A Multiple System Atrophy Caregiver Speaks for Her Husband
When Jim and Marilee Anderson discuss their experience with Multiple System Atrophy, Marilee speaks for both of them. While Jim’s cognitive skills are as sharp as ever, his speech has become nearly inaudible. As he whispers, Marilee understands perfectly, relaying and amplifying as Jim nods slightly in agreement.
In recalling Jim’s diagnosis, Marilee relates an experience familiar to many with Multiple System Atrophy.
“In 2008, Jim began experiencing symptoms that his primary care physician couldn’t explain,” says Marilee. “Then in 2010, a neurologist diagnosed Parkinson’s disease, but it never seemed to fit.” As symptoms progressed that year and the Andersons continued seeking answers, they got an important clue after an exam at a Parkinson’s center. Marilee requested a copy of the doctor’s notes and saw one simple line that changed their lives: “Cannot rule out MSA.”
Marilee got online, learned that MSA is Multiple System Atrophy, and began reading. “At first, it was like the clouds lifted – it was a relief to see an exact description of his condition,” says Marilee. “And then there was this overwhelming feeling of dread because I read that there’s no cure and that Jim’s lifespan was more limited than we had thought.” The Parkinson’s center confirmed a diagnosis of Multiple System Atrophy in a follow-up visit.
As the disease progressed, it took more and more away from Jim. “He was getting weak, and quickly,” says Marilee. “By June 2011 he had to quit his job. He was frequently dizzy and started to fall – often. It was as if someone had just taken his balance away from him. And there were the wild blood pressure swings, like one that caused him to collapse in church and have to be rushed to the emergency room – where absolutely nobody had ever heard of Multiple System Atrophy.”
Since then, Marilee has been prepared to teach every doctor Jim sees about MSA and where to go for more information – specifically, to the MSA Coalition. “And it’s not just doctors who need to understand,” says Marilee. “It’s also family and friends. We’ve found that some friends won’t come over as often, and we understand why visits can be difficult. Family and friends who do stick with us are something Multiple System Atrophy can’t take away from Jim. It’s building love that is tried and true and tested by fire, and that’s the best love of all.”
Marilee and Jim were joined at the most recent annual MSA Coalition Conference by “Team Jim” – their son Joel, two of their dearest friends and three family members. “Being here together and sharing information with others in the same situation we’re in has made such an impact on us,” says Marilee. “In their literature and in their conference, the information the MSA Coalition provides is consistent and well-researched, and comes from a medical perspective, a caregiver perspective and an ‘anyone who wants to know more’ perspective.”
Marilee says she can’t point to any single aspect of the MSA Coalition as being most important. “You can’t fund research about a disease nobody knows about, because it’s the awareness of the disease that drives interest in researching it,” says Marilee. “And you can’t really know Multiple System Atrophy without a force like the MSA Coalition giving it a face. It all comes together in a synergistic way that gives the Coalition great value. I’m donating this year, and I hope others will join us in that.”
