Karen Van Luven, 53, and her mom, 84, both get around their apartment using walkers. Karen moved in to her mom’s apartment nine years ago to be her caregiver. Her mom was experiencing mobility issues and could no longer walk without assistance. “Now that I am living with ALS, the roles are a bit reversed,” Karen says. “We both look after each other.”
Karen was diagnosed with ALS in February 2019. When Karen was having difficulty lifting her legs over the side of the bed last winter, she needed her mom’s help to pull her to a sitting position so she could get to her walker. “I had a bad reaction to a drug I was taking and it was all a bit overwhelming,” says Karen. “Things are better now. We’re learning to adjust.”
Despite the challenges, Karen refuses to let ALS stop her from living her life and dreaming about the future. Now that her daughter, Victoria, is married, her most cherished dream is becoming a grandmother. She also dreams of taking a river cruise down the Rhine. “Travelling with my walker would be limiting,” she says, “and I’m not sure how I’d get around without someone to support me, but it would be nice.”
Karen joined the travel industry right out of college and she never looked back. “Travel is in my blood,” she says. She would still like to be working full-time but living with ALS restricts her to a few hours a week. She hopes to grow her home-based travel company but she has to prioritize her health and that means taking as much time as she needs to rest when she feels tired.
Even for a positive person like Karen, living with a terminal disease is hard to face. No matter how much she tries to stay optimistic and focus on the day-to-day, in the back of her mind are always the nagging questions: “How fast is this going to progress? How much time am I really going to have?”
Some days, it is difficult to avoid the harsh realities of living with ALS. “This last visit at the ALS clinic sent me for a loop,” Karen admits. “I was introduced to the new team member for palliative care. That puts things in perspective.”
Karen recently wrote her MP to ask what her party was doing to support Canadians with ALS. She was disappointed to learn that her local representative knew little about the disease. It’s one of the reasons Karen wants to share her message during ALS Awareness month. She’s inviting everyone to call for government support to ensure access to tomorrow’s proven ALS treatments. She knows it will require sustained and dedicated funding for leading ALS research, but she is hopeful more can be done.
Karen is no stranger to loss. Her son, Eric, died five days after birth; she lost her father as a young adult. And now, she faces an uncertain future.
She finds strength in the presence of caring family and friends. “It means a lot to have friends drop by, even for a quick chat,” says Karen, “or getting help from my sister-in-law, Susan, who drops off prepared meals every week.” The last meal she prepared with her mother was Curry Cauliflower for her families annual Christmas Eve gathering, with the help of their neighbor David. Personal support workers also provide much needed relief for Karen and her mom several hours a week.
All of the help is greatly appreciated, but Karen also feels regret for what she can’t do any more, like cooking with her mom. “Our favourite was making lasagna, but now my hands are weak so I can’t lift pots and it’s too hard to stand over a stove,” she says.
The time for advocacy is now. With adequate government support, people with ALS will be granted what is most precious – more time to dream, more time to live, more time with loved ones.
It’s about time to let them know that they need to make people living with ALS a priority.
