Excerpted from “Wicked Diseases, Advocacy, and Gifts, Oh My!” from Dimensions Magazine – Spring 2020: Pgs 24-27. Click here to read or download the PDF version of this article.
By Kevin Kvarda
Hello Friends! My name is Kevin Kvarda or you can call me “K-Squared.” Since June of 2019, I’ve had new friends in my life — a diagnosis of Alzheimer’s and Primary Progressive Aphasia (PPA). I’ve not necessarily been one to stand up on the public stage, but my diseases have pulled me out and given me a voice…a positive voice and hope.
I have a great caregiver team: My wife Norma, four kids (Riley, Andrew, Quinlan and Jordan), extended family in other states and many friends from past work teams, and my men’s spiritual groups.
I sometimes think of my new experience in the terms of The Wizard of Oz movie, in that we have a Scarecrow that needs a brain (and I have a brain that is different due to the diseases), a Tin Man who needs a heart (and I have a huge heart because of family, friends and awesome physicians, etc.), a Lion that needs courage (and I have strong courage from family, spiritual men’s groups, and taking one day at a time).
And even though there is the Wicked Witch of The West in my story, we have many organizations that are working around the clock trying to find the cure. Remember what happened to the Wicked Witch of The West in the end!
Overall, I have embraced my diagnosis, which is causing my dementia, aphasia and disability. Yes, I really did say that! Crazy huh…but it’s true. They are unique and go with me every day. Since I found them, they have given me opportunities to make others laugh, get mad and cry too.
I believe that nothing comes by “accident.” There is always a reason! I also believe that all of us have a higher power that guides us. It doesn’t matter what your faith (or not) is. Mine is my Roman Catholic Christian faith. What is your higher power? Embrace it, cling to it, use it to help others and yourself! I believe that we all have our guardian angels. I’m convinced that those angels do amazing feats every day. I’m deeply thankful! Believe!
My Advocacy Day Experience
On Feb. 18, 2020, I traveled to Olympia to act as an Advocate for the Washington State Chapter of the Alzheimer’s Association. It was Advocacy Day when anyone can participate and urge public officials to support additional resources for Alzheimer’s disease. I decided to share my personal story.
I had nerves that morning—after all, I haven’t been one to get up and give speeches all of the time! But, I felt I needed to right then. I just took the opportunity and gave it what I could. And, it came out good. I talked about how I turned 180 degrees after my diagnosis and made a not-great thing into a great thing, through advocacy. In all, I visited five different legislative offices. It was pretty cool because at every meeting, I heard things like, “Wow, I never heard a story like yours before.”
What we do is really critical to keeping the balance for patients and caregivers, researchers, medical professionals and support associations.
Anyone can become an advocate through the Alzheimer’s Association! Advocates are invited to engage public officials and policymakers in a variety of ways, from trips to Congress, to emails and Facebook posts, urging their support for critical Alzheimer’s legislation and policy changes.
Please join us for the Alzheimer’s Association Washington State Advocacy Day as we press legislators to fund better care and support and other priority recommendations in the Alzheimer’s State Plan. All meetings to be held online or by phone using the Zoom platform. Learn more at alzwa.org/advocacyday
2 thoughts on “My Advocacy Story: Kevin Kvarda”
Love this story. I met Kevin on Advocacy Day 2020 and was so impressed with his genuinely honest story. Thank you again, Kevin, for reminding us how important advocacy is.
Great job, Kevin. COURAGE!