Indy woman with ALS: 'By some miracle, I still have my speech'

There's really no explanation.

No good medical explanation for why Jenni Berebitsky is less than two weeks away from competing in her second triathlon.

The 39-year-old Indianapolis woman has out lived an ALS diagnosis that, to put it bluntly, was supposed to kill her 6 years ago.

It was on her bucket list last year, to finish a triathlon -- and she did. So when this year came around and she was still here, still able, she made another triathlon a bonus bucket list item.

And while the feat will be a triumphant one for Berebitsky, it will also be bittersweet.

"Unfortunately, in the past year, the disease has progressed," she said.

Progressed in the awful way ALS does. A year ago, Berebitsky was still eating meals with her family.

She sat at the dinner table in her wheelchair, her husband feeding her spaghetti. She chewed and swallowed and talked and laughed as her son, Philip, played nearby -- and that was tremendous.

But now, her ability to eat solid food is gone. She is on a feeding tube 99 percent of the time.

"It has been a difficult year giving up solid food and the joy of sharing a meal," she said. "ALS is a practice of letting go."

Her left hand, the only mobile part of her body, has weakened.

But the explanation for why Berebitsky is still going strong -- ready to write her life story in a book and ready to suit up Aug. 15 for the Indianapolis Sprint Triathlon at Eagle Creek Park -- can be seen in the person Berebitsky is. And how she's chosen to look at her disease.

"Thankfully, by some miracle, I still have my speech," she said. "Although, Siri may say otherwise."

There it is. The humor. The taking life day by day. The thankfulness for what she has.

"I am able to appreciate conversations," Berebitsky said, because she can still talk.

And she appreciates the people around her.

Those people will step up this month to help Berebitsky achieve her goal of another triathlon. Her husband, Jeff, will tow her in the boat for the swim. Lisa Boncosky, her good friend, will be the human life raft in the boat. Alex Weber, a friend from Portland, will pull Berebitsky on the bike. And Brett Krichiver, Berebitsky's rabbi and friend, will complete the running portion with her.

"I live in the wake of my family and friends' love and support," she said. "So many people have stepped up to learn how to care for me."

Here is Jenni's story, originally published Aug. 16, 2014, as she prepared for her first triathlon.

The signs came subtly. Jenni Berebitsky was tired. Really tired. Weak. Clumsy. Twitching muscles.

Pregnant with her first child, she assumed it was related to pregnancy. And as a medical student, she was often tired. But after sweet baby Philip was born, the signs didn't go away. They got worse.

Her speech slurred. She had trouble swallowing. She couldn't snap the buttons on Philip's onesies.

She tried her best to dismiss the symptoms.

Then, at 33, as Jenni was finishing her final year of medical residency, married two years to the love of her life with an 18-month old son — when life really couldn't have been more perfect — she made the devastating self-diagnosis.

Yes. This was multiple sclerosis.

If only it had been.

When she went to the doctor, he told her she was wrong. It was not MS. She had amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease. And she had 18 months to live.

"That was the worst day of my life."

ALS is debilitating and devastating. It's 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 often leads to total paralysis and almost certainly to death.

Now 38, Jenni, Indianapolis, has out lived her diagnosis by more than five years.

But she can't feed herself, shower, play basketball with her son or do anything a young woman should be able to do. Her body has failed her, except her fingers, which she can move to power her wheelchair. She can talk, but it's a strained, slurred voice.

Swallowing is a struggle. Two months ago, she choked, unable to breathe, and an ambulance was called. Six-year-old Philip sat at her side, patting her: "Mommy, you are going to be all right."

A FIGHTER

She was all right. Jenni is one of those strong-willed, feisty women. Most people diagnosed with ALS die within two to three years. If you're lucky, you live five. If you're a miracle, you live 10.

Jenni is defying the odds. On Saturday, she will compete in her first triathlon at Eagle Creek Park.

Her husband, Jeff, will do the swimming portion, with an inflatable raft carrying Jenni attached to his waist. Her brother and cousin will take turns pushing her during the race's running and bike portions.

How is she training? "I have to be prepared to sit in any situation," said Jenni, who makes people, including Jeff, laugh with her unbelievable optimism.

Although he got two short years of a normal marriage with her, he sees it all as a blessing.

MEANT TO BE

They met in 1999 in Seattle. Jenni's mom was a Realtor selling a house to Jeff's brother. They got to talking and thought Jenni and Jeff would hit it off.

They did and struck up a friendship. The next few years were just that. In 2003, they started dating. He wrote her letters on an old-fashioned typewriter. She still has those letters.

