Within the spring of final yr, Rebecca Luker began having issues along with her mobility.

“I seen a weak point in my left ankle and saved tripping and falling and that form of factor,” stated Luker, who grew up in Helena and graduated from the College of Montevallo earlier than she moved to New York, the place she has been nominated for 3 Tony Awards.

Luker noticed a neurologist and was handled for a pinched nerve and spinal stenosis, however after surgical procedure she continued to get weak and “knew one thing was flawed.”

In November 2019, she was recognized with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s illness, a progressive neurodegenerative illness that impacts nerve cells within the mind and spinal wire.

Luker went public along with her analysis in February as she started a fundraising marketing campaign for human trials of Prosetin, a promising ALS drug. A fundraiser on June 17 at 7 p.m. through Zoom, “At Residence with Rebecca Luker,” will characteristic Luker singing three songs and having a dialog with journalist Katie Couric. Tony-winner Santino Fontana will host. (Go to fundraise.projectALS.org/luker to donate and register for the dwell stream. A $25 minimal donation is recommended.)

The ALS analysis initially frightened Luker.

“I solely knew in regards to the scary issues I’ve learn and heard in regards to the illness,” she stated. “A younger man from my highschool days died of it within the late ‘90s, and that was all that I may take into consideration. However then I began studying extra in regards to the illness and the truth that folks can arrest it and reverse it. And now I’ve a number of associates I keep involved with who’re residing with ALS. We assist one another by way of this.”

Luker’s legs gave out in March, and she or he has been utilizing a wheelchair since then.

“My arms and palms are weakening now, however I’m praying that I maintain onto the power that I’ve till one thing begins to make me higher,” she stated.

Each Rebecca Luker and her husband, Danny Burstein, have been nominated for Tony Awards. (contributed)

Singing, too, has turn into more and more tough for Luker, whose hovering soprano has graced Broadway exhibits reminiscent of “The Phantom of the Opera,” “The Secret Backyard,” “The Sound of Music,” “The Music Man,” “Present Boat,” “Enjoyable Residence” and “Cinderella” (with Fontana).

“The rationale for that is that I’ve a really weak diaphragm now,” stated Luker, who turned 59 in April. “My lungs are excellent, and there’s no drawback there, however as a result of I can’t sit up on my own and haven’t any diaphragm to talk of, I’ve to lift myself up on my elbows on the arm of my wheelchair with a purpose to have any form of assist.

“I nonetheless take pleasure in singing, and it’s good for me to sing, however I don’t sound the way in which I used to,” Luker added. “It’s unhappy for me, however I feel I will probably be again someday.”

Although the illness is slowly progressing, Luker is hopeful {that a} drug like Prosetin may find yourself serving to her.

“Nobody is aware of my prognosis, but it surely’s not normally good with this illness,” she stated. “ALS impacts everybody otherwise. Some folks plateau and keep the identical for many years, like Stephen Hawking. Others progress rapidly and die inside two years. Nonetheless others arrest and reverse the illness. I intend to be in that third group. I’m in wonderful well being in lots of respects, and that is fortunate for me.”

Luker is utilizing a mixture of remedies, together with a holistic strategy, Western drugs, healers and meditation.

“I consider this mix is a successful one,” she stated. “I’ve the very best docs on the planet and entry to any and all data on trials and issues that might assist me.”

Luker thinks that Prosetin is a type of issues that might assist her and others, so she’s actively fundraising for the way forward for the drug, urging folks to donate by way of Mission ALS or Prosetin2020.org.

“The drug is thrilling as a result of it’s the primary brain-penetrant drug,” Luker stated. “It will get into the mind by way of the protecting sheath and targets motor neurons that want restore. Cells from precise ALS sufferers are used for this. Many individuals are enthusiastic about this drug. Let’s pray it really works.”

COVID-19 has slowed Luker’s remedy, and each she and her husband, Tony nominee Danny Burstein (“Moulin Rouge”), got here down with the virus however overcame it.

“Danny is the one that basically had a tough time of it, as he was hospitalized for six days whereas on oxygen,” Luker stated. “I solely had just a few days of a low-grade fever together with the lack of my style and odor, which has returned. I used to be very fortunate. Danny’s doing nicely now, and his lungs are in all probability nearly healed.”

“Moulin Rouge” and different Broadway exhibits are shut down due to COVID-19, and Burstein helps his spouse with the battle of her life.

“There may by no means be a greater caregiver than my husband,” Luker stated. “I don’t know what I’d do with out him. This has been very exhausting on each of us, as chances are you’ll think about. Broadway shut down on March 12, and it will not be open once more until the primary of the yr or after. Danny calls it ‘The Misplaced 12 months.’ It has all been very unusual. If any present have been to reopen, ‘Moulin Rouge’ might be on that checklist, however no person actually is aware of what is going to occur. Broadway will come again.”

And Luker hopes she’ll be again, too, although she is aware of it will likely be a tough journey.

“At this level, I don’t know if I’ll ever stroll once more, however I’m decided to get there,” she stated. “The day I stroll throughout the stage once more will probably be an important day.”



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