ALS Foundation continues fight against mysterious debilitating disease
By BRENDA EGGERT BRADER
There is no known cure for ALS.
SENIOR LIFE photo
ALS (amyotrophic lateral sclerosis), often referred to as Lou Gehrig’s Disease, is a fatal neurodegenerative disease that progressively paralyzes its victims.
The disease attacks nerve cells and pathways in the brain or spinal cord, says the ALS Foundation Florida Association chapter. There is no known cure as patients are robbed of the ability to walk, eat, speak and eventually breathe. Upon diagnosis, patients are given just two to five years to live. ALS can strike anyone at any time.
“In Florida, we have 1,300 to 1,800 clients that we serve that fluctuates with the snowbirds,” said Marixa Salgado, regional program director of East Central Florida ALS. “I don’t know if it (disease) is increasing or not, but there is more awareness as more people are being diagnosed earlier instead of later.”
ALS is a muscular disease affecting all muscles, including the diaphragm, making patients short of breath because they can’t exhale carbon dioxide, Salgado said.
“Some people never lose the ability to walk but lose the ability to swallow,” Salgado added. “Using a feeding tube and liquids in a tube makes for danger of aspiration and choking. The tongue, as a muscle, is affected so they can’t talk so they start spelling words by blinking their eyes to an established system.”
“Patients prepare for the disease and adapt to the new normal,” said Patricia Stanco, director of public policy and advocacy for the ALS chapter. “There becomes several new normals. It is constantly challenging people with a series of losses. A lot of grief and it would be weird if they didn’t grieve for the loss of their abilities. They try to power through that and get to the other side. They try to do things they like, but maybe in different ways to bring joy or meaning and purpose.’’
“If veterans, they are twice as likely to contract the disease than a non-veteran,” Salgado said. “It is recognized who is a veteran diagnosed with the disease can get full benefits from VA.”
Riluzole is a pill that is taken and shown in clinical studies to extend life two to three months, according to Stanco.
“Now, there is a new drug since May 2017, Radicava administered infusion therapy,” Stanco said. “It is a complicated regimen and can be a taxing process to go to an infusion center every day. But some people experience more energy with it, and it seems to slow the progression by 30 percent. ALS is not one disease, but a family of related diseases.”
There is an ALS support group in Melbourne for Brevard County held from 1 to 3 p.m. on the third Wednesday of each month at 4450 W. Eau Gallie Blvd. #280.
ALS Foundation offers consultations for patient autonomy to make informed decisions on what they want and don’t want, has strategies to offer to maintain high quality of life, and even offers an equipment loan program to borrow everything at no charge, to keep as long as needed. Small grants are also available for home or vehicle modifications.
“I see courage and the grace for which these people approach this disease,” Stanco said. “And they find a way to find joy, purpose and meaning to their lives.”
To offer donations or for more information, contact the ALS Association Florida Chapter, Inc., Tampa at 888-257-1717 or at alsafl.org.