Chapter Twenty-Four: The Homestretch
Even though she was growing weaker, these were some of the best times for Allison. She was calm and happy, and enjoying her daily routine. She had not lost a bit of weight, which is uncharacteristic of HD patients. She was as alert as ever. After a nine month absence, I brought back the VNA to provide both physical and speech therapy. Allison was overjoyed to see Gail and Rob. Gail ordered a new and improved Dynavox, which would hopefully make things easier as Allison was not talking much at all anymore. She communicated by raising her hand to answer “yes” to questions that I posed to her.
We visited a neurologist at Albany Med in October. Getting Allison there was not easy. We could not get her in my truck, but she could slide into the Miata. Ann followed us in her truck to help get Allison out of the Miata and into the clinic. The neurologist seemed impressed that an HD patient presented so well at this late stage. We went back in November, and Allison had botox injections to treat saliva overstimulation and teeth grinding. I held her hand as she laughed through all six shots to her cheeks.
The early holiday season was calm and peaceful. Allison was sleeping at night, and so was I, a bit. By mid December Allison started having what appeared to be seizures at night. She would go to bed very peacefully, but would wake two hours later with odd thrashing movements accompanied by screaming. This would last for two hours and then she would peacefully go back to sleep. The cycle repeated throughout the night.
I reported this to her nurse and told him that I would like to record this for her neurologist to see. He agreed. I bought a camcorder and did my nighttime sleuthing. The video was quite dramatic. When I asked the nurse for his email address so that I could send him the recordings, he refused to give it to me. Nobody but Ann or I ever saw them. I realized that Allison was not awake when she was screaming and thrashing. She was actually having seizures.
By early January, Allison started having the seizures during the daytime. Nobody I spoke with at the VNA seemed to take it seriously. Her nurse reported to the neurologist that she was having behavioral problems. She was still able to keep playing Virtual Families on her computer for a short time each day. The physical therapist was still coming, but he was essentially just carrying Allison around as he tried to walk her.
Gail was still awaiting approval for the new Dynavox, which I seriously doubted we would ever see. Gail did stop by mid-month to visit. Allison was able to ask her “How’s Lena?”, a query about Gail’s daughter that Allison never failed to ask when Gail visited. Except for maybe “Dad”, those were the last words I heard from her.
Allison was throwing up a lot and I was forever tinkering with her feeding schedule. We switched to a higher calorie formula in an attempt to decrease the volume that she needed.