ST. CLOUD — Navy Vietnam veteran Bob Posch of Cook has ALS, Lou Gehrig’s disease, described in his own words as “a cruel, unrelenting terminal illness. Short of divine intervention, there is no cure, and the effects are irreversible. Active research continues with some efforts showing a little possibility. But real hope is elusive.”
Still, Posch is always smiling and he has a positive attitude, says his loving wife Judy. So much so that the staff at the St. Cloud VA Hospital, where Posch has been since last spring, come to see his cheerful face before they start work for the day. And Posch, who can no longer speak, communicates by typing messages on a computer screen with signals from his eyes.
He typed, “Overall, it’s not so bad. Many of my comrades have been taken by truly horrible diseases such as cancer. I feel rather blessed with a relatively low pain disease, one that allows me to keep my senses and mental capacities. I have my senses of hearing, taste, smell, sight and feeling. The most difficult thing is the unrelenting sense of impending disaster. Always. I feel like a man in prison, even on death row. The fact that I can never go home or even leave here is painful on my mind, haunting, like the memory of a bad movie.”
Bob Posch answered questions emailed to him and Judy.
Asked about being diagnosed with ALS, he typed, “In April 2016 while taking a concealed weapons class, I was unable to pull back the hammer on the weapon with my left thumb. Two months later my voice started going, and we thought I may have had a small stroke.” The VA doctor at the Twin Ports VA Clinic ordered an MRI which showed no evidence ofd a stroke. “So we made an appointment with my civilian doctor, Harold Johnston, at Scenic Rivers in Cook. In about five minutes he told us he was not a neurologist but that he was pretty sure I had ALS.” Dr. Rebecca Myerson at St. Luke’s Hospital confirmed the diagnosis, and Posch then saw Ashley Weber, a St. Luke’s speech language pathologist, and an independent neurologist Dr. McKee.
Asked about the signs of the disease, Posch typed, “As time went on and my body continued to succumb to the crippling inevitabilities of the disease, I came to realize this was at once the most challenging and most dreadful adventure of my life. My arms continued to weaken and my legs started to deteriorate. Even my neck started failing during the second year, and by spring of the third year, I had to exclusively take food by tube.
“It became a guess how far would the disease progress and how long would it take? As the weeks and months passed by, my breathing became more difficult and labored until, one day, I felt my body was starving for oxygen and I asked Judy to take me to the hospital. There we made the decision it was time to get a tracheotomy (incision made in windpipe to relieve an obstruction in breathing).” He was transferred to the St. Cloud facility, the only one in the state where the VA would cover ALS expenses. He praised the caring and professional staff which provides 24/7 care and an ALS team that meets regularly with him.
Posch explained how he is able to communicate. In 2017 he learned that the University of Minnesota-Duluth has a program, directed by Jolene Hyppa-Martin, “where I could have my voice recorded and put on my Tobii (device that recognizes signals from the eyes) computer, to be used when I could no longer speak, as my throat muscles weakened. I recorded 350 nonsensical phrases and finished the 2,000 phrases which contained most sounds in the English language.” Then common phrases were recorded and Posch worked on such things as the speed of delivery and how sentences flowed. “My Tobii was now equipped with many voices (young, old, male, female British, Hispanic and one which soundeds like me somewhat). I type with my eyes and hit a “speak” button. I now use one of the male speaker voices which is easier to hear over the intercom system. It is a lot slower than the 100 words per minute I used to type, but it allows me to communicate.”
Asked how he deals with the disease, Bob Posch typed that it’s like actor Will Smith’s character said in a movie, “that fear is not real. It is the imagination of our minds. Set it aside. I try to do that and do a lot of praying. Having accepted Jesus as my savior 44 years ago, knowing where I will go after this life, I don’t fear the grave even though I battle with the fear of the transition from this life. I know when the time comes, God will give me sufficient grace to help me through it. ‘O death, where is thy sting, where is thy victory?’”
Asked to tell of the challenges, Bob Posch answered, “All my adult life I’ve been the provider, the protector. I’ve been a staunch independent, responsible for my own actions and earning my own way. I was strong and able, rarely having to ask for help. As I aged, though it weighed heavily on me, I found it more frequent I had to seek help from others. Now I depend on help from others for everything. That is the real challenge, having to swallow my pride and having my dignity suffer.”
Cards and letters can be sent to Bob Posch, St. Cloud VA Hospital, 4801 Veterans Drive, Bldg. 50, 2nd Floor, St. Cloud MN 56303.