The UConn HD Symposium and other updates

2016-10-04-19-00-51The first week of October was fairly crazy. In the days following my music trip to Plymouth besides doing some design work and trying to deal with house and yard stuff I was pretty busy. 

Hospice Memorial Service. On Tuesday, October 4, Mercy Hospice held a memorial service for all the patients and that had passed on during the previous year. It was a very nice evening held at a conference facility at Mercy Medical Center. We were asked to bring a small photograph of our loved one and it was placed on a table in the front of the room. Although it was at a Catholic hospital it was non-denominational. Different nurses and volunteers took turns  reading poems, prayers, and quotes. Another played guitar and sang. Gary, the chaplain read the names of all the patients that had passed away for each month. It was really very nice. I could see Kathy’s photo in a frame next to the other people. After the service, there was a short reception and I had a chance to thank Gary for all the hospice did. When I got home I watched the vice-presidential debate. That brought me back to reality.


Another open mic. The following Wednesday night Charlie and I were supposed to go to the open mic at Luthier’s Co-op. I arrived at Charlie’s house in Hampden but he had decided not to go that night. He didn’t feel well. I decided to go anyway since I was geared up to go. I did my political song “Wrong Side of the Tracks” and “I Wish you Were Dead.”  These videos look different because I am trying to learn a new video program called Adobe Premiere Pro. I used that on “I Wish You Were Dead” but they were both shot at the same time.

 


uconn-hd_family-dayThe UConn Huntington’s Disease Symposium. On October 8th I participated in the family Huntington’s symposium at UConn Health Center. This is an annual event for families, caregivers and those with the disease, too. Bonnie had asked me if I would perform The Huntington’s Waltz to wrap up the day. 

Eventually, videos of the different presentations will be online but it was really a wonderful event. There were talks on coping with behavior problems, planning financially for long-term care, the latest medical research and a presentation about the Maher family’s fundraising efforts. All of my recent experience has been with caregivers so I was interested to see if it made any difference if actual Huntington’s patients were in the room too. Sometimes it feels easier to let it all out when it is just caregivers. But this was fine. 

Usual Disclaimer Here: I’m not a doctor. These are just my interpretations of what I heard.

Treatments. I learned a lot but it also confirmed even more. Within 5 to 10 years an effective treatment for Huntington’s could be available. If it tests well, IONIS HTTrx will essentially stop the mutant Huntingtin protein from taking over and causing brain death. The treatment will be through a lumbar puncture every 6 months or so. It will be similar to getting an epidural. We need to think of it as a treatment similar to those used for AIDS and HIV patients extending lifespans. By stopping or slowing the progress of the disease it will improve quality of life. It won’t be a cure. The HD patient could still pass the defective gene on to their children. A “cure” may be ethically difficult because it may involve editing genes or selecting which fertilized embryos survive or not. 

Enroll-HD. Bonnie Hennig discussed Enroll-HD, a worldwide observational study for Huntington’s disease families. This would include individuals who know they are gene positive, whether they have started showing symptoms or not. 2) People who are at risk of developing the disease (but have not been tested).  3) Individuals who have a family history of HD but have tested negative. 4) Spouses/partners (not blood-related) of family members with HD. This last category would apply to me. I could take part as a control subject. And all of Kathy’s family could participate. Enroll-HD is being administered at many centers throughout the world.

The Maher Family Journey is a benefit in its’ 12th year that raises funds for HD research at UConn. Melinda Maher’s dad, Fred was diagnosed with Huntington’s when she was six. When she was an eighth-grader she was upset that there were benefits for cancer and other diseases but nothing for HD. What started out as a simple school project and coming out as being at risk, turned into a series of benefit dinners that have raised over $114,000 for Huntington’s causes. I went to the last dinner in April and it was great to see how successful a benefit can be. It has the support of a local fire department and many businesses in the area around Sherman CT where the Maher’s live. People also donate gift baskets that get raffled off. These are a few photos I shot last April. If you live near Western Connecticut you should go. It is a fun night. Maher website. This year’s dinner is April 29.


The Huntington’s Waltz. I performed my song and it was very emotional for me. They set up the microphone and stand at a certain spot in front. They had a Powerpoint slide with my name projected on the screen behind me. But because of my height, it was hitting me in the eye. I’m actually used to that with stage lighting. So I just pretended I could see everybody. Most of the song went fine until I got to the final chorus. I noticed one member of my caregivers’ support group wiping her nose. I didn’t really think much of it until I noticed other people I didn’t know crying. I lost it on the final line of the chorus. I said, “Let me try that again.” But I still couldn’t get through the last chorus without breaking up a little. 


Molly Tuttle. That evening I was drained but I still managed to go to a wonderful concert at Unity House in Springfield. Molly Tuttle is an incredible flat picker and songwriter with a beautiful voice. I didn’t want to finish this post without mentioning how great she is. Check her out, or Google The Tuttle’s if you ever get a chance. This is one of her Instrumentals.   Here is an original while she was still at Berklee:

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