With tape helping to open his eyes, Dr. Tom Tonniges pecks out letters to form words on his tablet. The doctor has late-stage amyotrophic lateral sclerosis, or Lou Gehrig’s disease. KENT SIEVERS/THE WORLD-HERALD

Defying the silence of ALS

My childhood doctor has ALS. But Dr. Tom is breaking his imposed silence to shout, again, for patients.

By Matthew Hansen / World-Herald staff writer

Saturday, August 22, 2015


The Tonniges family (from left): Jane, Tom and children Chris, Emily and Elizabeth (in front) on a summer vacation in the 1980s. Dr. Tom Tonniges built a wildly successful pediatric practice in Hastings before moving to Chicago to work at the American Academy of Pediatrics.

Dr. Tom Tonniges died Tuesday, surrounded by family at his Omaha home. He was 66 years old. A celebration of the beloved pediatrician’s life will be held Sunday at 4 p.m. at St. Andrew’s Methodist Church. In lieu of flowers, memorials may be sent to St. Michael's Lutheran Church, the Omaha Community Foundation’s Tonniges Family Fund, the AAP CATCH endowment or the Hastings Community Foundation.
***
Joyful cartoon children are painted on the white walls here, children who run and jump and laugh. A half dozen Berenstain Bears books sit stacked in the waiting room, though maybe my mom brought those from home.
Big angelfish glide through the fish tank here, and little sick kids sit in colorful little plastic chairs, and when it’s time, a tiny, redheaded 6-year-old grabs mom’s hand and approaches an impossibly tall counter behind which a smiling receptionist peers down at me. “You are here to see Dr. Tom?” she asks. “Dr. Tom is excited to see you.”
My earliest memories are of this place, and they come back now in fragments and flashes, the stained-glass memories of a childhood that’s now three decades distant.
I often land in the waiting room of Dr. Tom Tonniges’ office because I’m a sickly little kid — constant ear infections, frequent bouts with strep throat, fevers that turn me pale as a ghost and prompt my mom to load my little brother and me yet again in the family Oldsmobile and head the 40 miles north up Highway 281 to Hastings.
I’m a jittery little kid, too: spooked by hospitals, scared of the dark, painfully shy around adults and afraid that when I do talk in my pipsqueak voice, no one will ever hear me. No one will listen.
But once a nurse weighs me, takes my temperature and listens as my mom explains my symptoms, Dr. Tom walks in and the fear lifts like the midmorning fog over our house melts away in the spring sunlight. I remember his crisp white coat, his cherubic face, his crooked smile and his eyes that could flash steel or go soft with concern.
I’m just a kid, so I don’t know that he’s one of Nebraska’s most respected pediatricians, a fierce advocate for children, a man who serves on blue-ribbon panels, an esteemed doctor who will eventually champion a whole new way to care for sick kids on Indian reservations and in war-torn countries.
I don’t know then — he doesn’t know then — that one day a sickness will start to steal his ability to walk and whistle, hug and sing. That his booming doctor’s voice will melt into a garbled whisper and then terrifying silence, until he, too, fears that no one will ever hear him again. Until he knows that he will have to claw and fight to make one last meaningful sound.
I don’t know any of that, but I know one thing when I’m a 6-year-old sitting with my legs dangling off the edge of a doctor’s office exam table in Hastings, Nebraska. I know that I don’t have to be afraid of earaches or strep throat or much of anything.
I know Dr. Tom will keep me safe.

To communicate, Dr. Tom grasps a clicker in his right hand and uses his thumb to scroll through the alphabet shown on the screen. He clicks to choose a letter. Then he does it again, and again. It is painstaking and painful. KENT SIEVERS/THE WORLD-HERALD

The frozen man sits in his wheelchair next to his bed at the west Omaha nursing home, slowly, agonizingly pecking out his answer.
I have asked him about medical home, a holistic style of health care that takes a team of doctors, nurses and specialists and places them around the patient like a series of spokes in a wheel.
I have asked him: Dr. Tom, when did you roll the concepts of medical home into your practice?

