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ALS, also known as Lou Gehrig's Disease, affects more than 200 people in Oklahoma

Posted at 5:40 AM, Dec 03, 2019
and last updated 2019-12-03 07:25:01-05

TULSA, Okla. — Every 90 minutes in the U.S. someone dies from ALS, commonly known as Lou Gehrig's Disease.

"ALS is a beast that affects every person different. There is no two ALS journey that's the same," says Sharon Catalano, the manager of events for the ALS Association Oklahoma.

The progressive neurodegenerative disease affects the brain and the spinal cord, leading to lose of muscle movement. This can lead to paralysis.

"That [ALS] affects all the muscles that lead to the brain and that control everything that we do as an individual from picking up a pen to eating and walking," says Catalano.

There are currently about 240 people battling Lou Gehrig's Disease in Oklahoma.

In just the past two weeks, Catalano says three beloved people have passed away, including Coach Allan Trimble in Jenks; Troyan McCollum, an elementary teacher in Oklahoma City; and Doug Campbell from Tulsa who served on several boards such as the Gilcrease and Philbrook museums.

The life expectancy of someone living with ALS is not very long. It averages about two to five years from the time of diagnosis, and that's if the disease is detected.

"If the diagnosis takes anywhere from six months to a year or two years, you've already lived that time frame with the disease," says Catalano.

There is currently no cause and no cure.

It takes a toll not only on the person diagnosed, but on the whole family, says Catalano. Sometimes family members end up taking the roll of caregiver.

That is why the state chapter of the ALS Association was born a few years ago to help families affected by the disease.

The organization serves between 108 and 114 families across the state.

Catalano says they make in-house visits to let people know about the resources available and help make referrals to doctors and caregivers.

Another way they help is by loaning "durable, medical equipment" like wheelchairs.

Families will have the chance to meet one on one with providers and learn about resources in a free caregiver bootcamp in January 2020.

For more information about resources offered by the ALS Association, click here.

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