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).
Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?
By Idelle Winer
I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.
Continue reading Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?
Living with ALS: Staying active and staying safe
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
Bridge the Silence
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.
Caregiver Confidential: Diagnosis and Denial
Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer. Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.
Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.
Continue reading Caregiver Confidential: Diagnosis and Denial
Looking Back at August
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.
Growing Up With a Parent Who Has ALS: What I Learned
By Kelsey Lester
Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.
Continue reading Growing Up With a Parent Who Has ALS: What I Learned
Practicing Relaxation with the Body Scan
Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois. She has been practicing massage and a variety of different therapies since 1989. We are excited to have her contribute to ALS Connect as a guest blogger.
The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.
Eight Questions with Andrew Godbey, M.D.
Dr. Andrew Godbey is a Board Certified Neurologist and the Medical Director of the ALS clinic at Saint Francis Medical Center in Cape Girardeau, MO.
The ALS Ice Bucket Challenge: How It Helped and Why It Matters
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