“This is an awful disease. But here’s the amazing thing: He’s still working, still passing on these parts of himself. It’s indescribable. It’s incredible.”
Dr. Terry Zach, chairman of pediatrics at Creighton University and a longtime friend

The answer appears a letter at a time, maybe one word a minute, because the 66-year-old man cannot speak or type normally or even communicate with facial expressions or hand gestures.
One of the most terrifying parts of Lou Gehrig’s disease, or amyotrophic lateral sclerosis, is the realization that his brain is producing thoughts and opinions and punch lines just as it always did. But the disease has stolen his ability to move them out of his brain and into the world. It has stolen that ability even as it has left him entirely aware of what he’s lost.
Now he can move only his right thumb.
He grasps a clicker in his right hand and uses the thumb to scroll through the alphabet shown on his computer screen. He clicks to choose a letter. Then he does it again, and again.
It is painstaking and painful, and so he groans softly as he works.
Most of my medical home ideas started in Nebraska, he types. You were a part of it.
“As a patient?” I ask.
He can still move his eyes ever so slightly. He moves them up to say “yes” and pushes them to the side to say “no.”
He rolls his eyes skyward to answer my question, then starts typing again.
After a minute his answer becomes clear.
G-U-I-N-E-A P-I-G.
I laugh and notice the darnedest thing: Despite having almost no control over any part of his body, his expression has changed.
I can tell that somewhere deep inside himself, Dr. Tom is laughing, too.
“This is an awful disease,” says Dr. Terry Zach, chairman of pediatrics at Creighton University and a longtime friend. “But here’s the amazing thing: He’s still working, still passing on these parts of himself. It’s indescribable. It’s incredible.”

The walls of Dr. Tom's room are filled with hundreds of notes from family and friends. KENT SIEVERS/THE WORLD-HERALD

Incredible is not a new concept for Dr. Tom Tonniges.
The native of tiny Gresham, Nebraska, soared through medical school and then built a central Nebraska pediatrics practice that functioned both as a small-town doctor’s office and a cutting-edge lab — a one-man study on how to better practice medicine.
He would see regular patients like me, who had the sniffles or an upset stomach. He would dash over to the hospital to deliver a baby. He took special interest in developmentally disabled children as well as kids with severe behavioral issues. He spent nearly every weeknight at a meeting, because he served on the school board, the museum board and countless others.

Tom on a trip to England, at top, and with grandchildren Rachel, Hallie and Zachary Tonniges. Tonniges made a point to smile at every child he knew, and also often traveled to war-torn and poverty-ravaged countries to advocate for better health care for children there.

All the while he was building a practice around the philosophy of the medical home, amassing a small army of loyal specialists, nurses, mental health professionals and social workers who shared information and expertise and worked together to solve the medical riddles of the Hastings area’s youngest, sickest patients. This was in the 1980s, when most patients’ medical histories were buried inside filing cabinets at the offices of their various doctors and specialists, and those doctors rarely talked. Meanwhile, in Hastings, they were getting so good that the steady stream of children they had to send to an Omaha hospital slowed to a trickle and then simply stopped.
“In those days we didn’t call it medical home,” says Zach, who worked in Hastings as a medical resident. “We called it Dr. Tom’s office.”
The doctor did some other things not listed on his résumé.
He smiled at every child he saw, even if it was his day off and he was in the mall and the child was a stranger he would never see again.
He held a lot of grubby hands. He stayed up nights studying, brainstormed new treatments, called up colleagues who were experts in specific areas of pediatric medicine, used his substantial intellect and his not-insubstantial ego to practically will sick kids to get well.
When they didn’t, he walked into a lot of quiet exam rooms and told a lot of mothers that their babies weren’t getting better, and never would. Even as he did this, he vowed to change things, somehow.
“It’s like if we were over here,” says his son, Chris Tonniges, pointing at one side of the coffee shop we are sitting in on a recent afternoon. “And he knew we needed to get over there,” he says, pointing to the other side, “then he would figure out how to get us there. He would never stop until we made it.”
There were flashes of frustration, fragments of despair.
One day Dr. Tom came home from the office and told his wife, Jane, that he had cared for two young boys whose mother suffered from a terrible disease.
ALS, he said, shaking his head. That’s the one disease I never want to get.
But those moments were fleeting, because there was so much to be done.
In 1995 he went national, becoming a director at the prestigious American Academy of Pediatrics. That job allowed him to attack some of those most intractable problems in U.S. health care: How do we better treat American Indian children on reservations? How about poor kids living in inner cities? And how do we best gather health care providers around a child so that the child recovers quicker or — better yet — doesn’t get sick at all?
Then Dr. Tom went global. He worked on health care for sick kids in Kosovo. He took numerous trips, both professional and volunteer, to Third World countries. He sought out voiceless children and raised his voice for them. He yelled that we needed to care for every child as if it were our own. He yelled so loudly, so eloquently, that no one who knew him could fathom his silence.

