Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the country that offer pALS independent living alongside 24-hour care.
His latest project is producing a series of educational short videos to help caregiving and medical staff in nursing homes and other health institutions better understand the unique care needs of pALS. But before he can create these videos, he’s asking other PatientsLikeMe pALS to help him get started by sharing care experiences in an upcoming survey.
We caught up with Steve recently to chat more about this project. Here’s what he had to say:
You’ve teamed up with us to conduct this survey as part of a larger project you’re working on to create a series of short, educational videos for caregivers of pALS in institutional settings. Can you tell us what inspired you to do this?
I want to make these videos because it is my nightmare to go to the hospital or live in a traditional nursing home and be treated like a product to be taken care of and kept alive instead of living a life. I have a handful of friends, including Patrick O’Brien and Ron Miller, who have survived institutional living. Their stories were horrible but weren’t about mean or cruel caregivers as much as about ignorant caregivers. I think everyone should be able to live in an ALS Residence but, recognizing that that isn’t going to happen for most pALS in the short term, I want to provide a quick easy way to orient and educate well-meaning staff so that taking care of a pALS, who may not be able to speak or breathe, is less scary. If there is fear of the unknown, let’s remove the unknown.
Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS?
This is very true and these videos will not attempt to be very specific in detailing care needs. But I believe there are some universal truths that will apply to most pALS like non-verbal communication, range of motion, and emotional lability. There should also be a basic understanding of what ALS is and what ALS is not. The Ice Bucket Challenge made everyone aware that ALS is a wretched disease but very little understanding of what ALS is. Institutional caregivers need to know that pALS minds remain sharp and our senses undulled. Like a PatientsLikeMe button of mine says, “ALS has stolen my voice, NOT my mind.”
Similarly, why do you think there’s more research needed here and a need for educational videos?
I think a lot of caregivers are intimidated by the unknown and there is a lot unknown about ALS in the long term care industry. If successful, this video series will begin to fill that gap.
What can you tell us about the series of videos? What is your vision for these?
I hope the videos become a valuable resource for pALS living in or considering moving to a nursing home or chronic hospital. Even someone going to the hospital for a multi-day stay should benefit. I want them to be what pALS would tell the staff if they could speak themselves. The intent is to create a series of six, 5-6 minute videos that would each cover a different aspect of providing excellent care for pALS. There would be a video for understanding ALS, non-verbal communication, range of motion, emotional lability, patience and compassion, and maybe even one for being a good patient. If successful and well received, this could be the beginning of an ongoing series.
What would you like to take away from this survey? What kind of information to you expect to get? And why is this important for your larger project?
I hope to get a big response so we know that the problem is real. I am counting on friends and family of institutionalized pALS to speak in their behalf if their loved one doesn’t have regular access to the internet. Right now, the topics are based on my fears and a small core of brainstormers. I would like to greatly expand that group to determine what the real challenges are that pALS face. I would even like to solicit video questions that may be in the final video.
After the survey, what are the next steps for this project? And will you be asking the community for any further insight?
I would like to create a focus group out of the willing poll takers. This should be a community project. We will work with a professional filmmaker to storyboard each of the videos along with identifying a recognized expert to address the issue at hand. The filming and editing will take place and there will be a grand release, hopefully with much fanfare and putting PLM in the spotlight for making it happen.
Is there anything you’d like to say to your pALS on PatientsLikeMe?
Kick ALS’ ass every day. Live long and prosper. Life is good.
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