Living with ALS

What life is like after an unconscionable diagnosis

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By Ken Trainor

Staff writer

Sarah Coglianese had a lot going for her. The Oak Park and River Forest High School grad (class of 1996) moved to San Francisco after college and found work in the publishing field. She lived in New York for four years, where she met her husband, Rob, and when she got pregnant, they moved back to San Francisco, where he found a job with Twitter.

An avid runner and hiker, she enjoyed the weather, which allowed for year-round activity. Her sister, Liz, moved out there as well, and they enjoyed cooking together and trying new restaurants.

Then Sarah started to fall.

Sarah recalled that when she tried to run, after about three minutes, she couldn't lift her feet. And more than a few times, she found herself lying in the street.

After nine months of seeing doctors, in 2012 she received a diagnosis that everyone could scarcely believe: ALS, amyotrophic lateral sclerosis, better known as "Lou Gehrig disease."

But that's an old man's disease, isn't it? 

Except people forget the guy it's named after was still playing for the Yankees when he was diagnosed. He was only 36.

Sarah Coglianese, about to turn 37, has a disease for which there is no cure. The prognosis is two to five years. According to her succinct description: "ALS is a motor neuron disease. It means your brain is not talking to your muscles, and as a result, those muscles twitch in frustration, then atrophy, and eventually become paralyzed."  

"The average patient is a man over 50," noted Sarah, who has learned quite a bit in the past three years, "but I know a lot of people with ALS now. Women in their 20s. Men in their 20s. I have a lot of friends who have it who are moms in their 30s and 40s."

One of her friends was diagnosed at the age of 20. He's 28 now. When you're young, you may live longer, but youth isn't the only determinant.

"It depends on where it starts," said Sarah, whose voice sounds perfectly normal. "In my case, it started as far away from my breathing muscles and swallowing muscles as it could have. It started in my feet."

That's good, she was told. You're young and healthy. You've got that going for you. But with ALS, good news is relative.

"I can still talk and swallow and eat," she said, "which I'm grateful for. But I am in a wheelchair and my arms and breathing muscles are pretty weak. So it might be slow, but it's not slow enough."

Nobody knows how people get this illness (only about 5 percent of cases have a familial link) or how long its progression takes. All they really know is no one survives.

When they first got the news back here in Oak Park, Anne and Joe Coglianese, Sarah's parents, handled it differently.

"I think we were both in shock when she called and said there was a sure diagnosis of ALS," recalled Anne. "We couldn't really even talk to each other. I called my best friend and she left work and came over and we cried. Joe, who is quieter, just sat and stared."

The next night, close friends took them bowling.

"I think we just needed distraction," Anne said. "It was unbelievable, and you know what? It still is. Not that I'm denying it, but it just doesn't seem that this could possibly be happening to our daughter."

 

The new normal

Sarah, who soon had to use a walker, now motors around in a wheelchair, which represents a decline in her condition, but also a liberation. 

"Once she got in the wheelchair," recalled Joe, "it freed her up. She was told that by other ALS patients. You're so much freer. You can go outside, go for walks with your daughter."

"The kids at school think it's the coolest thing ever," added Anne. "Not that we wanted to see her in a wheelchair, but when she went to that stage, it was kind of a great thing."

In their previous walk-up apartment building, Sarah had to be carried up the stairs. Now they live in a house that has been refitted to make it fully accessible. They also have a van with a ramp so Sarah can motor right in to the passenger-side front seat where the chair is locked in place.

Within the San Francisco area, they're quite mobile. Sarah has "assistants" (she doesn't care for the word "caregiver") who split the week when Rob is at work. The assistant drives the van so Sarah can take her daughter, 5-year-old Scarlett (nicknamed "Scout"), to kindergarten.

Though "fortunate" is also a relative term, in certain ways they're blessed. Rob has a good job with good health insurance, so they aren't facing the predicament that other ALS patients find themselves in — fundraising just to make day-to-day living viable, because living with ALS is extraordinarily expensive. 

Sarah currently uses two machines, for instance, one to help her breathe when she sleeps and one to help her cough and clear her lungs during the day. 

