In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the sixth profile in that series.
Jason Walker believes his greatest accomplishments have come since his diagnosis with ALS – specifically, being a husband and a father. He met his wife, Annie, three years into his ALS diagnosis and they started dating a year later. They were married in 2014.
“[Annie] chose to look past my disease and see me for me and vowed to stand by my side as we navigate this journey together,” Jason said. “That tells you a lot about the kind of person Annie is – a remarkable, caring, inquisitive, hard-working, loving, beautiful, and endlessly supportive woman.”
A couple of years later, Jason and Annie’s daughter, Eloise, aka Ellis, was born. She is “a precious baby girl,” Jason said, “[who was] brought into this world among our hectic and often chaotic life.” Calling her “incredibly compassionate, patient, and observant, as well as absolutely adorable,” he said. Ellis is tolerant and, even though she isn’t yet two years old, she seems to understand there are times her needs become secondary.
“[Ellis is] my everything and, as if I didn’t have enough reasons to fight this stupid disease, she’s more reason than any,” Jason added. “I LOVE MY GIRLS!”
Past and Present
Jason Walker was working as a bartender, living a carefree life of adventures. He was a healthy and fit 28-year-old in 2004 when a diagnosis of ALS completely rocked his world.
Today, at 42 years old, Jason has only slight movement in his legs, speaks with very slurred speech, is bed-bound and wheelchair-dependent, and uses an eye gaze computer for most of his communication.
“Four months after marriage came the toughest decision of my life – to get a tracheotomy,” Jason explained. “I looked at Annie, with tears in my eyes and tears in hers. She said, ‘I think you know what we need to do.’ [And] with that, I extended my life and got a trach and a feeding tube. After a year of figuring out ‘trach life,’ we decided to start a family.”
“Good Night” Hero
Jason, Annie, and Ellis are the featured “heroes” in one of The ALS Association’s new PSAs called “Good Night.” (Check it out here!)
“Participating in the PSA was amazing,” Jason said. “Honestly, I went into the process not knowing exactly what it was; however, I figured anything to help raise awareness against this devastating disease would be outstanding. Filming was long, but the crew was very accommodating. Who knew it took 12 hours to shoot a short commercial?”
He said the best part about filming the PSA was that everything about it was real. The film crew gave the family very little direction to keep things natural. “There was very little stress because we weren’t trying to act for a role. It truly was a film crew filming part of our everyday routine, which makes it really special.”
Jason is most excited about sharing the PSA with Ellis in a few years.
The Future and The Voice
When asked what he’d say to someone newly diagnosed with ALS, Jason said, “Your life isn’t necessarily over. With a healthy, positive attitude, you can overcome more than you think you can. I’m over 14 years fighting. I just started a family and I’m not done accomplishing big things.
He firmly believes his personal mantra speaks for itself: “Your future will take care of itself, as long as you take care of today.”
The ALS Association Central and Southern Ohio Chapter is helping Jason look ahead to that future. They’ve given him and Annie access to their loan closet, which has provided them with equipment they need but can’t afford.
“There’s a lot of equipment that isn’t covered by insurance, or takes a long time for approval, and The ALS Association has helped us fill in the gaps,” he explained. “We’ve borrowed a portable wheelchair, a portable ramp, a shower chair, and a Hoyer lift to help me get out of bed and into my wheelchair. There’s also been some financial assistance in the form of the ALS Care Grant to help offset some of my outrageous medical bills.”
When asked his perspective on the “Raise Your Voice” theme for this year’s ALS Awareness Month, Jason thought about marching with other ALS Advocates on Capitol Hill to secure funding for research and the National ALS Registry; going to the Ohio State House to spread awareness and ask for funding on a local level; participating in many Walks to Defeat ALS and the ALS Ice Bucket Challenge; and attending all the small benefits friends held in his name.
“Then there’s the counterpart of all those lives lost to ALS who were a part of all these great accomplishments,” he said. “I urge everybody to get involved and raise their voices the best way they see fit.”
Jason wants people to continue learning about ALS, talking about the lives affected, and raising money “so we can get answers to all the unknowns.”
He finished with this prevailing thought: “There needs to be a cure, and until one is found, we need to keep fighting.”
In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for Jason and others living with the disease. What can you do?
Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.
Raise Your Voice however you can. Together, we will be heard.