[Ann]

My husband, retired military, had ALS and died May, 2021. We thought he had symptoms back in early 2017. He started going to a civilian Neurologist who had no idea of what was going on. He had back problems for years and went to a Neurosurgeon (Sep 2018) who was sharp, head of Neurosurgery at a large hospital and told us the picture didn’t fit just back problems. He told us if my husband was his brother he would say he was starting into ALS. Told Neurologist this and she said “no way” and ordered more tests. His ALS started with Bulbar ALS so he was sent to a speech therapist which didn’t do much. We had a 2nd home in SW Florida and went there and went to another Neurologist. This Neurologist also would not diagnose ALS and said we needed to go to Academia to get an answer. He suggested Univ of Miami as they had an ALS clinic. My husband didn’t want to go there and just continued to see the Neurologist who wouldn’t tell us anything definitive. Meanwhile, he was in a wheelchair most of the time with definitive speech problems. He finally set up an appointment in Sep, 2019 at Univ of Miami where he was immediately diagnosed. This was all in the civilian spector. He then went to the VA hospital in Tampa where they confirmed his diagnosis. Since 50% of the people with ALS are military related we should have gone there first, in retrospect. But, he was not in favor of being treated in the military system so that was put off which was a mistake. If anyone, military related has any hint of ALS they should go to the nearest military medical facility. The Tampa ALS clinic took marvelous care of my husband to the end even though we lived over 2 hrs away. They can provide support medical personnel from the area or that come down 2 hrs away. They provided any equipment he needed and partial care with an aide since he stayed at home. The Tampa ALS clinic was marvelous until the end. I just don’t think many people along the way that he saw knew anything about ALS, except the Neurosurgeon he saw in 2018. Then others blew off the idea of ALS. No one wants to tell someone they have a terminal disease including his Neurologists. But, they will tell you if you have cancer…why not if you have ALS.