ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease or motor neuron disease, is a progressive neurodegenerative disease. People diagnosed with ALS will lose the ability to walk, talk, eat, swallow and eventually, they will no longer be able to breathe on their own. According to the ALS Society of Canada, approximately 80 per cent of people with ALS die within two to five years of being diagnosed. Approximately 2,500-3,000 Canadians have the disease.
This all sounds depressing, doesn’t it? Enter Brooke Eby who received her ALS diagnosis in March 2022 at 33-years of age. I stumbled across her Instagram profile more than six months ago, and was hooked on her dating stories, get ready with me style videos and her layman’s explanation of what life is like living with the disease. The now 35-year old is bubbly, beautiful and hilarious, but her ALS journey has been anything but. It took four years from her first symptoms to her diagnosis. ALS is difficult to diagnose and many other conditions have to be ruled out.
After her terminal diagnosis, she went home and crawled into bed crying with a party-size bag of M&M’s, but soon her real advocacy began after she found her sense of humour as a bridesmaid at a wedding. Her best friend, limbo-ing with the bride under her walker, and of course, walker rides, brought her out of a funk. Her light-hearted way of approaching her life gained her almost 158,000 followers on TikTok and 114,000 followers on Instagram.
She continues to work at Salesforce while she advocates for her fellow ALS patients. May is ALS Awareness Month, and she has posted videos each and every day discussing what living with a progressive disease is like. She is smart, secure in who she is, and is the subject of our latest #WomenInspiringWomen.
So little is known about ALS and every case is different. What do you wish you had known before you were diagnosed?
I thought ALS was a) largely genetic, b) mostly in men, and c) extremely rare. Turns out I was wrong on all three. I started having symptoms as a 29-year old woman with no family history. It’s the worst diagnosis- they tell you it’s fatal. There are 2 medications you can take that may extend your life for a matter of months, but average prognosis is 2-5 years, so there’s not a lot of hope by default.
Outside of the “Ice Bucket Challenge”, ALS doesn’t attract viral activity. Why do you think people are so interested in you and your ALS journey?
I hope they are! I found that telling people about my diagnosis was really depressing and no one knew how to react, so I decided to start posting funny videos about it to make everyone, including myself, more comfortable in talking about and accepting my diagnosis. I’m not sure anyone would picture a young (ish) woman when they hear about ALS, so I want to provide a face to garner more attention to ALS.
What does it feel like to be considered an influencer?
I don’t think about that term that much. My life just isn’t what i thought it would be and I like sharing it with people. If I can have any influence in driving money/eyes to ALS, then great.
You have become an advocate for the ALS community from clinical trials to general awareness. What advice do you have for people to become more vocal around any issue, but don’t know where to start?
You asked Tim Green on a recent podcast how he stays sane. How do you do it?
Denial and Zoloft. Friends and family distract me often. I still work full time so that provides a nice, normal distraction too. I think any time I start getting into the “why me” mode, I go back to: this is my purpose now. I was meant to have this.
What have been the most ridiculous things that people have said to you that made great content for your videos?
I was diagnosed at 33 and I was single, so going on the dating apps knowing I had a terminal disease and (at the time) was using a cane, I got a ton of hilarious messages. Lots of “you’re falling for me” jokes and cane references. I think my favorite was a guy calling me Abraham Limpin.
You have been open about dating since your diagnosis. What advice do you have for people who are dating or want to date while experiencing something so life changing?
I wish there was a handbook! I had and still have no idea what I’m doing, but I’m 35 and confident in myself so if the right match comes along, great, if not, that’s fine too. I think my advice is to make your life as full as possible – fill it with friends, family, fun – and then you’ll always be surrounded by love.
You have a life beyond ALS. What has been bringing you joy?
This world of advocacy and social media is totally new to me, so I’m learning constantly and keeping very busy. My family and friends are always the highlights of my day/month/year.
