In the spring of last year, Rebecca Luker started having problems with her mobility.
“I noticed a weakness in my left ankle and kept tripping and falling and that sort of thing,” said Luker, who grew up in Helena and graduated from the University of Montevallo before she moved to New York, where she has been nominated for three Tony Awards.
Luker saw a neurologist and was treated for a pinched nerve and spinal stenosis, but after surgery she continued to get weak and “knew something was wrong.”
In November 2019, she was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
Luker went public with her diagnosis in February as she began a fundraising campaign for human trials of Prosetin, a promising ALS drug. A fundraiser on June 17 at 7 p.m. via Zoom, “At Home with Rebecca Luker,” will feature Luker singing three songs and having a conversation with journalist Katie Couric. Tony-winner Santino Fontana will host. (Visit fundraise.projectALS.org/luker to donate and register for the live stream. A $25 minimum donation is suggested.)
The ALS diagnosis initially frightened Luker.
“I only knew about the scary things I have read and heard about the disease,” she said. “A young man from my high school days died of it in the late ‘90s, and that was all that I could think about. But then I started reading more about the disease and the fact that people can arrest it and reverse it. And now I have several friends I stay in contact with who are living with ALS. We help each other through this.”
Luker’s legs gave out in March, and she has been using a wheelchair since then.
“My arms and hands are weakening now, but I’m praying that I hold onto the strength that I have until something starts to make me better,” she said.
Singing, too, has become increasingly difficult for Luker, whose soaring soprano has graced Broadway shows such as “The Phantom of the Opera,” “The Secret Garden,” “The Sound of Music,” “The Music Man,” “Show Boat,” “Fun Home” and “Cinderella” (with Fontana).
“The reason for this is that I have a very weak diaphragm now,” said Luker, who turned 59 in April. “My lungs are perfect, and there’s no problem there, but because I can’t sit up by myself and have no diaphragm to speak of, I have to raise myself up on my elbows on the arm of my wheelchair in order to have any kind of support.
“I still enjoy singing, and it’s good for me to sing, but I don’t sound the way I used to,” Luker added. “It’s sad for me, but I think I will be back one day.”
Though the disease is slowly progressing, Luker is hopeful that a drug like Prosetin might end up helping her.
“No one knows my prognosis, but it’s not usually good with this disease,” she said. “ALS affects everyone differently. Some people plateau and stay the same for decades, like Stephen Hawking. Others progress quickly and die within two years. Still others arrest and reverse the disease. I intend to be in that third group. I am in excellent health in many respects, and this is lucky for me.”
Luker is using a combination of treatments, including a holistic approach, Western medicine, healers and meditation.
“I believe this combination is a winning one,” she said. “I have the best doctors in the world and access to any and all information on trials and things that could help me.”
Luker thinks that Prosetin is one of those things that could help her and others, so she’s actively fundraising for the future of the drug, urging people to donate through Project ALS or Prosetin2020.org.
“The drug is exciting because it’s the first brain-penetrant drug,” Luker said. “It gets into the brain through the protective sheath and targets motor neurons that need repair. Cells from actual ALS patients are used for this. Many people are excited about this drug. Let’s pray it works.”
COVID-19 has slowed Luker’s treatment, and both she and her husband, Tony nominee Danny Burstein (“Moulin Rouge”), came down with the virus but overcame it.
“Danny is the one that really had a hard time of it, as he was hospitalized for six days while on oxygen,” Luker said. “I only had a few days of a low-grade fever along with the loss of my taste and smell, which has returned. I was very lucky. Danny’s doing well now, and his lungs are probably just about healed.”
“Moulin Rouge” and other Broadway shows are shut down because of COVID-19, and Burstein is helping his wife with the fight of her life.
“There could never be a better caregiver than my husband,” Luker said. “I don’t know what I’d do without him. This has been very hard on both of us, as you may imagine. Broadway shut down on March 12, and it may not be open again till the first of the year or after. Danny calls it ‘The Lost Year.’ It has all been very strange. If any show were to reopen, ‘Moulin Rouge’ is probably on that list, but nobody really knows what will happen. Broadway will come back.”
And Luker hopes she’ll be back, too, though she knows it will be a difficult journey.
“At this point, I don’t know if I’ll ever walk again, but I am determined to get there,” she said. “The day I walk across the stage again will be a great day.”