published Friday, March 7th, 2014

Living with limitations: Patients say MS is a mysterious, challenging disease, despite medical advances

Dick Lindeman speaks about his battle with multiple sclerosis.
Dick Lindeman speaks about his battle with multiple sclerosis.
Photo by Dan Henry.
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    Dick Lindeman was diagnosed with multiple sclerosis at age 28.
    Photo by Dan Henry.
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HIGH PROFILE

The following celebrities have announced that they have multiple sclerosis:

• Trevor Bayne, NASCAR driver and Daytona 500 winner

• Richard Pryor, comedian and actor (deceased)

• Clay Walker, country musician

• Terri Garr, film actress

• Jack Osbourne, reality TV star and son of rock star Ozzy Osbourne

• Ann Romney, wife of presidential candidate Mitt Romney

• Joan Didion, author

• Montel Williams, former talk show host

• Michaele Salahi, reality TV star

• Annette Funicello, former Disney Mouseketeer and film actress (deceased)

• Clive Burr, former drummer with Iron Maiden (deceased)

• David Lander, TV/film actor

• Tamia Hill, R&B singer/songwriter

• Hal Ketchum, country singer

UPCOMING EVENTS

Interested in helping to raise awareness of multiple sclerosis? Take part in the Walk MS 2014 on April 26.

The route, which begins 10 a.m. at the Tennessee River Park's Hubert Fry Pavilion at 4301 Amnicola Highway, includes 1-, 2- and 4-mile options. Participants are encouraged to raise at least $250 in donations and can pledge their own money towards the goal.

More information at www.nationalms.society.org or by calling organizers Abby Mullen and Carlie Moore at 615-690-5343 or 615-690-5341.

EARLY SIGNS

According to the Multiple Sclerosis Association of America, the following symptoms could be early warning signs of multiple sclerosis:

• Blurry vision in one or both eyes, double vision or loss of contrast or vivid colors, sometimes accompanied by pain when looking up or to one side.

• Tingling or numbness in the face, limbs or fingers.

• Tremors.

• Chronic pain, stiffness or painful, involuntary muscle spasms.

• Prolonged fatigue or weakness, especially in the legs, which may improve after several weeks.

• Feelings of lightheadedness, dizziness and vertigo, particularly when standing up.

• Bladder, bowel or sexual dysfunction.

• Memory and language problems or a shortened attention span.

• Major depression accompanied by anxiety.

• Uncontrollable, exaggerated or inappropriate emotional displays.

As a student at Rhodes College in Memphis, Dick Lindeman's trim, 6-foot-2-inch frame was a valued asset to the basketball, baseball and football teams. After graduating, he married his high school sweetheart, Charlotte, and was hired as a stock broker.

The pins of life seemed set up just so he could have the pleasure of knocking them down.

Until he lost sensation in his left foot.

"Then I went numb from my knees down ... then from my chest down," he recalls about the next several days. "They put me on steroids, and it went away."

A year later, however, while at a business conference in Indiana, he woke up one morning to discover he had gone blind in one eye. His neurologist in Atlanta recommended he come in for an evaluation when he returned.

He eventually recovered some of his sight, but the news wasn't good. Lindeman was diagnosed with relapsing-remitting multiple sclerosis. He was 28.

Multiple sclerosis is a chronic disease that causes the immune system to attack the myelin sheath, a protective coating surrounding the nerve fibers in the brain and spinal cord. The lesions and scarring created by these attacks result in neural short circuits that can lead to a range of physical and mental impairments, from slurred speech to intense fatigue to paralysis.

March is National Multiple Sclerosis Education and Awareness Month, and Lindeman and other local multiple sclerosis patients say it's critical to raise awareness of the disease. They say it lacks the public profile of conditions such cancer, obesity or heart disease, despite affecting an estimated 400,000 people in America, according to the National Multiple Sclerosis Society. There is no cure, but it can be treated.

Since his diagnosis in 1989, the progression of multiple sclerosis has severely impacted Lindeman's body. Now 52, he remains legally blind in one eye, he has reduced use of his arms and hands, and for five years, he has been paralyzed from the waist down. A tube connected to a hockey puck-shaped pump installed beneath the skin of his abdomen bathes his spine in medication to prevent involuntary muscle spasms.

"I really think people don't understand it," says Lindeman, whoswe ability to navigate his home perched atop a scenic overlook atop Lookout Mountain is limited by the wheelchair he has used for a decade. "I think that there's really limited understanding of what it's like to exist and live in a body without use."

A GRIM PROGNOSIS

Many multiple sclerosis patients are diagnosed in their 20s and 30s. When Lindeman was diagnosed 25 years ago, physicians didn't have access to many of the tools now used to identify MS, such as MRI. Thirty years ago, treatment options also were less effective and were limited to intravenous steroids or experiments with radiation and chemotherapy drugs, says neurologist Dr. David A. Rankine.

"It was always very frustrating because we couldn't do a whole lot," says Rankine, who began treating Lindeman in 2006. "We were chasing the patient's symptoms all the time."

For many like Lindeman, a multiple sclerosis diagnosis often was accompanied by a grim prognosis.

"When I was diagnosed, they said, 'You have MS. I'm sorry,'" recalls Peggy Michaels, 67.

