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.
In order to help empower kids in the fight against ALS, The ALS Association is celebrating the second annual ALS Youth Action Day on Saturday, May 16. It’s a day where kids across the country can take the ALS Youth Challenge and use the power of their creativity to help raise awareness and critical funds that help researchers around the world look for treatments and a cure while enabling people with ALS to live longer, higher quality lives.
Continue reading Challenging Our Youth to Join the Fight Against ALS
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.
Continue reading Mother’s Day Q&A with Carianne Meystrik
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.
Gary’s symptoms started back in 2013 with difficulties with his hands. “I started having problems while typing, being able to reach up to the next key, on just my index finger on my right hand. And so, it never got really a whole lot worse, but I started also having a wasting of muscle between my index finger and my thumb, in the web in my thumb on my right hand,” he said. After two years of doctor visits and tests, he was finally diagnosed by the ALS clinic in Kansas City.
Continue reading “You’ve Got to Dwell on the Positive … What You Can Do.”: Gary Trosper on Living with ALS
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.
Your help is urgently needed. COVID-19 has compromised access to in-person care for people with ALS, causing added physical and emotional strain for both individuals fighting the disease, and those that care for them. Your help is needed to ensure that we can continue to support people living with ALS and their caregivers with additional respite care, access to telehealth and to meet the growing requests for durable medical equipment.
Continue reading Join our ALS Community for #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.
Because of their vulnerability to the disease, people living with ALS and their caregivers are practicing extreme social distancing, living in isolation, and unable to access traditional care and resources. Since the pandemic reached the United States, The ALS Association has been working around the clock to adapt essential care services to virtual and online platforms, and advocating tirelessly in Washington, D.C., to make sure those living with ALS are not left behind as important stimulus packages and other legislation are being considered.
Continue reading ALS Awareness Month: How our fight continues
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.
Occupational therapists are key members of the mobility team for a person living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.
Elizabeth Tatum, occupational therapist at the Outpatient Rehabilitation Department and the Phil Smith ALS Clinic at Holy Cross Hospital in Florida shared her thoughts and experiences she’s had with her patients and families and insights about how her job has changed because of COVID-19. Continue reading Occupational Therapy and ALS: How It Can Work in the Telehealth World
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.
“I was just kind of going about my business, taking care of my family,” he said. “And one day, you try to button your shirt or tie your tie, and you can’t quite get the strength to put the button through the hole, and you kind of realize at that point there’s a problem.” After months of doctor appointments and lots of tests, it was confirmed he had ALS.
Continue reading “You Find an Inner Strength that You Never Knew You Had.”: Troy Fields on Living With ALS