Chapter One: Pre-diagnosis

Allison was a very precocious girl. She was publishing cookbooks by age seven. She never stopped asking questions (she attributes this to her initials: ASK). She breezed through school with little effort. Her IQ was measured at 149. She was often a handful but always a delight.

As a young girl, Allison liked cows. Boy, did she like cows. She had a stuffed animal collection of about fifty cows. Her clothes bore pictures of cows. She even dressed as a cow for Halloween. She also liked roller coasters. We drove from Rhode Island to Massachusetts, New Jersey, and Pennsylvania to ride coasters. We even flew out to California to ride roller coasters at Disneyland, Knott’s Berry Farm, and Magic Mountain. She loved the Red Sox and adored Nomar. We spent many a summer night at Fenway Park.

In the summer of 2000, life was mostly good for Allison. She lived with me in Warwick, Rhode Island, and was preparing to go off to Wheaton College in Massachusetts that fall. She liked computers, boys, and puppy dogs. Her senior year of high school was pretty routine except for a few minor car accidents and a hospital stay to treat depression.

In September, Allison went off to study at Wheaton. She made lots of new friends, made the Dean's List, and played on the women's ice hockey team. She even got to take her beloved car “Jaws” with her. Having a car made her popular and allowed her to spend weekends at home, working at my store. On a trip to Burlington, Vermont to visit her best friend Meghan, Allison misjudged an exit, hit a guardrail and almost totaled Jaws.

Our family friend, Steve, owned a body shop and had resurrected Jaws several times before. Luckily, he was able to do so again. Allison’s driving was a worry, but everything else was going well. Looking back, her driving problems were an early sign of Huntington’s. HD patients have spatial problems and don’t judge distance well.

Allison’s first year of college ended with her making the Dean's List both semesters and offered high hopes for Allison's second year. Things were so good that I thought that perhaps she had dodged the HD bullet. She came home to work and play and get ready for her sophomore year. It was a summer of fun with no HD worries.

Allison’s sophomore year did not start well; she was tired, sleeping through classes, and not keeping her grades up. She started seeing a counselor, who was of no help. I thought that perhaps it was just a sophomore malaise. Right before Thanksgiving she and I met with Wheaton officials and decided that it was best for her to withdraw so that her poor grades would not become part of her permanent record. Allison left Wheaton with hopes to return soon and came home to live with me in Warwick.

Life was a bit hectic at home. Rob, my son, was also staying with us. He was recovering from a battle with stage 4 Hodgkin's Lymphoma, and a two-month hospital stay. He was still getting chemo and was too sick to go back to his house and work. Allison was uncharacteristically nice to her brother and even ceded her room to him.

In November of 2001, the world had recently been rocked by the attacks of September 11th.  Allison got a job as an airport security screener at Greene Airport in Rhode Island. She loved it and was proud that she had detained Oliver Stone from boarding his flight for trying to bring twelve disposable lighters on board. Mr. Stone was none too happy, but Allison got a kick out of it. Why would someone need a dozen lighters? Allison was having so much fun, she decided to take the next semester off and continue working at the airport.

By mid-winter 2002, Allison had developed a case of wanderlust. Her Grandparents, Bob and Midge, had retired to Georgia in 1999. They were an interesting couple. Midge was outgoing, opinionated, and easy to clash with. Bob was quiet, unassuming, and easy to overlook. Allison and Midge were close, kind of. They had their conflicts, yet could not be kept apart.

Allison had made several trips to Georgia and was itching to go again. The only problem was that she was not entitled to any vacation time during her first year on the job. The airport would also not give her any unpaid leave. No problem: Allison quit her job. Trying to instill responsibility, I told her that she would have to find another job and could not work at my store.

After her journey to Georgia, Allison returned to start her job hunt. On the first day, she found a job at a muffin shop in Warwick. There, she waited on customers, helped bake the muffins, and delivered orders to commercial customers. Allison’s shift began at 5:00 am, resulting in many early morning calls to our home. Despite the low pay, she seemed happy enough with the job.

Not only did Allison find a new job, she also found a new boyfriend. Brian was from Woonsocket, a gritty city about 20 miles north of Warwick. He very quickly decided that it was too much trouble to drive to Warwick to pick her up, so Allison started driving to Woonsocket to see him. This was the impetus for some major conflicts between Allison and me. I told her that it was time to go back to school.

Allison started taking a couple of courses at the local community college. The courses went well, and she took a few more. Time marched on as did work, school, and, unfortunately, many more car accidents. Jaws took a beating. Our insurance company declared her totalled twice. Steve continued to resurrect her.

In the spring of 2003 Allison cut her hand quite badly while icing a batch of muffins at work. The injury required a trip to the ER, stitches, and follow-up therapy. Charlie, the shop’s owner, let us know that it was not his fault and that Allison was the clumsiest person he had ever met. Despite his cries of innocence, Charlie’s insurance did pay for her medical care. Clumsiness and lack of coordination are early symptoms of Huntington’s Disease.

It was a good time for Allison to come back to work at my store. Fred, who ran things, pampered her, and she could usually get her way. It was also time to make a decision about her schooling. Between her courses at Wheaton and the Community College of Rhode Island, Allison had reached junior year status. She applied to the University of Rhode Island, was accepted, and started taking courses during the summer of 2003. She lived at home. Most of her courses were held in Providence, just a few miles north of Warwick. Allison drove to those. A few were held at the main campus in Kingston, about 20 miles to our south. Allison took the bus to these. There was an added benefit to going back to school full time: less time for the boyfriend.

For the fall semester of 2003, Allison registered for 23 credit hours at URI. I thought this was too much, but she was determined to graduate in May 2004. Allison took the courses, continued working about 30 hours a week at the store, and saw less and less of the boyfriend.

On an early December night in 2003 my phone rang at home. Allison was screaming “come here, come here, they think that I’m drunk.” From her ranting, I determined that she had been pulled over by a cop on Post Rd. in Warwick on her way home from classes in Providence.  I went to the scene. She had calmed down by the time I arrived. As she was leaving school Allison had hit a curb and blown out a tire. She drove home from Providence on the rim. When the officer pulled her over, Allison told him. “I am not drunk, I have Huntington’s Disease.” As luck would have it, the officer called his wife, who was an RN and actually knew a little about HD. He gave us a lecture, saying that we should think about Allison giving up driving but was actually quite nice and empathetic.  We put on the spare tire and I followed Allison home. This was the moment that we both admitted to each other that Allison probably had Huntington’s Disease. I told Allison from that point on she could only drive around town and that there would be no more drives up to Woonsocket. She agreed. As luck would have it, her boyfriend still did not want to make the drive down to Warwick, so he dumped her. She seemed okay with that.

About a month after the tire incident Allison called me, crying, to say that she had just rear-ended a car on Warwick Ave. I went to the scene, about a mile north of my home and a mile south of my store. We hugged each other in the middle of the street, and I said “It’s time”. Allison nodded in silent agreement.  Jaws was put up for sale and Allison never drove again. That day, I called her doctor to start the HD testing process.