Chapter Eight: Back to Boston
Things were now very quiet at the home. Allison could practically not sneeze without a staff member reporting it to me. Allison was now spending most of her spare time playing Virtual Families. She was starting to develop some difficulty swallowing and was sometimes choking a bit on her food. I had often brought her junk food which she loved and I now had to be careful about what I brought her. Sometimes I got admonished by the staff for bringing candy or cookies that they did not approve of. This would be a new issue to address with Dr. Cha.
Allison asked if she could have a hamster. She had one as a child and wanted a warm living creature to care for. She still had her guppies but these were not warm blooded creatures that she could nurture. We asked the head nurse and to my surprise, she said a hamster would be okay. We went to PetSmart and picked out the fanciest hamster cage that we could find. We also bought a hamster to go with the cage. The nursing home had a new resident.
I adopted a new dog named Maggie. Maggie was a one year old puggle and was as sweet as could be. Bronson and Bosley loved her and she loved them back. Maggie and I started going on three mile walks in the morning which kept us both fit. As did Pawchy, Maggie quickly became popular at the home. Most importantly, Allison loved Maggie.
In May we made the trek to Boston. With her frequent trips to Joe’s Diner, Allison had developed a taste for fried clams. These were actually a good food for her as they were soft and fairly easy to swallow. I decided to show Allison some good fried clams. We set out for the Clam Box in Ipswich Mass before her afternoon appointment. I guess Massachusetts cops have a thing about New York drivers. About a mile from the Clam Box I was stopped for going about 5 mph over the limit. I explained that we had an appointment at MGH and had to get to the Clam Box first. He didn’t give me a ticket. The clams lived up to their reputation and a new tradition was started.
Having gone to college and law school in Boston I thought I knew the city streets. Perhaps they had just gotten a little busier and tougher to navigate in the last thirty years. We barely made it to our appointment on time. We saw Dr. Cha who examined Allison and adjusted her meds. We discussed her swallowing issues. He was still as nice as we had remembered him.
The next month we received a letter from Dr. Cha informing us that he was leaving Mass General to work for a pharmaceutical company in Pennsylvania. We were given a new appointment with a Dr. Rosas in December.
Berkshire County is a great place to cruise around and enjoy the great outdoors. Allison once mentioned that if she weren’t sick she would get a motorcycle and explore the back roads of western Massachusetts. I went out and bought a Mazda Miata MX-5 for us to do just that. It was a 2002 LE edition with every option offered. It was in perfect condition and had been pampered by its only owners. Allison was so excited and we had a ball with it that summer. We not only explored Berkshire County but also discovered Bennington County in Vermont, and Washington, Columbia, and Saratoga Counties in New York.
The Summer of 2008 rolled in and so did Midge. Midge’s budget airport in Newburgh no longer offered direct service to Georgia so she had to find another cheap airport in New York. Actually I had to find it. Westchester County Airport fit the bill and was about a half hour further from us than Newburgh. Allison and I headed down to Westchester County, just outside New York City, and found the airport. Now we needed to find Midge. The airport was small enough and easy to navigate. Like at other airports after 9/11, the passengers were segregated from other folks after they went through security. We watched Midge deplane and promptly sit down with her back to us in the secure area. The airport was a beehive of activity and I could not find anyone with the proper security credentials to go retrieve Midge. Eventually she turned around, saw us waving furiously through the big window, and came over to our side.
I had a lot planned to do with Midge. We went to Albany and rode on the duck boats. Midge momentarily lost Allison while I parked the car. It seemed that Midge had gone into a bathroom and couldn’t find Allison when she came out. I found the missing Allison in the same spot where Midge had left her. We rode the duck boat/buses, made some funny noises with the duck beak whistles that came with the tour, then headed to my house.
That night, we went to Tanglewood for a concert featuring Tony Bennett and his daughter. I asked Midge if she had ever dated Mr. Bennett as they were of a similar age. Midge said no, and that she did not like Tony Bennett.
Midge is the only person that I know who has had more heart attacks than Fred Sanford. In the parking lot at Tanglewood Midge announced that she was having a heart attack and I offered to notify the proper authorities. Midge chose to watch the show with the singer that she didn’t like instead of being treated for her attack..
After a week of doing fun things with Midge it was time for her to go home. We drove her back to the airport, and off she went. It was a good visit. She and Allison had few squabbles and we had a good time. Midge was now 84, and I wondered how many more trips there would be.
Along came August 2008. It would be hard to top Allison’s party of the previous summer. One day I was driving by the lake on route 7 in Lanesboro and I saw a “party boats for rent” sign. I thought to myself, “that would work.” We spent three hours on Lake Pontoosuc celebrating Allison’s 26th birthday with a few returnees from last year.
Summer came to an end as it always does with nothing much bad happening. Allison was starting her third year at the nursing home and still playing Virtual Families. She had seemed to develop a whole new attitude and stayed away from any nefarious activities. She was much more personable and was becoming known again as a sweet young lady. She enjoyed patronizing the home’s gift shop and filled her room with various knick knacks and contraband candy that she purchased there.
Allison and I again went to the fair in Springfield and we both ate a giant cream puff. Allison asked me to take a picture of her wearing half the cream puff on her face. It was kind of funny, but was also a sad harbinger of things to come.
The days started getting shorter and life was slowing down as cooler weather moved in. The house came with a pellet stove which had served me well during my first two winters in upstate New York. It was a simple pleasure, push a button and the stove fired up and heated the entire house.
