Chapter Nine: Are You Kidding Me?

In September 2009 I got the call to come pick up the trial drug!  I picked Allison up early in the morning. On the way out the door, we saw the Director of Nursing and excitedly told her that this was the big day! We were going to get the trial drug. She smiled and said “great!”. We drove to Boston and Jennifer greeted us in her usual jovial way. Dr. Rosas gave us eight boxes, each containing 144 packets of the investigative drug, as it was more formally called. She explained  how to start taking it and gave us written instruction for the nursing home. We would not know for many years if Allison had received the real thing or a placebo. We went to Sonic and then headed back to the Berkshires.

When we got back to the home, the Director of Nursing was gone for the day. We gave the boxes to the head nurse on Allison’s unit, who locked them in the drug room. I drove home happy that Allison had finally realized her dream of being in a clinical trial.

The next morning I received a call from the Director of Nursing. She asked me “what are all these boxes?” I explained that they were the investigative drugs for Allison’s clinical trial. Her reply was: “What clinical trial? We do not do clinical trials here. We will not give her these.” I could not believe what I heard. We had talked about the trial with her so many times. She didn’t know about it? She had to be kidding! Allison had the legal right to take any treatment she desired, experimental or not.

I went ballistic. I called the home’s administrator, who had no good answer for me. I called the home’s corporate headquarters.  I contacted the New England Chapter of the Huntington’s Disease Society of America. I called Dr. Rosas, who was beside herself. I called Jimmy Pollard. I called news outlets. I called politicians. I called just about anyone I could think of who might be able to help.

A couple of days later, the Director of Nursing called and told me to stop calling people. She told me that her decision would stand, and that I could talk to their lawyer. She said the lawyer would call me. I welcomed that conversation.

Their lawyer called me right away. She was a former nurse who had become a lawyer. After we talked for a while, she told me “Of course Allison can take the drug. We are supposed to be an HD specialty center. More of our residents should be in trials.”  Allison started the drug that day. A couple of weeks later, the Director of Nursing was no longer working at the home. I never heard why she left.

It was the Fall of 2009 and Allison was starting her fourth year living at the nursing home. She was also starting her fourth year of playing Virtual Families on her computer. Her behavioral problems were mostly in the past. Her physical problems were escalating. She had been symptomatic for about eight years which is the average lifespan for a person with juvenile HD. After the latest battle I needed to relax and enjoy the time we had left together. Despite what had transpired Allison was happy and probably in the right place.

We travelled to Boston every couple of months for the trial. The drill was pretty much the same each time. We announced ourself to the security official, Jennifer came down to greet us, and Allison teased Jennifer. Sue would draw the blood which was not always an easy task. They needed about seventeen vials and Allison was often too dehydrated to comply. A bottle of juice usually solved the problem. Dr. Rosas would interview and examine Allison and would occasionally report any medical irregularities to the nursing home for observation or follow up. We often declined their offer of lunch and ate at either Sonic or the Clam Box. We also found a Boston Market on the trip home which offered mashed potatoes and chicken that Allison could usually swallow.

The fall weather was nice and Allison and I cruised around in the convertible until Thanksgiving. The nursing home now offered “Tony from Enfield” a singer from Connecticut who performed monthly. Tony asked if anyone was celebrating a birthday and Allison told him that her’s had been in August. He sang a belated “happy birthday” to her.  He fast became Allison’s favorite entertainer. He sang oldies by Elvis, Satchmo, and the Beatles. He really was too talented to be playing the nursing home circuit. Tony started calling me “Governor” because he thought that I looked like Bill Weld, a former Massachusetts governor. Allison went on many outings with the other residents and her life was pretty good at this point.

The holidays came and we spent some time with Rob and Fred.  2010 held the promise of being a good year.

Allison started taking xenazine in January 2010. The medication was fedexed to me each month from Accredo Pharmacy in Tennessee  and I brought it to the home. It was classified as a specialty drug and was not available in retail pharmacies. The only hiccup was when an ill informed nurse decided that it was not a good medication and called Dr. Rosas and requested that it be stopped. I do not know what her motive was, but my outcries were heard and Allison continued taking it. It was hard to tell how much it helped her, but it certainly didn’t hurt. Because it slows movements Xenazine does help many HD patients with balance and mobility issues.

Allison had started to have some real difficulty walking and was starting to fall. Each time she fell I was called, sometimes several times a day. I asked that I only be called if Allison had been hurt. I was told that they were required to call me whether she had been injured or not. I realized that the staff was just doing their job but it was depressing to get an hour by hour recap of Allison’s demise. We agreed on one daily summary call if no injury had occurred. Allison was given a walker but it did not help and perhaps made matters worse. Huntington’s patients do not do well with walkers. Allison needed to accept her mobility problems and learn to compensate by seeking help when she needed it. I was the only person who she would usually let help her. I purchased a transport chair to keep in the car for our daytrips.

Despite her balance and mobility problems, Allison was in good spirits. She attended most of the events at the home and was even going to the morning gathering of HD patients which she had always slept through in the past.

In the spring of 2010 a new baseball team, the Pittsfield Colonials, set up shop at Wahconah Park. Allison and I went to many of their games and she hooted and cheered as play dictated. I was really surprised how much she enjoyed these games.

By June the clinical trial visits had been spread out to about every three months. Jennifer had left to attend medical school and was replaced by Caleb, another aspiring doctor. Caleb was a good looking recent Cornell graduate who Allison really liked. She had another MRI which was delayed when the MRI machine malfunctioned in mid stream. Allison patiently waited for a tech to come and fix it. We skipped Sonic and the Clam Box and stopped at Boston Market on the way home. I was saddened when Allison had difficulty swallowing her food.

July 2010 brought our annual visit from Midge. We again picked her up at Westchester County Airport. This visit was devoted to shopping. Midge decided that she wanted to buy early birthday presents for Allison and we spent time at Walmart and the mall. For some reason this visit was only for three days and before we knew it Midge was gone.

In August we celebrated Allison’s 28’th birthday with a small gathering at home. Rob and Fred came up and we devoured a Carvel ice cream cake. Allison would now be beginning her fifth year at the nursing home. She was still playing Virtual Families.

In September we went to the fair where Allison ate some clam cakes in the Rhode Island building. Allison passed on the cream puff. The zoo in Hoosick falls had closed and we found another one in Springfield where Allison really enjoyed visiting the animals.

Another Fall season was upon us and we decided to take a journey to Rhode Island. We visited with Allison’s friend Marissa whom she had not seen since the party in 2007. Marissa had always faithfully remembered Allison on her birthday and Christmas with a thoughtful gift. Allison was so happy to see her.

Thanksgiving and Christmas brought our usual celebrations. We dined with Arlo Guthrie and his family at his church in Housatonic. Arlo’s dad Woody Guthrie is perhaps the most famous victim of HD.  Another year had passed. It had been a pretty good one considering our circumstances.