ALS advocate Greg Gowe dies after a fierce fight with the disease – North Shore News

North Vancouver's Greg Gowe built an organization tasked with ending ALS, all while battling against the devastating disease himself

Greg Gowe was adamant that he was going to compose his final tweet, even though it took all his remaining strength to do so.

The North Vancouver man had built a strong following on Twitter since his 2019 diagnosis with amyotrophic lateral sclerosis, the progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. On social media hed documented his struggles, his joys, his fight to stay alive, as well as his fight to find a cure.He knew the cure might not come in time for him, but he wanted to save others who found themselves in a similar fate.

Writing with his eyes hed long since lost the ability to type Greg authored his final message to his online followers. It took him more than an hour to write.

My fight with ALS has come to an end. Please dont be sad. Life is beautiful. Live hard. Love those around you and come together to #EndALS.

It was around noon Vancouver time, Sept. 10, 2022. Surrounded by his family, Greg hit send.

Greg Gowe was a vibrant member of the North Vancouver community long before ALS entered his life. A strong and talented athlete, he earned the nickname Tough As Nails Gowe while playing football at Handsworth Secondary.

He became a lawyer for Telus, working downtown where he met his future wife, Adrienne Molinski, who also happened to be a North Shore kid with many mutual connections. They got married and had two kids, first a son, Micah, and soon after a daughter, Maleah.

Greg was a staple at their activities, including volunteering as a baseball coach for Highlands Little League.

He was the best dad I knew, said Adrienne. Of course I'm biased, but any of my girlfriends would throw their husbands under the bus and agree with me. He was always the dad who was engaged and present, and he relished all their moments together. He was the dad who would play catch in the pool for hours while the rest of us were drinking mojitos on the pool deck.

The devastating diagnosis came in May 2019. That kicked off Gregs fight for his life, but also a bigger fight for a change in the way ALS is dealt with in British Columbia and beyond. Adrienne and Greg, still very much a robust man shortly after his initial diagnosis, were sent to the ALS Centre, a facility in the basement of the G.F. Strong Rehabilitation Centre in Vancouver. It was not a good experience, and not only because of the terrible news they were getting.

Psychologically when you're given that diagnosis and you have to press B and you go down to this dungeon with no walls, it's like the worst physical space you can imagine, said Adrienne about going to the facilitys basement. They're talking about wheelchairs and bed lifts and end of life. There's nothing more suffocating than that conversation.

What bothered them most, though, was the feeling that the fight was over before it started.

They were telling us to cross things off our bucket list, go to pasture and enjoy the days you have left, she said. It just wasn't right. It didn't sit well with us. They basically say, Sorry,' and they send you home. I mean, can you imagine walking into a cancer clinic and leaving without a treatment plan?

Greg decided he wasnt going to go down without a fight. He became the founder and driving force behind ALS Action Canada, a patient-led non-profit organization meant to fill in the gaps left by already established ALS organizations and deficiencies in the health-care system. He wasnt interested in securing more funding for wheelchairs or home equipment to keep himself comfortable. He wanted a cure.

Its important to me obviously on a personal level I have two kids. But also,its time to end this disease, Gowe told the North Shore News in an interview last year. Its time to get our government to fund ALS.

ALS Action Canada was the result of Greg's efforts.

Greg saw the problems, he saw the gaps, said Bre Hamilton, an old friend of Gregs whom he recruited to help in the fight. He founded this organization to run up the middle, and with an urgency that the ALS societies just don't have the bandwidth for.

Hamilton is now the executive director of ALS Action Canada, pushing forward the organizations main objectives:securing additional federal funding for ALS research with a goal of finding a cure; creating more and better clinical trials throughout Canada; and improvingthe drug approval process in Canada. They are also working to get B.C.s ALS Centre moved to a more welcoming and functional facility.

Greg worked tirelessly to get ALS Action Canada going in a way that would be sustainable even if he wasnt able to carry on.

It was one of the hardest things I've ever experienced, watching him decline and fight this battle, said Hamilton. Greg said his sort of final act was to get this good board of directors together [for ALS Action Canada], and then it would continue, and he was able to do that.

While Greg threw himself into the fight for a cure, he also did everything he could to build memorable moments with his family. In 2019, after his diagnosis, he kept coaching baseball as best he could.

It was very emotional coaching that final season, because he knew it would be his last, said Adrienne, adding that even this year as his body function dropped considerably, he still did his best to make it out to watch all of his sons games. It was definitely something that kept him going.

Micahs team played on Lou Gehrig Day this year. Micah got to pitch, and Greg was honoured by the teams and gifted the game ball after the final out.

That was a feel-good evening for sure, said Adrienne. And there were many other poignant moments along the way.

