Matter of Mind: My ALS is a new documentary that follows three people living with ALS. The film is available to stream for free here with the password: ALS.
Development Director Amy Easton had the chance to talk with one of the film subjects, Charlie Wren, who has ALS, to learn first-hand why they felt it was important to be a part of this documentary project.
What was your reason for wanting to be part of this documentary?
Charlie Wren: I originally started as an adviser. They found me on social media and through the ALS Association. I gave my views and opinions on what they should show and what they shouldn’t. I told them ALS isn’t about older white guys with their Barbie-looking wives half their age and their kids in ivy league schools, not about CEOs of Fortune 500 companies, professional athletes, or people already famous in the entertainment world. They should show regular ordinary people that have ALS and their families. Show the real faces of ALS. As time passed, I was asked if I wanted to participate in the documentary. I leaped at the opportunity to participate in something bigger than us, and I wanted to be a part of any forum that educates what ALS is and spread the word. Something that would show different journeys taken. I’ve never been a good poster boy for ALS, so I do my best to help others with this devastating disease. I wanted people to see you can live with advanced ALS and be happy.
Why should someone see this film?
Charlie Wren: If you have ALS, you’ll see three possibilities on your journey. You can try for the extreme or end it. No matter what a person decides, it’s hard on the family. For an individual who doesn’t have ALS, watching this documentary might be a looking glass into what ALS is. Pamphlets and literature always show happy families with smiling faces, with an old guy in a power chair and a beautiful lush background. The truth is that’s not what ALS is about. Everyone goes through family, financial, insurance, and health problems the whole way through. It’s not a happy time, so you must reinvent yourself and find a new purpose to be satisfied and happy. This is a powerful documentary on ALS, the struggles of life, and the fight.
What advice do I have for someone who is newly diagnosed?
Charlie Wren: First, you have to decide if you want to live or die, with ALS. If you decide to live, you have to be proactive with the steps of progression, like getting equipment and procedures early. When you need something, it’s a little too late. Get everything before you need it. The wait for equipment or a feeding tube can be long and a killer. Losing weight and procrastinating is a killer as well. So many people have gone through heartaches and suffering due to their procrastination. So, please don’t do it! Another tip is to find good ALS doctors and clinics. I’ve always thought that the biggest killer isn’t ALS, but incompetent doctors who don’t give you options or information. There’s nothing worse than someone who can’t speak, has a hard time breathing, aspirates while eating, has lost a lot of weight, and no medical professional has told them about things like a BiPap, eye charts, communication devices, feeding tubes, or about the different ALS organizations, which leads to people falling through the cracks. You have to be your own advocate and talk to others that have this devastating disease. I hope this helps someone who is newly diagnosed. Living with ALS is hard, but it can be done, especially if you have love and support from others.