The head of the physical education department at Girls Preparatory School, Michaels was diagnosed with multiple sclerosis in 1989. At the time, she says, doctors suspected multiple sclerosis as the cause of her fatigue, her worsening limp and the numbness in her foot, but they couldn't be sure.

"[The diagnosis] was almost a relief," she recalls, "so we could move on to some kind of treatment."

By the early '90s, Rankine says, MRI use had become more widespread, which aided in earlier detection of MS. At the same time, the first batch of disease-modifying drugs were making treatments more effective at slowing down MS' progression. One of these, a drug called Betaseron, represented a "critical change in our ability to treat patients," Rankine says.

Michaels was one of the first to be placed on a regimen of drugs based on interferons -- proteins made by our own cells to fight pathogens. The drugs' effectiveness at slowing multiple sclerosis and other diseases made them so popular when they were introduced in the 1980s, a lottery system temporarily was instituted to ration the available supply.

Despite the fatigue that is one of multiple sclerosis' most common symptoms, Michaels was able to continue to walk some and even play tennis for many years after her diagnosis, which she credits to being placed on the drug so early.

Her days on the court are past her and she now navigates campus using an electric scooter to avoid tiring herself out, but she is still able to drive and live by herself. In that sense, she says she feels lucky.

"By this time in this disease's history, I should be more crippled than I am," she says. "I feel very fortunate that I was able to get on that medication early and that my body accepted it.

"This disease has not been as cruel to me as it has been to others who need more help than I."

A MYSTERY

The effects of multiple sclerosis vary based on the part of the brain in which the myelin is damaged. As a result, symptoms can be radically different from patient to patient. Severe lesions in a relatively under-utilized part of the brain could result in minimal symptoms, while minor scarring on the brain stem or another vital area could cause severe impairment, Rankine says.

Sometimes, no symptoms develop out of what seem like obvious cases of multiple sclerosis. Rankine says some of his patients exhibit all the signs of the disease but choose a wait-and-see approach to treatment and never worsen.

"There isn't any typical MS; everyone's MS is unique to them," he says. "It's been a very difficult disease to understand. How much is genetic? How much is environment? What acts as a trigger?

"As neurologists, we're trying to figure out how we can prevent it or, if the patient has it, how to modify it so the disease doesn't progress. That's the goal right now."

Multiple sclerosis is not usually fatal, he says, though patients can die from secondary complications such as infections due to bed sores or -- in extremely rare cases -- from respiratory failure if a lesion occurs in the part of the brain that controls breathing.

A cure for multiple sclerosis is not on the horizon, Rankine says. Current research is focused on determining what triggers it, he says, and despite having no clear answer as to its causes, early detection remains key to helping patients preserve their quality of life.

"You see people like Dick who are wheelchair-bound with severe impairment because they've had the disease for very long and at a young age," says Rankine.

"Now, when I see a patient, because we can jump on it so quickly and identify it so much faster, we're able to start treatment and slow down disease progression and reduce the amount of flare-ups and the activity going on."

STAYING HOPEFUL

Although his life has been radically altered as a result of multiple sclerosis, Lindeman says it has, in some ways, been beneficial.

He can no longer enjoy the long runs that were one of his greatest pleasures and worsening fatigue forced him in 2007 to sell his packaging company, but he's thankful that the disease left his mind unimpaired and appears to have stopped progressing.

Last year, he replaced his electric wheelchair with a newer model that, thanks to Bluetooth functionality, allows him to use his smartphone and to control his computer. With the aid of speech recognition software, he also can send emails more easily to keep in touch with friends.

Instead of focusing on how the disease has negatively impacted him, he says he chooses to use it as a platform to help other reach the same mindset he has. He regularly visits schools to speak to students and encourage them to define themselves by who they are, not what they can do.

"I've learned to let the physical go. It's just not that important to me," Lindeman says, looking pensively out his porch windows over the sweep of the Tennessee River. "It's frustrating -- don't get me wrong -- and it's real, but I recognize what I can and cannot do."

Lindeman adds that he hasn't given up on the hope for a cure or for treatments that can restore some of his lost function, but accepting his limitations has brought him closer to his family, to his friends and to God.

"When Dick was capable, in a physical sense, he was largely about advancing his career and living in this physical world in that way," says his wife, Charlotte Lindeman. "Multiple sclerosis ... has made all of us much more aware of what is important here in life, and that is to focus on spirituality and trying to really fulfill God's purpose in our lives."

That's not to say that they have no cause to be optimistic about the future.

In the last year, Lindeman says his speech is much less slurred, an improvement he attributes to prayer and a strict organic diet. And on Dec. 26, his family received a belated Christmas present Lindeman says has stoked the fires of his family's hope.

"I can wiggle my toes," he says, smiling.

Contact Casey Phillips at cphillips@timesfreepress.com or 423-757-6205. Follow him on Twitter at @PhillipsCTFP.

about Casey Phillips...

Casey Phillips has worked as a features reporter in the Life department since May 2007. He writes about entertainment, young adults, technology and people of interest. Casey hails from Knoxville and earned a bachelor of science degree in journalism and a bachelor of arts in German. He previously worked as the features editor for Sidelines at Middle Tennessee State University. Casey received the East Tennessee Society of Professional Journalists Award of Excellence for Reviewing/Criticism in ...

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