As Dan Soyka's illness progresses, his care gets more involved.
This time last year, his wife Lisa Soyka, had watched Dan's condition downgrade from his usual wise-cracking, life-of-the-party self to not being able to speak or swallow.
Now his condition is even worse.
Dan still uses a syringe to eat and drink through a feeding tube. He breathes with the help of a tracheotomy tube. He's starting to lose the ability to walk, and has an increasing dependency on his wheel chair. He also has to be lifted to use the bathroom.
"He doesn't have much leg strength left," Lisa said.
Dan, 35, is diagnosed with ALS, an incurable disease that slowly degenerates nerve cells in the brain and spinal cord, in essence, hindering voluntary muscle movement until a person is essentially trapped in their own body.
It is believed an ALS patient's mind is not affected, but Lisa says her husband seems to have impaired cognitive functioning.
ALS, also known as Lou Gehrig's disease, effects five out of 100,000 people, usually over age 50, according to the U.S. National Library of Medicine. A person typically lives three to five years after diagnosis.
Dan was diagnosed almost two years ago.
Making the Best of ALS
Although they lived in Georgia, Lisa and Dan wed in Dunedin just a few months after he learned of his diagnosis.
Several months after that, in October 2011, Dan's younger sister Autumn Soyka, to whom he was very close, was killed after being struck by a drunk driver in Charlotte, NC.
Lisa immediately picked up and moved back to Dan's hometown of Dunedin, where he still has a tight-knit support group of family and friends.
Lisa is focused on making Dan's life the best it can be.
She has since gained part-time employment at Tampa Bay Veterinary Specialists & Emergency Care Center. She said it offers a good work schedule that allows her to be with her husband during the week, but also gives her the chance to focus on veterinary medicine, a passion.
Lisa said she likes to take Dan to the beach or on walks, but lately he hasn't been able to sustain those activities for as long, and not without his wheel chair. Pushing Dan in his wheel chair while going on walks is cumbersome, too, because of their two big dogs. She anticipates the need for a motorized wheel chair soon, which means she'll also need a minivan for transportation.
"It's constantly changing," she explained, while sitting at an outside table at Kelly's. "Things change so quickly we don't have the time to get used to it."
And she hates to admit, but it's not easy watching the love of her life slowly degenerate.
Lisa's sister-in-law Jill Piotrowski and her husband (Dan's brother) recently moved from San Diego to help.
"It weighs heavy on everyone," Piotrowski said to Lisa. "We all do go home (at night) and you don't."
Two caregivers are also now helping to alleviate some of the day-to-day responsibilities, and they both make a world of difference, Lisa said.
But the cost of the caregivers is not covered by health insurance or Medicare.
That's where Our Friend Dan comes in.
Friends, Family Inspire Community Support
Dan's tight-knit group of family and friends gave themselves the moniker and rallied to his side. They organized and solicited artistic donations for a community auction, culminating with a raging party at the Dunedin House of Beer — all with one goal in mind: take some financial burden off of Dan and his wife.
Last year's fundraiser allowed Lisa to pay off all of Dan's medical bills from a lengthy hospital stay — a huge relief.
She credits the help of the community for the ability to provide Dan with the quality-of-life care he deserves.
Dan has health insurance, Medicare and life insurance from Autumn, but not everything is covered, and still some things require pricey co-pays, Lisa explained.
After insurance, she said she is still paying about $34,000 a year on Dan's medical needs: from monthly medical equipment rentals like breathing tubes and the feeding pump, to smaller purchases and co-pays like gauze for his trachea tube and suction catheters to keep his trachea clear (not to mention, the cost of his caregivers).
"Everything adds up," Lisa said.
Not if Our Friend Dan can help it.
Saturday the group is ready for round two in Dan's fight against ALS, and this year's party for their once wise-cracking friend promises to be better than the first.
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Want to Go?
- When: Saturday, Jan. 19; 6 p.m. to close
- Where: Dunedin House of Beer
- Why Go? Two bars will be outside, along with a food truck (Michelle Faedo's on the Go), and $1 from every beer purchase goes to help Dan. Also enjoy raffles, a photo booth, and a rockin' music lineup to suit everyone's favorite genre.
- Live band lineup: Geri X, Wolf Face, Rob Pereira, Simply Abigail, The Hot Rod Hornets
- More Info: 2nd Annual Our Friend Dan Bash