‘Every 90 minutes’

May is Amyotrophic Lateral Sclerosis awareness month

Timothy Chapman | Vaquero Radio

Every 90 minutes someone gets diagnosed with Amyotrophic Lateral Sclerosis (ALS) or also known as Lou Gherig’s disease which is a rare progressive nervous system disease that is observed in May. 

According to the Center for Disease Control and Prevention website as of 2017 it is estimated that over 31,000 people have been diagnosed with ALS in the U.S..

DHR Health Dr. Alejandro Cruz said ALS is a motor neuron disease that affects the cells of the central nervous system which in the case of ALS it leads to a slow loss of muscle control in the body leaving a diseased person to be completely paralyzed over time. 

Cruz said early symptoms of the disease include weakness in arms or legs, trouble swallowing, breathing problems and twitching muscles in various parts of the body. 

Cruz said ALS is a fatal disease with a life expectancy between two to four years, and as of today there is no cure for the disease. He said the main objective for treating patients is focusing on a good quality of life. 

“Once [patients] understand what the disease is about, some patients will decide they want to use a ventilator in case the breathing muscles start failing,” Cruz said. “So, basically the treatment right now is trying to improve symptoms as much as we can to make the patient comfortable and so they can have a good quality of life.”

He said there is still a long road ahead in finding a meaningful treatment to cure ALS, but he expressed some progress has been made over the last few years. 

“There have now been several genes that have been isolated,” Cruz said. “By finding those genes, then you try to understand a little bit more on why the disease behaves as it behaves and once you understand that, then you’re able to do target therapies. Those have been advances that happened just within the last five or 10 years, that’s when we have been able to isolate genes and determine factors that could potentially prevent ALS in people that have those specific genes.” 

ALS patient Kelly Mcginn is 39 years old and was diagnosed with the disease last year. She said she has lost almost complete control of her left hand and arm, but she still has full strength in the rest of her body.

“I feel like as far as everyday life, I call myself lucky,” Mcginn said. “Lucky of the unlucky because I’m still pretty healthy one year in and my breathing scores are still really high. Like I’m not progressing quickly my daughter has adapted pretty well to what’s going on, and because it’s been a slow progression, none of it’s been like, ‘Mom was fine and now mom can’t walk like in six months.’”

She said when she was first diagnosed with ALS she had a lot of rough moments where she was not sure how much longer she would live. She said she credits her strength and determination to fight today so she can be the best mother her daughter can have. 

“She says to me sometimes, you know, ‘Mom, when’s your hand going to get better so you can do my hair?’ And it’s soul crushing,” Mcginn said. “But, I just tell her, you know, it’s not going to get better. But what I’m trying to do is keep it from getting worse. So, I’m doing trials to help the science of going to my physical and occupational therapy to keep up my strength. All she knows at this point is that my brain has a hard time controlling my muscles and my nerves and my arm. So, that’s what’s happening.”

Co-founder and President of Racing for ALS Scott Lloyd began his fight against the disease when his brother Dave was diagnosed in October 2017 and died last July. 

Lloyd said he and Dave both had dreams of racing when they were younger and decided to kick-start the dream when they were told his brother only had two years to live. 

He said Racing for ALS’ main goal is to raise awareness of the disease and they do so by using a former NASCAR race car by taking it to car shows and other charitable events and have already raised over $1.5 million with all proceeds going to ALS patients and research.

“But how many people are even like ‘what’s ALS’?” Lloyd said. “A lot of people truly don’t even know what it is. Being out there with that race car, it starts a lot of conversations and generates a lot of interest for people around what the disease is and how they can help.”

Lloyd said Racing for ALS uses the #ENDALS hashtag, but he said that’s not only the organization’s hashtag but their ultimate goal. 

“We were so excited to see three new drugs get FDA approval last year off of a lot of the research we’ve been helping fund,” Lloyd said. “That’s literally a 300% increase in the number of treatments that are out there. We’re seeing 37 new gene variants,I think it is, that have come out since my brother was diagnosed that they didn’t even know about when my brother was diagnosed.”

He said researchers are finally starting to do more for ALS. 

“That’s our goal is to continue to push that as hard and fast as we can to try and bring an end to this disease.”

For the final time this is Timothy Chapman for Vaquero Radio.