Ex-NFLer Tim Shaw fights ALS: 'What I see is a lot of hope'

NASHVILLE, Tenn. – His gait is slower now, his speech more slurred, but 14 months after he was diagnosed with the deadly disease ALS, Tim Shaw still hasn't lost his sense of humor.

On Tuesday, Shaw, the former Livonia Clarenceville star who played six NFL seasons for four teams, hopped in his black Range Rover Sport and made the 15-minute drive from his home in a gated community in Nashville's west end to his attorney's office just across the Cumberland River from LP Field.

For three years, Shaw spent his Sundays covering kicks and busting wedges for the Tennessee Titans inside that stadium. But as he pulled into a parking space across the street from a four-story brick building, the gladiator who once looked and felt invincible to the rest of the world was, in a very real way, confronting his mortality.

Shaw took the elevator to the third floor and for nearly half an hour sat inside a small conference room signing papers and making small talk about Vanderbilt football, driverless cars and his own free football camp this Friday at Clarenceville High.

His last will and testament covered 15 pages, required 14 signatures and splits his estate, when the time comes, among family, charities and friends.

He signed a living will with instructions on what medical treatment he wants if he's ever incapacitated.

And, with it becoming increasingly more difficult for him to write his own name, Shaw, 31, signed a power of attorney giving his father the right to make financial and other decisions on his behalf.

"It's a good thing he loves me," Shaw said jokingly as he scribbled illegibly on the bottom of the paper.

A few hours later, after a trip to the dentist's office for a couple of fillings, a quick photo shoot and a light workout in the basement of the 6,000-square-foot home he bought last fall and shares with his parents, who help him with daily life, Shaw said he first talked with an adviser about doing a will last year but only recently summoned the courage to finish it.

"Today was the easiest part of that process, but it's been difficult to face my — face the fact that I'll die," Shaw said. "We're all going to die by the way, in case you didn't know. It's difficult to look at your life and say, 'OK, well what's going to happen when I die? Who's going to get my money or my stuff or whatever?'

"All these things that you don't want to think about, and they're not fun to think about. It's not fun to think about filling out paperwork about when I'm — if I'm on a ventilator. Like, will I be put on life support? Those things are not fun. But those are grown-up, real things we have to think about whether you have a diagnosis or not."

Shaw's diagnosis, amyotrophic lateral sclerosis or Lou Gehrig's disease, came April 17, 2014, from a doctor at Vanderbilt University, though his body began betraying him more than a year earlier.

A backup linebacker whose career was founded with fearless play on special teams, Shaw began experiencing twitching and weakness in his right arm late in the 2012 season, when he played all 16 games and made two starts for the Titans.

Team doctors, thinking he had a pinched nerve, ordered MRI exams on Shaw's shoulder, but when the tests showed nothing wrong, he continued to play.

The weakness persisted in the spring of 2013, when Shaw had trouble lifting weights. And by the time training camp started that summer, it was clear something was wrong.

"I remember a specific drill in preseason with the Titans," Shaw said. "We were doing this punt coverage drill and all we're doing is running and crossing behind someone to like fill each other's lanes or just play off each other as far as going to make a tackle. And I fell, like on my own. No one was on me, no one was near me. I just tripped and fell, and it was embarrassing. You know, your boys getting on you a bunch. But it was in a moment like that, that I knew never would I ever have fallen before. I'm like, 'Something is wrong.'

"

Shaw played three games with the Titans that preseason and was part of the team's final roster cuts, and he spent the fall working out for teams — he had one tryout with the Houston Texans and couldn't make another with the Lions because it was on the same day as his former Penn State teammate Brandon Ream's funeral — and visiting doctors trying to find out what ailed him.

He saw a Nashville-area neurologist that October and again a couple of months later, and was referred to Dr. Peter Donofrio, the director of the division of neuromuscular disorders at Vanderbilt University Medical Center, in March 2014.

It was around that time that Shaw, with his body weakening, officially retired from football, and Donofrio diagnosed him with ALS at a follow-up visit a month later.

That night, three days before Easter, Shaw broke the news to his parents, his older brother, Steve, and Steve's wife in an emotional phone call.

"We had a small island in the kitchen, we gathered around there to listen to the phone," said John Shaw, Tim's father. "So there were four of us adults there around the phone and he could barely get the words out."

'A million lessons'

These days, Tim Shaw speaks much more openly about life with ALS — and make no mistake, he is living — and what may have caused him to contract the fatal disease.

In the months after his diagnosis, Shaw made mission trips to Haiti to help build an orphanage and Brazil to help dig wells for indigenous people. Both trips — the first was planned before his diagnosis — were the extension of outreach work he has done for years and a charitable gene that was passed down from his mother and father, who served as foster parents to children between birth and adoption for 21 years.

