“While I still can, I will inspire my community to learn about ALS”: Jane’s story

There’s hardly a spot left on Jane’s left arm these days. That’s because so many of her family, friends, and neighbours are getting a tattoo with Jane — they choose one that’s meaningful to them and Jane gets the same one on her own arm. This shared bond will be an everlasting part of her legacy when she’s gone. It’s a powerful way to raise awareness about her disease.

Jane and her husband David learned she had ALS in 2020, after a slur in her speech and a series of tests revealed she had bulbar onset ALS. “Bottom line, everything changes,” Jane says. “Many thoughts go out the window in a split second. Priorities shift drastically, and your energy goes into things that you never would have thought of before, simple things. Energy is put into daily living and things that I used to take for granted have now come to the forefront, like walking, eating, and sleeping.”

David is Jane’s caregiver and is by her side 90 per cent of the time. He helps her do her hair and put in her contact lenses, but Jane still insists on maintaining much of her independence. She loves to cook, and she continues to do a lot of the invoicing for their small business. Last year, she crossed an item off her bucket list when she landed a tandem skydive on a local beach, surrounded by her community, to raise awareness and support of ALS and ALS Canada. You too can show your support by making a gift today.

At this point in her progression, Jane and David are more and more concerned about falls. “Jane is losing strength in her left leg due to drop foot, and her left arm and hand have become weak to the point that keeping balance has become challenging,” David says. “And while we are starting to use equipment like braces and walking devices, it has now become more of a loss every day. This is just another chapter in the relentless progression of ALS — a new sense of loss every passing day.”

Holidays are built on traditions and memories, and with ALS, simple traditions become more and more challenging. “We often take our daily lives for granted, and life altering conditions make the once joyous holidays very difficult. Our family and close friends visiting will create ‘different’ memories and reflecting on the past can become a very sad time for the present,” Jane says.

“For people living with ALS, we cannot help but think of past holidays when life was normal. We find ways to share moments and reminisce about the good times, funny times, and great stories that do bring a smile. But milestones and holidays become a gateway for thinking about the past, and the future, which can be frightening at times.”

Jane and David’s two daughters watch in dismay as their mother’s condition deteriorates month after month. They wonder if one day they will get ALS too. As a family, they hope advancements in research will lead to new treatments that can reverse the course of the disease and that people living with ALS will have an improved quality of life, two things that ALS Canada advocates for and supports. “While I still can,” says Jane, “I will live my life to the fullest and inspire my community to learn about ALS. I will bring my passion for engaging people into my world…so that one day it will all be worth it.”