HOLIDAY — Mike Mision loves to talk politics. He enjoys fishing with his son, Michael, and watching silly YouTube videos with his daughters, Sierra and Melissa. He’s an accounting whiz, a Doctor Who fan, a lover of the outdoors.
He’s also lives with a terminal illness that prevents him from doing most of these things now.
Mike was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, in 2009 after slurred speech and random falls prompted his wife, Sandy, to research his symptoms online. Thinking he may be developing Parkinson’s disease, the Misions sought medical attention and learned that ALS was the culprit.
“My first response was ‘What’s the treatment?’ and they told me it was terminal,” said Sandy. “I just froze. I said: ‘No it’s not. No, it’s not.’ I knew Lou Gehrig the baseball player. I knew nothing about Lou Gehrig’s disease.”
ALS is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord, eventually leading to total paralysis and death.
In less than a year, Mike changed from an active insurance benefits analyst, father and husband to a man who relied on a wheelchair. His health continued to decline and now Mike is bed-bound. The hum of his oxygen machine is only interrupted by the occasional mechanical words and broken sentences from the speech device that has replaced his lost voice.
The speech device, which looks like a tablet suspended above Mike’s bed, has a retinal camera display that reads his eye movements. By focusing on one painstaking letter at a time, Mike can type out words and short sentences the computer turns into sounds.
“Make screen bigger please and the hobbit movie pain medication,” Mike said to his wife through the speech device. He wanted a bigger screen to watch “The Hobbit” on and some medication to dull the pain.
This July was the only month Mike hasn’t been taken to the emergency room or admitted to the hospital. Many of the antibiotics and other medications Mike has been taking for years are no longer effective, so even a slight fever could prove fatal.
Mike’s life revolves around oxygen tanks, catheters, dozens of medications, bed baths and, the worst part, being fully aware in a body only capable of minor facial expression and neck movements.
Despite the ravages of ALS, Mike remains fully aware of everything going on around him. “Yet people act like he’s as vegetable and like his brain is not there and like he’s not going to be able to respond and he does,” Sandy said. “Nurses have come in and talked loudly like he can’t hear them.
“These things are baffling, frustrating, they add to the battle. There is not enough awareness about what this is and what it does to people.”
Mike’s care is costly. When Sandy lost her job in 2011 as retail advertising assistant for The Suncoast News, her unemployment checks were barely adequate. She and her children lost their health insurance. Mike is covered by Medicare but it doesn’t pay for everything, and the bills kept wracking up.
Since Mike requires around-the-clock care and Medicare only pays for 10 hours of home health care, Sandy can’t work. She put him in a nursing facility so she could get a job and catch up on bills but the treatment was horrendous and he was miserable, Sandy said.
“I regret it and I’ll never do it to him again,” she said, fighting back tears. “He wants to be home and that’s where he deserves to be.”
They’ve pared down their expenses to basics such as utilities and Mike’s increasingly expensive life insurance policy,. Sandy said they have to pick and choose what bills to pay some months and rely on local churches, food stamps and community resources to scrape by.
They’re seeking another modification in the mortgage on the house they’ve shared for 21 of their 26 married years so they don’t lose it.
“We just do the best we can do to get by each month,” Sandy said. “We’re trying to make paying his life insurance the priority.”
In August, oldest daughter Sierra, a University of Florida graduate who now works for an AIDS foundation in California, surprised Mike and Sandy with $1,655 raised through the fundraising website GoFundMe.com. She explained online that her hardworking, dedicated father had too much pride to reach out for help, even if he could, so she was asking on his behalf.
“Every dime — and positive thought — means the world. Thanks,” wrote Sierra in the fundraising appeal’s profile.
The money helped with utility bills.
“I was elated,” Sandy said. “I was shocked. I was crying. I said: ‘Sierra, you have so much to take care of for yourself for you to even take the time for a thought for your parents ... it’s pretty amazing and I’m really proud of you for that.’ ”
Facing rising life insurance rates and four months behind on their mortgage, the Misions need help.
Sandy set up a Giveforward.com account online in the hopes of raising $3,000 to pay for a year’s worth of life insurance for Mike. With that out of the way, they can focus on getting caught up on their other bills.
Sandy said her 49-year-old husband is in the final stages of ALS. She quietly sobs at the thought.
“It’s heartbreaking. It’s so heartbreaking.”
To make a donation to the Mision family go online to https://www.giveforward.com/fundraiser/ytx2/the-toll-of-als-lou -gehrig-s-disease.