Scott's Conquest of Huntington's Disease

HD Lighthouse Contributing Editor's Comment: Scott Midyett didn't win nature's flip of the Huntington's disease (HD) coin. HD affected Scott was in mid life and the mid stage of HD. He couldn't drive a car. He fell down several times a day and sometimes suffered fractures. Scott's father had committed suicide over the devastation HD. Only those from HD families can know extreme frustration of untreated HD. They journey with the terrible ghost of Dr. Huntington.

Scott found that this is a new age of enlightenment. The nightmare verbal images of Dr. Huntington are a relics of the past. Scott gives us a new image of HD.

Nurture can fight and win the HD battle. Exercise, creatine, fish oil, ursodiol, blueberries and spirit can all treat HD. This is all good science, not speculation. Someday all this will be at your doctor's office. Until then, like Scott, you will have to ride with friends found on the HDL.

Treasure the new image of HD. Now ride with Scott and the conquest of HD. --Jerry
Posted to the HDL: 02 Aug 2003

This summer marks my 8th year with HD. Back when my HD started the outlook for a person with HD was very poor. My CAG count is 46, my symptoms started at the age of 33. At that time I was working as a chemist, in a lab with lot’s of dangerous chemicals. Before I was on any HD medication, my chorea was terrible and I was having panic attacks. My Dr. put me on Paxil right away, because suicide runs very high in my HD relatives. He also put me on Klonopin which helped my chorea to some degree, but made me very tired at work. After a few years I was no longer safe working in the lab. My company moved me to a safer office job. Unfortunately this was only delaying the day I would eventually have to go on disability.

2-1/2 years ago I was in the worst shape in my life. I was falling about 10 times a day, had no energy, and was falling asleep in my chair at work. Then I had a very bad 2-month stretch, where I had 6 trips to the ER each time with broken bones from falls. I broke my back twice, both feet, my right wrist, had several concussions, whiplash, and amnesia. It was during that time my company put me on disability. Luckily all of the broken bones healed with just a cast, except for my wrist which required surgery.

I’ve been following the HD Lighthouse for almost 5 years now. About 3 years ago researcher’s found that the human brain had the ability to generate new brain cells. They discovered that exercise was one of the activities that could create new brain cells. At that time I had a CT brain scan done, that showed I had already lost about 5% of my brain mass. The scan also showed a very unhealthy brain that was undergoing damage. I asked my Dr. if it was OK to start walking on a treadmill, once all of my casts came off? He thought that was a good idea.

The first day I was only able to do 15 minutes at a walking pace. I set goals for myself to go further and faster. After a month I was doing 30 minutes at 5 mph. The next month 45 minutes at 5 mph. It was about that time I started to notice a slight improvement in my balance and energy level. The next month I worked up to 45 minutes at 6 mph, plus 100 sit-ups a day, and some light weight lifting. Each month I was feeling stronger, and my balance was really improving at this point. The next month I was doing 1 hour at 6 mph, plus the sit-ups and weight lifting everyday. I then started to notice an improvement in all of my HD symptoms.

After 1 year on disability, I noticed a major improvement in all of my HD symptoms. It turns out that exercise increases the level of a chemical in the brain called of B.D.N.F. (Brain Derived Neurotropic Factor) This chemical creates new neurons in every part of the brain, not just the parts of the brain that HD does the most damage to. That’s why B.D.N.F. can reverse so many symptoms.

I had a 2nd CT scan done a year after the first one. This time the scan showed a healthier brain, that actually increased in mass from the previous year. My Dr. said he had never seen anyone with HD improve over time. He mentioned how much better my balance and energy level were.

My family was very happy and surprised at the progress I was making. I found myself setting even higher goals than I had in the past. I had lost the ability to ride a bike, so I bought one just 9 months ago, and took the time to relearn that skill. Within a few weeks I was doing hour-long rides without any falls. I think it’s so important to keep the mind and body constantly challenged. I looked for other skills that had been lost, and taught myself how to do those again. I always wanted to run in a marathon, and compete in a triathlon. So I set goals to make that possible. One of the skills I had to relearn was how to swim. Last April I made that wish come true, by competing in a triathlon, and finishing the whole thing without taking any breaks.

I no longer see HD as something to fear. I view it as a series of challenges to face and conquer. As a child I taught myself how to ride a unicycle. It’s been 20 years since I last rode one. About 2 weeks ago I set out to regain that skill. I was riding it within a week. The photo of me riding the unicycle gives me even more confidence to take on bigger challenges.

Source: HDL 02 Aug 2003, Updated 03 Aug 2003

printer friendly version

	Read the HDAC/HDLighthouse Forum. Post your comments