Caregiver Confidential: Memories

We didn’t realize we were making memories, we just knew we were having fun.
—Unknown

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.

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The National ALS Registry

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.

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Living with ALS: Keep Your World Large

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.

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Technologies That Make Life Easier for Caregivers

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.

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Caregiver Confidential: It Takes a Village

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?

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More Resources for People with ALS

The toll that ALS takes on a family is devastating – and can strain a family emotionally, physically and financially.   The ALS Association helps ease the physical, emotional and financial burdens that often accompany an ALS diagnosis by providing free programs and services to help people with ALS and their loved ones manage this journey. We also have an extensive referral network and can help identify additional support within the community.

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Understanding Insurance and Benefits When You Have ALS

Navigating the maze of health insurance is challenging for anyone and can be particularly overwhelming for people with ALS.  We’ve compiled some tips and information that may help save you time and energy spent figuring out the complicated web of insurance benefits.

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