CAREGIVING & MUSIC: I wish I could reach out and give a virtual hug to everyone who is supporting us during our time with Huntington’s Disease. We had a very very successful benefit concert in Amherst thanks to the organizational efforts of Mike and Chris Orlen. Volunteers and donors from all over the Pioneer Valley pitched in to help. I suspect that quite a few didn’t know me, but they heard our story and wanted to help. I am humbled. They also wanted to hear some fantastic music, and they did!
The benefit concert (and web broadcast on ConcertWindow) raised about $1500. Most of it will help fund the Third Annual Huntington’s Disease Symposium at the UConn Health Center in Farmington this September. I have designed cards for the event in the past, but this year a major pharmaceutical donor had to cut back their support. It is one of the few times that HD families and experts can be together. There will be speakers on the latest research, nutrition, caregiving and panel discussions. Maybe this year, now that Kathy is getting more help, I can actually attend it. When this event started Kathy would not go. In those days her social anxiety tore her apart, and she was afraid to be alone, too. Now, I think she enjoys the company of visitors.
I was overwhelmed by all the love and concern everyone was directing toward me. I am a certified introvert. My way of deflecting attention is self-deprecating humor. I am happy when people are laughing at me. So, this was different. Many people came up to me and talked about their stories too. Maybe they took care of someone with Cancer or Alzheimer’s but the plot lines were similar. On stage I got a chance to tell a little about HD and Kathy and her family, but I got tongue-tied up on stage. I think I left out that Woody Guthrie had Huntington’s. And “13” on House had it. I had a few notes but they were in the car. I don’t know if I told them that things are in an OK place now or if I depressed the crap out of them.
Mid-way through my musical set, a gentleman stood up and got my attention. He wanted to tell the audience that his wife had Huntington’s but she was in remission. Her doctors were cutting back on her meds too. And 85% of her symptoms were gone. I was speechless. On that slip of paper on my car seat was the phrase “Expect no miracles with HD.” He did email me their treatment regimen, which you can read here. It is important to know that every Huntington’s patient is different, and many different ways to cope with it. I do believe there are ways to slow the progress of the brain damage. Research using the supplements Creatine and CoQ10 seems promising. And anything that keeps the brain working keeps it alive: exercise, hobbies, friends, beliefs etc. While the gene count number helps determine when in life the symptoms will show up, environment and diet play a role.
The event itself was a party, with raffle prizes and sing-alongs and some wonderful performances. Bruce King sang my song, Marriage of Convenience. Before this event I was unfamiliar with Greg Alexander’s music. He is an excellent performer and guitarist with great stage presence. Mike and Chris Orlen sang my request, A Dog Will Have His Day. Nerissa and Katrina Nields were on after me. My favorite moment was when they pushed the sound system aside and let their harmonies fill the room. The audience on ConcertWindow loved it too. They told stories about meeting me at open mics and coming to our house to work on their CD graphics. Tracy Grammer and Jim Henry finished off the evening. Jim mentioned the time we competed against one another in the Boston Acoustic Underground finals at Berklee. One reviewer said that Jim “looked like John Prine” but I “sounded like John Prine.” We both lost, by the way. Jim’s version of Richard Thompson’s 1952 Vincent Black Lightning amazed me. Tracy’s Gentle Arms of Eden was a perfect ending for a wonderful night.
I can’t thank all the performers, volunteers, listeners, on-line watchers, gift and prize-givers, health aides, new friends and old friends who made this a happy day under crappy circumstances. Special thanks go to TIA Architects. They donated the use of the Nacul Center. Thanks to all the musicians that were in the audience. (I know how much you make as musicians). Charley Bennett at The Hampden Wilbraham Times got the word out to my neighbors. Hampden is a small town and we keep to ourselves. Many had no idea what was going on in the green house on Main Street.
Well back to doing what I do. Thanks again.