Her moods swing "in correspondence to how independent I'm able to be," she said. "If I need a lot of help with something, and I'm feeling frustrated, and my daughter's not listening to me, and there's nothing I can do about it, then I get pretty down."

What she misses the most is being "the kind of mom I thought I would be. I was going to be really active. I would be taking my daughter on hikes if I could. I never did. I couldn't walk very well by the time she was 14 months. Because of my hands, I can't even sit down and do an art project with her or cook with her or all these things I just assumed. That's been really, really hard."

But each side has another side. Her daughter, at the ripe old age of 5, has become a very independent person.

"I don't think I would have asked her to do the things she's had to do," Sarah said, "if I didn't need her to. Opening doors. If my foot slips off the wheelchair, she'll notice and put it right back on. She can cook. When she was 4, I taught her how to make a quiche. She was my hands. I told her what to do. 

"She'll explain to people what my disease is in very basic terms. She understands it. But she's 5, you know? Sometimes she says no. When other adults are around doting on her, she's not the most helpful kid, but when it's just us, she takes care of me."

Or as she summarized it in a New York Times blog a couple of years ago: "Scarlett is easily the best and the worst thing about this disease. It shreds me to think that I might not be around long enough to see her grow up, to help her navigate the world, to be the mom that she deserves. But our daily reality mostly keeps those fears at bay. It's hard to focus on the negative when I feel so lucky to have this sweet, funny, feisty girl in my life. And it's clear how critical it is that I am an example of strength for her, even when she has to physically open doors for me or help carry laundry from one place to another."

 Blogging

Writing is the other good that has come out of all this.

Sarah started blogging before she got sick. Her first blog was called "Deepish Thoughts," a humorous take on life in New York (and a play on Saturday Night Live's "Deep Thoughts" routine). 

After her daughter was born, she started writing "Scarlett Letters," a chronicle of life with her funny, feisty girl. Since her illness began, she has composed a series of emails to Scarlett that her daughter will be able to read when she grows older.

And most recently, she has been blogging twice a week (Mondays and Thursdays) about living with ALS. Just Google "Speed4Sarah blog" to find it. She can type, but tires easily and her hands are cramping, so she also uses voice recognition software.

"I'm writing more," she said, "which is something I always wanted to do. It was just a matter of sitting down and doing it, but I never did because I was running or shopping or just a million other things. And I can't do that anymore, so now I can sit down and write. In a weird way, it's what I wanted."

One of the things that boosts her spirits most, she said, is getting published. And that happened recently in the July issue of Redbook, which carries Sarah's testimonial to her sister, Liz (titled, "My little sister carries me").

Liz served as Scarlett's nanny until Sarah decided to leave her job and stay home. Since the illness, and despite now having a son of her own, Liz has become even more integral.

"My ALS progresses, slowly but steadily," Sarah wrote in the Redbook article. "My hands and arms are affected now, so at Sunday family dinners, Liz often sits next to me and cuts up my food. She has helped me shower, lifted me on and off toilets. These are the kinds of things she used to help Scarlett do. I feel guilty and worry she will begin to resent me. But when I've said as much, she simply replies, 'You would do the same for me.' And it's true."

Though the piece is about Liz, the article is really a story of two Sarahs who lived across the street from one another.

Sarah Smith grew up on the 700 block of Gunderson Avenue, directly across the street from the Coglianese house. Sarah Smith was two years ahead of Sarah Coglianese in school, but they stayed in touch through Facebook, especially when both were living in New York. For the past three years, Smith has been Redbook's executive editor. She reached out to her former neighbor to suggest writing a piece about her situation.

"There's something about knowing her since we were kids that makes it feel so extra unfair and unfathomable to me that she has to deal with this awful disease," Smith said via email. "It's heartbreaking. Also, I have a son just a little younger than her daughter, and as a mom, I've found her writing about raising her daughter to be very touching (and funny!). I followed her blog, and have admired her resilience and humor and thoughtfulness. I knew that what she's going through would be really moving and eye-opening for our readers, and her writing is so genuinely good that I felt we'd be really lucky to have it in Redbook."

The reader response, Smith said, has been gratifying. 

