Amyotrophic Lateral Sclerosis, also known as ALS, is a disease that affects the nerve cells in the brain and spinal cord. Once the first symptoms begin, those affected lose the ability to walk, write, speak, eat, and even breathe. The average survival time is about three to five years.
First discovered in 1869, ALS didn’t gain national attention until 1939 after Lou Gehrig was diagnosed with the disease.
Now, over a hundred years after being discovered, there is still little people can do to stop its progression.
I got a chance to sit down with one Acadiana couple who say that no matter the diagnosis they will fight until the very end.
Lives full of love and happiness have been the norm for Linda and Joe Minix.
“We’ve always been in love with each other. Of course, we’ve had good times and bad times.”
They have been through it all, and still have managed to stick it out for better or for worse. In May, the two came face to face with their biggest challenge of all. Something that neither expected or ever thought could happen.
Joe began having trouble swallowing and would choke each time he tried taking a bite of food.
“The neurologists said that everything came out negative,” says Linda. “The blood work came out negative, the MRI came out negative. He said, ‘I can do another test, but I can’t help you.'”
So Linda and Joe took off to Dallas and had their worst fears confirmed. After more tests, the results were clear. Joe had ALS.
But the couple was unsure of what the diagnosis meant for Joe and the family. Linda says she had heard of the disease before but really didn’t know much about its effects.
“First of all, you have to wrap your head around the fact that this is happening. You can’t look at a person and say this is what’s going to happen next,” says Linda. “Like with cancer, you know you’re going to get chemo or radiation. We didn’t know anything about ALS until then, we still don’t know a lot about it.”
Once the shock wore off, Linda says she continued to fight. She vowed that she wouldn’t give up despite the “death sentence” that Joe was given.
“I went online and everything that I was finding was fatal and terrible. I said, ‘this can’t be, this is 2018.’ She said ‘there is no cure,’ and that is what stuck in my head. There is no cure. I was looking for someone to give me some kind of hope.”
And she found that hope in Paula Shamsie with the ALS Association Louisiana Chapter.
“We were able to come visit with them and give them valuable resources at their fingertips,” says Shamsie. “The biggest thing is to link them with other patients and caregivers and be that support for them.”
With the support and tools in hand, both Linda and Joe are just living each day to the fullest.
not taking for granted the time they’ve been given and where they’ll go next.
“Your life doesn’t stop. Your love doesn’t stop. It keeps going and you just have to adjust. You have to do some adjusting.”
to find out more about ALS you can head to webla.alsa.org