Automation for ALS (Lou Gehrig’s) Patients

Automation for ALS (Lou Gehrig’s) Patients


In 2000 one of the most talented people in the Home Automation Industry (Steve Smith) contracted Lou Gehrig’s Disease (ALS). The story below is how Home Automation played a vital role in helping Steve live with this terrible paralyzing disease!

 People with ALS quickly become totally paralyzed without the ability to move or speak. They maintain only the ability to move their eyes. Even without the ability to control their movement, they still have feelings of touch. If they itch they can’t scratch and they also can’t tell someone else to scratch for them.  Most people pass away in less than a year from the date of diagnosis.

Steve lived with this terrible disease from 2000 to 2013. For most of those years, he could not move or speak. How he did so is a story that must be told. When I took on the tasks described below in an issue of CE Pro magazine, Steve had asked me to do some things for him using Home Automation to enhance his situation.

What inspired me was not only that he was a dear friend, my inspiration took on a new meaning when he told me this, He said ” I will not leave this earth until my son Matthew graduates from High School”. Matthew was in elementary school at the time!

Steve taught many of us that we can continue through the toughest of situations if we choose to do so. I have met no one with a burden as severe as is. And I have met no one as tough as he was inside and out!

  In 2007, the system the team installed was awarded the 2007 National Mark of Excellence Award from CES Techhome as the Top Home Automation Project of that year. While that honor is quite special. What happened to me in January of 2013 was a better blessing. In January of 2013, I got a call from his Son Matthew. He asked if I would preach at his dad’s funeral in a few days.

The story below tells of only a small portion of the life of Steve Smith and those special people and manufacturers who made his last years bearable. They all teamed together to prove not only that Home Automation can enhance lives, it can also help people bear such a heavy burden as Steve. Today when I feel down, I need only to remember the life of my special friend Steve Smith. He blessed me and all that he met until the very end. I miss you buddy and will see you soon! Tony

“I truly believe I understand what Lou Gehrig meant when he said ‘I’m the luckiest man alive’”.
He was speaking of friendship – belonging to something – just as I also have discovered in this
industry. During hard times is when friends help friends. Mine have come through for me once
– Steve Smith

by Erin Harrington For CE Pro Magazine

Technology may drive this industry, but humanity sustains it.
Against a backdrop of home automation equipment and technological props, a story is playing out
in this industry of huge humanistic proportions. The antagonist: A heartless disease – Lou
Gehrig’s, a.k.a., Amyotrophic Lateral Sclerosis, or “ALS”. The protagonist: Industry veteran
Steve Smith of Home Systems in Greenville, North Carolina. He’s a likable guy with a family
that adores him and colleagues that respect him. His is a story wrought with conflict, a race
against time, and one that summons you to root for the underdog. Most of all, it’s a story that
speaks to the most powerful of forces – the power of the human spirit. And it has our industry
rising to its feet.

Diagnosed with Lou Gehrig’s in 2000, Steve Smith was forced to leave his business of 25 years
and reconcile himself to an incurable disease that renders voluntary muscles useless. (It attacks
nerve cells in the brain and spinal cord. Motor neurons, which control the movement of
voluntary muscles, deteriorate and eventually die. When the motor neurons die, the brain can no
longer initiate and control muscle movement. Because muscles no longer receive the messages
they need in order to function, they gradually weaken and deteriorate.)

After the ravages of the disease started to take their toll and with years of home automation
experience behind him, Smith knew, instinctively, that automating his home would help prolong
his ability to communicate with others and continue to function virtually without functionality.
“After more than 25 years of designing and installing home and business systems that were
luxury items to enhance people’s lifestyles, I find it ironic that I’m now involved in the design of
a system that is a necessity for me to control my environment, and interact with others via email, telephone, or in person,” Smith concedes.

When he considered the benefits of “lifestyle enhancements’ as a necessity – not a luxury – the
first person that came to mind was Tony Stewart, a long-time friend to Smith and owner of Stewart Electronics, an industry leader in home automation based in nearby Greer, South Carolina. No longer
able to communicate except to his family, he contacted Stewart, via an e-mail sent by his
daughter. It was an e-mail well sent.

“He reached out to me looking to purchase equipment to automate his home,” Tony Stewart
recounts. “I felt he shouldn’t have to buy the stuff. His financial resources have been depleted by
his illness. And, even though his mind was one of the best in the industry, and still is, he no
longer has the dexterity to do the install.” A light went on. Stewart thought about what

technologies would help his friend at that point most and approached three manufacturers
with products that would begin to fill the bill.

“I contacted Elk (Products, Inc), NuVo, and On*Q Legrand and asked them if they would donate
equipment,” Stewart says. “They reacted very fast. It didn’t even take 5 minutes for them to
agree and it wasn’t done for any other motive except to help Steve and the situation.” While
there will be many more products needed that can help Steve function through the latter phases
of his illness (an assessment is being done soon at his home to help determine what they are),
Stewart selected these three initial manufacturers for very specific reasons.

