ALS Expert Mary Sedarous Stresses the Importance of Time
Mary Sedarous, M.D.
Mary Sedarous, M.D., is a neurologist and a neuromuscular physician who serves as the Medical Director of the ALS Clinic at Hackensack Meridian Hospital in New Jersey, and the Robert Wood Johnson Medical Student Site Director for Neurology Clerkship at the Jersey Shore University Medical Center.
In the videos below, she discusses how testing and research can be time-consuming, and why time is just as important to ALS patients as medication and therapy.
Sedarous: The first thing is, you have the obligation as a physician to identify any disease that can be treated, because the alternative is an untreatable disease. That requires extensive testing, which not only requires extensive resources, but also time, and sometimes that’s time that the patient doesn’t have. They, before you, want to know what is going on and why their symptoms are progressive.
In the diagnostic criteria that we still use to diagnose this rare disorder, part of it is that you need the time to show that the symptoms are consistent and progressive in more than one area of the body in the typical fashion that ALS normally would. The time is probably the biggest obstacle a physician has when they’re diagnosing someone with ALS.
Sedarous: As amazing as the research going on right now in ALS is, a lot of patients don’t have and won’t have the time, so at the front of it is managing patients with ALS now and not just waiting for the next therapy to come. It is the day-to-day struggles that they have for which you really have to be there for them.
That is what an ALS clinic does, and ALS clinics – I know our clinic has benefitted greatly from the (ALS Association) Greater Philadelphia Chapter. We are a part of their network, and the services that they have provided to our patients are tremendous. They’re very supportive, and I’ll give you an example: for patients who need wheelchairs because they’re no longer able to ambulate, they have a wonderful wheelchair program. Normally, it would take about three months for a patient to get approved for a motorized wheelchair, but we can have the loaner in their house, through the ALS Association Greater Philadelphia Chapter, probably within a few weeks. That means the world to some patients.
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