"It could be worse," Michael (Mike) Winston, 27, said as his frail body relaxed against the leather couch. "Well, not that much worse," he says with a laugh on a cold last October.
At first glance, Winston is a typical twenty-something man. He speaks animatedly about his fantasy sports team (a team belonging to friend Rudy Rosen), sports a Minnesota Vikings jersey and has ESPN on the television. A sports guy indeed.
But a few things seem out of place in his Minneapolis apartment. A walker sits next to the couch and a red metallic wheelchair is next to the kitchen table. And one of Winston's hands looks immobile.
Two and a half years ago Winston was handed a death sentence: Lou Gehrig's disease.
Winston first noticed something out of the ordinary in October 2007 when he returned from a ski trip. His right hand was weaker than usual, twitching at times. He dismissed the oddity to carpal tunnel or some sort of sports related injury, but decided to go to the doctor just in case.
"The neurologist did a bunch of tests and the first thing they said to me was 'if I saw these results with someone 60 years old, I'd say ALS [Amyotrophic Lateral Sclerosis] but you are in your 20s, so it can't be that,'" Winston said.
ALS, known to many as Lou Gehrig's disease, is characterized by the disintegration of nerve cells, which are no longer able to send messages to muscles. Only affecting 5 out of 100,000 people worldwide, usually those between 40 and 70 years old, the disease leads to eventual paralysis and death when lungs can no longer function properly.
Winston's doctor sent him to the Mayo Clinic in Rochester, Minnesota. It was then Winston recalls thinking "Wow, I have something serious."
So began the brigade of doctors, specialists, and tests at Mayo Clinic. And four months of unsuccessful infusions in his Minneapolis hometown, with lots of unpleasant side effects. A year after initial concern, Winston and his family were handed the diagnosis.
"After the unsuccessful infusions, the doctors said 'you probably have ALS.' It was the worst thing I could hear," Winston recalls of the October 2008 day. "I was educated. They were saying 'you are going to die -- this is a terminal illness -- we can't do anything about it, sorry.'"
Little is known about the disease. No treatment, no cure, and for most patients, no clues as to what caused the onset of the disease. Only 10 percent of ALS patients have a familial ALS gene. The cause for the remainding 90 percent of patients is unknown.
In 2011, Winston has the same fate Lou Gehrig had when he was diagnosed in 1939.
Winston doesn't seem upset by his own physical downturn, how every muscle in his body will lose strength and degenerate, how his life expectancy after diagnosis is just two to five years. What does bother him is how the news affects his family and friends.
Sitting next to Drea Lear, a long time friend, Winston does not shy away from any questions. "I would rather talk to somebody and let them know what's going on than have them wonder or guess, I'd rather just be honest and open," he explained.
At the same time, he notes that "People don't want to call and say, 'I heard you're dying -- is that true?'" Lear interjects, "It's a weird question to ask," she says as they chuckle.
"The hardest thing of anything was the reaction of my parents; they try to be strong," Winston, an only child, said. "I feel bad for them."
Winston's diagnosis continues to leave parents Mona and Jeff Winston speechless. "When we got the diagnosis at Mayo, it was a death sentence. No hope, no treatment, nothing to do, it's just like a dead end... we were all in denial for a long time," Mona explained. "It's, it's, hard to even describe it. It's extremely sad, difficult, we just get angry and then we get depressed and then, there are all different emotions that go with it."
But as her voice wavers, a deep determination overpowers the devastation. "We could spend from the day of diagnosis to day of death living every day in despair or we could choose to find something in every day in the rest of his life to be happy about."
What has given the Winston family hope are organizations like ALS Therapy Development Institute (ALS-TDI), a fast track research group created to jump ahead of the failing traditional research model. Founded in 1999, ALS-TDI is the largest ALS research hub in the world, and the only nonprofit biotechnology company with more than 30 professional scientists focused on a single disease.
"ALS is not a top priority of bio-tech and pharmaceutical organizations for a variety of reasons, not the least of which is the fact that there isn't a huge population of people living with ALS at any given time," Dr. Fernando G. Vieira, director of In Vivo Operations at ALS-TDI explains. "But, that was the way it was for MS twenty years ago, and now, thanks to a panel of good therapeutic options the MS market is rapidly becoming one of the fastest growing markets."
The goal of the organization is to slow and stop ALS, Rob Goldstein, director of communications and public affairs at ALS-TDI, said. But he is frequently asked about the wording, why the goal is not to cure ALS. He refutes the question by asking "Does the train just stop? No, the train slows down, just like any disease. Eventually we will slow it down enough so it stops," he says. "Then the scientists will find a way to reverse the disease."
