Former Actor with ALS Stays Active as an ALS Advocate

by Richard Senti on Tue, 2013-09-03 09:00

Actor turned advocate Martin Treat is keeping a positive outlook on life — with ALS

Article Highlights:
  • After receiving his diagnosis of ALS, former actor and teacher Martin Treat shook off the shock and got on with his life.
  • Although he misses acting and the stage, Treat found a new labor of love — writing a play about a newly diagnosed man with ALS and how he copes with the devastating disease.
  • Treat explains that he continues to lead a full, active life by staying busy as an advocate for people with disablities.

When you look at Martin Treat’s headshot from his acting days, you swear you’ve seen him before. His is a classic tough-guy face — square-jawed with ample wavy hair. If you were a casting director, you might give him the nod in a film noir as a gruff, wise-cracking police detective, or maybe a henchman for a mob boss. 

Although he had a few lead roles in his career, he was more of a character actor; his were generally small parts in a few films and on television. He seemed to find his niche in New York’s independent theater venues in the '80s and '90s, performing in a number of experimental works and off-Broadway productions. He also acted in commercials and TV movies.

Scenes from Treat’s play “Camp Gimpy”: Treat performing with Blair Wing (top) and with Gary Widlund (middle); and in rehearsal with improvisation director Cordis Heard, left, and Susan Stevens.

 

In 2010, Treat, 68, was diagnosed with ALS (amyotrophic lateral sclerosis), and this highly active and athletic man’s life was suddenly and shockingly changed.

“At first we thought it was Lyme disease,” Treat recalls. “Living in Manhattan makes a person like me go to the woods more. I was a member of several hiking clubs; I led treks, built trails, climbed mountains. I also played a lot of tennis. So these new feelings of complete exhaustion after a climb, falling on the court chasing down a shot, the shaky leg at an audition … They must be from a recent infection. But they weren’t. An MRI revealed the truth. The physical life I had come to depend on with all my soul had been taken from me.”

Back in the saddle

After the initial bombshell from the diagnosis, Treat and his wife, Kathleen, regrouped, took stock of their situation, then moved on with their lives. Yes, he had ALS, but he wasn’t done living. Not by a long shot. Though he had to give up hiking, climbing, his beloved tennis and even his career on the stage, he wasn’t done with theater.

“The acting I missed most of all, so I wrote a play with a part for me.”

Martin summarizes the play: “It’s called ‘Camp Gimpy.’ A guy named Mike (Gary Widlund) is newly diagnosed and wheelchair bound with ALS and signs up for therapy sessions at a renovated Catskills resort for people with disabilities. He meets Maria (Marla Defex), a polio lifer who he at first clashes with. Around them, the sessions reveal techniques to get along in the abled world — new equipment training, relating with your caregivers, and there are even frank discussions of sex.

“The therapy sessions create situations where we improvise with able participants from the audience: How do you get your wheelchair into a crowded elevator? What if you fall in public? How do you deal with people who are too solicitous? Mike has a hard time adapting, resists physical therapy and even contemplates suicide. But ultimately, he’s won over by his struggling peers, especially Maria (by now they’ve fallen in love), and he becomes determined to make the best of his situation, with the hope to live a full life.”

With Kathleen producing the play, the Treats cast the production with professional actors — some with disabilities — from the city. They also hired a choreographer and director. After a number of rehearsals, two performances (November 2011 and February 2012) were held in a wheelchair-accessible space within their apartment development, designed for performing artists.

“It was a funny, quirky little show,” says Kathleen. “The audience was totally charmed by it.”

Treat at a Hell's Kitchen flea market in New York City
Navigating the streets of New York
At the playground with his grandson, Jacob
Painting with his grandson, Jacob, and his wife, Kathleen
Martin Treat's publicity still from his play "Ernie Pyle's War."

Advocacy as a vocation

A Vietnam War veteran and former language arts teacher in an alternative high school in Harlem, N.Y., Martin was a tireless activist long before his diagnosis. He was a member of his local board of education and involved with a number of local organizations. Even though his voice continues to weaken, he still stays busy by serving on the community board of his neighborhood.

“My speech is very limited,” Treat says. “I use a Spokeman pocket amplifier with microphone at my community board meetings to advocate for pedestrian safety, ADA issues and transportation issues. I'm so slow, laborious and growl-y, and I have to concentrate very hard to be understood. And yet my colleagues on the board are patient and give a full hearing; I believe I’m effective.”

Treat also uses Verbally, an application on his iPad that speaks whatever he types.

Another cause near and dear to his heart is working for better insurance coverage for various therapies.

“People with disabilities need better access to therapy,” he says. “And they need more than insurance or even Medicare allow for all progressive diseases. If I could take more therapy for speech, I could keep talking a while longer. Physical therapy three times a week for progressive motor neuron diseases is a minimum to ask for — it’s life extending.”

Treat is working closely with the head of the New York State Assembly health committee to make inroads in this area.

Even though Treat received his diagnosis more than three years ago, his mobility options are still quite varied. 

“My Manhattan scooter has a folding walker attached on the back, and my walking poles are affixed in front,” he says. “I wear leg braces when I scoot, so I'm ready for any terrain or transfer.” 

Big fan of the 'Big Apple'

Martin Treat may be Manhattan’s biggest fan when it comes to accessibility. “During a summer’s day, Manhattan is full of accessible destinations,” he says, “and every city bus has a lift or ramp.

"Central Park is often my goal, and I can even go in the birding section of the park or to Belvedere Castle. At the Museum of Natural History or the Metropolitan Museum of Art, the attendants go out of their way to help disabled people find their way around. The new bike lanes in the city and the green streets program make the power chair or scooter a new form of transportation: Faster than a pedestrian, they’re an efficient way to get around the town.”

Martin stays on the move as much as possible and leads a rather social life. Says Kathleen: “His intellect is very, very lively and he’s surrounded by people who adore him. He’s an unusual man, with an unusual sense of humor. Everybody loves him. He and I and his friends create enough distractions so he doesn’t dwell on his disease.”

Shortly after receiving his diagnosis, Treat registered with MDA and has attended ALS support groups. “It’s been invaluable in helping me along in my journey,” he says. “Listening to those with ALS and their caregivers describe their experiences has helped us cope with the disease.”

Treat is impressed with the clinic he attends at the MDA/ALS Center at Weill Medical College of Cornell University. “I feel very much involved in the research through this group. They are curious, current and answer questions. I hope to be selected as a subject to an upcoming clinical trial. That's one thing I can do. I have unlimited tolerance for the MRI and EMG [diagnostic tests]. Anytime my Cornell clinic sees something strange and wants to follow a line of inquiry, I'm available.”

Ultimately, Martin Treat has a positive outlook on life with a rich blend of realism and fantasy: “By definition I have a progressive disease, so yes, I'm worse every day, but it’s still easy to sometimes forget. People attend to me and want me to stay alive. I’m a child in paradise. I dream of being normal again, and I also fly.”

Visit martintreat.com to view a clip of “Ernie Pyle’s War,” which Martin wrote and performed off-Broadway, as well as a slideshow of the “Camp Gimpy” performance. You also can contact him through his website.

Richard Senti
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