Imagine this…
You feel a slight pinch in your arm one day. You don’t think much about it. Months pass and every now and then this pinch comes back. It steadily gets worse and worse, more noticeable as time goes on. It becomes bad enough that your doctor sends you to several neurologists, all seeking the root cause of this worsening pinch.
You receive a diagnosis. It’s good news! You have a pinched ulnar nerve (a major nerve that runs through the arm). Surgery to alleviate the pinch should fix it and rid you of the discomfort for good. Your surgery is complete, but the pinch remains.
Turns out it was not a pinched ulnar nerve. More neurologists, more tests. You undergo tests to see if you have Kennedy’s disease, but results are negative. . They test for multifocal motor neuropathy. Not that either.
A new diagnosis! Myasthenia gravis (MG), a neurological disease that causes muscle weakness. While it can affect your quality of life, therapy can help and except for rare cases, it does not affect your life expectancy. You join blogs about living with MG, you start researching, talking to others about it. You accept this diagnosis for the next two months. .
Then, news comes that MG is just the latest condition to be ruled out. Now, it’s believed that you have ALS, a neurological disease with no known cure and a drastic effect on life expectancy.
You get a second opinion. And a third. It’s confirmed by all three that you have ALS.
After a three-year search for a diagnosis, another round of acceptance begins. It’s October 4, 2018.
This has been the path to ALS diagnosis for Tavares Speer. Sadly, it’s the reality for many ALS patients to have lengthy, challenging and confusing paths to diagnosis.
At only 43 years old, Tavares had just moved to the San Francisco Bay Area and married his husband, Eric. Life was otherwise thriving, but now he received a diagnosis that would forever change the trajectory of his life.
Tavares is a rare ALS patient, known as a slow progressor, meaning the onset of his symptoms is occurring at a slower rate than the average pALS (person with ALS). An “average” progressor has a typical life expectancy of around 3-5 years after diagnosis. However, there are an estimated 10% of cases where the muscle breakdown occurs slow enough that patients can live more than 10 years with the disease.
After taking a moment to begin accepting his new diagnosis, Tavares decided to take to Instagram and share his story and spread awareness about ALS. One look at his Instagram will showcase that a life with an ALS diagnosis involves moments like ziplining, enjoying funny memes and strolling on the beach, husband and dogs in tow.
Today, Tavares is an ALS advocate, continuously raising funds to find a cure and offering an outpouring of support for others whose lives have been affected by the disease. His Instagram is a library of encouragement and inspirational content for anyone living with or affected by ALS. To Tavares Speer, “ALS doesn’t define me, I’m disabled and proud”.
Follow Tavares and his journey on his Instagram @the.tavares.