They were married in 2006 in Portland, Ore. Jeff says their relationship is made of that soul-mate kind of stuff. He later learned they were put together for a reason.

"I was lucky that I met Jenni. We were the right people for each other," said Jeff, who showers Jenni each morning and has recently learned to put her hair in a ponytail and French braid. "Everything about our situation happened for a reason. We understand it. Maybe not her getting the disease. But her as the patient, me the caretaker and Philip as our son. Everything is aligned with us for what we need."

THE DIAGNOSIS

Jenni went to the doctor alone, sure she would walk away as an MS patient. But she didn't. The ALS diagnosis was such a shock, a punch in the gut, that she couldn't drive herself home.

She called her husband but didn't tell him why she was crying. Only that she couldn't drive and needed him to pick her up. He did. And he drove her to the 5,000-acre Forest Park in Portland.

They walked and walked. Not a word. She cried. Jeff finally asked Jenni what had happened.

She told him: "The worst thing you could ever hear. ALS."

The news hit him hard. It hit everyone who knew Jenni hard.

She was a runner, she swam, she biked. She was the picture of health. And that is why this triathlon is such a milestone for her, an item on her bucket list.

"She was so healthy, and in my world nothing would ever happen to Jenni," said Joyce Kleinman, her mom. "I've been through so many stages."

The denial. The anger. The grief. The sadness.

But ultimately, the joy.

A LIGHT IN THE DARKNESS

In 2010, Jenni, Jeff and Philip moved to Indianapolis, where she had grown up, so they could be closer to family.

Because she can't function on her own, there is a calendar scheduling friends and family to stay with Jenni while Jeff is at work.

Many first-timers go in expecting to feel depressed.

"But when they leave, they leave feeling better, happier," said mother-in-law Barb Asher. "That's Jenni's way."

Jeff agrees and says Jenni makes everyone's life better.

"If I had anyone else as a person I was caring for, I can't imagine they would be as upbeat as she is," he said. "I'm a reflection of her attitude."

They all have come to learn that each day is a blessing when you have ALS.

Last week, on what would be an ordinary day for most, Jeff and Philip played basketball. Jenni gleamed as she watched. They sat down to a dinner of spaghetti that Kleinman had made, and Jeff fed his wife.

Jenni talked of how it's tough to have different people feeding you each day. Some give big bites. Some small. Some feed fast. Some too slow. And sometimes she's full and has to tell them to stop.

People have plenty of questions about what's to come. But death doesn't overshadow the Berebitsky family.

REALITY

The sad moments emerge, occasionally, when Jenni thinks about not seeing Philip grow up. Not seeing him play that high school basketball game, the sport he loves. No graduation. No bar mitzvah.

"What's it going to be like when Philip meets someone, has kids? Those are sad moments," Jeff said, "because we don't know where she will be at that point."

But they try their hardest not to think of all that.

"That's pretty much how we live: live each day," Jeff said. "I don't look too far ahead. Otherwise I would be sad all the time."

It hasn't been easy. As a doctor, Jenni knew what was coming. When certain muscles started to twitch, she knew she was going to lose movement in that part of her body.

"When she started losing the strength of her arms, she said, 'I'm OK. If I don't have my arms, I will be fine without them,' " Jeff said.

Of course, Jeff is a big help. Getting ready for bed takes 45 minutes. There are teeth to brush and the next day to prepare for. Showers take about an hour and 15 minutes.

Philip has learned to be self-sufficient for a 6-year-old. He is a rambunctious kid with a love of basketball. He begs his dad and anyone around to play with him. But not his mom.

"He just recognizes," Jeff said. "He knows his mom is good for certain tasks and his dad for basketball."

Having a mom with ALS has been Philip's life. By the time he was a toddler, he was dressing himself. Before he leaves for first grade each morning, he packs his own lunch.

LIVING FOR TODAY

Jenni watches it all with great joy. And she looks forward to each moment she gets.

"As long as her wheels will take her there, she goes," Jeff said.

And her wheels will take her Saturday as she competes in the Indianapolis Sprint Triathlon.

"I just always thought it would be fun," she said.

But, unbeknown to her, she's blazing a trail for people with disabilities.

This triathlon has never had a raft rider during the swim portion, said Don Carr, race director and president of Tuxedo Brothers, who is putting on the triathlon.

"I thought it was neat. I thought it was a fun idea," he said. "From our perspective, logistically, it gives someone a chance to do something they've always wanted."

For Jenni, it means much more than that, having her husband and family by her side.

"It's a gift they wanted to give me," she said.

Call Star reporter Dana Hunsinger Benbow at (317) 444-6012. Follow her on Twitter: @danabenbow.