Chapter Seventeen: Boston Bound Again
In March, we received a letter from Drs. Rosas and Hersch seeking donations, no matter how small, to help keep their Huntington’s clinic open. Their funding had just been cut by 80%. They do not charge any HD patient who cannot pay. The trial that Allison was in for four years had just been stopped and although new solutions appeared to be on the horizon, funding had dried up. Unfortunately the people who cared enough to help were usually from HD families who had often been financially devastated by the disease. A process known as gene silencing might halt Huntington’s Disease in its tracks by shutting off the gene mutation that causes it. Animal trials had been promising and offered hope for a cure. Human trials were starting in Europe and Canada this year, but not in the U.S. due to bureaucratic red tape.
I was hoping against hope that Dr. Rosas would still be running the clinic by our June appointment and that both Allison and I would be up to making the trip to Boston. Until then our battle against Huntington’s would go on. The brutal winter subsided and it was now hot tub and Miata time. Apparently it was also time to send a new nurse and add an occupational therapist. The nurse seemed nice enough but had absolutely no clue about HD. I did my best to give her a crash course but she just couldn’t grasp Allison’s illness. When she asked me if Allison was in special education in school I knew that she never would get it. I started to wonder if her coming to take Allison’s blood pressure and temperature was worth anybody’s time. We had our own thermometer and blood pressure cuff.
The occupational therapist was a very sweet lady but seemed to make Allison quite nervous. When Allison gets anxious she cries. This happened each time the OT visited. On what would turn out to be her next to last visit, the OT made an astonishing proclamation. She knew what was wrong with Allison: “early menopause.” When I told her that I disagreed she asked me what I thought was wrong with her. My answer was very simple: “Huntington’s.” This lady just did not get it no matter how much I explained HD to her. On her next visit, much to Yvette’s and my astonishment, Allison fired her.
Going shopping with Allison was an adventure. People tended to stare as I pushed Allison with one hand and pulled a shopping cart with the other. Usually I was able to ignore them but when the glares became particularly offensive I just couldn’t hold back. I usually explained that Allison had Huntington’s Disease and asked them if they were familiar with it. The responses were often a sad commentary on the human race. One time in Walmart when I gave the HD spiel to a sixtyish lady who couldn’t stop looking at us, she responded “Oh that’s nothing my mother just had a stroke.” Somehow I felt that a 32 year old HD victim is more tragic than a 90 year old stroke victim.
Anxiety and obsessive compulsion come with Huntington's. Allison is no exception. One of Allison’s first goals after leaving the nursing home was to start using the bathroom again. She successfully met this goal and then some. Allison had become so obsessed with this issue that she was asking to go to the bathroom upwards of thirty times a day. Most times she didn’t really have to go, she was just worried that she might have to. Wheeling her to the bathroom so often became exhausting. I needed to come up with a strategy to modify her compulsive thoughts. Simply saying no usually caused a temper tantrum. I came up with a point system which allotted her one point for every two hour gap between bathroom visits. Fifty points earned her a one hour massage at Deb’s New Lebanon spa. By mid May Allison was working on her second massage and visiting the bathroom just five times a day. Sometimes you have to think out of the box.
Unfortunately dementia is also part of Huntington’s Disease. One day Allison asked me “what time is it?” ten times in succession. I tried to answer her each time but the time didn’t change much. She still had the memory of an elephant and could recite the birthday of just about everyone she knew, yet could not remember the time of day. Much like a baby who needed to be changed, Allison would often cry when she wanted something. She sometimes cried when she didn’t need anything. Conversely she could also start laughing for no apparent reason .When she was frustrated and could not get her thoughts out she sometimes screamed. She would often change her mind several times within the same thought process. She was often either too hot or too cold within the same minute. Because she had such a brilliant mind and pleasant personality this vacillation was not easy to take. I just tried to remember that she had HD and couldn’t help herself.
In May I had to have a wider door installed on the downstairs bathroom as Allison’s wheelchair did not fit , and her walking was often too shaky to safely make the walk through the doorway. Fortunately I found a local contractor who managed to fit a 32 inch door into a 24 inch space. It seemed like an impossible task but he did it. He also put us at the front of his work queue when he heard of Allison’s plight. Allison also had trouble keeping down her formula and I had to reduce her tube flow rate. I decided to start her feeding at 4:00 a.m. while she slept. The early start worked and she could still have her prescribed daily amount of formula without getting sick. Most HD patients lose about half their body weight. Allison now weighed more than before her diagnosis. I was pleased that the revamped feeding schedule solved the problem. The nurse had suggested pepto bismol. She didn’t proffer how to give it to a patient who can take nothing by mouth.
On each visit the nurse kept telling me that there was nothing she could do for Allison because she knew nothing about Huntington’s. Yvette was also unfamiliar with HD but got on her computer and did some googling. The nurse could have done the same. She pretty much said that she didn’t want to be here, so I relieved her of the burden. Rob, the physical therapist, would now manage Allison’s case for the VNA.
As our appointment with Dr. Rosas grew nearer, I started to put together a history of the two years that had passed since we had last seen her. I had so many questions and ideas that I had to prioritize them . Yvette asked if I would like her to come with us. I thought about it and decided that it might be a good idea. Allison gets very frustrated when people can’t understand her and sometimes acts out. This could be a distraction while driving, especially in Boston.
Allison enthusiastically awakened at 7:00 on appointment day. Since she usually sleeps until 11:00 I thought she might be cranky. She cheerfully let me get her ready and we were on our way by 8:00. The reunion at Mass General was touching. In the waiting room a lady ran up to Allison and gave her a loving hug. She was exclaiming, “Look at you. You look great.” It was Sue Imbriglio, Dr. Rosas’ right hand lady. She was closely followed by Dr. Rosas who gave her an equally heartfelt greeting. We talked about Allison’s anxiety and other issues. Dr. Rosas made one med adjustment. As the session was nearing its end, Allison told Dr. Rosas and Sue that she wanted to donate her brain to Huntington’s research. The room went silent. Dr. Rosas thanked Allison and kindly told her that she was doing so well that it would be a long time before that happened. We left with the appropriate paperwork for such a donation. The drive home was a happy one knowing that we had returned to a place where people cared about Allison.