4 posts tagged “ALS Residence Initiative”

Paul Wicks weighs in on a new, patient-conceived project

Posted August 22nd, 2016 by

Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one.

Since his diagnosis in 2006, Steve has made it his mission 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., to multiple residences across the country that offer pALS independent living alongside 24-hour care.

Steve sat down with us last week to share about his latest project: producing a series of educational short videos to help caregiving and medical staff better understand the unique care needs of pALS.

But what does this patient-conceived project mean for research? We caught up with our VP of Innovation, Paul Wicks, PhD., to chat more about this project from a research standpoint. Here’s what he had to say:

Working with members for research is in PatientsLikeMe’s DNA, but this collaboration with longtime ALS member Steve Saling (SmoothS) takes it to another level — the project was conceived and driven by Steve. What do you think about this unique partnership? What makes it different than other projects, and what are your expectations? 

There is certainly a lot of buzz out there about being “patient centered” these days – there is a risk that it’s tokenism rather than truly empowering – which means giving up some degree of control to others. In our case we’ve offered Steve access to powerful survey tools and our highly engaged population so he can develop his research about the experiences of other patients like him to help shape the services he designs. That’s really the core of what we do here, bringing the patient voice to decision makers in healthcare, and the reason this is so powerful is that as an architect, as an advocate, as a leader in the space, we’re helping Steve to make better decisions about the unmet needs of his community. My hope is that by giving people an anonymous survey they can complete at their leisure from home or with the use of assistive technology that we might hear from people with ALS who don’t normally have a voice.

In its early stages, the survey was more geared towards pALS and cALS receiving and giving institutional care. Can you talk about the evolution of the project with Steve to include those not in a care setting like that, too? 

We’ve been following Steve’s pioneering work in developing his ALS Residence Initiative for a long time, in fact I’ve had the pleasure of meeting him for a beer a couple of times and I even mentioned it in a TEDx talk as far back as 2010. As a researcher with 13 years experience in ALS I know that while residential care is the right fit for some people with ALS, others don’t have that option or couldn’t imagine being anywhere other than their homes. We also recognized that people have a mix of caregivers, both informal (e.g. spouses, children) and professional (e.g. home help, nurses) and that many patients have a blend of care from different sources throughout their journey. We also wanted to broaden the survey as much as possible so that we could hear from as many people as possible.

One of the goals is to learn from members to get more background context for a series of educational caregiver videos that Steve is producing and PatientsLikeMe is also sponsoring. What else do we hope to learn? 

When you or a loved one is diagnosed with ALS, you get a lot of educational material about the disease. It’s full of statistics and medical jargon about neurons and genetics, but you don’t get much support about how to live with it, how to cope. That could be something as simple as little tips for coping with weakness to something as complex as how to choose the right wheelchair or how to safely transfer with a hoist. Neurologists and experts and professionals can advise and consult, but in most cases they haven’t been there day after day to assist with the basics of daily life that become so hard with ALS, so I’m hoping that with our help Steve can build a permanent resource that will be a great “how to” guide for practical (and sometimes even awkward or embarrassing) topics that people encounter every day.

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? 

Fear of the unknown is a big one – although we’re seeing increasing awareness about ALS thanks to the Ice Bucket Challenge and movies likeThe Theory of Everything, most people don’t know what ALS is going to involve for them when their loved one is first diagnosed. Many people will want to tiptoe gently in the shallow end of knowing about it rather than diving in at the deep end – it can be hard enough coping with the issues in front of you without having to worry about problems that may or may not arise further down the line. Unlike something like cancer we also lack treatments in ALS, so it can feel like you’re just waiting for the next symptom rather than actively fighting it with drugs or surgery. Perhaps this is just bias, but ALS also tends to affect some of the strongest and most courageous people I’ve known and it can be hard for them to accept that they need help from others – they’ve often been successful professionals or highly active people and so admitting that they need help to walk or to get dressed doesn’t always come naturally to them.

