Friday, June 19, 2015 | 1 a.m.
Actress Madeleine Stowe (“Revenge”) lost her father to the ravages of Multiple Sclerosis after a 20-year battle, and now she’s settling the score with a vengeance in a unique payback reprisal. Her “Lights, Camera, Take Action on MS” tour stops in Las Vegas on Saturday.
She’ll share her story among a series of Hollywood-themed sets at the Renaissance adjacent to the Convention Center from 11 a.m. to 2 p.m. Each set has a different theme to help people living with MS and their families to learn how to manage the many aspects of the disease.
“My own father, Robert, had MS back in the day when there were no treatment options,” Madeleine told me. “It’s really heartening to see MS progress has been made since he had the disease and the advancements now. I have joined up with Genzyme, who has been doing a lot of terrific work with MS patients. I don’t want any patient or family to endure this ordeal of memory loss and tremors.“
Multiple Sclerosis is a disease in which the immune system eats away at the protective covering of the central nervous system. There are as many as 3 million cases reported each year in the U.S., but the cause is still unknown, although scientists believe the disease is triggered by as-yet-unidentified environmental factors. Here in Southern Nevada, an estimated 10,000 to 12,000 patients suffer from the disorder. It is an unpredictable, disabling disease that disrupts the flow of information in the brain and between the brain and the body.
Here in Las Vegas, our Keep Memory Alive charity, which had its annual “Power of Love” fundraising gala with Celine Dion and Andrea Bocelli at MGM Grand last Saturday, supports the battle against MS at the Cleveland Clinic Lou Ruvo Center for Brain Health. 2014 honoree singer Gloria Estefan donated and raised funds for the MS program at the Brain Health Center because her father, Jose, died from the disease.
Madeleine is on a cross-country tour hosted by Genzyme to raise awareness of the disease. “Las Vegas is just one stop on a multi-city tour including Chicago, Orlando, Houston, Atlanta and Pittsburgh. The website TakeActionMS.com has all these lovely testimonials from people who have attended our events and talked about their condition. It’s very, very moving, and I think that the idea is that if we can just be very proactive about it, bring it out of the shadows and into the light, people take heart from it. They become energized after these meetings. The website is very important in bringing it out.”
Here’s our Q+A:
People tend to feel very uncomfortable with the subject of MS, Parkinson’s, Alzheimer’s and all these other related brain diseases. Is that part of the purpose here, to get people to not only be aware about it but also talk about it and realize how important it is to fight them?
It’s a big part of it. Also, we’re in an age where the Internet is important. There’s a lot more information, but to find something to where it can be cohesive and there are strong visuals is quite important and has quite a lot of impact. We have found that this is very helpful. When people attend these events, it’s a very informed community and a very dynamic community in terms of communicating with one another. There is a lot they don’t know, so it’s all about bringing up ways that they take to manage their disease and also inform on what’s out there and take action.
What are some of the poignant memories you have of your dad battling MS?
They are very difficult ones because at that time there were no treatment options, and the particular form that he had was a rapid progression. I know there were things going on when I was 3 or 4 years old that I was hearing that he wasn’t right. He was diagnosed when I was about 4 or 5 because sometimes it takes a while to have diagnosis, and by the time I was 7, he was retired and in full-time care.
It was troubling because we lived very much on hope. At the time, people would say a cure would be around the corner. He was pretty much robbed of everything — of his mental faculties, of his physical capabilities. He was a really strong-willed man. I was my mother’s primary caregiver for him. We had to bathe him and feed him and clothe him as time went on. His short-term memory wasn’t great, but he had decent long-term memory, and he’d go back to the war days and music that moved him a lot. He did have funny stories about his family.
My father always remained somewhat of a mystery to me because I couldn’t get into his head, and when you’re a child, you always want to say, “Dad, what do you think about this?” And “what do you think about that?” And “tell me what you’re experiencing.” He wasn’t very communicative. That was difficult. Something in me told me that he had to exercise, that it was important to sustain his strength.
We used to have contests of will that became quite funny and sometimes a little volatile. Where a child would try to force her father to stand up and he wouldn’t and I would fight him and say, “We’re getting up, and we’re going to do this” and pulling him up by his belt straps just to get him to do leg lifts. These were particularly strong memories that I have of him. He was an unknowable fixture, and that was very difficult on him.
