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
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.
Continue reading Practicing Relaxation with the Body Scan
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.
Continue reading Eight Questions with Andrew Godbey, M.D.
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
Today’s post is authored by Joan Sucher, who was diagnosed with ALS in early 2013. Joan and her husband, Tom – married for 46 years — have three children, Craig, Kate and Kristen, and seven grandchildren ranging in age from 14 1/2 months to 16 years. Joan insists that despite ALS, her life is “full, rich and blessed.”
Continue reading Living with ALS: Finding the meaning and the impact
By Stan Goldberg
This week’s blog post was originally published on thecaregiverspace.org.
Continue reading Understanding chronic & terminal illness: A guide for healthy people
An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life. ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS. More than $950 million in federal funding has been generated for ALS-specific research since 1998.
Continue reading ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference