ALS is very difficult to diagnose — often taking up to a year from when the first symptoms appear until a definitive diagnosis is reached. Why is diagnosing a person with ALS such a challenging and long process? Here are a few reasons that can contribute to the delay:
But when you’re gone, who remembers your name?
Who keeps your flame?
—Hamilton, “Who Lives, Who Dies, Who Tells Your Story?”
I was fortunate to see Hamilton in Chicago in December. (I highly recommend going when it comes to St. Louis this spring.) One of the most moving musical numbers and a personal favorite of mine was the finale, “Who Lives, Who Dies, Who Tells Your Story?” In fact, I become teary-eyed every time I listen to the lyrics, because they are so on-point. I thought I finished telling my family’s journey with ALS, but after watching Hamilton, I realized that I had one final point to make.
FTD (frontotemporal degeneration or frontotemporal dementia) refers to a group of disorders that causes progressive damage to the temporal and frontal lobes of the brain associated with personality, behavior and language. Loss of function in this area of the brain can lead to impulsive behavior and speech difficulties. Usually FTD does not affect the parts of the nervous system that control muscle movement, but about 10-15% of people with FTD also experience motor neuron degeneration called FTD with motor neuron disease (FTD/MND) or FTD with ALS. Over the past 15 years, doctors and scientists’ knowledge of the connection of these diseases has rapidly grown through genetic discovery, brain imaging studies and biomarker studies. Specifically, researchers were able to confirm the connection between FTD and ALS when the TAR DNA-binding protein 43 (TDP-43) was identified as the central protein in both ALS and the most common type of FTD. Additionally, up to 40% of FTD cases have been found to carry a C9orf72 gene mutation, which is most common in genetic causes of ALS.
By Heather Burns, MSW, LMSW, ALS Association Care Services Coordinator
Today, I received two phone calls. I had that familiar gut wrenching feeling when the names of the patient’s loved one’s flashed across the giant iPhone screen. I hesitated when answering, as if maybe that could change what the caller was about to say…
“My loved one has passed away.” I knew it was coming before today. I knew it was coming before they picked up the phone to call me. I knew it the moment I walked in to meet the family for the initial home visit, but with ALS, I never truly know when I may actually get that call. Everyone’s progression, while always devastating, is always different.
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.
A few weeks ago, I asked my friend Jessica if she had any ideas for future posts. Jessica replied, “What about the role of laughter in illness?” Initially, I rejected that suggestion. After all, what part of ALS was funny? I reflected back to my husband Brian’s courageous struggle with the disease, and I didn’t recall us sharing any light or humorous moments. However, the more I ruminated on the topic, the more fascinated I became. I was familiar with the old adage, “laughter is the best medicine,” but could this expression apply to patients with terminal illness?
Last week, our national organization featured our friend, Carmen Berkley, on their blog. Carmen shared her morning attending the ALS Certified Center of Excellence at Saint Louis University — the only one in our region. We’d like to share it here with you.
Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.
Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.
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