At the Phil Smith Neuroscience Institute at Holy Cross Hospital, we are dedicated to providing first-class research and treatment for ALS and other movement disorders, such as Parkinson’s disease. We bring together neurologists, primary care physicians, endocrinologists, registered dieticians, and physical, occupational and speech therapists in a beautiful, newly constructed center made possible by the $7 million donation of the late auto magnate Phil Smith, who succumbed to ALS in 2016.
Amyotrophic lateral sclerosis (ALS) is also known as Lou Gehrig's disease, after the baseball player who was diagnosed with it in the 1930s. ALS is a progressive disease, which means it gets worse as time passes. It affects nerves in your brain and spinal cord that control your muscles. As your muscles get weaker, it gets harder for you to walk, talk, eat and breathe. Eventually you may need support devices to function.
Our model of care
Patients come in to the Phil Smith ALS & Movement Disorders Clinic once a month and see all their caregivers in one visit in one location, saving time, money and aggravation. Patients are able to pull up to the entrance to the Phil Smith Neuroscience Institute, have their cars valet parked, forego sitting in an open reception area and immediately after check-in, proceed directly to an oversized exam room outfitted with extra wide entryways to accommodate wheelchairs. There are no steps or ramps to along this route.
Members of the ALS care team enter the exam rooms in pairs and round-robin visit up to six patients there for the day's clinic. Team members reconvene in the conference room just a few steps away from the exam rooms. Within two hours, on average, patients have gotten their assessments, evaluations and care plans. In this way, we are improving the delivery and the cost of care.
When patients are hospitalized, the Phil Smith Neuroscience Institute team is housed on the hospital campus and can be on the inpatient units within minutes, providing support.
The Phil Smith Neuroscience Institute / Phil Smith ALS & Movement Disorders Clinic features:
-A center designed with the needs of ALS patients in mind
-A family room with a charging strip for powered wheel chairs, where loved ones and caregivers can meet with members of the ALS care team for group consultations
-An ALS-friendly restroom, designed with ALS patient input, including an elevated toilet, elevated sink and special grip bars
-Spacious, mechanized exam tables that adjust up and down
-Standing and sitting scales
-Work rooms for all members of the care team under one roof to increase the efficiency of each visit
An emphasis on research and finding a cure
The Phil Smith ALS & Movement Disorders Clinic has been gathering patients' information for research purposes, using unique software to track patient progress—in addition to the Electronic Medical Record. Since ALS currently has no cure, Holy Cross sees the conduction of research as central to its mission.
Equipped with tablets, team members log patient data and run scales of functional performance, recording information about quality of life, biometrics, weight, oxygenation, pain and more. We map the data so we can anticipate what each patient will need along the care continuum. We are able to track and trend functionality, study the entire group and make recommendations based on trends as well as individual needs. This information is helping to provide us with a whole new level of care.
Right now, our goal is to provide the best quality of life while the ALS patient is with us. As we provide the care, we run research trials to slow the condition and work to find a cure.
We also are working with Massachusetts General Hospital on educational conferences, case review and multi-center clinical research trials.