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The truth about living with MS

Ray Gora / Lincoln Times-News
Ann Wilson, who suffers from the “primary progressive” type of multiple sclerosis stands with her walker holding a bag full of medications and vitamins, all of which are among many things that help her get around and get through the day.

Area multiple sclerosis sufferers talk about the challenges they face, while one of them rides to raise funds, and boost awareness of disease

Staff Writer

Lincolnton resident Ann Wilson uses a walker and electric wheelchair to maintain her balance and assist with the chronic fatigue that plagues her each day. Her body is slowly succumbing to what she calls “a mean-acting disease” that doctors diagnosed her with three years ago — a disease that many individuals in the surrounding community also battle with — a disease for which a cause and cure have yet to be identified.
Diagnosed with multiple sclerosis in her 50s, much older than the majority of victims who are diagnosed in their 20s and 30s, Ann feels blessed to have lived a full life before becoming ill.
She mistakenly thought her early symptoms of lack of balance and energy loss were just part of her clumsy nature.
“It (MS) gave me very subtle signs for years,” she said.
Despite her inability to do daily activities such as cooking and cleaning, Ann maintains a sense of humor about her condition, even though she admits her husband is terrified about her illness.
“I have to laugh,” she said.
The particular kind of MS that Ann has, primary-progressive, one of four types, according to Jennifer Gawler, public relations and marketing director for the National Multiple Sclerosis Society (NMSS), doesn’t allow for relapses or remissions and ultimately can’t be stopped. Because the disease has wreaked havoc on her internal organs, she takes a variety of pills, but no medication can aid or suppress her symptoms, which currently include muscle spasms and short but frequent head and back pains.
“I just stay in a constant state of going downhill,” she said.
Ann constantly finds herself on the ground.
“I can’t stand back up if I fall,” she said. “If I fall when nobody is home but me — too bad.”
In addition to losing her independence and being unable to work outside, hold a job the last two years and drive, Ann is slowly losing her memory.
However, she still remembers the initial terror that struck her after medical officials relayed the life-changing news of her condition.
“I was completely stunned,” she said. “It took about six months to sink in. Stuff like that just did not happen to me.”
Despite her daily life’s constant “wild, rollercoaster ride,” she is determined to stay positive, drawing strength from her Christian faith and firmly believing that God allowed her to develop MS for a purpose.
“I’ve fought it every step of the way, and I will continue to fight until the day I die,” she said. “There are so many things that could crush my spirit … and I just put one foot in front of the other and keep going … MS does not have me — I have MS.”
Ann dispelled some of the common myths associated with the disease. Despite her lack of outwardly-visible symptoms, she doesn’t use the the electric wheelchair at Wal-Mart because she’s “lazy.”
“You can rarely see it, but trust me, it’s definitely there causing hate and discontent inside my body,” she said.
In addition, MS isn’t deadly but produces a number of other health-related illnesses and conditions that can cause death, but perhaps, the community’s primary misconception about MS is that there’s only one type.
“There isn’t one person that has the disease that is like another person,” Ann said.
Her chief advice to newly-diagnosed individuals is simple: “Never give up.”
Beth’s story
Ann’s aunt Beth Beal Roseboro, of Lincolnton, also suffers from the disease.
While Gawler with the NMSS said MS is not hereditary, a person’s chances of getting the disease increase if a “first-degree relative such as a parent or sibling” also has it.
Beth hopes a cure can be found “before we have to look in the eyes of one of our children and say, ‘You have MS,’ ” she said.
In 2006, doctors diagnosed her with secondary-progressive MS at 46 years old. The news came just months after she married and bought a new home; she was devastated.
“ ‘It was the best of times. It was the worst of times’ had nothing on me,’ ” she said.
Beth went to the doctor after she woke up one morning with no feeling on the left side of her body, similar to a stroke. The incident was evidence of her body’s switch from relapsing-remitting MS to secondary-progressive MS, she said.
Beth believes she’s had the “unpredictable” disease since birth, one day realizing that all her unexplainable past episodes of muscle and nerve pain were actually relapses, one of which occurred when she was 17 years old.
“Both of my legs were mysteriously paralyzed when I woke from a nap,” she said.
Stress is a prime trigger of her relapses including a moment from 2005 when grief from her mother’s death resulted in her loss of her ability to taste and smell for four months.
Her disease no longer goes into remission but daily haunts her with a number of symptoms including insomnia, neuropathy, bowel and bladder issues, paralysis on her left side and loss of balance. She’s also more susceptible to fevers since she had a hard time regulating her body temperature.
“I can be sitting outside in 90-degree weather, wrapped in a blanket, and … I’m freezing,” she said.
Beth doesn’t consider herself brave or strong and believes that by having the disease, she’s saved her 12 older siblings from having to endure the same struggle.
