USU graduate lives with ALS
Though the ALS ice bucket challenge raised awareness for Lou Gehrig’s disease, the lack of a local ALS Association Chapter hits home for one Utah State University alumna.
Kim Maibaum, a Cache Valley resident, has lived with ALS for ten years. ALS, or amyotrophic lateral sclerosis, is a disease that attacks the nerves that control voluntary movement of the body resulting in muscle stiffness, weakness and paralysis, according to alsa.org.
Maibaum has outlived her life insurance; the life expectancy of those with ALS is between two and five years. Sept. 16 marked Maibaum’s tenth year of living with ALS. Though the ALS Association does allow funds to be donated through alsa.org, Utah does not have an official chapter.
Born and raised in New York, Maibaum attended USU and went on to become an interpreter for the deaf for 22 years, even interpreting for President Bill Clinton before her diagnosis at age 50.
Wendy Shelton, a friend of Maibaum’s, said that though the state pays for 17 hours of aid a week, Maibaum struggles financially for her at-home care, not wanting to live in a nursing home. This leaves Maibaum up to $3,000 in debt monthly, said Valerie Byrnes, a long-time friend of Maibaum. Since she has passed the life expectancy, Maibaum’s insurance has not been covering her needs, which encouraged her friends to start raising funds to help support her.
“There was a whole team of people who used to take care of Kim,” Byrnes said. Many were or are USU students, she said.
Maibaum’s only relative is a sibling who lives in another state.
“Her friends have become her family,” Byrnes said.
Anika Jeppsen, a junior majoring in math, started working as a licensed CNA for Maibaum in 2009. Though school prevented Jeppsen to continue working with Maibaum, Jeppsen and others helped raise approximately $10,000 through art auctions, dinners, live band performances, a dessert night and a yard sale between 2012 and 2013 for Maibaum. Jeppsen also created Maibaum’s blog, www.keepkimhome.blogspot.com, to help raise awareness and funds. She and other aides wanted to use local means and fundraising rather than contacting the government for assistance.
Jeppsen said she saw the message of the ALS ice bucket challenge as a positive thing that raised awareness. The blog and fundraising also helped with awareness not only for ALS but for Maibaum’s struggle.
“Sometimes we don’t realize how devastating other diseases can be,” Jeppsen said, making it more crucial to help the cause. Statistics from alsa.org show that nearly 4 in 100,000 people have ALS.
Though Maibaum has the “slow and progressive” type of ALS, Byrnes said Maibaum still lives life to the fullest. She frequently uses her power chair and the bus. Her aides take her to the Logan Tabernacle to listen to music and she still goes attends her church. Though the ALS has taken a toll on her body, making her mostly immobile, the disease hasn’t affected her brain.
“She’s smart as a whip,” Byrnes said.
Though there is not currently a chapter in Utah, those interested in helping Maibaum can do so through other ways. The ALS Association offers opportunities for supporters to host their own events to support the association. Another national movement, “Walk to Defeat ALS,” has over 175,000 participants annually. These types of events have raised over $182 million to fight ALS, according to alsa.org. Jeppsen said only $700 has been donated through the the blog so far, but links are still up to make donations.
— sadiejherrera@aggiemail.usu.edu