When the first cold night came, life suddenly got even more complicated. Instead of producing a cozy fire, acrid smoke belched out and filled the living room. A thorough cleaning and several calls to the manufacturer did not yield a remedy. I decided to get a new stove. I drove to Troy, picked out a new pellet stove, and decided to save a few bucks by taking it home and installing it myself. A cold driving rain greeted me as I loaded the new unit into the RAV4 and headed home. Instead of waiting for better weather I decided to push the 400 pound behemoth through the monsoon and into the house. Two hours later the task was complete. Still unwilling to wait, I spent the next hour pushing the old unit into the backyard shed. Another hour of connecting pipes and yelling yielded a finely operating pellet stove.
The next day I was coughing and wheezing and headed to CVS to find the remedy. No amount of cough medicine or decongestants helped. By day two I was so sick that instead of visiting Allison I drove myself to Berkshire Medical Center. It was quickly determined that I had pneumonia and had to be admitted. I explained that I had a dog and two cats at home who needed me and could not stay. They told me to find someone to feed the pets. Not knowing anyone in Stephentown whom I could ask to help, I called Fred in Rhode Island. Fred drove up immediately and righted the ship. He brought Allison to the hospital to visit and fed the pets for three days until I was released. Nobody could have a better friend.
I recovered and settled back into my normal routine, visiting Allison and praying for the best. Except for a few choking episodes Allison was experiencing perhaps her best times at the home. I hosted a Thanksgiving dinner for Allison, Rob, and Fred and his family.
December 2008 brought about our visit with Dr. Rosas. Allison and I ate at the Clam Box and then headed over to Mass General. Dr. Rosas was a nice lady who spent the majority of her time doing HD research. She saw patients two days a month. Along with her husband Dr. Steven Hersch, she coordinated the clinical trials at MGH. A speech therapist gave Allison a swallow test that involved eating cookies and crackers of varying consistency. Allison threw up. We talked about starting Allison on a soft diet and using thickeners for her drinks.
We also talked about a clinical trial called Crest-E that Dr. Rosas would be conducting soon. Crest-E had already gone through Phases I and II and showed promise. The trial would determine whether medical grade creatine was effective in slowing the progression of Huntington’s. Dr. Rosas said that Allison could be in it.
Dr. Rosas also asked if Allison would like to take part in a study where she examined the changes in the brain that occur over the course of Huntington’s. Every six months Allison would have an MRI taken of her brain with MGH’s super duper MRI machine. The images would be studied by Dr. Rosas and HD researchers around the world. Of course she said yes!
We left Boston so happy. Dr. Rosas was so nice and she knew more about HD than anyone we had ever met. Allison was finally going to be able to aid in HD research which had been a dream of hers for so long.
The holiday season was highlighted by a trip to Boston to see the Rockettes who were on a national tour. Christmas Day was peaceful with Rob visiting and Maggie, Bosley, and Bronson enjoying their first holiday in their new home.
The winter of 2009 passed with no problems except for Allison’s swallowing difficulties. Dinner time was a messy time and I bought Allison a couple of designer bibs to help save her clothes. She also resisted giving up her junk food which was sometimes an impetus for conflict with the staff.
Spring of 2009 found us travelling to Boston for the preliminary clinical trial appointments. Dr. Rosas spent most of her working time in her research facility which was located in the old Charlestown shipyard just north of downtown Boston. She was aptly assisted by Sue Imbriglio who is a retired physical therapist who had worked with HD patients and Jimmy Pollard at Lowell Health Center.
We arrived at the research center and announced our presence to the security guard at the desk in the main lobby. A young intern named Jennifer came to greet us and take us upstairs to see Sue and Dr. Rosas. Jennifer planned to go to medical school and was gaining experience by helping out with the trials. Allison bonded with her immediately and enjoyed teasing her.
Allison went off to take a battery of cognitive and psychological tests. While she was doing this, I sat down with Dr. Rosas and talked about her HD research. Allison then had a physical exam and blood work. We were fed lunch and Allison then went for her first MRI in the super duper machine.
Jennifer escorted us out to the car and our first trial visit was complete.
When we got back to the home we explained the trial and our day in Boston to the Director of Nursing. It was an exciting time because Allison would be their first resident to participate in a clinical trial.
We had another trip to Boston in June to further prepare for the trial. Sonic was a staple for us in Georgia. We ate there at least twice a week and missed it after we moved back north. I had read that the first Sonic in New England had opened in Peabody, just north of Boston. We decided to skip the Clam Box and ate at Sonic instead. Allison had a few more tests and we left awaiting our next visit when Allison would probably receive the trial drug.
When we got back we excitedly shared our day with the folks at the home, including the Director of Nursing. Allison was a pioneer and my hero!
In July of 2009 Allison had her regular appointment with Dr. Rosas at the main campus of MGH. Huntington’s Disease is called a movement disorder because most of its victims suffer from extreme movements of their torso and limbs. Allison didn’t have a lot of these movements but was fidgety. Juvenile victims, like Allison, are more rigid and often suffer seizures. No medication had yet been approved in the United States to specifically treat HD. This was about to change.The FDA was about to approve the drug tetrabenazine (TBZ) to specifically treat HD movements. They would rebrand it as Xenazine in the states, and the price would increase about one thousand percent. TBZ was available in many countries, including Canada, and many U.S. folks did get it from Canadian pharmacies. Recently, drug enforcement agents had started to intercept deliveries to the United States.
We talked about starting Allison on Xenazine, and Dr. Rosas started the paperwork. She told us that the trial would start in September, and off we went. When we got back to the home, we told the Director of Nursing about the Xenazine, and the trial starting in September. She never gave any indication that the trial would present a problem.