During National Family Caregivers Month, we recognize and thank the everyday heroes who devote their time and energy to taking care of a loved one. Millions of people around the country take on the role of caregiver for friends and family members; providing care day and night, on the weekends and even on demand. Many people, especially those that need long-term care, rely on family and friends as their only source of help. While many take this on out of love and receive satisfaction from caregiving, it can take a toll over time and even cause detrimental effects to the caregiver’s health and well-being. It is important for caregivers to make sure they are taking care of themselves, even as they are taking care of others. Below we have compiled a list of resources to help those in our community navigate the world of caregiving:
Continue reading Resources for Caregivers
Morrie Schwartz, a professor emeritus of sociology at Brandeis University, was diagnosed with ALS in the summer of 1994 and passed away in November 1995. He devoted the last year of his life to using his illness to teach others about living and dying. He was an inspiration to friends, students and colleagues—young and old—on dying with dignity. He wrote 75 aphorisms that he called “Reflections on Maintaining One’s Composure While Living With a Fatal Illness”. These aphorisms are the basis of his book, Letting Go (later republished as Morrie: In His Own Words).
Continue reading Wisdom from Morrie
By Elissa Held Bradford, PT, PhD, NCS & Julia Henderson-Kalb, MS OTR/L
Staying active and staying safe are important goals to individuals and families living with an ALS diagnosis. As a person living with ALS you may wish to maintain your independence and participate in activities meaningful to you. This may be taking a trip, going to the park with your grand-kids or being able to go to the bathroom on your own. As a family member, you want to support your loved one’s independence but also his/her safety. As physical and occupational therapists, this goal is our priority too. A common challenge to achieving this goal is falls and concern about falling. This is often complicated by the fact that we may have different perspectives on what constitutes fall risk and independence. However, we can find a happy medium by communicating, planning, and making decisions together. In this short blog post we will discuss falls, fall risk, strategies to prevent falls, fall recovery, risk tolerance and even sense of self to help you stay active and stay safe.
Continue reading Living with ALS: Staying active and staying safe
Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.
As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.
Continue reading Bridge the Silence
As we officially enter into September, we can’t help but look back at this month and compare it to August 2014. This August was a busy month filled with events, not unlike past Augusts. While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation. We continue to hear stories of what this means to people even three years later. Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since.
Continue reading Looking Back at August
Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter. Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?” The rest of August became a blur of ice and water – it was incredible.
Continue reading The ALS Ice Bucket Challenge: How It Helped and Why It Matters