Anyone who has a friend or family member — or who has cared for a patient — with amyotrophic lateral sclerosis (ALS) can attest to its devastating grip.
On any given day, an average of 12,000 people across the U.S. suffer from this neurological disease, which progressively attacks the motor neurons in the brain and spinal column that control a person’s voluntary muscles. Most patients are hit randomly with ALS; relatively few cases are considered familial — from an inherited gene. ALS affects people of all races and ethnicities, although men are diagnosed with it more often than women.
It takes a special person to devote a career to caring for patients with ALS, also known as Lou Gehrig’s disease. It’s no less remarkable when a medical center or team is singled out for exceptional, compassionate care for patients living with this horrific, fatal disease.
Melanie Taylor, MD, medical director, and her multidisciplinary clinical care team at Mercy Health Hauenstein Neurosciences have done just that.
In May 2016, the Mercy Health Hauenstein Neuroscience Center earned a designation that distinguishes it from other neurological care providers in West Michigan: ALS Association Certified Treatment Center of Excellence — the only Certified Center in West Michigan, according to Paula Morning, CEO of the ALS Association. Patients come from all over Michigan and even out of state to seek care with Mercy Health’s remarkable ALS team.
To qualify as a Center of Excellence, the ALS Association looks for a team that provides outstanding clinical care, active research and ongoing process improvement. Mercy Health’s ALS team demonstrated excellence in providing comprehensive, multidisciplinary clinical care to their patients and so much more.
The ALS team consists of an array of medical professionals from Mercy Health, Mary Free Bed Rehabilitation Hospital, the ALS Association and the private sector who collaborate to deliver outstanding service to patients and their families.
On clinic days (once each week), patients remain in one room and team members go to them (Universal Care model of health care delivery). It’s a form of “one-stop shopping” that saves patients precious time. After each clinic, the team meets in one large room and discusses each patient from each provider’s perspective.
Taylor, medical director for neuromuscular programs, summarizes the benefit of this patient-centered, holistic approach:
“I feel blessed to work with this experienced team. Because ALS is so complex, we need a multidisciplinary team to meet the needs of our patients and treat them individually rather than like a number.”
Although there is no cure for ALS, Taylor believes there will be effective treatments — or even a cure — within her lifetime. In the meantime, there is much her team can do to optimize the quality of life for their patients. “We look at what we can do right now to help patients feel hopeful, supported and understood,” she says.
In addition to excellent clinical care and collaboration among providers, other components led to the honor this team has received, including the following:
• Through funding from the Saint Mary’s Foundation, the “Lend-A-Voice” program provides patients who have lost their ability to speak receive free use of iPads and other alternative and augmentative technology to help them communicate.
• Caregiver support groups meet monthly.
• Select team members visit patients’ homes.
• The ALS Association provides:
o A Loan Locker, with durable medical equipment patients can borrow.
o Volunteers who provide respite for caregivers.
• The team participates in fundraisers that help to financially support the clinic: Tour de Rapids and Nana’s Run.
• Research Efforts:
o Patients have participated in medication trials.
o As part of ongoing research, the team gathers patient demographic information to identify patterns that may indicate increased risk for ALS.
• Future Goals:
o Communicating with patients via telemedicine.
o Providing home ramps for patients with mobility issues.
To learn more about our ALS program, please click here>>