URMC ALS Clinic Expands Services

Golf Tournament Proceeds Support Multi-disciplinary Team Approach

June 08, 2004

"The result of this team approach is better care because each therapist, nurse, or physician in the clinic has a lot of experience in dealing with the special needs of people with ALS."

Coordinated care and convenience are just some of the benefits patients with amyotrophic lateral sclerosis, or ALS, are experiencing at the University of Rochester Medical Center’s expanded ALS clinic.  Physical therapists, respiratory therapists and speech therapists are now joining physicians and nurses at the monthly ALS clinic to improve the quality and ease of care for ALS patients.

The expansion was made possible through proceeds from the first annual Peter Lawrence ALS Classic Golf Tournament held in 2003. That tournament, organized by Rochester resident Peter Lawrence, raised nearly $40,000. This year, organizers hope to raise $60,000 to further the clinic’s work (see below for more details on the June 28 golf tournament). 

More than 30,000 Americans have ALS, also known as Lou Gehrig’s disease. ALS destroys the nerve cells that control muscles in healthy adults, ultimately causing complete paralysis while leaving mental function intact. ALS usually strikes in middle age or later, and men are somewhat more likely to develop ALS than women. Death often comes within two to five years of diagnosis, although some people survive longer.

Currently, there is no cure for ALS. Symptoms are numerous and are compounded as the disease progresses, effecting everything from walking, to swallowing to breathing. The focus of care is to preserve independence and communication, allowing patients to live a quality life as long as possible.

The new ALS Clinic makes this easier to achieve by bringing together all of the varied health disciplines needed to treat ALS patients for a one-day clinic. Every month, URMC neurologists and nurse practitioners, along with respiratory, physical and speech therapists, and representatives from the local MDA chapter, are all available to meet with ALS patients to review the patient’s status and make any changes to care as needed.

“The result of this team approach is better care because each therapist, nurse, or physician in the clinic has a lot of experience in dealing with the special needs of people with ALS,” Thornton said. “The care providers can talk directly to the patient and to each other to develop the best plan of action. Patients are no longer spending their days running from appointment to appointment, but focusing on their health and well-being. We not only are helping the patients while they are in the clinic, but helping to coordinate care being given in outlying regions.”

The second annual Peter Lawrence ALS Classic Golf Tournament is set to tee off on Monday, June 28 at the Irondequoit Country Club. Morning and afternoon tee times are available, as well as lunch and dinner banquets. To register a foursome, call Irene Doktor at 585-273-3180, or email her at irene_doktor@urmc.rochester.edu.

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