ALS has robbed Dr. Tom of any movement except the use of his right thumb. Here, at Brookstone Village in Omaha, he uses that thumb to communicate via tablet with his caregiver, Brian Nyabuto, left, and World-Herald columnist Matthew Hansen. KENT SIEVERS/THE WORLD-HERALD

He notices it in the middle of the first verse.
It’s a Sunday before Christmas 2011, and he is where he is most Sunday mornings when he’s in town: St. Michael Lutheran Church on Blondo Street.
The pastor motions for the congregation to stand. He doesn’t have to ask Tom Tonniges twice. Tom loves Christmastime. He loves a good hymn.
And so the healthy 62-year-old man cracks his hymnal, rises from his seat and begins to belt out the hymn like he always does. Like he will always do.

Tom Tonniges with his daughter Emily, at top, in New York City months after being diagnosed with ALS. The syndrome, sometimes known as Lou Gehrig’s disease, eventually stole his ability to speak, walk and use his arms and fingers. Above, Tom with granddaughter Chloe Gomez.

That’s when he notices it. It is something small, a difference so inconsequential that his wife, standing right next to him, can’t even hear it.
Dr. Tom can hear it. He can feel it. His voice is oh-so-slightly slipping, cracking. The sound is getting caught in his throat.
He is singing just like always, but the words — they aren’t coming out right.
“My voice,” he types on his keyboard. “It went away in the middle of the verse.”
He has always loved to sing. Now, suddenly, his voice begins to disappear whenever he tries to hold a tune.
He has always loved a glass of red wine. Now, suddenly, he chokes when he tries to take a sip.
There were many tests then, and alternate theories, and a healthy dose of denial, but the truth is that Dr. Tom and his family knew pretty quickly in 2012. They braced for confirmation of the worst possible news, and it eventually came: ALS: an incurable, unstoppable attack on the brain’s ability to command the body, a ghost who visits you at night and methodically steals every last way you interact with the world.
First Dr. Tom couldn’t eat steak. Then he couldn’t eat ice cream. Then he couldn’t eat or drink anything at all except through a feeding tube. One day I asked him what he missed. He typed out an answer:
“C-O-L-D I-C-E W-A-T-E-R.”
First Dr. Tom couldn’t walk normally, then he couldn’t walk using a cane, then he couldn’t use a walker, then once his arms and legs deserted him entirely he couldn’t maneuver a wheelchair.
Now he spends his days propped in a motorized wheelchair inside his nursing home room.
And you get the impression that Dr. Tom could have handled all that loss, accepted it as part of the gamble of life itself, if only the ghost had spared his ability to communicate.
Instead, the ghost came quickly for his speech. First it was garbled, then monosyllabic, and then it faded into silence. But the ghost wasn’t finished. It stole Dr. Tom’s ability to type, to shake your hand, to nod his head yes.
It stole his smile — the one he offered to every child.
Soon it will steal his thumb, the only remaining tool he has to be heard.
“That thumb is sort of the last thing left,” Zach says. “When that goes ...” Zach’s voice trails off.