We had many powerful and emotional and heartwarming goodbyes as a family, said Adrienne. And Greg was able to use his eye gaze to share with us, you know, his words of wisdom for the kids and share messages of hope for the future with us.

In mid-August his condition took a turn for the worse, and he was admitted to hospice on Sept. 5.

The last few days were pretty unimaginable in terms of suffering, said Adrienne. He just went downhill really quickly. He couldn't get comfortable, he couldn't sleep. He had all these secretions he couldnt breathe without assistance.

They had talked about Medical Assistance in Dying, and the plan was enacted on Sept. 10. He likely only had a day or two left at that point, said Adrienne.

Midday Saturday, Greg sent his tweet. The reaction blew them all away.

He had thousands of people saying goodbye, said Adrienne. It's a beautiful thing, because here's a guy with ALS. He can't talk. He cant walk. He can't move his arms, uses a feeding tube, he can barely breathe. He's in terrible suffering, yet from his favourite recliner chair, using nothing but his eyes, to individually type out the letters of this post, he was able to connect with 200,000 people from around the world. That's truly a remarkable thing.

Adrienne wants people to know how much those messages of support meant to the family.

My son Micah was able to scroll through some of the comments the next day, and he just couldn't believe it. There were more than 10,000 comments about his dad. And I know, it was written all over his face, he couldn't have been more proud. It's such a gift, those comments, for my kids. I can't think of a bigger gift.

The family eventually had to close Twitter for the day because the messages kept coming, and they were trying to craft a special musical playlist for Greg. They spent the afternoon in the garden of the hospice, writing poems to each other, lighting floating candles, listening to music. They wrote messages on balloons shaped like doves and let them fly, watched as they slowly drifted away into a clear blue sky.

He opened his eyes and he was right there with us, said Adrienne. That was really cathartic for us, that experience. I know he felt very, very loved in the end. You know, he gave so much love. He was such a kind soul who gave so much love, and I know in the end he felt it.

To see him finally atpeace was extremely comforting for the family.

He can run again, you know?" said Adrienne."He can laugh and talk again. He can hug again, all of those things that were, for so long, stifled. It was nice to be able togive him such a beautiful sendoff, and see him so peaceful in the end.

Greg Gowe was 52 years old when he died.

Micah and Maleah did not hesitate for a moment when their mom asked them if they wanted to go to school at cole Braemar Elementary on the Monday after their fathers death. They were going.

The day before, the schools principal had sent a note to families, asking if they could wear red in a show of support for Greg and his family. The school had done a similar red shirt day event in June, and the response was impressive. It all sprang from a campaign the family had started earlier in the year, selling red T-Shirts with #EndALS written on them, with all proceeds going to ALS Action Canada.

As they approached the school two days after their fathers death, the kids wondered if anyone had gotten the message, would anyone be wearing red.

We walked down the steps to the field, and on the third step you could see the field, and it was just a sea of red, said Adrienne. I lost it I started crying and I had to walk back up to the house. But they just had the best day, and I couldn't think of a better way to show support as a community. We've been so lucky. With the support we've gotten from friends and family and community. We're so fortunate to live here.

Many people have taken up Gregs fight to end ALS.

He's given me a mission now that I can't drop. Hes given me a lifetime mission to end this disease, said Hamilton. Greg was an absolute fighter. He was one of the nicest people you could ever meet, funny, gentle, warm, bright just an amazing human. And he wouldn't have left his wife and two children if ALS had not made his life unbearable. And the fact that people with this disease are forced to make this choice and are given no other options but medical assistance in dying is deplorable.

They cant stop now though, she said, after all of the work Greg put in while fighting his own unwinnable fight.

He used his time brilliantly, she said.

Adrienne said she is happy her husband was so public with his efforts and struggles, as it will help encourage other to take up the fight.

Once you understand this disease and you watch it take down a body so savagely, you will want to get on board and help make change, she said. The family is encouraging anyone who wants to join the fight to go to alsactioncanada.org to make a donation, join a mailing list, or just learn more about ALS and the fight to end it.

That organization will be one of Gregs legacies, but what will last forever for Adrienne is her memories of Greg as a dad. Before he lost his movement and speech, Greg recorded videos for his children to watch as they grow up.

For them I know theyll be invaluable tools for healing, because they get to see their dad as a normal dad, she said. As he lost movement, he still took the time to write letters to his children using his eye-gazetechnology. It took a long time to write each one, but he wouldnt let his disease stop him from sharing those messages.

It was the fact that he was a father that kept Greg going as long as he did, said Adrienne.

Being a dad was his greatest accomplishment and joy, she said. He fought every day to live one more day as a dad.

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ALS advocate Greg Gowe dies after a fierce fight with the disease - North Shore News