Running from The Devil

Running From The Devil

Background

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 mother's care and hadn't 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. I'm 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 I or my wife 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 counselor walked into the room, I knew what the result was by the looks on their faces. I turned to my wife Debbie and said, “Aw, Poop.” 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, I’ve 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. I’ll 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 brother’s 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 I’ve 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 I’ve 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 isn’t 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. I’m 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. I’m much better at that now, and I believe that’s also due to the supplements. I also do the heel to toe walk for balance exercise that’s 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, you’ll understand why I named it that.

Will’s Supplement Regimen

HD Specific

• Creatine 10g
• Wild Blueberry Concentrate - equivalent of a cup of berries - one tablespoon
• Pomegranate Concentrate – equivalent of one fruit – one tablespoon
• 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

General Purpose

• Multivitamin
• Vit C - 1,000mg
• Glucosamine sulfate - 1,000mg

Will’s Medications - NONE

Running

I ran my first marathon in 1976. I was in the Marine Corps Reserve at the time and they were sponsoring the first annual Marine Corps Reserve Marathon in Washington. It started and finished at the Marine Corps War Memorial, better known as the Iwo Jima statue. My father was a Marine in World War II and was wounded on Iwo Jima. A distant cousin of my mother, Pfc. Rene’ Gagnon, was one of the Marines who raised the flag and is depicted on the statue.

Needless to say, finishing my first marathon in the shadows of that famous statue was an emotional event. I talked 3 friends from my reserve unit into running the second race with me. The third year the race had grown to the point where the regular Marine Corps took it over and it became the Marine Corps Marathon. I went back for that race, and I discovered it was in my blood. Little did I know that something deadly was also in my blood that running might keep at bay.

Halfway through the Massanutten Mountain 100 Mile Endurance Run in Virginia, where I inexplicably quit at 87 miles. A little bit of humility is good for everyone. I’ll go back to take care of that someday. The mountains aren’t going to win, nor is HD.

The Washington Post did some research the year of the 10th anniversary race and found out that only a handful of people had finished all 9 previous ones. I was one of them. By the 20th anniversary race the group was down to 5 people. The Marathon staff nicknamed us the “Ground Pounders”, a play on the Marine slang for an infantryman. We all knew each other’s names and several had met, but we didn’t all meet at the same time until the 25th anniversary race in 2000.

We’re now involved in a different kind of endurance race. The one who finishes last will win. One of us will be the last one standing. I’ve never won anything in my running career, having no natural talent for the sport. As long as I can stay ahead of the HD Devil, I’ll still be in the race. All 5 of us finished the 30th anniversary race in 2005, so the competition continues. We don’t wish the others bad luck, but we wish ourselves better luck. You can read about the group at http://www.marinemarathon.com/exec/marineMarathon2006/groundPounders.cfm?publicationID=373 I fully expect to be running my 50th at age 80 in 2025.

I took up a different sport in 1996. Ultrarunning – distances over the standard marathon distance of 26.2 miles. I read a quote somewhere that said “26.2 miles is where racing ends and the ludicrous extreme begins.” I liked that. I had gone into a snit after two failed attempts at qualifying for the 100th Boston Marathon. The qualifying times, even for older age groups, are pretty tough.

Ultrarunning training and racing is different from the marathon. I figured out the training part and finished my first 50 mile race at the Bull Run Run 50 in Virginia. I finished my second 50 later that year in a much better time. There are 100 mile races, and one of them is held in a state park in my home town of Raleigh, NC. When I finished that second 50, I asked myself at the finish, “Could you do that again? Starting right now?” The answer was “Maybe”.

At the finish line of the Umstead 100 with the Race Director. I feel better than I look.

The next week I sent in my application for the Umstead 100 Mile Endurance Run in April, 1997. I finished in a little over 27 hours, comfortably within the cutoff time of 30 hours. Running a 100 miler is completely different from marathons and the shorter ultra races. You must deal extensively with hydration and nutrition issues and plan for the unknown. Something bad is going to happen in each race, but you can’t predict what it’s going to be. You have to deal with sleep deprivation running through the night into the next day. You have to deal with blisters and upset stomachs. Most importantly, you have to deal with the urge to quit the madness, which happens to everyone in every race. It’s been said that you run a marathon with your legs and your lungs, but you run a 100 miler with your heart.

My experience with the 100 helped prepare me for the unexpected arrival of HD in my life. It’s an unknown that has to be dealt with, just like those unexpected events that show up at 75 miles. Crying and feeling sorry for yourself won’t fix a painful blister, nor will it help fight HD. I’ve now finished the Umstead 100 four times and I’ll be going for my 5th finish in 2006.

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