Litchfield Township couple fights ALS
Denise Sullivan | Staff Writer Posted:
Tuesday, September 11th, 2007


LITCHFIELD TWP. — Tom Munch used to be an independent salesman who loved talking as much as he loved baseball, traveling and spending time outdoors.

Now the 59-year-old township resident is confined to a wheelchair and is unable to speak, except through a computer or dry erase board and marker.

Munch, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in October of 2005, is living in the garage-turned-apartment of the home he shares with his significant other and caretaker, Cathy Baran. The roughly 10-foot in diameter open space in the room is just large enough for him to maneuver his borrowed electric wheelchair, in which he spends 23 hours each day.

Munch passes the time reading books and newspapers and on a recent August afternoon, watching the Cleveland Indians play the Detroit Tigers.

Baran, a widow, and Munch, who was divorced, met online in 1999 and instantly knew they had a connection.

“We just talked and talked, and we haven’t been apart since,” she said.

Munch, who has three sons, moved in with Baran, the mother of a son and a daughter, in her two-story home with sprawling acres and a pond in the backyard.

“His sons liked coming over to fish,” she said. “We just love it out here; it’s so peaceful.”

Munch sold high-end kitchen and bathroom fixtures and Baran was a nurse, first at a doctor’s office in Willoughby and then for a rehabilitation facility in Westlake.

Life was going along just fine for the couple until they began noticing odd things about Munch’s health, mainly his speech.

“The Christmas before he was diagnosed, his boys noticed his speech wasn’t clear but they didn’t say anything,” Baran said.

In February 2005, when the couple was working in the yard, Baran noticed Munch “just didn’t look right,” she said. He opened his mouth and showed her his tongue, which was extremely swollen.

That May, Munch was misdiagnosed as having Myasthenia Gravis, a nonfatal disease characterized by muscle weakness. It wasn’t until five months later, after taking the wrong medication and growing even weaker, that a neurologist at University Hospitals diagnosed Munch with ALS.

“We were just devastated,” Baran said, with tears in her eyes. “I remember sitting outside the hospital crying so hard while Tom was calling his family and telling them the news.”

In the ensuing months, Munch grew still weaker. He eventually lost control of his speech and the ability to walk and stand. In March this year, a feeding tube was inserted to keep him nourished and hydrated.

Meanwhile, Baran realized she needed to be home to care for Munch, and she quit her job to become an independent caretaker, paid 10 hours each day for her work.

Week after week, one problem or another arose with the filing of Baran’s paperwork, and she didn’t receive a paycheck. Calling legislators in Columbus, who assured her the problem would be fixed, didn’t help, and she ended up going eight weeks without being paid.

“The electric company was out here wanting to shut off our electric,” Baran said. “The van payment and the house payment and all these other bills were due, and there was no money. I couldn’t go out and get a job because I couldn’t leave Tom. By the eighth week, I was out of my mind with worry.”

With some help from friends and neighbors, Baran managed to pay the electric bill, but is still paying penalties for late payments during that time. She is now receiving her paycheck and has been partially reimbursed for the missing wages.

Baran and Munch are now on a mission to bring awareness of ALS out in the open. The two main issues they are pushing for are to create a national ALS registry, so the number of cases can be documented for research purposes, and for faster aid in getting needed items like grab bars, wheelchairs, ramps and lifts.

“Tom needed grab bars (for the bathroom) in April, when he came home from the hospital after getting the feeding tube,” Baran explained. “But the bid didn’t go out until July. At that time, he could no longer stand. We didn’t need grab bars anymore.”

Because of the rapid progression of ALS — the average patient dies about two to five years from the time of their diagnosis — the three- to six-month waiting period for Medicaid assistance is unreasonable, Baran said.

“We don’t have that kind of time,” she said. “ALS doesn’t wait. People need to understand just because you see a patient one month and they can walk doesn’t mean they’ll be in that good of shape next month.”

Baran said that within a week of being evaluated for an electric wheelchair, Munch could no longer walk. The couple is still waiting for a wheelchair, and Munch is borrowing one from a friend, whose husband died from ALS, until then.

They are currently trying to get a chair lift so Munch can join the rest of the family upstairs, in the main living area of the house.

“I need Tom upstairs living in the house, not a 10-foot space,” Baran said.

She urged people to write to their congressmen to convince them to put a bill on the floor that will allow a national ALS registry. Baran also encouraged people to learn more about the disease, and to help by donating money to the ALS Association Northern Ohio Chapter (www.alsaohio.org), the local agency that has helped the couple when possible.

“We’re not going to let (ALS) beat us,” Baran said. “It’s our goal to help other people that are in our situation. No one should have to go through that, dealing with a fatal disease and not getting the help they need.”

Sullivan may be reached at 330-721-4064 or dsullivan@ohio.net.

Sullivan may be reached at wp.medina-gazette.com or dsullivan@ohio.net.
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