"What's really stood out," she said, "is the people who've sent us these long, beautiful letters about their sisters, or about their personal struggles, or just about how wonderful Sarah and Liz are. It really touched people, their love and connection, and honestly, I'm really honored I got to shepherd their story into the magazine.

"We spent a lot of time playing together on the block; we were in Brownies together and sold cookies up and down Gunderson. She and her family exemplify to me the things I loved about growing up in Oak Park — they're kind, they're fun, they're just really good people. She has a big following and network of support, but I'm glad I could introduce even more people to her."

 Funding research

And that, in turn, is helpful to the family's fundraising efforts, something they seem to have a knack for. Their first foray, in 2013, was Rob's idea. They put together a team and took part in the ALS Association's Ride to Defeat ALS in Napa, which raised an impressive $100,000 (the team name was Speed4Sarah, also the name of her Facebook page). 

The next year they piggybacked onto a remarkable fundraising phenomenon, the ALS Ice Bucket Challenge, started by two young ALS patients from the Boston area. Along with another Napa ride, they raised another $100,000. 

This year, Sarah wanted an angle that would increase awareness about living with the disease. The campaign was called "What Would You Give?" Participants solicited donations by "giving up" for one day something that ALS typically steals from its victims — their legs, their hands, their voice.

It was a hit. They raised $150,000 and sensitized their team, 79 strong, who learned what Sarah and others have to endure every day. 

One friend gave up her hands. "My husband had to brush my hair," she said, "and he sucks at that. It hurt." Another noted, "I didn't feel like myself today. I couldn't use my voice. I'm a talker and I couldn't talk. I couldn't greet people and that didn't feel like me."

Meanwhile, her younger brother, Paul, and his friends will repeat the musical extravaganza they held at FitzGerald's in Berwyn last year, which raised $18,000. Sarah couldn't attend, but it was live-streamed, so she could follow the festivities on her laptop. 

This year's event will be staged, as it was last year, on the day after Thanksgiving.

Because they are in the relatively fortunate position of not having to raise funds for Sarah's daily living needs, all of the donations are being directed toward research, specifically, through ALS TDI (Therapy Development Institute in Boston, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS), which has shown the most promising progress to date.

"One of the reasons we're so focused on fundraising, and we're so grateful for it," Sarah said, "is that it's the only thing that is going to get rid of this disease. At the time Lou Gehrig announced he had ALS in 1939, and died of it in 1941, if the emphasis on research happening today had happened then, I wouldn't have this disease. I'm sure of it. That was 75 years ago." 

As it is, she said, TDI's most promising drug won't be cleared for use for several more years because of the rigorous testing process. 

"That's too late for me," she said.

 The future

Which raises the question that always comes up in situations like this: Is there a place for hope?

Joe, a retired District 97 teacher, believes that with all the amazing scientific progress in so many areas in recent years, some breakthrough is bound to occur.

In the meantime, he noted, "Sarah likes to say that when the future looks dire, well, we're not living in the future. You're going to feel bad when it happens, so don't start feeling bad now. This is where you live. This is the time when you enjoy what you can. And if it happens, you deal with it then.

"I still think that science might be able to do something," he added.

"Part of the joy — I don't know if joy is the right word — is just seeing how Sarah and Liz have become adults," said Anne, a retired District 90 teacher. "Sarah's really strong. There's a lot to be happy about. So we're going with that. Some really positive things have come of this. People in our lives we had lost track of are back. Reaching out and having so many people respond is really gratifying. That's the positive part."

As for Sarah, here's how she put it in the Redbook article:

"I know that no matter what happens to me, Liz will pick Scarlett up, giving her the strength she's given me these last few years. My daughter will always have a piece of me, in Liz. And Liz will always have a piece of me, in Scarlett.

"Someone once asked me if I was jealous of Liz's health, jealous of her relationship with my daughter. 

"Jealous of it? No. 

"I am counting on it."

ALS is a terrible disease that steals your future. That is very clear. 

But one other thing is also very clear.

Sarah Coglianese has a lot going for her.

Contact:
Email: ktrainor@wjinc.com

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