Is anyone else doing research projects like this one that you know of?  

Over the years I’ve seen a little bit of relatively small-scale qualitative research like this published in the main ALS Journal usually from nurses, physical therapists, or occupational therapists, but I’m pretty confident this is the first conducted by a patient!

 

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Steve Saling’s patient-conceived ALS project

Posted August 15th, 2016 by

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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Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling

Posted December 19th, 2012 by

Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized ALS residence.

The Steve Saling ALS Residence Is Located Within the Leonard Florence Center for Living in Chelsea, MA

When Steve Saling was diagnosed with ALS, a rapidly progressive neurodegenerative disease, in 2006, he immediately began to “secure a way to provide for care” as his condition advanced. His expertise as an architect, his keen interest in technology and his diagnosis all proved vital as he worked with Barry Berman, CEO of the Chelsea Jewish Foundation, to create the first-ever, fully automated ALS residence. This state-of-the-art residence soon became a reality and opened its doors in August 2010. Despite this tremendous accomplishment, Steve isn’t done yet. He has also created the ALS Residence Initiative in an “effort to duplicate the project nationwide.” The next facility to open will be in New Orleans.

PatientsLikeMe President and Co-Founder Ben Heywood Getting a Tour from Longtime PatientsLikeMe Member and ALS Activist Steve Saling

Steve greeted Ben and Jenna at the door and was excited to get the tour started. Unable to speak on his own, Steve communicates through a sight-based technology that can translate eye movements on a computer screen into audible speech. As he showed Ben and Jenna the residence, Steve demonstrated the independence that advanced technology and the center provide him by opening doors, turning on lights, operating elevators and changing TV channels. The foundation also encourages this independence by getting their residents out and about.  Steve described some of their recent excursions, like going to the movies, downhill skiing at Nashoba and traveling to Disney World.

The Dining Area of the Steve Saling ALS Residence

Steve became a PatientsLikeMe member seven years ago following his diagnosis. Since then, he has been a model community member, regularly updating his symptom reports and frequently chiming in on the ALS forum. In his PatientsLikeMe profile summary, Steve says, “I accept my new challenges and take a great deal of satisfaction in adapting to my losses.” The PatientsLikeMe ALS community is nearing 6,000 members, with patients learning from each other’s shared experiences every day.  Join the conversation anytime; they’d love to hear from you.

To learn more, check out the video below, in which Steve discusses “the dire need for residential living options for the chronically disabled.”

ALS & MS Residences at the Leonard Florence Center for Living from Steve Saling on Vimeo.


Help Patients Live Well with ALS

Posted September 1st, 2011 by

In February, we told you about veteran ALS member SmoothS and his efforts to bring to life the first and only fully automated, skilled service residence specializing in ALS. The Leonard Florence Center for Living opened in November 2010 in Chelsea, Massachusetts, and now SmoothS is working on bringing his groundbreaking concept to other cities.

Want to help this admirable mission? On Sunday, September 25, 2011, the center is hosting a Walk for Living event to raise funds for the Steve Saling ALS Residence and the Slifka MS Residence next door, both of which are part of the center. 100% of donations will go towards these two residences as well as the effort to build additional residences throughout the country through the ALS Residence Initiative (ALSRI).

If you are in the Boston area, you are invited to sign up for Team Smooth Saling ALS Residence. You can also make an online pledge here. Thanks to a generous matching program with The Herb Chambers Companies, every dollar you give will be matched 100%. In addition, all pledges are tax deductible and will help make a profound difference in the future of how care is delivered for people determined to live with ALS.

To learn more, check out the video below, in which SmoothS discusses “the dire need for residential living options for the chronically disabled.”

Learn Why SmoothS Founded the Steve Saling ALS Residence

“ALS does not have to be fatal, and with your help, I will prove it to the world,” says SmoothS. “Until medicine proves otherwise, technology IS the cure. Thank you for your support!”