Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old. Because Allison never knew her mother not being ill, HD came kind of naturally to her.
Life went on and we put HD on the back burner for a while. Allison did very well in school, graduating at the top of her class in 2000. There were some disturbing signs though. Allison started driving at age 16 and by age 21 had experienced about a dozen accidents. A decline in her athletic prowess became obvious as I watched her play soccer. In her senior year of high school Allison became very depressed requiring hospitalization and ongoing counseling. Still, we kept HD on the back burner where it belonged.
In the Fall of 2000 Allison went off to Wheaton College on an academic scholarship. Her first year was great with Allison making the Dean's List and playing on the girl's ice hockey team. Her second year was a different story. Just before Thanksgiving, Allison asked to come home as “the bottom had fallen out of her life.” She took the rest of the academic year off and worked at a couple of jobs. That fall she enrolled at The University of Rhode Island and commuted each day from home. Things went well except for a couple more minor accidents, but cars can always be fixed. The following year Allison decided to double up her course load so that she could make up for her lost year and graduate on time. She took 61 credits that year and in May 2004 graduated magna cum laude with a degree in sociology.
Although that spring was a time to celebrate it was also a time to grieve. In February 2004, we both knew that HD had arrived. It was no longer safe for Allison to drive, but that was what dads are for. She was referred to ‘Rhode Island's top neurologist’ by her G.P. This was simply a formality. She was tested immediately (no counseling, no waiting). The doctor gave me the results over the phone: CAG 60. We were referred to Massachusetts General Hospital.
Allison's grandparents had retired to Georgia in the mid 90's. In 2001, I was diagnosed with myasthenia gravis and spent the next few years winding down my business interests. In the Fall of 2004, we decided to move to Georgia. Allison flew down and found us a house to buy. I stayed in R.I. dissolving real estate. In February of 2005, Allison and I moved to Georgia, but not for long. Things went poorly and Allison was hospitalized 13 times in 14 months. Something had to give. In June 2006 I sold the house, bought one up north and Allison moved into an HD nursing home in Massachusetts. This story is supposed to be about a clinical trial but I felt you had to get to know Allison first!
In Georgia Allison went to the COE at Emory University. She asked about participating in clinical trials but was always told she was not eligible for any at that time. After we moved north, she started seeing a neurologist in Albany. He asked Allison if she wanted to participate in trials. She gleefully said YES and waited excitedly for more information which never came. After a couple of months, I called the trial coordinator and was told that Allison was too young. I explained how important it was to her and she told me that perhaps the doctor running the trial would make an exception. She never called me back. At this point Allison was heartbroken. So many people are needed for trials, yet so many are either unwilling or unable to participate. I remember Allison telling me at that time that she knew the trials would not help her, but she wanted to help cure HD anyways!
When the doctor announced that he was leaving Albany Med, we decided to go back to Dr. Cha at Massachusetts General. At Allison's first appointment, Dr. Cha asked her if she was willing to be in a trial. We explained the past disappointments. The next thing we knew, a trial team was in the office taking blood from both of us and explaining the upcoming Crest-E trial. An appointment was made to see Dr. Rosas at the Charlestown research facility in a couple of weeks.
When we arrived at the Charleston campus and met with Dr. Rosas and her team, we could not have been more impressed. Dr. Rosas sat and talked with me while Allison underwent a battery of tests. I've never met a doctor more willing to give of her time and not intimidated by my knowledge of HD. After our four hour initial meeting, Allison and I were off to Sonic which had recently opened its first outlet in the northeast near Boston. Allison was excited as Sonic had been a staple during our time down south.
About a month after our first visit, we went back to Boston to pick up Allison's first supply of the trial drug. It was now official, Allison was a full fledged member of an HD trial! But unfortunately, it was not quite that easy. Despite having kept key members at her nursing home informed about Allison's participation, we were now told by the Nursing Director that she could not participate. The only reason given was “we just don't do trials here.” Needless to say, I did not take this lying down. After all, it was Allison's right to take part in this trial. Her heart would not be broken again! Things got very heated over the next few days as I reached out to about everyone I knew connected to HD. Finally I was told that I could deal with their lawyer. The lawyer, who was also a nurse, and I spoke for hours and she and I could not have agreed more with each other. The next day I brought the trial meds over to the home. Thankfully, the nursing director is no longer employed there.
We looked forward to our continuing visits to MGH. At first they were monthly but have now been spread out to every four months. Allison used to enjoy teasing coordinator Jennifer by initially refusing to sign the consent forms and watching the crestfallen look on her face. Jennifer has left for medical school and thankfully this practice has not continued with Jessie the new coordinator. We both also participate in other short studies while we are there. Anything to help the cause! Our visits to Sonic have expanded into a quest to find the best fried clams in New England. So far, the Clam Box in Ipswich is winning with Woodman's in Essex the runner up.
To anyone who is on the fence about being in a trial- just do it! At least two times the extensive blood work they do on each visit has uncovered hidden medical issues which would have gone untreated for quite a while. The MRI's are valuable. Just having a free extensive examination every couple of months is worth the price of admission, which by way is free as they pay for parking and give out gas cards! They also offer free lunches for us, but there are too many nearby restaurants to explore. For those who say they can take the “trial drug” on their own and be assured that they don't get a placebo, I offer you this: you don't even know if the drug is effective. Whether you get the real thing or the placebo, we'll never learn the benefits without the courageous folks who participate in these trials. It's also a great excuse to take a trip (ours is 2.5 hours each way) and create some lasting memories with a loved one. Don't forget your camera!
Thank you Allison for participating in the Phase III CREST-E (creatine) trial and thank you Howard for writing about it. It is through your efforts and those of the other HD family members who are volunteering for trials that we will get new treatments. - Marsha