First Dr. Tom couldn’t eat steak. Then he couldn’t eat ice cream. Then he couldn’t eat or drink anything at all except through a feeding tube. One day I asked him what he missed. He typed out an answer:
“C-O-L-D I-C-E W-A-T-E-R.”


Dr. Tom knows all this, of course, has studied the diagnosis and the symptoms, even made two trips to Israel to try experimental treatment that’s showing results for patients with multiple sclerosis.
The treatments briefly slowed but did not stop his ALS. Nothing will.
“I think he fought it as much as anyone did, but I think he also knew that you can’t will it to be different,” says Chris Tonniges, an executive at Omaha’s First National Bank. He stares out the window of the coffee shop. “The conversations have changed now. He’s more focused on getting his house in order. I don’t even know that he knows he’s doing it. It feels like a mother nesting before they are going to have a baby. That’s what it feels like to me.”
Earlier this year, as his condition worsened and the losses mounted, Dr. Tom dreamed up an idea. He did not share the idea at first. Instead he let it ferment inside his own mind, until it grew into a plan.
He has seen both sides of the health care system now, the good, bad and ugly, and he thought his fellow doctors deserved to know what ALS care looked like from his new vantage point.
He couldn’t treat a patient, or smile lovingly at a child, or gulp down a tall, cool glass of ice water on a sweltering summer day.
But Dr. Tom decided he could do, would do, something else.
He would speak. He would speak, and be heard, one last time.


THE ALS FOUNDATION TELLS DR. TOM'S STORY



The frozen man sits in his motorized wheelchair in the middle of a stage. It’s a 100-degree Friday in July. His wife is here, and so is his son, Chris, and a gang of old friends. There are also hundreds of strangers filing into the auditorium at the University of Nebraska Medical Center. There are hundreds of doctors and nurses and med students who are taking their seats — it’s a full house today — and murmuring as they wait for the presentation to begin. “What do you expect?” one doctor asks. A second doctor shrugs. He doesn’t know. No one does.
Dr. Tom has been working on this speech for months. It has taken him 40 hours total, he thinks — no more time than he used to put in during three workdays in Hastings. But this work is painstaking, picking out one letter and word at a time with his thumb, grinding to make the speech say precisely what he needs it to.
He gets tired easily now, after maybe a half-hour of typing. He had to start all over twice when his computer crashed. But he finished it last week. He’s ready.

WANT TO DONATE TO DR. TOM TONNIGES' PROMISE FUND?
- Contact the ALS Foundation’s Nebraska office at 402-991-8788 or nebraska@alsa-midwest.org
- Or surf the ALS Foundation’s website: web.alsa.org

He pushes a button, and a computerized voice is piped from his computer into the auditorium’s loudspeakers.
“Thank you for the kind introduction,” it says in a robotic monotone. “I am no Stephen Hawking but I have one last story to share.”
The story he shares is the story of his life, from med school, to his practice in Hastings, to his work on a national and global level. He details and emphasizes the benefits of medical home, of doctors working together with other doctors in search of a solution; how listening to the patient, really listening, may prevent complications and undue medical testing and further pain.
These concepts are no longer revolutionary. In 2015, most believe they are the way forward for our health care system. But what are revelatory are Dr. Tom’s examples. They are case studies, both good and horrific, from his years as an ALS patient.
Case Study A: Dr. Tom goes into an emergency room, and the doctor glances at him and then immediately looks to his wife or son Chris for answers. So many times, doctors and nurses — people who should know better — treat this ALS patient like he’s mentally incapacitated or comatose.
I’m right here! Dr. Tom wants to scream when this happens. I can think! I can type! I’m a doctor!
Case Study B: He falls down in a hospital — a fall as dangerous as it is preventable. It happened at a prestigious medical clinic when a group of doctors and nurses didn’t use the proper piece of equipment to lift Dr. Tom. They brushed aside Jane’s questions. They didn’t take the time to know why Dr. Tom kept pushing his eyes to the side, saying “No, no, no” over and over again.
And then they dropped him. They dropped him so hard that they feared he had broken his neck.
The simple, avoidable mistake cost him days in the hospital and the health care system an obscene amount of money. It might have taken time off his life.
He brings a group of volunteers to the stage and has them act out examples from his care. First the bad ones, where the doctors are hurried, rude, imperious and largely ignorant of what it means to be an ALS patient. Then there are the good examples: Doctors who have communicated with his specialists, who take the time to understand his situation. Doctors who are human to him. Humane.
He talks about the ALS clinic at the med center, how it’s being organized around the concept of the medical home, how it’s getting better and better as we understand more about this disease without a cure.
And then he glances at his script and realizes it’s almost over. The crowd is rapt now, leaning forward in their chairs, hanging on every word.
“Surround yourself with great positive mentors,” he says, the computerized voice bouncing off the auditorium walls.
“Flee from those making fun of or speaking disparagingly of others,” he says.
“Surround yourself with those who want a different system of care,” he says.
“You are the change agent.”
When it’s over, the people jump to their feet, electrified. The doctors and nurses and med students clap and cheer and discreetly wipe their eyes with their shirt sleeves.
I exit quickly, weaving through a maze of doctors and med students and stumbling out in the sunlight toward a parking garage.
I make it until I turn my key in the ignition. A blast of air conditioning hits my face. I think about the books in the waiting room, and the angelfish in the fish tank and the smiling man in the white coat there to nurse me back to health, and I double over the steering wheel and sob harder than I have in years.

