Issue 93, June 2006
The following is based on an article that appeared on the HD Lighthouse website
Will Brownís Battle with Huntingtonís Disease
I was blindsided by HD in 2003. I had no idea that HD was in our family until I found out my brother had it. We had a falling out over our motherís care and hadnít spoken in years. We reconciled before she died in 2004 of old age. The HD had to have come from my father, who died at age 57 without any physical symptoms. He had been an alcoholic with a mean disposition, which might have been from HD.
When I found out about my brother and researched HD, I knew I had to be tested. Iím one of those people who face things head on, so I had to know. Of course, I was pretty certain it would come back negative. I was 57 when I tested, with no symptoms that my wife or I could see. After I completed the testing protocol at UNC Hospitals in Chapel Hill, NC, I was ready for the results so I could get on with my life.
When the neurologist and genetic counsellor walked into the room, I knew what the result was by the looks on their faces. I turned to my wife Debbie and said, ďAw, Poop.Ē There was good news with the bad. My CAG count was 40, at the low end of the HD range. I had done my HD research, so I knew the significance of that number. Another piece of good news was that whatever happens to me, HD ends on my side of the family. We have no children.
I considered the possibility of going home from the hospital and having a couple of strong drinks to drown the bad news. Instead, I went back to my office and got on the Internet to start ordering the supplements that I had decided I would start taking in the event I tested positive. Doing something made me feel better. I knew people were fighting the disease with exercise, supplements and spirituality. As a retired Marine and Vietnam Veteran with 30 years of active and reserve service, Iíve always been ready for a good fight.
As I thought things through, I kept seeing more good news. This would give me an opportunity to do something useful for humankind. I looked at clinical trials and research projects that I could volunteer for. My brother and I gave blood samples for the MAPS study, which is looking at siblings with HD. I found out about the PREDICT-HD study for asymptomatic, gene positive folks, and volunteered for that. This year will be my 4th visit to the Center of Excellence at Emory in Atlanta for that. Iíll be the first to volunteer for gene silencing therapy or any other exotic treatment. That will give me something interesting and useful to do in retirement.
My brotherís CAG is 43 and he has been symptomatic for a number of years. What has kept me symptom free nearing age 60? The difference in CAG counts is part of it, but I think the big difference is that Iíve been a distance runner for virtually my entire adult life. I began in 1967 to lose weight to join the Marines, and never stopped. My theory is that Iíve been giving my brain a daily dose of Brain Derived Neurotropic Factor (BDNF) that has been growing enough new cells to offset ones being killed by the HD gene.
I also believe my supplements are making a difference. About 6 months after I started taking them, all of a sudden I noticed that my driving seemed better. I felt more comfortable driving right next to barriers. The sensation was that my vision was better, but trips to the eye doctor confirm that isnít the case. My contact lens prescription remains the same. My whole attitude towards life is calmer, and my memory seems better. I used to have to write down a 6 item shopping list and detailed to do lists at work. Iím an IT Manager in a busy state agency and have no problems coping with the demands of my job.
Shortly after testing positive, I bought a balance board and began doing daily workouts with that to try to prevent any HD related balance problems. Iím much better at that now, and I believe thatís also due to the supplements. I also do the heel to toe walk for balance exercise thatís part of the UHDRS test. Another exercise I do for balance is one I invented. When riding alone in an elevator at work, I put one foot in front of the other and do what I call the HD Elevator Surf. If you try it, youíll understand why I named it that.
Willís Supplement Regimen
Wild Blueberry Concentrate - one tablespoon (equivalent of a cup of berries)
Pomegranate Concentrate Ė one tablespoon (equivalent of one fruit)
Fish Oil capsules - 3 a day with meals - 1,800mg EPA
Vit E - 400 IU - needed to get the full benefit of the EPA
Choline capsule - 350mg
Ginkgo Phytosome - 80mg - supposed to be better than Ginkgo Biloba as a neuroprotector
8 oz Soy Milk
1.2 oz Dark Chocolate
Vit C - 1,000mg
Glucosamine sulfate - 1,000mg
Willís Medications - NONE