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. Eventually, Al no longer had enough control in his right hand to eat so he needed to be fed. As his ability to swallow decreased, care had to be put into the types of food and size of bites to reduce the chance of choking. In January, he moved to a mechanical soft diet. Now he is at the point of needing his food pureed. He can no longer swallow pills so he has to have them ground and mixed with food such as applesauce or pudding. For the most part his breathing has been ok but oxygen is on hand if needed.
At the creation of this page in January, 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 returned to his room at Ingleside nursing home in Mt. Horeb once he was discharged from Agrace. His palliative care through Agrace increased so he had more visits from CNAs and volunteers in addition to the weekly RN check-ins. All of this extra attention and support was so helpful in addition to everything the Ingleside staff was providing. Things seemed to be going well back at Ingleside until the pandemic hit and the facility had to go into lockdown. Understandably, no one from the outside was allowed in, even from Agrace. Being cut off from the social and medical visits was tough for Al. He didn't always understand why he had to be isolated. During this time, his ALS greatly advanced and he lost a lot of weight. Along with the difficulties in swallowing, it is very hard for him to communicate verbally. Having a conversation is extremely difficult, but he likes to listen to daily happenings, stories, walks down memory lane, and will often respond with smiles and laughs. The week going into Father's Day weekend window visits for immediate family members were reinstated. Judy also found out she'd be allowed one four-hour-long personal visit each week. So the combination of these visits has helped lift the spirits a bit for Al and family but it's not the same as having face to face company every day.
Because the threat of COVID-19 doesn't seem to be going away, the family decided to bring Al home so he can be with family. The move happened on August 14. Agrace Hospice as well as independent in-home caregivers are assisting the family.