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Part IV: Taking charge of the disease
Most people are diagnosed with MS between the ages of 20 and 50 years old. Because many other conditions mimic MS, it is a disease difficult to diagnose. A neurologist will initially confirm MS and check on its progression through tests such as a Spinal MRI, a lumbar puncture, and evoked potentials (the checking of the brain’s electrical activity).
If necessary, a person should seek a second opinion, knowing their list of symptoms over the past four years.
Knowing that treatments may help MS attacks, manage MS symptoms, and reduce progress of the disease, how then can MS individuals take charge of their condition and their lives?
“My drugs are for symptoms,” Sue Iwinski, Sun City resident with MS, said. “I do not take any for exacerbations.”
“I have taken a majority of the MS medications since I was first diagnosed,” Carol Schaefer, another resident with MS, said. “I see a physical therapist occasionally, a chiropractor who works with MS patients, and a personal trainer to keep me mobile.”
What about other non-medical alternative treatments? Resident Georgene Luneckas was diagnosed 29 years ago and has seen 28 doctors in that time.
When first sitting in on a help group, Luneckas felt the MS patients on meds had difficulties focusing mentally.
“I knew meds were not for me,” she said.
To complicate life for Luneckas, this past July she underwent a surgical mastectomy.
Luneckas has sought out the help of Meridian Stress Assessment which monitors her health progress.
“Meridian Stress Assessment combines computer technology with ancient acupuncture wisdom, empowering patients with the ability to regain and maintain the body’s natural state of optimum health,” Luneckas said. “I was so depleted of the immune system working after [taking] drugs from my cancer treatment. Because my energy was low, I went for acupuncture twice a week for two months. [I] am happy to say my chart is nearly back to normal for me, and I feel great!”
Lauren Krupp, MD and professor of neurology and co-director of Stony Brook University’s Adult Comprehensive MS Center in Long Island, NY, answers the question “How can you live well with MS?” In WebMD’s magazine (March/April 2013 edition), she offers the following suggestions:
1. “Get moving to increase your stamina and lessen your stiffness and weakness.” Lauren suggests that you choose an exercise you enjoy doing, such as swimming, bicycling, or walking. MayoClinic.com advises “If you have mild to moderate MS, benefits of physical activity include strength, muscle tone, balance and coordination, bladder and bowel control, and less fatigue and depression.”
Iwinski frequently walks eight lengths in our Prairie Lodge’s indoor pool, using her specially adapted walker/wheelchair. Sharon Bocik exercises at the lodge’s pool at least five times weekly.
“I do know I have to get back to an exercise plan,” Joanne Nitti said. “Walking in water is one of the best for me.”
“I work out most days by swimming, yoga, and strength training,” Schaefer said. “I have found this method helps me keep active and flexible, maintains my positive attitude, and maintains my function. I don’t like giving in to this disease. I was active before I was diagnosed and want to continue being as active as I can.”
Along with exercise, yoga, tai chi, and forms of meditation are also critical in alleviating the stress caused by a chronic and often debilitating disease. Stress, according to Mayo Clinic, “may trigger or worsen MS symptoms.”
2. “Beat the heat.” It is a known fact that most people with MS have more difficulty with symptoms in warm weather. Krupp suggests exercising in air conditioning or under a fan with cool showers taken.
“People with MS need a lift chair [to get more independently in and out of the water]. Access [to Prairie Lodge’s indoor pool] here is a problem,” Iwinski said. “The lift chair connects now with the whirlpool. Hot water is bad for MS. We can’t use [the] whirlpool.”
3. “Check vitamin D.”
“While researchers aren’t sure what causes MS, one thing we do know is there are relationships between vitamin D levels and disease activity,” Krupp said in the Web MD article.
The National MS Society’s Nutrition and Diet web site says research suggests vitamin D may help strengthen immune systems and regular cell growth.
Sun City Resident and MS patient Joanne Nitti takes supplements like B12, D, and fish oil. The society also recommends maintaining a well-balanced diet that is low in fat and high in fiber.
4. “Plan ahead.” Krupp advises MS patients to get rest and ask for help from a spouse or family when needed. The Mayo Clinic also says social connections and pursuing hobbies are very important.
Nitti does morning mental exercises like crossword puzzles and Sudoku to strengthen her mind.
“First thing in the morning, I pray, play video games, and work on crafts,” Luneckas, who has participated in six craft shows, said.
Don’t be afraid to seek help from a counselor or therapist to help teach you coping skills.
“I have scoliosis of the lumbar area with my back problem causing my ribs to press in on my lungs,” Iwinski said. “I only have 40 percent of oxygen breathing capacity.”
Nevertheless, Iwinski continued, “I find humor in everything. I never have a bad day – I have good days and better days! I have a great husband for help.”
NEXT EDITION: Part IV: MS research and Sun City’s new MS support group
