In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories 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 the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 10th profile in that series.
“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.”
Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”
Called “Little Things,” the PSA featuring Donna shares a glimpse into her daily life and provides a sense of how her family and friends, who call themselves Donna’s Divas, have stepped up and stepped in to fill some of the gaps created by ALS. (Check it out below.)
Donna stresses the importance of knowing she’s not alone, not letting the disease define her, appreciating the little things, not sweating the small stuff, and getting through what she called the “woe is me” days.
“Laugh or cry,” she said, when asked to describe her personal mantra. “Crying gives me a headache, so laughing it is.”
Donna lives with her youngest daughter, Baylee, who is in college. Her other adult children, Blake and Bobby, and her boyfriend and primary caregiver, Tim, live nearby.
Later this year, they and the rest of the Donna’s Divas team will participate in their sixth annual Johnstown Walk to Defeat ALS. The team grows every year and currently includes close to 50 team members.
Earlier this month, Donna and Tim attended the National ALS Advocacy Conference in Washington, D.C., so she could tell her story on Capitol Hill.
“I’m happy that my chapter has given me a platform to spread awareness,” she said. “You always have to be sharing information and awareness and personal journeys, because it’s different with each individual – the stories from before the disease, your attitude, your outlook on life, the course of the disease.”
With the help of Danielle, who cares for Donna during weekdays, we interviewed Donna about our ALS Awareness Month campaign and what she wants you to know about ALS.
Tell me a bit more about Donna’s Divas. How did the name come about?
My older sister, Deanna, came up with the name. [One day we were] at my mother’s house and one person was doing my hair, one was adjusting my jewelry. It was like a pit crew.
[Deanna’s] daughter, Christine, my niece, formed the [Donna’s Divas] team and made all the shirts by hand.
What would you say to someone newly diagnosed with ALS?
Just don’t give up. Use all the resources available to you. And whatever you believe in, have faith. And family support is the most important thing – [as well as] all relationships.
What comes to mind when I tell you about the Raise Your Voice theme for this year’s ALS Awareness Month?
I always say, “If I have to be the face of ALS, it’s not a bad face to have.” And I’m happy that my chapter has given me a platform to spread awareness.
Attending [this year’s] Advocacy Conference was completely mentally, physically, and emotionally exhausting and took an immense amount of fortitude. However, it was worth it to be able to share my story. Part of my speech, which was typed into an iPad and played with a voice app, went like this: “I may not be speaking to you with my own voice; however, I will still be heard. The physical, emotional, and mental fortitude to make this trip today and to live daily with ALS takes an immense amount of energy. My goal today is to make a powerful impact, so that when you hear the words ALS, you will remember my story.”
How does The ALS Association support you?
I can call The ALS Association [Western Pennsylvania Chapter] for anything, at any time, and they’re always willing to work with me.
I went to the Pirates game through the Pirates charities [this week]. Kristi [from the chapter] came out when I did the [PSA] shoot and took some photos. And, of course, [there are the] Walks [and] caregiver support groups at Seven Springs once a year.
Also, a blood drive is held in my honor [each year]. I’m able to use this platform to advocate for ALS and draw attention to the need for blood donations. I also [provide] each participant with the red ALS bracelets and [tell them] to go to the website listed on the inside of the band and learn more about how to advocate.
I had an issue with getting Boost [nutritional drinks] very recently. Something changed with my insurance and I wasn’t able to get it covered. Marie [with the chapter] is working on getting my Boost covered again.
They are very supportive and help with everything.
What do you want to say to people with ALS reading this article?
Just know you aren’t the only one. Really appreciate the little things in life. And do what you can while you’re still able to do so.
My outlook on life completely changed once I accepted I have ALS. [I’m] not sweating the small stuff. It’s all about positive thinking. I still have a few “woe is me” days, but I get through them.
From a patient standpoint, always take control of your appointments. If you don’t understand something, ask. You’re always in control. If you leave an appointment not understanding, then you didn’t do your job as a good patient.
Any final advice?
Never, and I mean, NEVER, let someone tell you, “I know how you feel.” Because no way in hell could they know […] unless [they’ve] spoken to other patients or are a person living with ALS.
I had a really emotional clinic appointment last month, where decisions came up about the future. Always have a plan and set goals – minute by minute, hour by hour, and day by day. That’s how I live my life.
If you can’t do it as a day, look at it as an hour. If an hour is too long, look at it as a minute.
In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for Donna and all people living with the disease.
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.