May 01, 2002
BY DONNA SMITH, Black Hills Pioneer
SPEARFISH - In Spearfish, a group of 10-12 people who have multiple sclerosis gather monthly from September through May to lend one another support and to share information on the latest treatments or diagnostic efforts. Today, the local MS supporters in conjunction with nation organizations announce May as Multiple Sclerosis Awareness Month.
With multiple sclerosis the members suffer from the chronic, often disabling disease that attacks the central nervous system and most often strikes in the prime of life from age 20-40. Symptoms vary and can make diagnosis complicated. Numbness in limbs, loss of vision or vision disturbances may often be some of the symptoms of MS. Although MS is not fatal, the progression, severity and specific symptoms of the disease cannot be predicted and do not follow the same course for every person.
Kathryn Cole's diagnosis came in 1981 after years of non-specific symptoms and some rather odd alternative medical suggestions. One doctor suggested she eat six almonds and half a lemon every day to alleviate her symptoms. Cole's good nature often left her joining in some self-teasing after a symptom caused what could be viewed as clumsiness or forgetfulness. She recalls teaching herself to write with her left hand and suffering from Bell's palsy which left one side of her face partially paralyzed. But Cole defines her life by those things she can do and not by what she cannot.
Cole is especially grateful for the state grant funds made available for her to outfit her home with stairway lifts and bathroom adaptations so that she could remain at home even during more difficult symptomatic periods. "I cannot thank Governor Janklow enough for sharing the tobacco settlement funds in this way. He is a hero to me," said Cole.
Sandra Dean is a registered nurse and felt odd symptoms early in her disease as well. She said it felt like she was walking with rocks in her shoes, and she had trouble swallowing. Cortisone treatments helped Dean tremendously but as with many other potent therapies, cortisone carries its own set of side effects. Dean's doctor called the disease a "de-myelinating disease."
Myelin is the fatty substance that surrounds and protects the nerve fibers of the brain and spinal cord.The damaged myelin forms scar tissue (sclerosis), hence a person with MS may have many of these scars and be impacted in many ways with various symptoms.
New drugs to help MS have been introduced over the past few years, and some are still in the research phase. The National MS Society recognizes the "ABC drugs" for treatment of MS. Those drugs are Avonex, Betaseron and Copaxone. One drug may help one patient while another helps others.
On Sunday, April 28, the Larry King Live program featured an entire hour of interviews and discussion about MS. Montel Williams shared that while early estimates of MS sufferers in the United States numbered around 400,000, the ability to better diagnose the disease through magnetic resonance imaging may ultimately result in more accurate statistics of up to 2.7 million Americans identified with MS. Williams founded the Montel Williams MS Research Fund and has been very public with his MS story since the time of his diagnosis.
Not all MS patients share Williams' willingness to speak publicly about their condition. Liz Haanstad of Spearfish can name several prominent people who have MS. Lola Falana, Alan Osmond (one of the Osmond brothers), Joe Hartzler (the lead prosecutor for the Oklahoma bombing trial), Annette Fonicello, and actor David Lander are among those Haanstad has learned about since her MS diagnosis in 1985. Lander played the character "Squiggey" on the popular sit-com "Laverne and Shirley" and authored a book about his experiences entitled, "Fall Down Laughing." Haanstad says it can be especially difficult for public figures to openly discuss their disease because of the stigma still attached to MS.
Montel Williams believes those in the public eye who have MS have a responsibility to discuss their disease openly. He acknowledges that, "Some days, many days, I don't even really want to get out of that bed but I do what I can to do 100 percent of what I can every day."
Though women are more frequently impacted by MS than men, men tend to suffer from the more severe and progressive forms of MS. The disease can be relapsing-remitting, primary-progressive, secondary-progressive or progressive-relapsing (the most serious form of the disease).
Haanstad often repeats a theme shared by many with MS. "We have MS. It does not have us." She also remembers a man her husband assisted years ago, Bill Yeager of Deadwood. Haanstad met Yeager more than 20 years ago and her husband helped him get a hospital bed so that he could remain at home. Though Yeager died on Dec. 2, 1993, Haanstad still thinks of him as her mentor and someone from whom she learned so much about living with MS.
During May, the National Multiple Sclerosis Society will support many efforts to educate the public about MS. The Montel Williams MS Research offers the "MS Take Action Kit" free of charge to those with MS who want more information. Call 1-877-MontelMS to ask for a kit. In California there will be a Race to Erase MS on May 10 and a special round table about the disease. For more information about the national event call 1-800-2ERASE1.
Locally, the Matthews Opera House is sponsoring a Brown Bag luncheon
meeting on Wednesday, May 8 at noon. For more information about the Brown
Bag on May 8 or about the on-going support group, call Liz Haanstad at
© The Black Hills Pioneer