Meet Connor Way. Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.” But there’s something different about Connor’s story, his “Papa” had ALS.
An ALS diagnosis is not only devastating to the person receiving it, but to their entire family, and kids are all too often the collateral damage. The disease forces many kids to pitch in as caregivers and often delay their educations. Kids who serve as caregivers often talk about feeling isolated and unsupported by their peer groups.
Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood.
Gary Trosper was a transportation executive before he was diagnosed with ALS in 2015. After two years, he was forced to retire due to his symptoms, but he knew he didn’t want to just sit around: he wanted to make a difference. Acting as an advocate and taking action for himself and others is very important to him.
In recent years Giving Tuesday has emerged as a preeminent day in late November for everyone around the world to commit to charitable giving as a way to give back to those in need during a season defined by giving. On May 5, in recognition of the crisis charitable causes face in the face of the global pandemic and economic shutdown, a new opportunity to come together in support of your community will be held: #GivingTuesdayNow.
May is ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.
Social distancing and stay-at-home orders in response to the COVID-19 pandemic are upending many facets of daily life. In recognition of Occupational Therapy Month, we checked in on ways this critical piece of multidisciplinary care can continue during quarantine and innovative ways telehealth can be adopted by occupational therapists.
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.