Like many with ALS, I went through many diagnoses from ankle sprains to sciatica. As symptoms progressed, it became more clear something neurological was going on.
My daddy could not hug his grandchildren because he lost the strength to raise his arms. He could cry... and those tears rolled down his face quite often as he lay there watching us live our lives knowing he was not going to beat ALS.
My wife and I had to self-navigate/advocate until I joined the iamals.org family. They have continued educating and helping us as we learn to live with this devastating disease.
Between the shock of his decline, the extensive gauntlet of administrative hurdles, and the complete lack of understanding from the medical providers, I have never felt so alone.