CHICAGO — ALS has taken away Michelle Crockett's independence, but her friends and family are at her side.
And on Saturday, Crockett's support group will show up in full force as 100 of them join together to participate in Chicago's ALS Walk For Life.
Crockett, of Burnside, was diagnosed in May of 2015 with amyotrophic lateral sclerosis — aka Lou Gehrig's Disease — the disease that affects the function of nerves and muscles.
According to ALS.org, a little over 6,000 people in the U.S. are diagnosed with it each year and it’s estimated that there are more than 20,000 Americans living with the disease at any given time.
Those who develop it are usually between the ages of 40 and 70. And for life expectancy, half of all people affected with the disease live at least three or more years after diagnosis.
On Saturday, Crockett will participate in her second ALS Walk for Life event, which will be held at Soldier Field, 1410 Museum Campus Dr. She’ll be joined by 100 friends and relatives, who will serve as the Family Team Chairs on “Team Mo’ Better.” The event will feature a 2-mile course that winds along Chicago’s lakefront and through Soldier Field.
Michelle Crockett, (in orange) with her sisters at the 2016 ALS Walk for Life. [Provided]
The ALS Walk for Life is a day of hope that unites more than 7,000 participants, making it one of the world’s largest gatherings for the ALS community, organizers say. Last year Team Mo’ Better raised $14,000. They’re trying to raise more this year.
While there is no registration fee, the Les Turner ALS Foundation encourages participants to raise a minimum of $100. The family said any donation will be appreciated.
Event day registration will open at 9:30 a.m. and the opening ceremony will begin at 10:30 a.m. The event will be held rain or shine. Participants are encouraged to pre-register at www.ALSwalkforlife.org.
“We’re proud of how much this event has grown over the years and that we’ve raised millions of dollars for programs such as medical research, Chicago’s premier ALS clinic, support groups, equipment loans and so much more, all of which impact people’s daily lives,” said Andrea Pauls Backman, executive director of the Les Turner ALS Foundation.
Last year was Crockett’s first time coming out about the disease. Until then, she was very private about it. Now she wants to spread awareness, said her sister Deborah Crockett, who encourages other families dealing with this to join a support group like the Les Turner ALS Foundation. Crockett supported their mission so much and was grateful for their help, that she now sits on the board of directors.
The effects of the ALS for her sister are getting worse, said Deborah Crockett, who is her primary caregiver. Her sister uses a wheelchair for mobility, a motorized stair lift to get around her home, and a voice assistance device to speak.
“Bits by bits, she had to keep giving up portions of her life, like when it got to the point where she could no longer drive,” Deborah Crockett said. “She’s lost all her lower mobility. She can’t walk or talk and she had the biggest mouth in the family.”
Michelle Crockett (sitting) with her brothers and sisters. [Provided]
Deborah Crockett said everyone still does their best to remain positive and prayerful. Not only that, but they purchased an accessible van to help their sister get around and shop, something she’s always loved to do.
“With each new change in her life, we try to substitute it with something else,” Deborah Crockett said.
She wasn’t always like this though.
“Her condition has changed drastically,” said Deborah Crockett. “We were traveling partners and took a vacation every year.”
She used to work as an escrow officer, spending most of her work day talking to clients, Deborah Crockett said. She was an “avid bike rider.” She’s also a member of Zeta Phi Beta Sorority, has always been active at her church, Trinity United Church of Christ, and has been a mentor to girls in the community.
Before Crockett was diagnosed, she began to show early symptoms in 2014, but had to take a couple of tests and go through physical therapy before doctors figured out what it was.
“She was going back and forth to her orthopedic,” Crockett said. “Physical therapy didn't work. She went to a neurologist. We started noticing a change in her speech. She’d slur from time to time.”
When the family discovered the cause, it wasn’t what they had expected.
“It just hit us all like a ton of bricks, like a deer caught in headlights,” Deborah Crockett said. “We had no idea what to do next. The most devastating part was reading that there was no cure and the life expectancy is three to five years. That was just really hard for us.”
After the initial shock, everyone stepped up to assist in their own way, whether that was research, finding a support group or getting insurance questions answered, they all pitched in. Crockett has four brothers and two sisters. Their mother died in 2010.
Deborah Crockett said she’s looking forward to the walk this weekend and hopes people will come support the cause.