[Ron Scott]

My symptoms began in January 2017 while on vacation I had difficulty breathing when I went snorkeling with my wife. I am scuba certified and open water rescue certified therefore I was a little freaked out because I couldn’t breathe while snorkeling. Well that was the beginning of my journey to find out what was wrong. Over the next 18 months I went through vigorous testing from my heart having an angiogram and probably every respiratory test known. I had an episode at work where i could hardly breathe so I went to the hospital where they did a sniff test, nuclear imaging, a brain MRI and tons of other workups- They found nothing wrong with my lungs or anything else for that matter.. I went to a neurosurgeon that did an MRI on my neck and realized that I had severe bone spurs that needed to be repaired. I was also losing strength in my hands, I couldn’t open a package of crackers. Therefore everyone thought that the bone spurs were blocking my spinal fluid and affecting my frantic nerve along with the nerves that go to my hands. The surgeon sent me to a neurologist to have an EMG, which I did and was made aware that I had fasciculations and no mention of ALS. On October 1, 2018 I went into a 4 hour surgery to repair my neck. The doctor kept me in the hospital and on the 3rd day I lost the use of my right arm and on the 12th day I lost the use of my left arm. I was sent to inpatient rehab and ultimately stayed in the hospital a total of 26 days. I was prescribed to go on electro muscle therapy along with a daily use of what they call a bone stimulator. Upon a visit to my Neurologist/doctor in early November he noticed I was having severe fasciculations In my legs and that I should get that checked out because it could be ALS. 3 weeks later a neurologist informed me that he was 80% sure that I had ALS and that I need further testing. After 2 more doctors 1 of which is a world-renowned MD and ALS scientist at Houston Methodist Hospital named Dr. Stanley Appel. He and his team are remarkable people and really helped me focus on keeping a good/positive attitude because that will determine how long I live. Since my diagnosis I have survived because of the trilogy noninvasive ventilator which I have one On my bedside and one on my motorized wheelchair. Dr. Appel said I could live in the 20 years with this machine. Since my diagnosis my breathing has gotten worse And I have pretty much lost the use of my hands and arms and am pretty much bound to my wheelchair when I’m not in bed. I have been informed that the worst thing that I could’ve done was to have the surgery.I can walk maybe 20 feet but I’m so out of breath have to get back in my chair with the ventilator. I have not seen any degradation in my speech or my ability to eat (with assistance of course) and am praying for 1 of the various trials to be successful at slowing or stopping this vicious disease. I am happy to further discuss the with anyone that is interested.