My name is Shirley and my husband Michael has ALS!
May 2023 Michael woke up one day and slurred his speech as if drinking too much.
He was working as an estimator giving bids for a masonry and fence company. It’s a small business locally owned. He was their only person in this position. Due to the rural area we live in and the small company, Michael had no health insurance. He continued to work although customers were complaining to the office manger about his drinking on the job. This was quite humiliating and definitely not the case. Around August 2023 he could no longer use his fingers to push even the key fob for his work truck and since this was a problem to do his job we decided to just dip into our savings for him to one day retire on.
The family doctor he went to had him do a brain CT scan. There was shadow so now he had him get a brain MRI. Negative. His brain completely normal. Meanwhile he put him on an antibiotic and prednisone. He thought “maybe” a stroke. After the MRI his diagnosis was bells Palsy. I knew that wasn’t it. We went again to the family doctor and asked to see a neurologist. Michael got a referral locally to the one here in town. He said he wouldn’t see him because he was a cash patient. Finally we found a neurologist an hour away and we got an appointment after lots of prayers at the end of November 2023.
After explaining all the changes even in personality and not being able to hold a measuring tape for his job anymore he came back with the preliminary diagnosis of ALS. Michael had gone to this appointment excited and ready to clear things up. Little did he know what was about to happen. After the gut wrenching news more for him the real testing started and the savings dwindled. He got the EMG and a neck and spine MRI which confirmed what the most wonderful doctor who had to deliver the worst news possible gave Michael, one to three years and no treatment no cure. He still cries uncontrollably even with the Nudexta medicine.
We had to use the rest of our savings to live on and to see our grandkids out of state not knowing what was going to happen. Our son who is 28 has had to move in to help bathe and lift because Michael is not able to move like he used to. This is the most horrific thing to watch. I see the love of my life disappearing in front of me. Our future plans of retirement have turned into ventilators, cough assist and suction machines. Our routine consists of regular feeding tube feedings and the most excitement is waking up and he’s still alive. I have become a caretaker in the worst possible scenario. He’s now 58 and lives as though he’s in his late 90’s. I watch his frustration and pain of not being able to breathe or swallow without making sure he’s not going choke. I see him try to pick up a pen to write and it just won’t happen. I am writing this through tears. I wish I would have had awareness of this evil horrible disease before this happened. I feel for every family being forced to experience ALS with not one answer of why.