"In a lot of disease you are trying to kill something -- kill the bug, kill the bacteria. If you have cancer, your goal is to kill the cancer faster than it kills you," Dr. Vieira explains. "ALS is a disease of degeneration where we don't know what exactly is going on and we are trying to keep it alive."
Simply put, Dr. Vieira says "ALS is a really, really freaking hard disease."
Winston's community has done everything in their power to combat the ALS. What began as a modest attempt to raise $20,000 for ALS-TDI has ballooned into an annual event, Winning for Winston, that has raised over $310,000 since Winston was diagnosed in 2008.
Groups of Winston's closest friends have traveled across the world for reunions. Distant relatives offer to cook meals. Absolute strangers have joined the cause. "It's the most tremendous support system," Mona says. "It's what gets us through every day."
"Fundraising raised our hope," she continued. "This is the only way anything will ever happen, let's raise as much money as we can possibly raise and put it towards research."
"A lot of patients that have a very lonely journey and there are the few, the percentage that don't," Amy Whipple, Midwest Regional Director of ALS-TDI explained. "The support network that Michael has is really unbelievable, it's a beautiful thing to witness."
Friends recall their shock when hearing the diagnosis in 2008, which quickly led to action. "Our group of friends saw it as this is 'okay, this is hard -- it's time to step up and support him or back away.' Hands down everyone set it [the importance of supporting Winston] as a top priority in life, it's what matters," Erin Werde, a good friend, said.
And so a group of about 30 of Mike's closest friends, those that have known each other since junior high, have stopped at nothing to be together.
Two months after the diagnosis, in December of 2008, a few of Mike's closest friends planned a trip to Las Vegas together. News in Winston's social crowd spread quickly, according to friend Sharon Makowsky. "It spread by word of mouth and everyone wanted to go. There was a lot of emotion going on there, 'we are going there for Mike and we are going there to be there all together with Mike,'" Makowsky explained.
Winston was completely unaware of the plans brewing, however. "I thought it was gonna be five guys... throughout the whole day more and more people would show up and I never put it together that it was a surprise for me until Friday night, I was like 'there are 27 people here.'"
It was truly a celebration of life, Makowsky described. "The whole weekend was so unbelievable, it felt like we were being surprised - it was celebration of being together for Mike, it was us saying 'we love you Mike and we are here for you.'"
Many reunions have ensued since. "At this point we [group of friends] are really spread out really all over the country and it's the coolest thing to see that it's never a question for our friends to come to events, it has become very important to all of us," Rosen said.
With friends, family, and strangers behind him, Winston is getting used to some big adjustments. Although the average lifespan post-diagnosis is two to five years, progression varies, with 10 percent of patients surviving more than 10 years after diagnosis. For Winston, the progression of ALS is found in little things, like the time it takes to get a shirt on.
Last October, it took about 15 minutes to put on a t-shirt but Winston was living on his own, able to get around slowly. In December, he moved back into his parents' newly handicap accessible home "to make things easier," as Winston describes it.
He has spent the last few months in Florida, escaping the unforgiving Minnesota winter which is hard on his body. And now in March, Winston needs help getting dressed and getting in and out of bed. But Winston remains positive; saying that he's enjoying the sun and the steady stream of visitors, who are "Tanning for Winston," as one put it.
And life moves on as Winston and his community continue to grow stronger. Plans for the fall 2011 Winning for Winston event are well underway, with two of Mike's good friends, Erin and Skylar Werde, heading the fundraiser. He's looking forward to returning to Midwest to work with the Werdes to oversee the event. He's also undoubtedly forming some fantasy sports teams, hopefully beating his archenemy/best friend, Rosen. ("I love when anything that Rudy Rosen likes loses," he said, in all seriousness.)
"What I've learned from this disease is we have so little time -- time is so precious and how we spend it is remarkable, and the fact that Mike has spent some of it doing something to make a difference is extraordinary," Goldstein said, calling Winston's actions heroic.
Intentionally or not, Winston has become a face of change and hope in the ALS community. "You can do something for every disease -- donate food, give blood, etcetera, but with this there is nothing you can do, and that is simply unacceptable. In the world today there's gotta be something," he says. "Donating money is number one in importance... I'm asking for money to save people's lives and not even save their lives, but at least give them a chance. I wish there was a surgery that would give me one in a million chance, but I don't even have a hope."
He is quick to backtrack, though. "But I'm not trying to go out and change the world," Winston says.
Well Mike, it seems that you already have.
To learn more about ALS and to contribute to Winning for Winston visit http://community.als.net/winningforwinston
Follow Talya Minsberg on Twitter: www.twitter.com/tminsberg