Multidisciplinary care gives ALS patients a shot at a 'great life'
Geri Walker spent most of her career in the chaos of a school lunchroom, using her hands to prepare trays and count money. Her routine became disrupted one winter day in December 2014, when she struggled to move the fingers of her right hand.
Geri, from Des Moines, assumed it was a flare-up of her multiple sclerosis, or MS, an autoimmune disease that damages nerve cells in the central nervous system. Common symptoms include weakness and numbness in limbs.
She was sent to occupational therapy but continued to lose strength in her right hand, and the same symptoms began appearing in her left hand, too.
“The hardest part was the not knowing what was going on,” Geri says.
Seeking a second opinion, a family practitioner referred her to John Kamholz, MD, PhD, a neurologist with University of Iowa Hospitals and Clinics.
Geri underwent a series of tests, including an electromyogram to measure how well and how quickly electrical impulses were traveling through her nerves. The tests revealed that in addition to MS, Geri also had amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig’s disease.
ALS attacks the body’s motor neurons—the cells that trigger muscles to contract—causing the loss of voluntary muscle function, including the use of limbs, speech, and the ability to swallow. While clinical trials are available, there are currently no treatment options to halt the destruction of motor neurons. Eventually all voluntary muscle function is affected.
Kamholz suggested Geri meet with Laurie Gutmann, MD, a neuromuscular physician with the UI Hospitals and Clinics ALS Clinic—one of only two multidisciplinary ALS clinics in Iowa and the only one that offers clinical trials for new treatments and therapies.
ALS patients receiving multidisciplinary care experience improved quality of life due to clinicians intervening earlier for symptomatic care issues, like breathing problems, Gutmann notes. Clinical trials offer therapies that are not yet widely available to patients.
“The clinic and the people in it have been amazing to us; you can tell they really care. Each person you meet is so supportive and wants to know what they can do to help make your life better,” Geri says.
Geri is predominately affected by ALS in her arms and hands. But with help of the ALS Clinic, she’s embraced the use of adaptive technology, like modified utensils and button hooks, to help maintain her independence.
“Our approach gives us a fuller image of the patient and what’s important for them to be able to do, then we find ways to help them continue what they like to do for as long as possible,” Gutmann says.
“I have so many blessings to be thankful for. I have my faith, my family and friends, and the clinic,” Geri says.
The clinic’s streamlined approach to care—one appointment in one location—eliminates the physical exertion of traveling to multiple appointments. Patients stay in a single exam room for the duration of the appointment—typically three to four hours—seeing multiple clinicians, including neuromuscular physicians, occupational therapists, physical therapists, speech pathologists, respiratory therapists, dietitians, a psychologist, and more. The visit is coordinated by a nurse clinician, and each appointment is tailored to address the current symptoms and concerns of the patient and their family.
“Our communication for a patient’s plan of care ensures there is no redundancy and that recommendations are consistent. We want to make the visits as comprehensive and constructive as possible,” says Erin Springer, a nurse clinician in the ALS clinic.
Gutmann and Springer also emphasize the importance of coordinating care with local family practice providers, home health agencies, and therapists to ensure patients receive the specialized care and equipment they need while at home.
“When I’m home and going through all this, I know I can call them any time or send a MyChart® message, and they will get back to us. It’s just so nice to know that I don’t have to go through this alone,” Geri says.
Geri and her husband and caregiver, Fred, travel from Des Moines to Iowa City every six months for an appointment.
“If I could talk to anyone struggling with ALS, I’d tell them, ‘Life can still be wonderful, even though we have this disease. There are so many kind, wonderful people that can help us through it. Life can be hard, but it can be amazing. We can still have a great life,’” says Geri.