Dr. Tom gets regular visits from family and friends, although some don't come around as much anymore. Tonniges wonders if he should have written a pamphlet to let people know what it would be like to visit him at this stage of his life. KENT SIEVERS/THE WORLD-HERALD

Family and 10 or so friends regularly visit Dr. Tom at his nursing home in west Omaha these days.
They have grown used to his pecking out thoughts on his keyboard. They know to stay on one topic of conversation so that he can participate. They have learned patience.
Other friends and acquaintances don’t come around so much anymore. Dr. Tom does not blame them, he says. He blames himself. He should have explained to them years ago what it would be like in this nursing home room in 2015, after the ghost stole almost everything.
Maybe, he thinks, he should have written up a pamphlet.
But of course there’s something deeply embedded in human nature that makes us — makes me — want to stay away from here. It’s so much easier to do the ice bucket challenge than sit in this room. So much easier to turn and run from a disease that seems to offer no silver linings, no solutions, no hope.
Except that when I spend some time with Dr. Tom, I begin to see less of what’s been stolen and more of what cannot be.
He’s still as smart and thoughtful and doctorly as ever — it’s just now flowing from this thumb to a keyboard and into the world, one letter at a time.
And after he gets tired of typing, I get a glimpse of what it will be like when he no longer can.


“Surround yourself with great positive mentors,” he says, the computerized voice bouncing off the auditorium walls. “Flee from those making fun of or speaking disparagingly of others. Surround yourself with those who want a different system of care. You are the change agent.”


Bereft of the usual ease of communication, absent the pleasantries and small talk, we sit in silence for minutes on end, he in his wheelchair, me perched on a little bed not unlike those exam tables at his old Hastings doctor’s office.
And maybe it’s my imagination. Maybe it’s nostalgia or wishful thinking. But sitting inside this room, I feel comfortable and safe, like I did as a kid. And thrillingly, I think as an adult I’m offering him some small measure of comfort and safety, too.
We are quiet, I think. We are quiet but we are not voiceless.
He has one more thing he wants to say to me before I go. He types it out one letter at a time. A request:
“S-I-G-N T-H-E W-A-L-L”
I glance around the room, and realize hundreds of people have scrawled notes of encouragement on every wall of his room.
I hop off the bed, grab an orange marker, find a clean piece of white wall and in an adult’s childlike scrawl start writing.
It’s a simple sentence. I hope that when Dr. Tom Tonniges reads it, he smiles on the inside.
“You were the best doctor I ever had.”
Contact the writer: 402-444-1064, matthew.hansen@owh.com, twitter.com/redcloud_scribe

Share your thoughts