ALS Patient Stories: Susan's Story
Science of Health: ALS Multidisciplinary Clinic Connects Patients with Specialists, Resources
After the Ice Bucket Challenge: Monthly Clinic in Beachwood Provides Comprehensive Care for Patients with Progressive, Neurodegenerative Disease
Dentist Susan Klingshirn was active at 50 when the steady progression of ALS stiffened her limbs, began making patient care impossible, and forced her to retire at 51. Now 57, Susan’s limbs have atrophied from the neurodegenerative damage wreaked by amyotrophic lateral sclerosis, a breakdown in the communication between motor neurons in the brain, spinal cord and muscles.
But Susan’s lively eyes – which she uses to communicate through a retinal display on her computer that answers her doctors’ questions – speak volumes about the advances in care for today’s ALS patients.
“Patients with ALS are often disabled quickly, and it’s a very labor-intensive disease,” says Bashar Katirji, MD, Director of the Neuromuscular Center and EMG Laboratory at University Hospitals Cleveland Medical Center. “Susan is very proactive. She’s ahead of the game with her care.”
University Hospitals Neurological Institute also is ahead of the game, coordinating a restructured clinic at a convenient outpatient setting in Beachwood with easy access and parking. Rather than making multiple appointments to see doctors, physical therapists, social workers and dietitians, ALS patients can benefit from all of those services in one visit. A representative from the ALS Association – which gained national attention during the Ice Bucket Challenge – visits with patients to ensure they are connected with resources.
“It is so much more efficient – for patients, their caregivers and the clinical staff – to see everybody at once,” says neuromuscular nurse Kim Kapis, RN, who coordinates all the disciplines. She also brings in respiratory therapists and dietitians through medical supply companies and a representative from the ALS Organization to offer resources. “Our patients no longer need to go to four separate places for these services. This disease is stressful enough.”
The first signs of ALS may be weakening or stiffening of the limbs or changes in speech or swallowing. These changes are sometimes so subtle that the disease may be initially mistaken for other conditions. A detailed neurological exam and EMG testing often confirm the diagnosis, Kim said.
Two FDA-approved drugs, with one recent agent administered by injection, may mitigate symptoms of this irreversible disease. Kim was honored with a UH Achieves award in December for her tireless efforts on behalf of patients to obtain insurance authorization, including for Radicava, the first new treatment approved by the FDA in over two decades. UH was the first hospital in Ohio to begin administering this IV infusion, which slows the patient’s physical decline.
“We try to help patients maintain their independence,” says neurologist Komal Sawlani, MD, who has taken the lead of the ALS program at UH Cleveland Medical Center.
Adds Susan, speaking through the retinal scan on her computer, “They guide me in decision-making.”