Now in retrospect I feel bad about it because I thought perhaps it was laziness, and that’s what a lot of MS patients go through. Most of them don’t have the disease the way my father had it, but when they say, “I need rest, I’m tired,” they really are tired, and they have to learn to conserve their energy. With my father, I was a bit less forgiving, and I wish I had done that back then.
It’s as tough on the caregiver as it is on the patient, isn’t it?
I read that you can never be a full-fledged caregiver because you’re not walking in their shoes. You’re not living in their shoes. Deprivation is a very interesting thing. If you’re able to really love, you stick by that person until the very end. My father had the disease for 20 years.
In 1983, he passed away, and my mother was by his side all the way through. She had a lot of sleepless nights, I had a lot of sleepless nights, it meant things that were very difficult whether it was changing his bedding, rolling him over in the middle of the night so he could be comfortable, those kinds of things.
I loved my dad. I didn’t know him, but I loved him. That’s the kind of memorable thing of actually being a child, but by the same token it dissolves almost sort of another persona, a kind of willfulness. I don’t want to say MS gave me that. I ended up having a very strong career but dignity issues for the rest of my life. I do feel really connected to MS, but I’ve always rooted for the underdog in life.
Did your father “know” you?
Yes, he did for a long time. He always wanted to know where I was. As time went on, I knew that he knew me, but his short-term memory was bad, so he would ask the same questions within minutes of each other. He would ask, “Where are you?” And I would be sitting right across from him. It’s very similar from people who suffer from Alzheimer’s, but that happened by the time I was a teenager. When I came to see him in the hospital, he did know me until he lapsed into a coma.
It’s a shocking, frightening disease.
It’s not that way for everybody. Right now there are treatment options that can help with the symptoms, help with slowing the progression. I’ve met people who’ve had the disease who’ve haven’t seen the battle that my father did and are living really vital lives. One of the really important things is to not isolate and to be able to be frank and discuss things and develop a support system around you where you can say, “This is what I’m feeling on this day.”
I don’t want this to sound flip, but is this tour your “revenge” against the disease?
You can say that it has, and in another way, it’s also just really helped me understand it better. To heal a really big wound that I never thought could be healed. I tried doing it in other ways that were maybe not necessarily healthy, but to be able to go out and talk and speak to the community is pretty sweet revenge.
Is it a burden lifted off your shoulders? A catharsis?
I never thought of it in terms of a burden; it just was what it was. I do remember as a child wanting to go out and play and at the same time always keeping an eye out for my father. Running from the inside to the outside and back. I remember sometimes seeing him looking at me through the window.
He’d be on the front porch watching us play, but he couldn’t engage, so there was a constant awareness of his presence. The times of feeling fully free were few and far in between, but that never rebelled. I think maybe becoming an actor was rebelling as such. It was quite shocking to my mother.
Your character, Victoria Grayson, is the main antagonist on “Revenge.” But you’ve walked away from the ABC series?
At the beginning of Season 4, I sat down with the producers and executives, and I thought unless you change the story enormously, there really is no story to be had. We asked for an exit strategy, which they were very accommodating, and it was provided.
I hoped for the other cast members that maybe they would be a repeat of the show or change the nature of the show, just without Victoria. I thought Victoria’s story was quite done, but they wanted me there until the bitter end of Season 4. I believe in storytelling, and I felt that her story was over.
So what’s next for you?
There’s a film that I’ve wanted to direct for a very, very long time. It was all put together while I was shooting “Revenge.” It was very wonderful and a miracle in this day and age. I couldn’t get out of the TV schedule because it was a 12-week shoot. So we’re busy putting the film back together again.
There’s also a television show that I’m developing. In this day and age now that you don’t have to do 22 episodes, TV is being done between seven to 12 episodes, I think that I’ll be able to do both.
What’s the main message you want to give to people in Las Vegas dealing with MS?
I think all people have to do is go to the website TakeActionMS.com, and they can sign up. I’ll be meeting people and talking to them and exchanging stories and talking one-on-one. We’ll have a panel of neurologists, and they’ll take questions from the audience.
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“Lights, Camera, Take Action on MS” features Madeleine Stowe and is hosted by Genzyme at Renaissance Las Vegas, 3400 Paradise Road, adjacent to the Las Vegas Convention Center, from 11 a.m. to 2 p.m. Saturday.
Robin Leach of “Lifestyles of the Rich & Famous” fame has been a journalist for more than 50 years and has spent the past 15 years giving readers the inside scoop on Las Vegas, the world’s premier platinum playground.
Follow Robin Leach on Twitter at Twitter.com/Robin_Leach.
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