by Joy Hollowell - June 24th 2013 08:26pm -
That's how Jim Kingsbury describes his battle with ALS.
TV-5 has been following the Kingsbury family for more than four years, tracking their struggles as well as their successes.
Joy Hollowell has the latest update.
7-year old Jack Kingsbury enjoys spending time with his Dad. He was just a baby when Jim Kingsbury was diagnosed with Lou Gehrig's disease back in 2007. For the first few years, Lisa cared for Jim at home. A round the clock job that included parenting Jack as well as working a full-time job.
"He definitely got beyond my scope," says Lisa Kingsbury. "I felt like it was getting dangerous to keep him home."
About two years ago, the Kingsburys made the difficult choice of placing Jim in a nursing home in Biddeford. It is one of just a few facilities in the state that can adequately care for him, but the nearly three hour commute from Dover-Foxcroft is tough on Lisa and Jack.
"It's hard not being involved in his day to day care," admits Lisa. "That was a huge adjustment."
The disease has robbed Jim of his ability to move and to speak. But thanks to technology, he can still talk and interact.
"Oh, he's on Facebook all day," says Lisa with a smile.
Jim uses a DynaVox. By blinking or even just hovering his eyes over the keyboard, he can type out his thoughts, which a computer-generated voice then relays.
"Monday is date night," says Lisa. "Actually, it's been date night every night, lately," she adds with a smile. The two communicate via Facebook. "After Jack goes to bed, we sit and watch television. Mondays, it's Bones, and Thursdays, it's Master Chef."
ALS is a fatal disease and Jim has managed to surpass the predicted longevity of two to five years. But now, both he and Lisa are preparing for the day Jim loses his ability to move his eyes.
"Without being able to communicate, it would be hard to imagine prolonging this," says Jim Kingsbury.
"We have a plan,"says Lisa in a soft voice.
"We have tried to stay ahead of the hard decisions," adds Jim.
"We've said our goodbyes because we know in all likelihood, I probably won't be here when it happens," says Lisa, pausing a moment to hold back tears. "We've been lucky. Most people don't get the opportunity to say good-bye. We've had that conversation."
Since the start of our series, Jim has been asked how he copes with the cards dealt. Taking it one day at a time has always been his motto, and still is today.
"I still enjoy life," says Jim.
"We're enjoying the time we have together," adds Lisa.
Thanks to Skype, Jim was able to see his oldest son graduate from college and get married. A camera at the reception enabled Jim to watch the cake cutting and first dance.
Jim says he allows TV-5 to continue showing such a personal aspect of his life because he wants more people to understand what Lou Gehrig's disease is all about.
He welcomes anyone to contact him on Facebook. Just search under James Kingsbury.