“I chose Elk because of their control infrastructure. Their M1 Gold is a controller that has no
limits – you can do anything. Secondly, they’re heavily involved with voice output, and Steve is
going to have to annunciate his needs to his caregivers. It will do the talking for him and is
capable of an unlimited string of voices to communicate what he needs. It’s programmable
through a laptop PC and has easy-to-use English language programming.” Speaking on behalf of
ELK, Trudy Phillips notes, “We were very happy to help. And, we get two benefits from it – to
help an industry veteran and to prove our product in an application of this sort. It can then be
more widely used to help others like Steve.”

Stewart turned to NuVo (now owned by OnQ Legrand) for its Concerto whole house system. “Among Steve’s initial list of
needs and desires was his ability to select his own music. It’s got a dual FM/XM tuner and with
fingertip control, he could change the XM or FM radio station and route the sound to other
rooms in the house and change the volume if needed.” NuVo was also more than happy to help.
President David Ridardi points out “Steve is one of ours in the industry and if we can help bring
some benefit to him, how can we not? It’s that simple. A whole home audio system can bring
music into his life, which is soothing. The system is controlled by Infrared, so if he’s limited, he
can use remote control.”

Tony selected On*Q because of their dependable PLC lighting system with switches and
controllers. They can also be retrofitted around the existing home. OnQ Vice President Dave
Hanchett adds, “I’ve known Steve for a long time. The compelling part of doing this, for me, is
the close relationships that form between manufacturers and integrators. There was no
question we wanted to help. We go back a long way and I was so sorry to hear of Steve’s illness.
This is just a testament to long-term relationships.”

Ditto for the integrators that have selflessly stepped up to the plate to help further the cause. In
addition to those who will assess Smith’s home and recommend applications, integrators are
stepping up to the plate to donate their time and talent to the cause. There will be two teams of
integrators- led by Gary Bridwell of Stewart Electronics and Ryan Hyatt of SS&E, both of South Carolina- that will install the system Tony has designed. Because Stewart Electronics offers systems training nationally, integrators from all over the country are taking part in the effort and generously paying their travel expenses out of their own pockets.

Team leaders Hyatt and Bridwell exemplify the spirit of all the integrators they’ll lead on the
project. “Tony and Steve had trained me several years ago and I’d worked with Steve on large projects,”
Ryan Hyatt states. “He helped me out with designs and installation projects
. I feel it’s only right to help him out now. We did a lot of work together, went to trade shows together, and we had a blast.”

Gary Bridwell echoes the sentiment. “I’ve known Steve personally for years,” he says. “We’d
often be at Stewart Electronic’s “Automation University” Training at the same time and became friends over the years. When he got sick I felt badly but didn’t think there was all that much I could do to really help. When this opportunity
presented itself, I was glad to get involved. It meant there was something I
could do to help him

It’s comforting to know that most human beings want to step up to the plate to help those who
need it. Stewart and the team of manufacturers and integrators he’s assembled thus far are
indicative of that. But there’s so much more than can and should be done. Not only for Steve
Smith, one of our own, but for the larger community of persons struck by an illness that can clearly
benefit from the technologies inherent to our industry. Steve Smith, through his courage and
willingness to forge ahead, in conjunction with what he calls his “Dream Team” in this effort,
may very well be paving the way toward helping others in his predicament seek and find a more
humane way to battle the most inhumane of diseases.

More is needed to further the cause (see the Wish List sidebar). Manufacturers, through their
innovative technology, and integrators through their systems savvy, are encouraged to do so, in
whatever measure possible, whether that be through the donation of equipment, time, talent, or
even financial sponsorship of those industry professionals who are giving freely of their time to
help bring comfort to an otherwise most uncomfortable of predicaments. The most powerful of
forces – the power of the human spirit – is winning in this story of human struggle. And it is
perhaps the best medicine that one of our own – Steve Smith – has in fighting his fight. It’s a fight
he’s enduring eloquently and with much dignity and grace.

“Miracles take many forms,” he says.“In my life, it’s the friendships of caring people that make
each day possible A well-designed home automation system will allow me to keep a large sense
of my independence and for that I will be eternally grateful to Tony Stewart and his associates.
They and anyone else that works on the project will be my “Dream Team”. Tony has always
come through for me on projects in the past and he has yet again with his offer to help with the
a most important project in my life.”

The support Steve Smith is receiving from his industry counterparts, coupled with that of his
children (Stacy, 26, Jessica, 18, and Matthew, 11) and granddaughter (Kaiah, 4) is sustaining him.
“There is a reason for hope,” he says. “Hope is something we all share in common.”
Steve Smith also shares something quite profound with the legendary man synonymous with his
disease – Lou Gehrig. In his farewell speech, standing inside Yankee Stadium on July 4, 1939,
Lou Gehrig declared himself the “luckiest man on the face of the earth.” With humility and
modesty, Gehrig later said “I close in saying that I may have had a tough break, but I have an
awful lot to live for.”

He passed the baton to Steve Smith, who communicates, through technology and the help of his
family, “I truly believe I understand what Lou Gehrig meant when he said ‘I’m the luckiest man

alive’. He was speaking of friendship – belonging to something – just as I also have discovered in
this industry. During hard times is when friends help friends.
Mine have come through for me once again.”

http://Contact Us – SmartHouseParts.com | Stewart Electronics.

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