Pete Klinkhammer was a social worker for more than two decades before he was diagnosed with amyotrophic lateral sclerosis—also known as ALS or Lou Gehrig’s disease.
ALS is a progressive degenerative disease that affects nerve cells in the body’s brain and spinal cord. As these cells become damaged or die, the person may lose the ability to speak, eat, move and breathe.
The disease and its effects took center stage on Sunday, Feb. 25, during a special event at the University of Minnesota Health Clinics and Surgery Center. United States Sen. Amy Klobuchar toured the ALS Certified Center of Excellence within the Clinics and Surgery Center as part of her effort to raise awareness for the Steve Gleason Act, a law that she co-sponsored.
The legislation, which was recently signed into law, will help ensure access to speech generating devices for individuals with communication disabilities associated with ALS, cerebral palsy and Rett syndrome. Because ALS often affects a person’s ability to speak or use his or her hands, a digital speech generating device can serve as a vital communications link.
Prior to this legislation, speech generating devices were not covered by Medicare or Medicaid if patient was living in a hospital or care facility other than his or her own home.
“Each situation is somewhat different, but ultimately at some point almost everyone with ALS will have to deal with problems related to communication, speech, swallowing, nutrition, breathing, use of their limbs and mobility,” said University of Minnesota Health Neurologist David Walk, MD, who spoke at the event. Walk is the medical director of the ALS Center. “All of these of course ultimately lead to changes in life roles, interpersonal relationships, and goals.”
“Speech generating devices aren’t a luxury for people affected with diseases like ALS or Parkinson’s [disease], they are a lifeline. The tools are crucial for helping people to lead independent lives,” Klobuchar said. “The Gleason Act will ensure patients living with ALS are able to speak to the world and express their thoughts and needs.”
ALS affected Klinkhammer’s ability to communicate and prompted him to retire early. Since his diagnosis in 2013, Klinkhammer has advocated for greater access to care and equipment for families confronting ALS. He was instrumental in forming The ALS Association's Voice Banking partnership with the University of Minnesota. He also serves along with David Walk, MD, on the board of directors for The ALS Association's Minnesota, North Dakota, South Dakota Chapter.
The event featured a tour of the ALS Center. Jessica Quiroga, a registered medical assistant, led the tour with the help of Walk and Neurologist Georgios Manousakis, MD, who both specialize in neuromuscular medicine at the ALS Center. Other staff involved included Speech Language Pathologist Kate Nilson, Occupational Therapist Robin Samuel, Social Worker Mary Winkels, Research Coordinator Valerie Ferment, and Respiratory Therapist Nancy Nasi. Other team members include Clinic Nurse Pamela Sandin, Physical Therapist Jackie Geiser, Registered Dietitian Kelly Scheller-Williams and Psychologist Steve Palmer.
“Our team takes a multi-disciplinary approach to provide comprehensive care to ALS patients,” Walk said. “We are grateful to Senator Klobuchar for her work on the Gleason Act and her ongoing support of research.”