PHOENIX – We’re just days away from the annual MDA Telethon.
We all know that the money raised during the telethon goes to fund research and provide amazing services to help those diagnosed with various form of muscular dystrophy, but it’s not just the patients who benefit. It’s those who love them, too.
Greg Ward speaks through a special computer-based communication device. Although the voice is monotone, it cannot hide his obvious pride he feels when he talks about his new grandson.
“I’m excited because we’ll get to watch him grow up and grow through all the changes a new baby goes through,” Ward explained.
He is going through some changes of his own. Ward was diagnosed with ALS -- amyotrophic lateral sclerosis – in 2009. His life has not been the same since.
Neither has the life of his wife, Joyce. She has had to watch as the disease progresses, slowly robbing her husband of his physical abilities.
“This disease is heartless,” she said. “It takes your dignity. It changes your world. People do not understand the devastation is causes.”
ALS, also known as Lou Gehrig’s disease, attacks the nerve cells in the brain and spinal cord. Those cells control voluntary movement. As the disease takes hold, those cells wither away and die, taking with them the ability to send messages to the muscles.
“He was always so strong, 210 pounds of pure muscle,” Joyce said.
Without those all-important messages to control all of that pure muscle, Ward can no longer move his hands, he can barely stand up and cannot walk at all. In time, he will not be able to move his arms, legs or body.
He’s also losing an ability most of take for granted, the ability to talk, hence the computer.
As the disease gets worse, the muscle in his chest will stop working and he won’t be able to breathe by himself.
Although Ward’s body is ravaged by the disease, his mind and his senses not affected. Some say that’s the most insidious part of ALS – a sharp mind is trapped in a body that no longer works as it should.
“He’s the same person,” Joyce said. “His body is withering away, but his mind hasn’t changed.”
That’s something few can fathom. Some people, perhaps even friends, start to pull away, perhaps not understanding that now is when Greg and Joyce need them the most.
“As the disease progresses, it's uncomfortable for people,” Joyce said. “It's as though the disease scares them so they shy away. They don't visit as often. They kind of pretend it's not happening. We wish we could do that but we have to live it every day.
“Human beings still need love and hugs and kindness. He’s still my husband,” Joyce continued tearfully. “We still need to do the best we can every day.”
To that end, the Wards have found caring support at the Barrow MDA Clinic at St. Joseph’s Hospital.
The clinic specialized in patients with ALS and other neuromuscular diseases, coordinating not just physical care, but psychosocial care, as well.
“When I came, I was just blown away,” Joyce said.”It's so thorough. You see neurologists, physical therapists, nutritionists. They want to do whatever they can to help and make it better.”
At this point, there is no known cure for ALS. Patients often die within three to five years of diagnosis. About 25 percent of ALS patient live longer than five years.
It’s not enough.
“The research needs to be done to find the answer and they need to move forward, but you got to have money to do that.”
And that is where you come in. Your donations to MDA can make that research happen. But it's not just about the research. It's far more personal than that. Your contribution will help ensure that people like Greg and Joyce Ward get the assistance and support they need.
This year’s telethon features a new format. Rather than a 21-hour marathon over two days, it’s a jam-packed 6.5 hours on Sunday, Sept. 4. It starts at 5:30 p.m. on 3TV, and runs all the way through 12:30 a.m.
Your donation will go a long way to supporting the wonderful work MDA does 24 hours a day, 365 days a year, and it will impact the lives of real people – people like the Wards and their new grandson – more than you can ever imagine.