Five years after the Ice Bucket Challenge, the spotlight on ALS is much larger. Also known as Lou Gehrig’s Disease, ALS attacks brain cells and the spinal cord, resulting in weakness, muscle cramps and difficulty speaking.
Here in Louisiana, around 200 people are currently living with the disease. I recently caught up with a Baton Rouge family, whose members carry the rare familial gene. Their matriarch is the sixth family member in three generations to suffer from ALS, but she refuses to let those three letters control her life.
“ALS is not in charge of me. I’m in charge.”
At 67-years young, Baton Rouge native Virginia Allain, is a role model. She tells great stories, has comedic flare and has been living with ALS for several years, officially receiving her diagnosis in 2016. But since Day 1, her positive outlook has been contagious.
“You have to keep your sense of self, gather your inner strength, have a strong faith in God and supportive family, and look at it as a challenge,” Allain said.
Dr. Laura Boudreaux, one of Allain’s three daughters, noted “From the minute Mom was diagnosed, as it’s progressed, we have been absolutely amazed at her strength…and just brought such a joy to the room, and everyone else was amazed at her positivity and the things she had to say.”
Virginia’s condition has seen a gradual regression, first losing the use of her right arm and right leg. She just recently made the transition to a feeding tube, to avoid the possibility of choking.
“I tell other ALS patients: when I lose something, I grieve,” Allain said. “Grieving is necessary over the loss of an arm or a leg. After the grieving, we go back and count the things we still have left.”
But ALS has not prevented Virginia from living her life. She loves to swim, go to the movies and spend time with her family and friends. Last fall they traveled to Europe for a dream trip to Italy.
“I rode on an airplane, and so did my wheelchair. I bumped across Italy like a ride at Disney World, and flew in a van like it was also a ride. It was wonderful.”
With each passing day, the fight to find a cure for ALS continues. Virginia remains upbeat and optimistic.
“My brother said, Gin all you have to do is live for the cure. You know it’s coming. So yes, we’re very very hopeful. If not for my generation, for my children or grandchildren.”
This Friday night, the Louisiana and Mississippi chapter of the ALS Association will host its annual gala to raise more awareness and funding. Virginia and her family plan to attend, bringing that contagious positivity into the room.
For more information on the gala, visit: http://webla.alsa.org/site/PageServer?pagename=LA_homepage