• Stacey Delikat

The Big Idea: ALS Residence



Last month my producer Jeff and I took a day trip to Boston for a special installment of the Fox 5 "Big Idea" series which spotlights advances in science and technology that are changing the world. The ALS Residences at the Leonard Florence Center for Living in Chelsea, Mass definitely fit that definition.

I will be completely honest that before our trip, I did not know much about ALS, or Lou Gherig's disease. Of course I had heard of it and knew all about the super-successful ice bucket challenge, and had seen The Theory of Anything, about Stephen Hawking. But I guess I had never met a pALS, or person with ALS. I did not realize the horrific toll it takes on its victims: leaving them virtually paralyzed and unable to make even the smallest of movements, but leaving their minds completely in tact.

Steve Sailing, who was diagnosed with ALS when he was 38, just one month after the birth of his son, describes what it feels like to have the disease:

"To understand what it is like to have ALS, lay down and have someone tie a 50 pound weight to each foot and each hand and another one to your head. You try like hell to move but you just don't make any progress. Now tape the end of a 50 foot garden hose in your mouth and put a clothespin on your nose. You have to breathe through that length of hose 24/7. You will try to talk but no one can understand you through that length of hose. Now you have to live the rest of your life like this."

Steve knew this would be his fate, but he hoped that even in the advanced stages of the disease, he and others with ALS could still live with dignity and a sense of independence. When he was first diagnosed he already began to fear he would become a burden to his family as his disease progressed. He went online and dug deep for information on what services were out there for people with later-stage ALS and what kinds of living situations were available. The options seemed grim and in most cases led to traditional nursing homes or chronic care hospitals.

Steve's housemate, Patrick, lived in one of these for several years. Says Steve:

"It is not that he was purposely mistreated but their objective was to keep him alive, not to facilitate having a life. In their eyes, sustaining his life didn't require giving him a shower so he went for over 2 years without one. Their minimum standard for cleanliness only required a sponge bath daily in the same bed he lived in 24/7. Toileting was in the same bed. Getting out of bed was considered a liability for the hospital and since their regulations didn't require it, Patrick never got out of bed. His whole existence was based on providing the minimum standard of care required by law. Even prisoners are required time outside and leisure activities. It is absurd that patients don't get at least the same right."

Patrick's situation is sadly familiar to people with ALS and their family members. But Steve was determined to have a better alternative. So he created one.

The Steve Sailing Residence is one of the only facilities in the world where technology enables the residents, all pALS, to live with a sense of independence. Even though they can't move any body parts, they are still able to open doors, turn on televisions or thermostats, and in many cases, move about freely in their wheelchairs. It doesn't look anything like a nursing home. Instead bedrooms are decorated as they would be at home, meals are prepared in an open kitchen, and residents congregate around a central dining table or in

It's inspiring to see how the 20 men and women living at the Steve Sailing and Dapper McDonald residences at Leonard Florence are empowered in their day-to-day lives in a way they wouldn't otherwise be. But consider this: as many as 20,000 Americans are living with ALS at any time (ALS Association). There are only 20 beds at these facilities. The two residences at Chelsea Jewish were created thank to extremely generous donations. Countless pALS are clamoring to get in, but the space doesn't exist.

To see how the residence works and how Steve designed it to fit the needs of ALS patients, watch the story. And to learn more visit

http://www.chelseajewish.org/leonard-florence-center-als-ms


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