ALS Association’s Evergreen Chapter: Survivor Stories Series – Valerie O’Mara
SEATTLE, Wash. May 1, 2023 – ALS, known more commonly as Lou Gehrig’s disease, is a devastating diagnosis to receive. There is no cure and the life expectancy of someone with the neurological disease is two to five years.
Valerie O’Mara was diagnosed with ALS back in March of 2018, just recently surpassing her five-year mark. Though she’s beating the odds, she says she’s definitely been in the throes of the disease.
“I had to leave my job in January 2019 and that was sad but I had a very new grandchild born that October so I easily said I’ll miss the people, I’ll miss the job of my life, but this is where I need to focus,” says O’Mara.
For O’Mara, she continues to look at the silver linings of her life, like seeing her children and siblings more often.
“The benefit is that our oldest son and his wife live out in Pennsylvania,” explains O’Mara. “There’s more of an effort. You know we used to go back there once a year, they would come out here once a year, and now they’re coming out here more. So, I think that if there’s a good, it’s that we’re making good use of this time while we can.”
Following a fall back in the summer of 2019 that led to O’Mara breaking a few bones in her ankle, she’s been reliant on her power wheelchair to get around.
“There was an OR tech at the hospital I worked at. We sort of knew each other in passing to say hello but didn’t work together. I worked in cardiac surgery. She was in general surgery, and she worked the night shift but her stepfather had been diagnosed with ALS. He was a vet, and they ordered a chair for him from the VA and it arrived, and then he died three days after the chair arrived.”
This family had a $22,000 wheelchair sitting in their garage with only three miles on it, so they gave it to O’Mara. Now, the chair has over 1,000 miles on it.
“Most of these miles are my little granddaughter and I just going around through the neighborhood and looking for flowers and worms and bugs and rabbits and just having the best time,” says O’Mara. “We now go down to Lincoln Park in west Seattle. I can’t help her on any of the equipment, but I watch her and there’s a wading pool that she goes in. So, she and I have some special moments.”
Though the wheelchair has helped her stay active and involved despite her diagnosis, O’Mara’s ALS continues to progress.
“My voice now is a little more gravelly, not as much volume to it” says O’Mara. “My hand function has really deteriorated. I actually can really no longer write. I use Siri for texting. The computers a little harder.”
O’Mara just started using a new device, known as tobii dynavox. According to the company’s website, the eye tracking or gaze interaction technology is used to see where a person is looking on a computer screen. It can also be used to control a computer with your eyes instead of a keyboard.
“It’s its own little monitor and you set it up and you look at things with your eyes,” says O’Mara. “It’ll spell things for you. You can play games; you can send emails you can do things. I just got that it but I look forward to using that to continue to communicate when I don’t have the voice or the hands to do it.”
O’Mara considers herself to be an optimist, looking at the glass as more than half full, but she says she’s realistic about her condition.
“I truly am one of the lucky ones because there are many people that don’t live for a year after their diagnosis,” explains O’Mara. “Or you know I could’ve stepped off the curb and got hit by a car and not have this chance to say these goodbyes.”
Knowing what she knows now about the disease, it’s important for her to lend a hand, wherever she can, while she still can, especially with the ALS Association’s Evergreen Chapter.
“I love this chapter that we have out here,” says O’Mara. I think they are boots on the ground. They support people at the ground level and that’s wonderful.”
For O’Mara, supporting local events, like the Together, We Are… Hope, Courage, Love Gala for the ALS Association’s Evergreen Chapter, is crucial in making sure other families don’t have to go through what she and her family have.
RELATED LINK: 2023 ALS Association Evergreen Chapter Gala: How You Can Support Washingtonians With This Rare Disease.
“It helps people in our backyards,” says O’Mara. “It helps the local people. I will say that I am lucky to live in Seattle and develop this disease because if I was in rural Montana, Idaho, Alaska, or Washington, I wouldn’t be able to have the type of care that I have now and the one thing that Covid did that helped us was telemedicine. You know zooming your appointments. You know Medicare just a bit ago they’ve been trying to get rid of Telemedicine because the docs are charging the same amount of visit even though they weren’t physically examining them but if they didn’t have those it’s just so good to be able to connect and I take for granted that I am able to see my doctor in person we have an inter-disciplinary team there’s like 12 people I see when I go in for those visits so I think people going just need to realize the money raised helps buy equipment for somebody who maybe can’t afford a walker or a scooter or a shower commode chair…This helps provide technology and assistance for people. You know the caregivers can come out to the home and help do an assessment and see what’s what. So, I think what I appreciate the most from this local ALS chapter is what they’re doing for people in their homes.”
Gala Information:
For those wanting to attend the Together, we are- Hope, Courage, Love Gala, you can visit this page to purchase a ticket or donate. The event will be Saturday, May 20, 2023, from 5:30 pm to 9:30 pm at Absolute Mobility in Woodinville, Washington.
Additional Support:
Right at Home understands the importance of supporting not only those with different conditions but family members as well. If you or a loved one has ALS or other diseases and need care, please reach out to us through our websites listed below or call us at (206) 774-1100 for information on our services.
ALS Survivor Valerie O'mara