This year, Shaw has done even more traveling.

He, Steve and his younger brothers, Pete and Drew, took a bro-cation to West Palm Beach, Fla., in April. He went to Cabo San Lucas, Mexico, for a week, spent two more in Australia and New Zealand (where he climbed a waterfall, went bungee jumping and swam with dolphins) and has taken short trips to Washington D.C. and Northern Michigan for speaking engagements and to help drum up financial and legislative support in the fight against ALS.

On Tuesday, before signing his will, Shaw spent about 90 minutes in a planning meeting for a Muscular Dystrophy Association Muscle Team dinner and auction scheduled for Oct. 6 in Nashville. He's on the executive committee for the event.

This week, he'll travel to Michigan to run his football camp for students in Grades 4-12 for the sixth straight year. More than 150 campers are expected.

"It's humbling to be in the position that I'm in and to be able to use my platform for this," Shaw said. "I never would have chose this. It's easy to stand up and fight for a cause that's your cause. I have ALS, of course I'm going to try to help ALS. It's been forced upon me. But once it's in my lap, now it's my choice what I do with it and I'm just humbled to use my platform to fight for this cause, and what I see is a lot of hope generating in people with ALS and the more and more I meet people with ALS the more inspired I am."

One question that remains unanswered, as Shaw wages war on a disease that afflicts more than 5,600 people annually, is what role — if any — did football play in his illness?

According to the Mayo Clinic, ALS, a neurodegenerative disease that kills the nerve cells that control muscle movements, is inherited in just 5-10% of cases.

Shaw, who started playing football as a 12-year-old sixth-grader for the Livonia Eagles, said his case is not hereditary.

"I have no idea (what role football played)," Shaw said. "I want to know. I want the current players and people who put their kids in football, I want them to know whether ALS is a possible side effect of football, so I think research needs to be done. I think the NFL needs to step up and do some fund-raising for head trauma.

"Maybe it's too close to home for them, but they need to step up and say, 'OK, let's do head trauma awareness month maybe instead of breast cancer awareness.' Let's do something that makes sense for the game of football. And what a powerful vehicle that would be to raise funds."

Shaw, one of several prominent former NFL players with ALS, including Steve Gleason and O.J. Brigance, said he receives NFL disability payments and expects a settlement from the $765-million concussion lawsuit as early as this year. According to terms of the agreement, players diagnosed with ALS are eligible for payments of up to $5 million.

"They don't (acknowledge football can cause ALS), but I'm covered under NFL disability," Shaw said. "So I don't know what that says, but it says something."

Despite the possibility that football contributed to his condition, Shaw said he still loves the sport, and if he had a son would let him play the game.

"I don't blame football at all," Shaw said. "No regrets about how I played or anything like that. The game has given me so much. It's given me so much opportunity, so much experience. Relationships. It's taught me a million lessons. It's really helped make me who I am."

'A stinking disease'

When Shaw left Penn State in 2007, he bench-pressed 225 pounds 26 times at the NFL combine. On Tuesday, in his makeshift basement gym, where he charts his workouts in a spiral notebook that sits on a glass table across from a spare bed and elliptical machine, he did single sets of curls and presses with aerobic dumbbells weighing 2 to 6 pounds.

"If you really want to test your manhood, pick those up," Shaw joked. "It's kind of like wearing pink, it takes a certain kind of man to pick up 2-pound weights. Now, I would never pick up 2-pound weights while wearing pink. I'm not enough of a man to do that."

Shaw weighs 215 pounds, down about 20 from his playing weight in the NFL, but he said his muscles have deteriorated to the point that he can no longer do a push-up.

He still golfs a few times a week, and while he's not the 10-handicap he used to be, he did shoot a 90 one day recently. He plays old-man golf now, short and straight, and could probably finish his favorite Nashville-area courses, Gaylord Springs Golf Links and Hermitage Golf Course, with four clubs: a driver, three wood, pitching wedge and putter.

There are other changes, too, most that someone just meeting Shaw would not notice but those who've known him for years can plainly see.

Balance is an issue to the point he has to consider every movement he makes. Occasionally, Shaw will stumble when he walks the 15 steps from his walkout basement upstairs to the living area. Last week, he looked into getting an elevator for his home.

He can't use his pinkie fingers like he used to, or extend his thumbs straight up in the air. He has devices to help him put on his socks and button shirts. His father helped him pull his old Titans jersey over his head for pictures for this story. And sometimes, he'll use his better left hand to start his car.