“I can stand having it but would never be able to bear seeing one of them with MS,” she said. “I had MS to protect them from having it. It’s an odd thought, I suppose, but it worked. I found my ‘bliss.’ “
In order to maintain somewhat of an active lifestyle and keep her mind busy, Beth started rescuing animals, knowing she had to care for them daily.
“I had to keep going, to keep pushing on no matter how badly I was feeling because they needed me,” she said. “They saved me.”
Nancy’s story
Nancy Beatenhead also suffers from secondary-progressive MS, or “Ms. Monster, her roommate,” as she calls it, but still plans on living to 100 despite her hearing loss, “burning, tingling muscle spasms” and easily-broken ribs, among other debilitations.
“I am a perfectly healthy woman with MS,” she said. “My desire to keep going is just an intricate part of who I am. I love life and my surroundings.”
Nancy does not rely on pain medications to tolerate her symptoms but rather allows her “body’s system” to work out her discomfort and inner kinks.
Diagnosed with MS later in life and officially six years ago, she immediately took to researching her disease and putting her life back together.
While she can’t recall her exact date of diagnosis, Nancy can vividly remember her doctor’s words, but she knows that as long as medical officials are searching for a cure, “there is always hope.”
In addition to her family and friends, she draws daily strength for her battle with MS from her Christian faith and her Yorkie Gracie.
Nancy not only advises those who don’t have MS to “to take a moment to be very thankful” but also suggests newly-diagnosed individuals “stay positive” but “buckle up.”
“It’s gonna be a bumpy ride,” she said.
Kimberly’s story
Maiden resident and nurse Kimberly Tackett has suffered from relapsing-remitting MS since 2003, when she said her first major symptom, a partially-numb tongue, struck her randomly. While she attributed the strange symptom to a sinus infection, an MRI later revealed white plaques on her brain, “which are indicative of MS,” Kimberly said.
She ignored the results until later that year when a neurologist confirmed following a lumbar puncture that she has the disease.
At the time, Kimberly was enduring severe headaches, fatigue and trouble walking.
In her day-to-day life, she can longer do simple, mindless activities such as buttoning a shirt, tying shoes, clasping jewelry, and of course walking.
“It makes me angry that I am not the wife and mommy I used to be,” she said.
Kimberly’s feet are her primary frustration.
“Most days they feel so swollen that they could burst and inside them are bees just buzzing around,” she said.
Each day, she takes a subcutaneous injection to help manage her pain and symptoms. In addition, she’s undergone intense physical therapy at Carolinas Medical Center-Lincoln, improving her condition.
“I am able to walk much more ‘normal’ now,” Kimberly said.
She also often finds herself in a catch-22, simultaneously balancing a permanent state of exhaustion with inability to sleep.
“I stay tired a lot more than … the average adult should … like a zombie,” she said.
MS has forced Kimberly to also make a few minor changes to her home including a wheelchair ramp on her deck and rocker light switches inside her house.
Living with MS has radically changed her outlook on life and forced her to better appreciate the “insignificant things” around her including a feeling of pride after remembering someone’s name, typing a letter on the computer or simply braiding her daughter’s hair.
“I will keep trying to do my best and to learn and to smile,” she said.
Tim’s ride
Lincolnton resident Tim Shain, also afflicted with MS, has been working to raise money for the NMMS for several years by participating in a biking event called “Bike MS Breakaway to the Beach.”
Tim endured the 100-mile per day ride to Sunset Beach this past weekend, and to date, has raised more than $5,700 for the NMMS. He plans to draw in at least $10,000 by Oct. 6, nearly $2,000 more than last year’s fundraising total.
While 40 percent of the funds raised benefits MS research on the national level, 38 percent targets local programs and services, including but not limited to medical equipment, education for doctors and physicians and exercise programs.
Tim also participates in more than one biking event during the year to keep in shape for possible future relapses and postpone his MS progression as much as possible.
“Without physical exercise, I would be mentally frustrated,” he said.
Next year, Tim plans to stretch his body and fundraising efforts even farther by cycling 1,000 miles in three months.
Perhaps, his top reason for tackling the strenuous routes is because too many other MS victims are too weak to do the same.
“I ride for those who can’t,” he said.
Cliff is one of those people. Tim met Cliff during a service day in Austin, Texas, last year, where he and other volunteers went into homes of people living with MS to do certain repairs and tasks.
Confined to a wheelchair with minimal ability to move, Cliff expressed his life’s regrets to Tim.
“He said, ‘I accepted the fact that I need to walk with a cane before I should have, then I accepted the fact that I need a walker … then I went to a wheelchair before I should have, and now the only way I can move myself around is holding this stupid stick in my mouth,’ ” Tim said. “ ‘If I had to do it over again, I would fight like hell to walk unassisted as long as I could. Do not ever let anybody say you cannot do something.’ ”
To donate to Tim Shain’s personal page or to give directly to “Bike MS,” visit nationalmssociety.org/goto/BreakawayTimShain.
For more information on MS, visit nationalMSsociety.org.

Image courtesy of KaAnSuli | Lincoln Times-News

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