Last year, the MLB named June 2 Lou Gehrig Day in honour of the legendary New York Yankees first baseman who died from the disease. Advocate TayaJones917 talked to us about life with ALS and why the time for treatment is now — via healthing_ca ALSCa...
Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is terrifying, but an early diagnosis can improve quality of life.
Jones took a break from a busy week to talk about her healthcare journey, her love of the Blue Jays and her hope for a better future for ALS patients everywhere.I was diagnosed in 2018. I started noticing weakness in my right hand in July of that year and I was diagnosed in September. I pushed the system pretty hard so that my diagnosis was quick but the average time for someone with ALS in Canada is 21 months, which is ridiculous.
My neurologist will tell you I’m a force to be reckoned with. I do it as politely and respectfully as I can — with a big smile — but I don’t really take no for an answer. Services don’t exist for people with ALS, so there have been a lot of big fights. The health care system is unnavigable anyway but because my entire career was spent advocating for patients, I have it in me to do these things.
, so I’m their Canadian representative for Thursday. We’ve sold almost 200 tickets for our section for the game and we’re going to take the Rogers Centre by storm.One of the hospices that works with me has made sashes for us to stand out and I had T-shirts made. We’ve even got the ALS clinic — my neurologist and his staff are coming — and we are really looking forward to having a fun day. These are mostly what I would call Team Taya, these are the people who help me get through the day.
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