When I was growing up my circle of friends included people from around the world whom I've met through my family’s involvement in the sports of gymnastics and trampoline. Now I’ve added another circle; the ALS community. A diagnosis I share with an estimated 450,000 others worldwide and - - because currently there is no cure, we are all searching for answers.
Hardly a week goes by that through my ALSandWellness Blog someone with ALS contacts me with questions. We share resources, advice and offer each other encouragement. Although with ALS no two journeys are the same we do share a common experience. That immediately following our diagnosis we each felt lost and searched for quality information to help us successfully navigate living the disease.
Now, thanks to the ALSFinding a Cure® Foundation, we have our wish. Their new, eight-part video series is almost like attending that fantasy class, perhaps an “Orientation to ALS.”
These short films include interviews with ALS patients, their caregivers and family along with the ALS experts from Massachusetts General Hospital.
While individual videos address the typical ALS-related topics of relationships, nutrition, mobility, hygiene, breathing and communication, I especially appreciated the inclusion of a new topic: Leaning In. This video presents the concept of being proactive about the disease; to learn, to plan, to stay true to one’s self and to embrace each stage with a positive attitude.
We all have different learning styles; brochures and pamphlets don’t work for everyone. So being able to watch and listen as others share their experiences and advice is a plus. I know I picked up a few new ideas from these videos!
Much has changed in the six years since I was diagnosed:
- ALS used to be considered a rare disease. Now the lifetime risk of acquiring ALS is one in 400.
- Exercise wasn’t recommended for those with ALS. Now it is seen as beneficial.
- ALS patients were expected to live only 2-5 years beyond diagnosis. Now new technologies are improving patient’s quality of life and longevity by ten, twenty years or more.
- Research dollars for finding a cure were scarce. The 2014 “Ice Bucket Challenge” brought funding back to research centers and we are getting closer.
In fact, one recent study identified a psychological factor that helped improve quality of life for ALS patients - - that of feeling in control. Since having adequate knowledge contributes to feeling in control I believe this informative video series will be of benefit to all who view it.
ALS Association (USA)
MND Association (England, Wales & Northern Ireland)
ALS and Wellness Blogger
"Leaning in means learning what your truth is with ALS, and then being able to accommodate for it."
Jennifer Scalia, RN
Massachusetts General Hospital
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