Imagine a dream where you are trapped in molasses and can’t move. Imagine what it’s like to be so tired you can barely lift your foot.
For some people with multiple sclerosis (MS), those scenarios–described by a man with the disease–aren’t dreams. They’re everyday life.
North Side residents Susan Stellmacher, David Chaikin, and Julie Power said they have been living with MS for more than 20 years. Residents of the two-year old independent living facility Kingsley Commons, 4550 Humboldt Ave. N. (which was built for people with MS), they recently became political activists, lobbying at the State Capitol for improved health care and benefits for others like them.
Stellmacher said that initially –inspired by President Barack Obama’s “Change is Coming” message–they organized two meetings in January for Kingsley Commons residents to discuss disabled people’s health care concerns. State Representative Joe Mullery and Grant Watkins of CommonBond Communities (which operates Kingsley Commons) attended the first meeting, she said, and after talking to them, some people suggested that the group might be more effective if they shifted their focus to the state level.
“Now we attend the Health and Human Services Committee meetings,” Stellmacher said. “The chair, Thomas Huntley from Duluth, has the mindset of “over my dead body” on all the budget cuts recently proposed by [MN] Governor Tim Pawlenty. We like Huntley, and we also think it’s important for the legislators to see us. We want to be engaged in the process.”
Power added, “You can’t assume that just because you think something is common sense, it will be taken care of.”
They recently supported a bill (co-authored by Mullery and Maria Ruud of Minnetonka) that would have put a $200 ceiling on certain drug co-pays for people with MS. It did not pass in the Senate, but they hope that it might pass in the House of Representatives and go back to the Senate in the future.
Stellmacher said that the state’s proposed budget cuts would eliminate Minnesota Care, and possibly access to some services used by people with MS, including personal care attendants, podiatry, dental care, physical therapy, occupational therapy, speech and language therapy.
“Anybody disabled needs some of those services. The cuts would affect the most vulnerable population and the ones least able to afford it.”
Power said, “Those are all services we need to get through each day. For instance, I get range of motion [treatments] twice a day. Because of them, I’m moving better.”
MS is a progressive autoimmune disease, which means that the body’s own immune system works against itself. It often affects people between the ages of 20 and 45. Some forms of the disease can be controlled by medications. According to information from the National Multiple Sclerosis Society, symptoms range from numbness and tingling to blindness and paralysis. More than 9,000 people in Minnesota and western Wisconsin have MS.
Power, Chaikin and Stellmacher–who all use motorized wheelchairs–agreed that the fatigue that accompanies the disease is very difficult for them. “You wake up in the morning exhausted. You feel like you never slept,” Stellmacher said. “MS stops people from moving. You can’t walk, some days you can’t lift your head off a pillow.”
Chaikin said, “The fatigue is deep down in your bones.”
On other days, however, “You can feel wonderful,” Power said. “You’ll go two or three days like that, but then you think, ‘I’m going to crash.’”
They said that in each of their cases, it took several years to get a diagnosis. Chaikin, for instance, a former salesperson, said he was undiagnosed for 15 years. He traveled extensively for work, he added, and doctors in other parts of the country are less familiar with MS than they are in Minnesota. “MS is believed to be a northern European disease. North European people settled in this area in the Midwest.” Chaikin said that he needs help showering and getting dressed. “After that, I’m often out all day. I have my own apartment here; this building is not a facility like a nursing home. It is independent living with shared services.” He said he still drives (a specially equipped van), and often is the unofficial building chauffeur.
Stellmacher, a former recruiter and trainer for Memorial Blood Center, said that fatigue made it impossible for her to continue working. Her symptoms began in 1975, but she wasn’t diagnosed until 1989. She went legally blind for nine months (serious vision problems are among MS symptoms) and also experienced a loss of feeling in the lower part of her body. Stellmacher, too, is very active, despite the limitations her disease places on her. She often takes the Metro Mobility bus. “A lot of days I’m not here. I’m out living my life.”
Power worked in a community mental health center in Willmar for 20 years. After her diagnosis in 1976, she was able to work for another five years part time, but finally had to quit because of the fatigue. “I have no feeling in my lower body,” she said. “I had no symptoms until I went numb from my waist to my feet. I could walk, but I couldn’t feel anything.” She said that she believes it is important for them to work on behalf of the MS Society goals, and be advocates at the Legislature. It is also important, she added, for them to stay involved in the community. “We have to mainstream ourselves and keep in touch. We are more than our MS.”
Chaikin said, “You will find many people with this disease who lead victims’ lives and see the glass as half empty. We don’t do that; we are glass half full people and we are activists. We don’t sit around saying â€˜Woe is me.’ That’s not an option for us.”
Kingsley Commons is one of three communities in the U.S. and the first in Minnesota to exclusively serve people with MS. The 24 apartments are handicap accessible. Residents contract with a company that provides personal care attendant services. They also share services, such as a hair stylist, with neighboring Shingle Creek Commons, an independent-living seniors building.
For information about MS, call 612-335-7931, or go to the website, www.mssociety.org.