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Managing ALS

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Posted: Wednesday, May 29, 2013 11:35 am | Updated: 5:20 pm, Wed Jul 3, 2013.

Comprehensive Care Can Help ALS Patients Live Longer, Easier

In medicine, there is perhaps no harder diagnosis to accept than amyotrophic lateral sclerosis (ALS). A progressive and ultimately fatal neuromuscular disease, it attacks the nerve cells in your brain and spine, immobilizing the body inch by inch, and eventually making it impossible to stand, walk, talk and breathe.

Commonly referred to as Lou Gehrig's disease — named for the famous Yankee slugger who received his diagnosis in 1939 – many die within two to five years of the onset of symptoms from respiratory illness. About 10 percent survive for 10 or more years.

“It is a devastating diagnosis to have to share with someone,” said Gregory Hanes, MD, a Sarasota neurologist who specializes in ALS and neuromuscular disorders. “All we can do is offer hope that researchers will continue to develop new treatments, and one day a cure, while doing all we can to help them live a longer, easier life.”

Although there is only one FDA approved drug, riluzole, that modestly slows the progression of ALS, several other drugs, including stem cell therapy, in clinical trials hold promise.

Hanes, who heads Sarasota Memorial’s Center for Neuromuscular Disorders, a MDA/ALS Comprehensive Care Clinic, said there are other significant therapies and new treatment guidelines to manage the symptoms of ALS and help people maintain as much independence as possible and prolong survival.

Among other interventions, the guidelines state that life expectancy and quality of life may increase for people with ALS who enroll early in a specialized multidisciplinary clinic to optimize care. The clinics combine the expertise of multiple specialties, including a neurologist, pulmonologist, respiratory therapist, physical and occupational therapists, nutritionist and mental/behavioral health specialist.

Each year, about 5,000 people in the United States learn they have ALS. The disease most often strikes people ages 40 to 70. More men than women get it. Although the disease progresses at a different rate with each person, ALS usually spreads rapidly to most of the voluntary muscles in the body, weakening and eventually paralyzing the muscles. It typically does not affect involuntary muscles (such as bowel and bladder function), the senses (smell, taste, hearing and sight), or the ability to think.

Doctors do not know what causes ALS, though studies have suggested that in some cases, poisonous substances (toxins) in the environment or viruses may play a role. Researchers also are studying genetic and hormonal factors.

INFORMATION

Sarasota Memorial’s Center for Neuromuscular Disorders has been designated by the Muscular Dystrophy Association as a MDA/ALS Comprehensive Care Clinic. The multidisciplinary clinic offers:

• Diagnostic and genetic testing

• Coordinated care and treatment by multiple specialists

• Access to clinical trials

The clinic is located in Sarasota Memorial’s Institute for Advanced Medicine, 5880 Rand Blvd. (off Clark Road). For information about the, call (941) 917-4156.

About Sarasota Memorial's MDA/ALS:

The disease management clinic (supported in part by the Muscular Dystrophy Association) serves patients with neuromuscular disorders, including:

• The muscular dystrophies

• Motor-neuron diseases like ALS (Lou Gehrig's disease)

• Spinal muscular atrophies

• Genetic neuropathies (Charcot-Marie-Tooth disease)

• Glycogen storage diseases

• Periodic paralysis

For information about the services MDA provides, contact Eileyn Sobeck-Bador, the MDA Southwest Florida District office coordinator by email (516.office@mdausa.org) or phone (239-437-6900). To learn more about MDA, please visit the web site at mda.org.

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1 comment:

  • ALS Activist posted at 12:20 pm on Fri, May 31, 2013.

    ALS Activist Posts: 1

    I to wish that there would be a cure. i know that there are a lot of great people fighting this fight and they deserve to have a cure found.
    Here is a message posted on behalf of Ed Johnson:
    "I am on the ALSTUN (ALS treat us now) steering committee, we invite you to ask us for more information. Tell us if you would like to join one of our teleconference calls. Help us help you.
    http://treatalsnow@gmail.com
    e-mail address is treat.us.now@gmail.com or
    edjohnson@alumni.duke.edu
    best to you, Ed"