Chapter Nineteen: The Journey Continues

The summer of 2015 was not bad. We went to another Beach Boys concert at Indian Ranch which Allison loved. Allison continued to enjoy her hot tub, rides in the Miata and, of course playing Virtual Families.  Bob and Midge didn’t make it up as they were both battling health woes of their own. At this point Allison could barely stand and it took all my strength to keep her mobile. Her physical therapist continued to work with her twice a week. Her speech therapist also helped her fill her Dynavox with new phrases like “I love you; I want to play my game; I want to go in the hot tub; and I want an hour more.”

The Fall of 2015 brought about some profound changes. Allison became edgier and was crying a lot. A visiting nurse was occasionally coming but was of little help. Rob and Fred continued to be our only visitors.

In October Allison and I were driving up I-90 to visit her doctor at Albany Med. I was probably going a bit fast but was certainly driving in the flow of traffic. We were about the fourth car in the queue.  Allison was hooked up to her feeding tube and screaming. A NY State policeman pulled us over and asked for my credentials, which I promptly provided. He gave me a ticket for going 75 in a 65 zone. I had the option of pleading guilty and paying the $285 fine, pleading not guilty and going to trial, or pleading guilty with an explanation. I chose the latter option. A couple of weeks later, a summons came in the mail ordering me to appear in East Greenbush Municipal Court.

When the appointed date arrived Allison and I made the journey to court. Yvette came with us to assist. While waiting in the lobby for the doors to open, Allison created such a commotion that it drew the attention of the bailiff. He was very understanding. He told us to wait where we were and asked what charity he could donate to to help HD folks. A woman came over to us and told us to harbor in place when the doors opened. It turned out that she was the presiding judge. She heard us first and dismissed the charges.

In late November, Allison, Yvette, and I made our scheduled trip to MGH to see Dr. Rosas.  Allison was very agitated. She was screaming and trying to throw herself out of her wheelchair. We were sent down to the ER with Dr. Rosas in tow. Six hours and many sedatives and cat scans later we headed home.

One morning in early December at about two a.m. I felt that something wasn’t right. I went to check on Allison as she seemed too quiet. I couldn’t tell if she was breathing. She was certainly in distress. I called 911 and a neighbor who was on the volunteer squad arrived within minutes. She started mouth to mouth and Allison was whisked off in the ambulance with me following. She was brought to Berkshire Med and admitted. She had aspiration pneumonia. The neighbor later told me that “they brought her back” in the rescue.

When Allison got home she was screaming constantly day and night. She was sleeping little. I could see that it was taking a toll on Yvette. I asked the VNA for more help but it wasn’t forthcoming. Dr. Rosas had made some med adjustments but they were not helping. Allison pulled out her feeding tube which produced another ER visit.

I decided that I had to make some med changes on my own. Since xenazine was said to possibly cause agitation, I decided to discontinue it. I slowly decreased her dose. Within a few days she was back to her pleasant ways.