ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.
So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family. These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.
Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years. Claire recently agreed to share their story and we’re delighted to post it here in her own words.
Continue reading Don and Claire Bratcher: Imagining a World without ALS
Everyone responds differently when life throws him or her a curve ball, and an ALS diagnosis might be the fastest curve ball life has to offer. Some respond by “hitting that ball back” and go on with life fairly quickly, while others may need more time to adjust to the news and come up with a plan. There is no right or wrong way to feel when faced with this diagnosis.
Most of us have heard about the stages of acceptance, grief and loss. These stages describe different reactions one might have, including denial, anger, bargaining, depression, and ending with acceptance. Acceptance does not mean giving up on hopes or dreams. It should be the first step in making the most of life with ALS. There is much to be done to help someone live a fuller and enjoyable life.
Continue reading Coping with the “New Normal” after an ALS Diagnosis
We didn’t realize we were making memories, we just knew we were having fun.
A few weeks ago, I was sorting through boxes of family photos in the hope of organizing and creating some photo albums. During my search, I came across photos from our trips to Mexico and Hawaii in 2006 through 2008. Although my husband Brian had been diagnosed with ALS when the photos were taken, I had fond memories of our vacations. I recalled how much Brian, our daughter Leah, and I enjoyed ourselves despite his illness. We had never been to Playa del Carmen, Puerto Vallarta, and the Hawaiian Islands, so each trip was magical and a new adventure. Although somewhat challenging to travel with Brian as his disease progressed, in retrospect I am so thankful that we created happy memories during what otherwise was a very sad period.
Continue reading Caregiver Confidential: Memories
The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S. The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research. The purpose of the registry is to learn more about who gets ALS and what causes ALS. This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.
Continue reading The National ALS Registry
By Julia Henderson-Kalb, OTD OTR/L and Elissa Held Bradford, PT, PhD, NCS
What do you want to be able to do in a day? What activities are important to you? Everyone craves activity. It is part of our human experience (1). However, oftentimes when people are diagnosed with a disease like ALS, their world tends to shrink. They might isolate themselves, stay at home the majority of the time, and stop doing the things they love to do in exchange for activities that aren’t very meaningful to them, like watching TV for hours on end. As part of the therapy team at Saint Louis University’s ALS Certified Center of Excellence, one of our priorities is to help people diagnosed with ALS understand how to keep their world LARGE so that they can enjoy meaningful activity for as long as possible.
Continue reading Living with ALS: Keep Your World Large
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
While reading online the other day, I came across a popular saying that I hadn’t seen in a while: “It takes a village.” Although familiar with its general meaning, which refers to the communal raising of children, in a broader context, can’t the concept of a “village” also apply to caregiving for a loved one with a terminal illness? Doesn’t it take many individuals—caregivers, medical and social services professionals, friends, and family members, all working together—to provide the best possible care for an ALS patient?
Continue reading Caregiver Confidential: It Takes a Village