With the blink of an eye or the twitch of the face, an entire living residence can be controlled. At least this is what happens for patients with ALS (Amyotrophic Lateral Sclerosis) at the Dapper McDonald ALS Residence at the Leonard Florence Center in Chelsea, Massachusetts.
This residence is only the second of its kind in the world. It’s a unique service residence for people living with ALS. The living center has 30 bedrooms that are equipped with systems that give patients with ALS, multiple sclerosis, and other disabling diseases a measure of independence. Through technology patients are able to control their environment through movements like blinks and facial twitches. One of those patients, Steve Saling, has a lot to do with the technology.
After being diagnosed with ALS, an architect by trade, Staling was determined not to live a life dependent on caretakers. He designed these systems that give ALS patients more control over their living. This includes being able to open and close doors, switch lights off or on, monitor heaters and air-conditioning systems, change TV channels, and more.
Staling established the ALS Residence Initiative, a fundraising and advocacy group for ALS to build more accessible homes. They have the motto, “Until Medicine proves otherwise, technology IS the cure.”
What is ALS?
Amyotrophic Lateral Sclerosis (ALS), otherwise known as “Lou Gehrig’s Disease,” named after the late baseball player, is a neurological condition that causes the death of neurons which control voluntary muscles. ALS may also be referred to as a “motor neuron disease.”
ALS is a degenerating disease that slowly takes away people’s ability to walk, speak, and eventually even breathe. Once the disease advances, people with ALS can’t move or live without assistance. ALS is a painful and ultimately life-ending disease where the daily needs of those with it can’t be readily met.
Most people with ALS end up living at long-term care facilities, because they can’t control their arms, legs, hands, voice, and other faculties. Systems like the one Staling created, and other home automation devices, are crucial for ALS patients and caregivers.
Though there isn’t a home security provider on the market that is capable of providing what the McDonald ALS Residence does (this research center is one of a kind), as people with ALS lose function, home automation and security can be beneficial.
How Does Home Automation Help?
Home automation allows those with ALS and other degenerative diseases to control parts of their home and life, and assists caretakers and family members.
Through home automation apps and tools, caretakers can:
- Set reminders to stay on top of tasks
- Turn on and off appliances and devices
- Receive alerts anytime anyone exits or enters the home
- Schedule lights, appliances, and devices around the home
- Monitor the movement of loved ones with video streaming apps (ask for permission)
Through home security devices, caretakers can:
- Protect loved ones from burglars or a break-in
- Have the peace of mind of protection and a safe home
- Have access to police, fire department, and emergency medical responders
These will be the best options during early-onset ALS, but once the disease progresses you will need to take further measures and consult with professional caregivers. Permanent housing is often the best option for loved ones.
Going Forward with ALS and Technology
With proper funding, research, and tools, more ALS resources like the McDonald ALS residence should be available. Hopefully future technological advancements will even allow those with ALS to have access to these resources in their own home, so that they have the tools they need for a good quality of life.
If you’re interested in ALS research or donating to curing the disease, you can visit The ALS Association.