B.C. mom shares what it is like living with ALS

A B. C. mom is sharing her story in hopes of helping others, as she continues to navigate the challenging world of ALS.

Leanne Yacyshyn was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, in 2016. The mother of two was once an avid runner and teacher, but now uses a tablet to help her communicate. “The camera reads the sensor dot on my glasses, and when I point to it, button clicks it.

It can be very slow and it gets tiring, but I am so grateful for the ability to keep connected,” she says. Leanne Yacyshyn uses a tablet to communicate. (CityNews/Kier Junos) “My morning routine starts around eight, with supplements and range of motion exercises.

I then get up with the use of a ceiling lift and go to the washroom on a commode. I am washed by a caregiver. I have no use of my hands, so I am dependent on others for mostly everything.

They dress me and brush my teeth and hair. ” She says she tries to stay positive and enjoy the moments with her family and friends. “It is a continual challenge to keep one step ahead of the disease and anticipating what I will need next.

I have been living with ALS for over five years, but I still have days that the grief of the whole situation is overwhelming. ” “The average life expectancy with this disease is two to five years, and the reality of that doesn’t get easier,” she adds. Related Articles: ALS patients, families urge faster approval for treatments FDA panel narrowly sides against experimental ALS drug Expanded ALS drug coverage to support British Columbians Her least favourite part of the day is when she has to use the Cough Assist machine.

“It simulates coughing because I can no longer cough and it brings up secretions from the lungs and throat. And then they are suctioned up. I do this four times a day.

” Yacyshyn has a blog called “Leanne is Living with ALS” where she details her life, as well as shares on social media through her Twitter account. Her story resonating with people who are also living with ALS, as well as those who are simply learning more about the disease. “I spend quite a bit of time answering questions from people who are recently diagnosed.

”   Love my family. A few photos from the grad BBQ. pic.

twitter. com/7fT1ZeeY9P — Leanne Yacyshyn (@leanne_yacyshyn) June 27, 2022 One of the messages Yacyshyn shares is her hope that one day the disease will no longer be terminal. Wendy Toyer with the ALS Society of BC says British Columbia excels at getting patients equipment and care compared to the rest of the country.

“I think where we’re falling down in here is the lack of access to clinical trials in B. C. And that is why in 2021, we launched a program called Project Hope,” Toyer says.

That project has so far gathered $2. 3 million in donations from British Columbians and $3 million from the provincial government and has established a permanent ALS professorship at UBC. Toyer says there are only two licensed treatments in Canada – but those two treatments still don’t significantly extend a patient’s life.

“If you don’t have access to clinical trials, where’s the hope?” Toyer says. “What we’re looking for is a way that we can fund research is going to have a significant impact. ” Until that happens, Yacyshyn continues to advocate for ALS treatments alongside ALS Action Canada, a patient-led nonprofit organization that fights for equitable access to therapies for Canadians.

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