Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
We believe Al's symptoms of ALS began in the summer of 2015 when he fell and broke his leg. He had a foot drag since recovering from the Guillain-Barre Syndrome he was diagnosed with back in 2003. He had fallen numerous times since then so we initially thought it was the result of that side effect. Al's broken leg healed, but he never graduated from needing an assistive tool. He made it to a cane before his gains in leg mobility seemed to go in reverse.
We went through a diagnosis of Neuropathy which made sense since Al has diabetes and his symptoms were very similar to Judy's brother Doug who had that diagnosis. As Al's condition worsened and he lost more mobility, the diagnosis changed to PLS which is basically the non-fatal version of ALS. Hearing a diagnosis related to ALS was definitely scary, but we hung onto the non-fatal part. At the end of August 2018 Al ended up in the hospital then to Ingleside nursing home in Mt. Horeb for rehab. It was very clear that he needed more care than could be offered at home so he moved into the residence at Ingleside in September 2018.
Al's strength and mobility continued to decrease rapidly, more so than what is typical for those diagnosed with PLS. Within a year he had lost his mobility other than a bit of movement in his right hand and arm. and the diagnosis changed to ALS. There is no longer enough control in his right hand to eat so he needs to be fed. For the past few months care has been put into the types of food and size of bites as his swallowing becomes more labored to reduce the chance of choking. At Agrace he has moved to a mechanical soft diet. He is not at the point of needing his food ground or pureed yet, but that would be the next step. He can no longer swallow pills so he has to have them ground and mixed with food or juice. His breathing has also become more labored so oxygen is on hand if needed.
At the creation of this page, Al had a three-week stint at Agrace Hospice in Fitchburg for symptom management. He had a fantastic medical team who determined the correct regimen with the doses and timing of his meds to help him sleep and reduce his anxiety. He is now back in his room (#38) at Ingleside nursing home in Mt. Horeb. The goofy personality of Big Al seems to have returned and he appears more comfortable which is what we were hoping for.