What is ALS
Amyotrophic Lateral Sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor Neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the Motor Neurons in ALS eventually leads to their death. When the Motor Neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Awesome ain’t easy….but it ain’t impossible either!
Raising awareness about living with ALS. It is not a death sentence. Technology can help us live long, full, relevant lives. The Swarm ALS Activists is a moped affiliated organization that raises awareness and money for the ALS Association of Florida. This organization was founded by Stephanie and John in honor of Stephanie's father Arthur Bruce Smith that passed away from the horrible disease in June of 2014. ALL of the proceeds go to the ALS Association for research and equipment for people living with ALS. We hope ALS will one day have a cure.
(Written with his eyes using a Tobii Eye Gaze System)
"My name is Arthur Bruce Smith. I am 54 years old. On April 27, 2013, I was finally and definitively diagnosed with ALS. The disease progression was alarmingly rapid, not only for me and my family and friends, but for my doctors also. My symptoms began to present the previous year or so, coming on as intense, painful muscle cramps, fatigue, fasciculations weakness and then atrophy.
It seemed that as soon as we could get our heads around a current symptom, things would change and the challenges would increase. Within a few months I found myself accepting my fate as it was described to me by all of my doctors. I prepared myself for what should be a very short future. I became a bit depressed to say the least.
Fortunately for me, I am married to a woman that wasn't willing to accept this outcome. One morning, she sat next to me on the bed and told me she was willing to travel whatever road I chose. She had been doing some research and learned that there were folks out there LIVINGWITH ALS! They had made that choice.
I must say that the options for living were never offered to us by the medical community, we discovered them through various forums.
The next thing I knew we launched ourselves headlong into the mindset that my disease was NOT a death
sentence. My symptoms continued to progress at a rapid pace. By the mid May, I was using a walker. Two weeks later, I was in a wheel chair, then into a power wheel chair, which lasted about two months when I lost the use of my hands. I was ventilator dependent 24/7 by July 7th.
I was unable to leave my house from mid August until the end of October, when after what seemed an eternity, my custom wheel chair was delivered. In November we made the decision to go invasive with a tracheostomy and PEG feeding tube. I had lost 90 pounds of muscle.
On December 3rd I was transported to the hospital for the surgeries. This has been an excellent decision. It adds to my daily maintenance, but it makes my life a little bit more streamlined.
I am fortunate that I can communicate through speech. I have the trach cuff lowered and either roll with that or use my Passy-Muir speaking valve. I also communicate using a Tobii PCEyeGo on my computer. The ability to do these things makes a huge difference in the quality of my life."
- Arthur Bruce Smith
Bruce's Professional Life
(Written with his eyes using a Tobii Eye Gaze System)
"A large part of my professional life included teaching adults. I hope to return to it soon. As a good friend of mine told me, "The instrument has changed but the music is the same" One of the things that I learned about adult learning techniques was that there are generally three types of students. Prisoners, Vacationers and Volunteers.
Prisoners are told to be in class, they always sit in the back, disinterested and not at all engaged in the course. Vacationers were also told to attend, but since someone else is paying for their time, being in class beats being at work, so why not. They usually sit in the middle rows. The Volunteers are fully engaged and sit in the front.
Even with ALS I am not a prisoner. Nope. I was, but not any longer. I have ALS and I am a quadriplegic and I have the difficulties associated with the disease, but I am not a prisoner to it. How can this be? I choose to refuse. Do I feel confined? Absolutely. But I also enjoy extreme freedom through my technology. Although I have lost the function of my arms and legs, through the modern miracle of Eye Gaze Technology, I am able to use the full function of my computer. I am typing this with my eyes! With my computer I can go anywhere I want to go. I can communicate with anyone that will listen. I am speaking to you right now.
I am also not a vacationer, I know, I know. How is it that someone that has practically everything done for him each and every day, say they are not on some grand vacation. I get moved around, I don't lift a finger. My wife gets my clothes ready and dresses me each morning. I don't even have to worry about walking, I am lifted and carried to my wheel chair. If I am rolling, I am pushed and rolling fat in my custom built metal flake blue beauty, and it doesn't even make my butt look big. I get massaged and exercised several times a day, when I start to smell offensive I am bathed. I am fed my meals 5 to 6 times a day and I don't even have to chew, that is taken care of for me too. Oh yeah and I can keep doing whatever it is that I might be doing while I enjoy my meal. It all goes through a tube sticking out of my skin near my belly button. I don't even have to wipe my own ass anymore, nope my wife takes care of that too. Sounds like the ultimate vacation you say? Well thats not all there is too it. Oh no, not even close. Get this......I don't even have to breath for myself! No shit, really! I have a magic box that has a hose that brings air to my lungs through a hole in my neck. There's still more but we will talk about that later.
Enough about what I am not. Let's talk about what i am. I am a volunteer. And, that is why I am here. That is the purpose of this web site. We hope to educate and stimulate others regarding ALS. It is NOT a death sentence. You have a choice. Our promise to you is that we will be upfront and engaged. We will always be keepingitreALS!" - Arthur Bruce Smith
In the state of Florida alone there are between 1500 and 1600 ALS patients at any given time. The roster is constantly changing. Those living with ALS can and should live long and full lives, no matter the time frame the doctor has given them. Look at Stephen Hawking. Even though Bruce couldn't do the things he used to do such as teaching Arborist Safety and Arboriculture, woodworking, traveling, etc. He never lost passion for any of it throughout living with the disease. The progression of his symptoms happens to less than 5% of people living with ALS. With ALS it can affect each person differently and at different speeds, Bruce's progressed very rapidly. Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three
years after diagnosis. About twenty percent of people with ALS live five years or more and up to ten percent will survive more
than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
There can be significant costs for medical care, equipment and home health care giving and insurance doesn't believe some equipment is necessary (ex:/ T70- Cough Assist and a Ventilator to breath). Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS ( this drug does not work for everyone).
SYMPTOMS OF ALS
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech,
swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
Complete Atrophy of muscles
**Patients with ALS feel everything, are of mind and body, just because they are paralyzed doesn't mean they cannot feel. ALS is very painful.**
WHAT YOU CAN DO TO HELP
Learn about ALS
Get involved with your local ALS Association
Go to Events
Pass this site on
Donate (Money, equipment, your time, your words, knowledge)
FLY FREE ARTHUR BRUCE SMITH
04-14-1959 TO 06/20/2014
YOU ARE ALWAYS IN OUR HEARTS AND MINDS