She copes with symptoms day by day. Her car has hand controls and a ramp allowing her to drive her wheelchair into the car and sit behind the wheel.
“And sometimes I don’t even realize I’m in a wheelchair because I’m too busy with other things,” said the mother of two, who also shares her home with a menagerie of pets including a dog, a hamster, a turtle and 10 ducks.
“I live my life and, you know, I’m fine,” Shetti said. “The only thing I asked the doctor when he diagnosed me was if it was fatal or not, and he said no. So I said, ‘I’m good.’”
Wood, of Fredericksburg, uses humor to help cope with the disease, which for her means she has good and bad days; walks with the help of a cane; and sometimes struggles with short-term memory problems.
“I make fun of this thing and just suck it up,” she said. “I know of things that could be much worse.”
‘MUCH, MUCH BETTER’
The prognosis for people diagnosed with MS is far better than just a few decades ago, when medical science could offer few treatments and the typical patient would become disabled and then die prematurely.
“Now, the longevity and the disability progression related to the disease is much, much better,” said Sangha, the neurologist.
Current treatments include infusions, like the drug Tysabri that Wood receives monthly via IV at Mary Washington Hospital’s infusion clinic. Other options include injections, and, most recently, pills to suppress disease relapse.
Doctors recommend people with MS be treated by a care team including a neurologist, a neuropsychologist, perhaps a urologist and also a physical therapist and mental health counselor. Such a “multi-specialty approach” is important because MS is such a diverse disease, Sangha said.
Some patients find relief from exercise. Local certified personal trainer Sue Dzurenda works with many clients with MS. She says there is no typical workout.
“Every day is different,” she said. “Some days we can do overhead throwing, some days we can do great shoulder work. Sometimes their shoulders are so locked up that they can hardly move their arms.”
She works toward providing a “sense of normalcy”—perhaps stabilizing legs that are numb or helping loosen a tight hip joint. The goal is to help her clients maintain as much function as possible, and to elevate their heart rates for cardiovascular fitness.
The weekly exercise sessions help Wood keep her sense of humor, she said. Unlike Shetti and Talmadge, Wood cannot drive because of leg weakness and instability, so she relies on a caregiver to take her to appointments and errands.
“I get angry. I think MS is annoying,” said Wood, 58, who was first diagnosed about 10 years ago.
She said she notices symptoms most when she lies down at night, feeling a tingling in her feet that’s like electric shocks or a sunburn that never completely goes away.
‘I AM SO THANKFUL’
When she was first diagnosed, Talmadge received a magazine from the MS Society and found it full of advertisements for wheelchairs, canes and assistive devices. She “threw it across the room.”
Her children were 6 and 3. She didn’t want to fear the worst.
Her doctors have taken an aggressive approach with her MS and given her medications to slow progression.
“I am so thankful to God and to my medical team that I do live in 2013” with new treatment options, she said. “It’s not a cure, but 20 years ago these didn’t exist at all. Who knows what’s coming 20 years from now?”
SIDEBAR: AWARENESS OF MS IS IMPORTANT
Multiple sclerosis awareness is important both for helping patients get early treatment and for promoting compassion for those with the condition.
“There are people who will never, ever say they have MS because it’s an incurable disease,” said Sherri Ellis, president of the MS Society of Central Virginia. “They will never tell their place of work because they don’t want to have any issues or repercussions at work.”
Ellis said about 2,500 people in Central Virginia live with the disease. They’re helped by the society’s fundraisers, which support services such as home modifications, respite for caregivers and even a camp for children of parents with MS.
The society also funds research; a grant is helping with Dr. Babette Fuss’ lab at Virginia Commonwealth University, where the puzzle of repairing nerves could be one path to MS treatment and even a cure.
Meanwhile, local neurologists treating Fredericksburg-area patients say, as with many health conditions, early diagnosis and treatment are important, especially at a time when treatment options are continuously emerging.
Yet many people will have mild MS symptoms for years without being checked by a doctor, said Dr. Amandeep Sangha, a neurologist with Mary Washington Healthcare’s Rappahannock Neurology Specialists. His practice sees a few hundred Fredericksburg-area MS patients.
Early signs of MS that could also point to other neurological problems in need of care include blurry vision, slurred speech, balance problems and weakness or loss of function in an arm or leg.
Doctors tend to suspect MS especially when such symptoms strike someone in young adulthood.
“They should not be ignored,” Sangha said. “There are so many therapies, and they are safe therapies. There is help out there.”
MS is an auto-immune disease with four types (yet even within these four types, the disease does not always follow a predictable course). Here’s a brief look at the types, based on information from the MS Society:
- Relapsing-remitting: The most common type, it’s characterized by exacerbations or attacks that come on unpredictably, followed by remissions. The remissions can be complete, with no symptoms, or an easing up on things like blurry vision, fatigue and muscle weakness.
- Secondary-progressive: About half of people diagnosed with relapsing-remitting MS develop secondary-progressive MS within about 10 years. This type is characterized by steady progression without remission.
- Primary-progressive: Affecting about 10 percent of MS patients, this type progresses immediately without relapse or remission.
- Progressive-relapsing: The most rare type, it affects about 5 percent of patients. For them, the disease progresses from the beginning, with some relapses/attacks.
Donya Currie is a freelance writer in Stafford County who regularly contributes to Healthy Living and other health-related publications, including the AARP Bulletin. You can write to her at firstname.lastname@example.org.