My name is Keenan Boyd, and I was diagnosed with SCA3 (Spinocerebellar Ataxia 3) in August of 2019.
My father Keith Boyd, aka Sir Ron, taught me throughout my life that no matter what happens, you trust in God, adjust course, and make no excuses. In September of 2018, he passed away at fifty-seven years old due to complications from SCA3.
My father was a very private and reserved man, and at the time there was very little known about Ataxia. This left my family unprepared for the road ahead. Every neurologist that he sought out said the same thing, there was no cure or treatment available.
His symptoms became noticeable around 1999. By 2002, we could no longer play basketball together. Nine years later, he conceded, albeit stubbornly, to using a cane for stability. His mobility gradually decreased, soon dependent on a walker and four years after that, a wheelchair. He was provided a Mobility Scooter by Veterans Affairs, and that became the primary means of mobility for him.
In 2017, we identified that he would need in-home care. Early in 2018, my parents made the difficult decision that he should move to a local nursing home, as my mom was unable to continue caring for him safely from home. Later that year, I saw my father pass in a hospice bed, gasping for air with his every last breath.
Then, came the call. A few months after, I was diagnosed with the same disease that had taken my father from me. I deeply understand the life-stealing trauma associated with this disease.
Like the majority of Ataxia patients that I have spoken with, my diagnosis catapulted my anxiety around my cognitive and kinetic abilities for the future. The beginnings of my symptoms were demoralizing and left me uncertain, leading me down a path of self-loathing. I allowed my thoughts and fears to limit my capabilities, self-confidence, and drive, instead of trading my empathy for self-pity. This spiral took a costly toll on my well-being – mentally, emotionally, and physically; worse still, it affected those closest to me as I realized how much I had taken for granted.
I took a step back to do some serious soul searching to remember who I was. After some time, I came to a realization: I needed to change my paradigm, trust in God to restore me and fight to change the negative mindset I had created that so deeply affected those around me.
I'm a fighter and refuse to adopt a victim mentality even when the odds are stacked against me. I can't change my past, but I can help someone else avoid the pitfalls and emotional damage that I experienced.
I started The Sir Ron Foundation to serve both those who have been diagnosed with Ataxia and their support systems. Whether it be a patient, family member, or loved one, our goal is to educate and equip people with the services, information, and tools they need to better prepare for this disease. If you, or someone you know, have Ataxia, you are not alone in your struggles. We’re here to spread awareness of this rare disease, provide in-home services to those who can no longer care for themselves, and give hope to those who are anxious and fearful about their future.