I am Robert Machado

I am 77 years old and diagnosed with ALS in September 2022. It took me 1 1/2 years to get this diagnosis. My wife and I had to ask for tests and procedures all based on my many symptoms, which I won’t list here. I finally went to a pulmonologist and I showed a video of me walking. I was stressed and bent over 30°. He immediately said I needed to see a Neurologist and referred me to one. The soonest appointment was five months out. When I finally saw him he almost immediately stated I had ALS. Two further tests verified I had ALS.

He signed me up with a clinic in Scottsdale AZ. My first session with the team was worthless. I had a typed list of questions about what things should I know about ALS? What were the possible affects? What was a time line of progression? What medications would help me, etc. They answered none of these concerns, and still haven’t.

My second meeting went the same way. It was three months after the first. Here is a sample of a concern this time.

“I’m coughing during the afternoon and night and having to spit up a lot of saliva. Is this part of ALS problem?” The doctor said yes. I asked, “Why didn’t you tell this was an issue last visit?” He had no comment. I had another list of questions similar to the first time. No one would answer them. I even had to ask them about the twelve step tests to show where I was on the progression scale. They never mentioned this scale until I asked about it.

I don’t know what to do now? We are in the process of moving from Mesa to Redding CA to get closer to our family. I struggle every day with fatigue and weakness. My wife, Judy, does most things for me. Does all my work to move cause my disease to progress faster? What should I do?