The ALS Association- Patients are People
November 7, 2014
Although 1.9 million new donors, according to alsa.org, only know of Amyotrophic Lateral Sclerosis (ALS) from the viral Ice Bucket Challenge, Rose Bruemmer has become well-acquainted with the disease. Craig Bruemmer, her husband, and Rose first met when she was working as a physical therapist, helping people live with ALS. They met again when her brother-in-law fell ill with the disease in 1991. ALS decided to stay a while in Rose’s life when she was diagnosed in February 2014.
“I’m lucky I’m as old as I am,” Rose, 78, said. “Because I have lived a full life, when so many are so much younger [than me] when diagnosed.”
When Rose and her husband John, 79, started parking their car a block further from their church in December 2012, Rose had to cling onto John just to walk. After having these issues with her mobility, Rose experienced other health-related issues like blood clots and pneumonia, but the most life-changing and ALS-related problem hit hardest: loss of speech.
Although John might not hear Rose’s voice anymore, she can still communicate with him through written notes on her electronic notepad and her Dynavox, an electronic communication device.
“I’m proud to be a caregiver,” John said. “She took care of me for 55 years and now it’s my turn.”
Once Rose was diagnosed, she began visiting St. Louis University’s ALS clinic every three months. There she meets with a respiratory therapist, speech therapist, nurse, social worker and doctor to update them on her condition, perform examinations and undergo therapy. After this, the team has time to collaborate and discuss her progress and what all they can do to better her life, helping her cope with ALS.
From the SLU clinic, Rose and John encountered the ALS Association’s Debbie King, case manager. After meeting her, she loaned them equipment to help Rose with daily activities like getting in and out of the bathtub and bed. King also helped the Bruemmer’s get a home health nurse twice a week to give Rose a bath, take them shopping and help John with taking care of his wife in general.
“[King] is very, very personal,” John said. “We fell in love with her. She’s a sweetheart.”
When she was younger, Rose was a physical therapist and worked with people who had ALS. This helps her to complete her therapeutical activities. John said his wife knows what to do, how to do it and what to expect.
Though John and Rose both have known people with ALS, like Rose’s brother-in-law who had it, they were shocked and devastated when she was diagnosed. After first being diagnosed, her brother-in-law lived four months before he died as a result of ALS. Rose has now lived with ALS for approximately two years.
“[When Rose was diagnosed], I thought ‘Oh my God,'” John said. “‘This is going to be the same as her brother.'”
The couple, who have been together for nearly 60 years, said they have begun to focus on their faith in the Catholic church in order to remain happy and keep living after she was diagnosed with the disease. Though Rose, who never wipes a smile off of her face, has been burdened with ALS, she knows it well and has decided to live with ALS for a while.