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.