In these times we live in — the information age — we have access to more facts and data than ever before, but not everything we read or watch is correct. The Ice Bucket Challenge brought unprecedented awareness to the general public about ALS, but with more exposure also came more misinformation. Below we break down 5 of the most common misunderstood “facts” about ALS.
Powerful blog post from our friend Pat Quinn, courtesy of WebMD.
By Pat Quinn
When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.
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.
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.
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.
Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared […]