2 posts tagged “chronically disabled”

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!”