08/14/2005
SCOTT PATSKO , Morning Journal Writer

In late January, Tom Stallings stood before his students at Huron High School and told them he was leaving.

He tried to be optimistic. He told them he hoped to return before the end of the school year, but admitted the chances were pretty slim.

The students understood. They had watched Amyotrophic Lateral Sclerosis (ALS) deteriorate their math teacher's speech, writing and mobility.

Now, seven months later, Stallings is over the fact that he won't be returning to the school where he taught for five years.

It's just one more thing he has learned to cope with.

''I'm coming to accept that I have to rely on other people,'' he said. ''I'm not really independent anymore.''

On Aug. 13, 2003, Stallings was diagnosed with ALS, also known as Lou Gehrig's Disease, a terminal disease which causes degeneration in the brain and spinal cord. While the average age of diagnosis is 55, Stallings was only 36 at the time.

ALS patients are given 2 to 5 years to live after diagnosis. Stallings' two-year anniversary came yesterday. But Tom and his wife, JoLynn, aren't dwelling on that.

There are too many other things to deal with right now, like finishing their new home, getting Tom to doctor and therapy appointments, taking part in medical studies, finding a few extra hands for JoLynn and coming up with the money to pay for everything.

''The final bills are coming in for the house now,'' said Tom. ''We have to sit down and figure everything out and make sure we have money left over for the garage because money is tight.

''We're not sure how it's going to work out.''

In May, Tom, JoLynn, their twin 1-year-old girls JamieLynn and TaylorLee, and 4-year-old son Jordan, moved from Huron to their new home in Norwalk. The one-level ranch makes it easier for Tom to maneuver -- no steps, and large doorways for wheelchair access. But nearly three months after moving in, the house still needs work.

The roof over the porch is held up by beams, the garage is currently just a slab of concrete and the landscaping isn't done. The basement is filled with boxes waiting to be unpacked.

''There is still quite a bit to do yet,'' said Tom. ''But we're in and the house is livable.''

Tom just recently began trying out motorized wheelchairs. They hope to install a chair lift to carry Tom into the basement so he can use what will be a therapy room.

They also hope to install a rail system that can carry Tom from the bed to the bathroom or a wheelchair. But it will be costly -- $13-$19,000.

One of the motorized wheelchairs Tom is test-driving costs $25,000. That's without accessories. Insurance should cover the base model of the chair.

''To me it's unbelievable that they charge that much,'' said Tom. ''I've never paid that much for a car.''

Tom and JoLynn are hoping their doctors will qualify for a grant to cover the cost of Tom's inclusion in a national study. The study involves surgery to insert a device that strengthens the diaphragm. The surgery would cost $11-$12,000.

But first, Tom must qualify for the study, something he thought would be no problem until June. That's when he took a breathing test and found that his breathing had actually improved.

Tom's breathing needed to be between 40 and 85 percent of normal. After being between 80 and 85 for six months, he jumped to 89/90.

''It's good that it's not getting worse,'' said Tom. ''It actually got a little better. It doesn't seem any different to me. But that means I'm not eligible for the study right now.''

While Tom waits to find out when he can test for the study again, he focuses on doctor visits and therapy. He recently started water therapy.

Making appointments was difficult while he was teaching. Doctors wanted him to go to physical therapy three times a week, occupational therapy twice a week and massage therapy once a week. He was lucky to make two or three appointments per week.

It got easier after Tom stopped teaching, but then he stopped driving in March, creating logistical problems.

''We always have to have someone watch the kids,'' said JoLynn. ''We moved his massage therapy to Norwalk, but we still need a baby-sitter.''

Receiving physical therapy at home would help, but Tom would have to prove he is homebound, a point he hasn't yet reached.

They have looked into in-home care to take some of the load off JoLynn. Even when everybody is home, she often needs someone else around to help out. Tom can be her eyes and ears when it comes to the kids, but when the twins are running in two different directions, he can't chase them.

They currently have baby-sitters at the house four days per week, covering at least four hours per day. JoLynn recently placed a newspaper ad looking for more help.

''It's never enough,'' she said. ''I'd like to have somebody here to help with housekeeping so I can refocus and do the things only I can do.''

Like help Tom.

When he quit teaching, Tom was able to shuffle around on his own two feet. He could get in and out of chairs on his own, and his left hand still functioned relatively well.

Now Tom uses a cane to walk and spends much of his time in a special recliner that can lift to help him sit or stand.

''For a while I could get out of my lift chair on my own,'' he said. ''But even that chair requires somebody's help now. Every now and then I can get out by myself, but it takes a lot of effort.''

But he has had a couple nasty falls.

Before moving to Norwalk, Tom fell in their house and suffered a concussion. Shortly after moving to Huron, he fell and hit his head on a washing machine, knocking the wind out of him and wrenching his neck.

Tom's physical appearance remains as it did when he was teaching, save for his left hand. The fingers are curling like those on his right hand. It's easier for JoLynn to hold a cup to Tom's mouth as he takes a sip than for him to hold it himself.

They are working on setting up an office with a computer that's easier for Tom to use. Special software could allow him to type with voice commands.

''Right now I type with one finger,'' he said, ''and it's hard to hold up my arm just to do that.''

While much has changed for Tom this year, the support his family has received remains strong.

At least 40 people helped them move from Huron to Norwalk. Volunteers helped with painting, a friend from church built a mantel, others planted trees and put shingles on the roof.

''Our pastor called it Extreme Home Moveover,'' said JoLynn. ''There are two parts to that. One, they wanted to help us move over from Huron to Norwalk. The other was, ÔHey, move over and let us help.'''

Friends set them up for four days at Castaway Bay while their old house was packed up for the move.

''So many people helped us,'' said Tom. ''It's unbelievable.''

His students didn't forget about him, either. They helped out in a more emotional way.

During the final week of the school year, Tom was honored at a Huron High School awards banquet with the Choice Award. Normally, teachers give the award to students for character, service and leadership. But this year, students gave one to Tom, making him the first teacher to receive it.

''That was, in some sense, their farewell to me,'' said Tom. ''For them to be able to give me several standing ovations was a nice send-off.''

Looking back now, Tom feels like he went out on top.

''The students were so good to me last year,'' he said. ''I was able to have a positive affect on their lives. It was such a unique opportunity to share what was going on in my life.

''It's somewhat difficult to accept that I won't be able to have that influence anymore.''

Donations to the Tom Stallings Benefit Fund can be made to the Huron Alumni Association c/o Huron High School, 710 Cleveland Rd. West, Huron, Ohio 44839.