By Taya Jones – patient, mother, advocate and warrior
In this moment the world slowed down around me as I heard the words come out of the neurologist’s mouth, “You have ALS.” I was shocked. I couldn’t believe what I was hearing. What did this mean for me as a single mother of three, as an endurance athlete, and overall, a very healthy person? It didn’t seem real.
It was September 17, 2018, when our lives changed forever. Who knew that through the grief, trauma, heartache and challenges, I would be able to reflect today on some of the gifts this diagnosis has brought.
Let me take you through my journey from the first recognition of symptoms to my diagnosis. While everyone’s journey is different, I hope that the obstacles I have faced and the learnings I have had can help you and your family. Together, we can fight ALS. Together, we are stronger.
So, let’s start with the first symptoms I recognized. After a bootcamp workout, I returned to my office, and I couldn’t put a bulldog clip on a stack of papers. I didn’t think much of it at the time. I was busy at work and just wrote it off as weakness from my exercise class.
In hindsight, I had been experiencing similar symptoms for a while, like hand cramping when I was holding a knife, but it seemed minor, so I just dismissed it.
That’s the thing with ALS, no two people are alike, and so it’s difficult to identify those early signs. Some weakness in your hand, stiffness in your muscles, and even headaches or fatigue can be early warning signs that are easily ignored.
I first saw an urgent care doctor at the beginning of July, being referred by my chiropractor after I mentioned the hand weakness to her. The doctor mentioned multiple sclerosis (MS) as a possible cause and referred me to a neurologist. I pushed for an MRI requisition – the first of many times I had to advocate for myself – and he gave me one but said it could take months.
I called the imaging department every single day to see if there was a cancellation, and sure enough, got in just a few days later. The results of the MRI ruled out MS.
Over the next month, I underwent a dizzying array of tests to rule out more common diseases. Countless vials of blood taken and tested, multiple electromyography (EMG) tests, a second MRI, and a lumbar puncture – all of which are no walk in the park.
I had to advocate for myself at every step, to get the testing I needed, and to get it in a timely manner. I remember when I went for the lumbar puncture, my doctor said, “I’ll come in and do it on my day off, but I don’t have a room.” Well, that day I went to the ambulatory care desk and said, “okay, we need a room for a lumbar puncture.” The woman at the desk was shocked by my request and said, “this is not how things are done,” and I replied, “that’s okay, this is just how we’re going to do it today.”
An EMG was the final test before I received my diagnosis on September 17, 2018 – I had ALS. My first thought went to my three children and what this meant for them.
That appointment was a blur of emotion and disbelief. Your head spins for a while. Coming to accept the diagnosis is a different process for everyone and for me, I realized that I needed to focus on what I could control. Sadly, even more than 80 years after Lou Gehrig lost his battle with ALS, the disease is still a 100 percent fatal disease.
You need to try and wrap your head around the outcome of ALS fairly quickly so that you can continue to appreciate what’s right in front of you.
Looking back, I was fortunate that my diagnosis only took two months. ALS is a diagnosis of exclusion and for many, it can take up to two years to receive a diagnosis of ALS. For a disease where every moment counts, this is precious time that people with ALS do not have to waste. The sooner you receive a diagnosis, and the sooner you can come to terms with it, the sooner you can begin to manage the disease and find the support you need.
I learned along the way that you need to advocate for yourself at every step. When someone says no, I say ‘how come’ and I keep pushing. You are your greatest advocate.
ALS takes so much from those impacted by the disease, and it progressively robs you of your voluntary muscle function. Today, it has taken all of the strength from my hands, arms and shoulders. My kids, and my best friends Paige and Alysia, and my PSW Elba help me with meals because I can no longer prepare food or cook. ALS makes day-to-day tasks nearly impossible, and I need help with almost everything.
While the disease will continue to progress, it cannot take away my love, my intelligence, my tenacity and most importantly, the memories I make with my children and loved ones every day.
There are gifts within the challenges I face. I’ve learned how to see the bright side of things. I’ve found it’s better to be grateful and focus on what I have versus what I don’t have. I take it day by day. I’ve developed a sort of mantra – “what’s coming will come and I’ll deal with it when it does.” I am much better now at living in the moment.
Today, I am in my fourth year of living with ALS, outliving both my diagnosis and the prognosis for many with the disease. But I know where my journey ends. The same place it has for everyone with ALS since the disease was first identified in 1869.
I’m sharing my story to bring more awareness to the disease because we need more funding for research so we can transform an ALS diagnosis from terminal to treatable. Awareness and funding will bring much-needed research, and with research there is hope for the nearly 3,000 Canadians and their families who are impacted by this devastating disease.
To learn more about ALS, check out additional resources on ALS Pathways.
Unfortunately, following the publication of this article, Taya Jones passed away on August 7, 2022 as a result of her ALS.