The ALS Association is hosting the Tri Cities Walk to Defeat ALS at 11 a.m., Oct. 15, at Warriors Path State Park in Kingsport. Pre-walk activities and on-site registration begin at 10 a.m.
According to Monika Hancock, the ALS Association’s Development Associate, ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Slowly, the brain loses the ability to initiate and muscle movement is lost. Eventually, patients become totally paralyzed.
The family of Mary Linkous, 37, is the honorary family at this year’s walk. Mary’s mother, Brenda Linkous, said that Mary first started having symptoms in the fall of 2013. Mary noticed herself walking differently. They started exercising together, then she started falling. Mary’s doctor ran tests but, after a year, couldn’t diagnose her, so she went to specialty doctors for CT scans, and nerve and muscle biopsies. Eventually, Mary finally got an appointment with a doctor at Duke.
“The second day we were there, she was diagnosed with ALS,” said Brenda Linkous. “We were in shock. All we heard was that it was a terminal illness. We drove home in silence as I held her hand.”
When Mary first walked into Duke in January 2015, all she had was a wild gate.
“It’s one of the worst diseases I’ve ever seen. It takes everything you have slowly. Mary has already lost the use of pretty much everything. We all go when the good Lord says we go. No one is promised tomorrow. With that being said, I don’t want her to suffer. It’s a terrible disease, but we’re living one day at a time. We look at the positive things around us. We have things that we can cry about absolutely, but we choose to live and be grateful for the things we do have,” Brenda Linkous said.
One thing the Linkous family is grateful for is the speech communicator Mary recently received. Of all the things Mary has lost the ability to do and control, the loss of speech affected her the most because she has a 5-year-old boy, Owen.
“Before she lost her voice, she asked Owen to come over and give her kisses,” said Brenda Linkous. “Then it got to the point that he could understood his name but not anything else, so he would ask if she wanted kisses. He is amazed by the communicator. Even though the voice is different than hers, he knows it’s really her talking to him because she calls him monkey toes. She’s able to tell him to do his homework. This allows her to parent her son. It has been one of the biggest blessings for us that you could ever imagine. We’re all grateful. Owen loves his mama. He sleeps next to her every night even though he has a perfectly fine bedroom of his own. He wants to be near her,” Brenda explained.
Both Brenda Linkous and Hancock are encouraging the community to participate in the Walk to Defeat ALS to help raise awareness and funds. Money raised from the walk will provide local care services, such as home visits, support group meetings, medical equipment loan program, and the communication program Mary is using.
“Right now, all we can do is help their quality of life,” said Hancock. “The more advocacy and funding we give the disease, the closer we get to finding treatments and a cure. We need everyone to band together to help us.”
The Walk to Defeat ALS is The ALS Association’s biggest annual event. There will be several sources of entertainment for walk participants at the Tri Cities Walk, including live music by The Catfish Frye Band and Elvis impersonator Matt “Elvis” Dollar. The Dobyns-Bennett High School cheerleaders will be on hand to root participants on during the walk, and several food trucks will provide an opportunity for participants to refuel.
Register online or in person at 10 a.m., Oct. 15, at Warriors Path State Park. Participation in the walk is free, although participants who raise or make a $100 minimum donation to the ALS Association receive an official walk T-shirt.