By June Duncan
Assistive technologies for the disabled have come a long way since the advent of automated wheelchairs and hearing aids. Smart technology has opened a new world of possibilities for people with disabilities and those who care for them. Smartphones, tablets, and an ever-growing list of apps are helping the disabled improve mobility, communication capabilities, speech, and vision. One of the greatest benefits is the ability to foster better communication between the disabled and their caregivers. Today, technology enables disabled persons to care for themselves more effectively, which makes things easier on caregivers, who often suffer from fatigue and burnout. Technology also helps give disabled persons more independence and a greater sense of confidence and control over their own environment.
Continue reading Technologies That Make Life Easier for Caregivers
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.
Continue reading What Is FTD and How Is It Connected to 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.
Continue reading Thank You for Sharing Your Journey with Me
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.
Continue reading 5 Myths 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?
Continue reading Caregiver Confidential: “Laughter Is the Best Medicine”
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.
Continue reading Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon
As one faces a terminal illness, such as ALS, it can be rewarding and fulfilling to review one’s life journey and reminisce about favorite people, experiences, and events, for remembering and reflecting on your life, in order to help you celebrate your successes, cherish your loved ones, and honor your journey. It is also important to reconcile or accommodate difficult or painful memories or events, providing an opportunity to forgive yourself and others if appropriate. Especially during this time of year when we are celebrating holidays and are with family and friends, projects such as the ones below can make very meaningful gifts, not only to those you love, but also as a gift to yourself.
Continue reading Remembering and Reflecting: Creating a Keepsake for your Family