BELL BUCKLE, Tenn. (WTVF) — Julie and Joe Taylor have been married for 32 years, and they have known each other since high school.
“We were going through some stuff last night and there were some tape cassettes that we found, and I’m gonna get emotional here, but those tape cassettes actually were ones that Joe made for Julie, and he wrote letters on them. He wrote this beautiful love letter, recorded the songs for her,” Rhonda Tavolazzi, Julie's friend of 37 years, said.
They found out Joe has ALS, or amyotrophic lateral sclerosis, near the beginning of the year. It's a disease where the motor neurons that help you move your muscles start to die, and eventually you can no longer walk, talk, eat or breathe because the brain loses connection with the muscles. There is no cure, and average life expectancy is two to five years.
"In January or February, one of his friends that he works with let me know that he's falling a lot," Julie said. "They were getting scared because they are around re-barb and concrete and he's just face planting all the time."
They got a physical appointment for Joe, but before they could even go he had to stop working because he lost strength in his legs, arms, and hands.
“He couldn’t cut his nails. Open stuff,” Julie said.
“I’d have to use channel locks,” Joe added.”
“He was still walking, but it was a lot better than now. It's changed a lot," Julie continued. "I’ve had to cut my hours back to be home trying to make sure he doesn’t fall. I think it’s getting progressively, rapidly worse.”
Eventually — after a neurologist appointment, a neuromuscular appointment, and an EMG test — Julie says the doctors started telling them it looked like ALS, which wasn't even on their radar. No one in the family has ever had it before, and it's not something doctors know how to diagnose immediately.
“We kind of have to use our clinical diagnosis, there’s no test that says 'here’s what this (ALS) is',” Director of Vanderbilt's ALS clinic, said. "The concern is the longer we wait, the more muscle and nerve damage they (patients) lose."
She said sometimes patients have a year of symptoms before finally figuring out the diagnosis.
There are two FDA-approved treatments which slow the progress of the disease, but no available cure. Vanderbilt just opened a new research facility to help push forward the process of finding a cure.
"We are doing what we can to be a mover as opposed to a follower. My hope is that in my lifetime as a physician I can see a treatment for a patient that works," Dr. Peltier said.
Julie works 30 hours a week, but wishes it could be less. Their friends gifted them with a power chair and a ramp, so now she knows Joe won't fall as much, but the way their daily lives operate has still changed tremendously. Joe says he's had to get used to being dependent on everyone else to do things for him, and it's been hard.
"My left arm that I used to play baseball? Now I can only lift my arm about right there,” Joe’s arm lifted off of his wheelchair, his fingertips level with his head, arm at a 90 degree angle.
“You need a full time caregiver immediately," Rhonda shared. "I had a phone call July 11 where she (Julie) was hysterical. I ran down there, thank God I’m here, but he (Joe) had to go to the ER. He had 10 staples put in his head. Those situations are really scary. What if she wasn’t home?”
“Is there anything you wish people knew about this disease?” I asked Joe.
“All of it, really,” Joe said. “I never thought I wouldn’t be able to use this leg,” he gestured to his right side.
Julie said maybe being an advocate for people who don't know what ALS is is part of her future now.
"Maybe I need to be an advocate for that because it's just 'you have ALS'," Julie shared. "If it hadn't been for people I met on Instagram with it and then my support group of friends, we wouldn't be where we are today. It's just like we've been our own advocate."
Rhonda shared the same sentiment.
"I think its important to support anybody that’s going through this, not just our friends," she said. “If we can help, we’re gonna help. If it was your brother your sister, your mother your father, aunt, uncle, whoever it is, that you’re there to understand and research it a little bit more because it is a devastating diagnosis.”
If you want to help Julie and Joe through this difficult time, they have a GoFundMe set up for their medical expenses. There is also a benefit for Joe from 4:00 p.m. to 7:00 p.m. on Saturday, October 19. There will be a silent auction, a raffle drawing, food, live music from The Neiighbors, and Joe's personal favorite — TVs streaming the football games. It's taking place at 580 Happy Valley Rd. in Bell Buckle, Tennessee, 37020.
Fostering Hope provides Christmas for kids in foster care. I'm delighted to see Fostering Hope expand this year to expand their reach to now include kids in Foster care in metro AND foster kids in East TN hard hit by Helene.
-Bree Smith