"I think the disease has made him more emotional," said Shaw's mother, Sharon. "That's one of the characteristics of ALS. Physically, he's obviously losing strength, his gait is different, his hand strength is very different. So it's hard to watch that slow deterioration and considering where he's been in life, an elite athlete, it's very hard to accept that that's what's happening to his body.

"He has been, probably since fifth grade, one who exercised and took care of his body and he was careful what he ate quite a bit of that time, so that's one of the frustrations with me about the disease. Someone who's been so careful with his body and his diet and that really means nothing when it comes to this disease. It's just a stinking disease, it really is."

Sharon handles most of the cooking now — John helps Shaw, who's part-owner of HOTBOX Fitness gym and 15 short-term rental lofts in downtown Nashville, with business operations — and Shaw has changed his diet to help manage the disease.

Typically, he eats two meals a day, a big breakfast at 11 a.m. and a sizable dinner around 7 p.m. He had a spinach, ham and egg omelet, a bowl of fruit and potatoes with cauliflower for breakfast Tuesday, and a chicken stir fry with mushrooms, onions, peppers, leaks and zucchini for dinner.

He also drinks a concoction labeled "Tim's elixir" from his refrigerator, a mix of magnesium chloride and orange juice, and two small bottles of the soy beverage Haelan 951 daily. For desert, he has nine homemade chocolate squares loaded with coconut oil.

But even as he tends to his body with yoga and massages and a meal plan that's designed with fasting principles in mind to let his organs focus on their primary responsibilities (and has so far alleviated the body cramping he experienced for months), Shaw is realistic about his road ahead.

"We believe that the diet is not going to cure, but just giving your body the proper nutrients will help in some way or another," Shaw said. "So that's the goal with that. By no means do we believe that a diet is going to change my circumstances."

According to the ALS Association, the average life expectancy of someone with ALS is two to five years from the time of diagnosis, though up to 10% of patients will survive 10 years or longer.

Shaw, who spent hours one day recently recording his voice for software that will computer-generate words in his tone in the event he can no longer speak, is determined to be in that group of survivors, and determined to bring others along with him.

That's the message he shares when he speaks to groups or individually when he meets others with ALS, and that's the message he has to remind himself of at times, too.

"A couple weeks ago we both had a rough morning, separately, and then when we came together and I made some comment about that he seemed that he was kind of down and he goes, 'I woke up this morning and remembered that I had ALS,' " Sharon said. "And the good part of that statement is that sometimes he can forget he has ALS, but then the crash of, 'Yeah, it's there, it's in my face.' But on the whole, he's amazingly strong and positive and hopeful and that's great. That's really good for him."

Shaw does his best to stay positive by living a normal life — still a bachelor, he plans to throw a pool party once the pool at his house is finished — and by cherishing events such as his upcoming camp, which many in the Clarenceville community will come out to support.

"My message right now is I want to inspire people to change," Shaw said. "I don't want to make someone think, I don't want someone to feel bad for me, I don't want someone to say, 'Oh that's too bad.' I want someone to look at their life and say, what am I doing right now that I need to eliminate? Or what do I need to do, what really matters? Because I believe as a society we're wasting someone's time and we do so many things that are worthless or wasteful and I don't do that anymore.

"It's sad that a lot of times we need a reminder, like I have, to live that way, but even I want you to go home and say 'I need to stop doing this' or 'I need to start doing this,' whatever it is, and I don't want you to think about it, I want you to do it. And that's what I want people to, when they see me, when they meet me, when they read about me, I want them to change and change for the better.

"I want people to understand that doing something for someone else is so much better than doing something for yourself. Doing something for someone else brings so much more fulfillment, it brings so much more joy, and the more people we can get to do that, the better everything's going to be. That is what is so impressed upon my heart."

Contact Dave Birkett: dbirkett@freepress.com. Follow him on Twitter @davebirkett.

Meet Tim Shaw

Age: 31.

Lives: Nashville, Tenn.

High school: Livonia Clarenceville.

College: Penn State.

Noteworthy: Shaw was a star running back at Clarenceville and a starting linebacker for Penn State. He was drafted in fifth round by the Carolina Panthers in 2007 and played six NFL seasons for four teams, recording 127 career tackles and three forced fumbles.

About ALS

According to the ALS Association: "ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe."

How to help

Several foundations and associations accept donations to help in the fight against ALS. Among them are the ALS Therapy Development Institute (alstdi.org) and the ALS Association (alsa.org).

Tim Shaw football camp

When: 5:30-9:30 p.m. Friday.

Where: Livonia Clarenceville football field, Middlebelt between 7 and 8 Mile.

Notable: Free. For kids in Grades 4-12, noncontact, focusing on football and speed skills.

To register or for more information:timshawfootball.com.