Chapter Eighteen: Life Goes On

As the summer of 2015 unfolds, life goes on in Stephentown, New York. We have tickets to see the Beach Boys at Indian Ranch in late August. Lucky and Kevin Bacon  patrol their corral looking for a little extra food. Allison sits on her bench feeding them carrots. Bosley and Bronson are enjoying their golden years. Clancy takes his watchdog role seriously, barking to announce visitors and passersby. Allison’s guppies are in an unknown generation.

Yvette faithfully comes each day to assume her role of friend, mother, or grandma, whichever circumstances dictate. Gail, the speech therapist, has entered her fourth year of working with Allison.  Rob, the physical therapist, walks Allison down our long driveway. Midge who has faithfully visited from Georgia for the past nine years is approaching ninety-one and not doing well. Barring a miracle, she will not be coming this year.

Rob comes up from Boston faithfully, usually bringing the latest technological gadget for us to learn. Fred makes the trip from Rhode Island regularly. We do not have a large circle of people to share our adventure with, but the ones we have are loyal. People who desert you because of misfortune are not people you need.

Allison does not have good or bad days. She has good or bad hours. I never know what Huntington’s Disease is going to offer up next. Sometimes it’s something old that I’ve handled before. Sometimes it’s something new needing not yet tried solutions. Allison lives with a far better quality of life than other HD patients that I’ve witnessed in nursing homes and has certainly far exceeded any prognosis given her. Since her early days with HD, Allison has always said “I just want to live eight more years.” She still says it.  She’s now almost done that twice. Thankfully it has been four months since Allison’s last ER visit, her longest stretch in years.

Huntington's Disease is not for the faint of heart. If you decide to tackle it head on, be ready for a long hard battle. Sometimes you’ll laugh, mostly you’ll cry. It is heartbreaking to watch what this insidious disease is taking from my once vivacious daughter. It is heartwarming to watch the spirit with which she fights her illness. I don’t know what tomorrow might bring. I do know that yesterday we went for a ride in the Miata and today Allison is playing Virtual Families. Allison’s life has meaning. Huntington’s Disease will not win without a fierce fight from this family.