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Fight HD with the HDL Triad

Ursodiol Treats Huntington's Disease

EPA reversed HD in all of a small group of patients.

Creatine Form and Dose to Treat HD

 
     
Judy's proactive fight against HD

Nick, a volunteer on the HDL web team, gave me a great idea for our first article. His mother is HD positive and has been having symptoms about 4 years now. She's taking a very proactive approach in dealing with her HD. She has a CAG count of 45 and actually spoke at a New Zealand conference a few weeks ago. The audience was amazed at her current good health, and her positive attitude in tackling her HD. I wanted to share with you a few of the things she's doing, that could benefit the rest of us.

(1) Prozone Diet - This is something I was not aware, so I found a website that gives some wonderful information about it www.prozone.co.nz/diet.html It's a lot more than a list of food you should eat. It's a complete approach in managing your lifestyle. It works by keeping your levels of sugar and insulin in a tight range in bloodstream. The diet was created by Dr. Sears who says, "Food is the most powerful drug you will take". I read one of the sample meals the diet recommends. It's a very well balanced meal that had me drooling.

Jerry (Editor) Notes:
I can find no peer reviewed studies that support the ProZone diet. In particular it is not a diet that supports endurance athletes. This from Sports Med 1999 Apr;27(4):213-28
The zone diet and athletic performance. "Applying the Zone's suggested protein needs and macronutrient distributions in practice, it is clear that it is a low carbohydrate diet by both relative and absolute standards, as well as calorie deficient by any standard. Reliable and abundant peer reviewed literature is in opposition to the suggestion that such a diet can support competitive athletic endeavours, much less improve them." And this from J Strength Cond Res 2002 Feb;16(1):50-7
The acute 1-week effects of the Zone diet on body composition, blood lipid levels, and performance in recreational endurance athletes.
The value of the diet also extends to recreational athletes to show a decrease of energy. "In the 80% V(O)2 max time to exhaustion trial, there was a significant reduction (p < 0.05) in time to exhaustion from 37.68 +/- 8.6 minutes for the pretest diet to 34.11 +/- 7.01 minutes for the Zone diet." I feel it is absolutely essential that anything suggested to help Phds (Persons with HD) on the HDL be supported by peer review studies or it be clearly stated, as I wish to do in this case, that there is no scientific evidence to support the benefits.

Judy responds:
"The ProZone Diet prescribes 6 meals daily, but I have breakfast, morning tea, lunch, and afternoon snacks choosing from, Smoothie, Soy Latte, muffin and biscuit and almonds. Then dinner, followed by another snack and then my milk before bed. The diet requires a fast 30 minute walk with a snack at either end. I usually mange to fit that between snacks and meals. This diet is equivalent to the advice on meals and snacks given by our Social Worker to those with HD, but because every meal is balanced, all the hormones are working all the time. Hence, my energy levels are constant throughout the day and I rarely feel tired. [Despite my chronic sleeping]. Before starting the ProZone diet I had to drink Rice and Goats milk, because of my dairy allergies. I was unable to drink soy milk because my throat reacted so violently. Now I can drink soy milk and full fat Goats milk and yoghurt. Hence I have avoided dairy products other than cheese. Following advice from the HDLighthouse I am going to replace the dairy protein powder with vegetable protein. This diet may not be for those with advanced HD, but may offer much to those at risk and with early symptoms. As with any diet or eating regime, be very careful to ensure that your calorie intake is appropriate for your HD stage."

(2) Creatine - This is one supplement we should be very familiar with. Most of us with HD are currently taking creatine, and are already aware of it's many benefits. Many people might not know what dosage to take, or why they should take it at all. Creatine is available in many ways. The most common way you will find it, is in a fine powder. Most of us are taking 5 grams a day. That's one heaping teaspoon that needs to be completely dissolved in water. 5 grams will require at least 20 ounces of water. I dissolved mine in two large glasses of water. There's several good reasons why people with HD should take creatine. It's pure energy for the muscles. The best time to take creatine is right after you exercise. This allows the creatine to be absorbed by the muscles that you just worked out, your legs, your arms, your heart, etc. Creatine can pass the blood brain barrier. Creatine has neuroprotective properties. It's also a strong antioxidant that can kill free radicals that are attacking the body. Judy is taking 4 grams (4 tablets) of Creatine Monohydrate per day. She has two tablets before and two following her daily exercise. The tablets are available from the iherb store at http://store.yahoo.com/iherb/creatinesntabs.html Source Naturals 1000mg , 100 tabs. Also Read Creatine Form and Dose to Treat HD

(3) EPA - This is another supplement most of us should be familiar with. The recommended dosage of EPA is 2 grams a day. It's available as Omega III fishoil. Most capsules only contain about 180 mg of EPA, so it's necessary to take 12 capsules to get 2 grams of EPA. I can tell you about my own personal experience with EPA. About 3 years ago, I started taking EPA. At that time I was still working, I was not exercising, and my HD was mainly effecting my balance and energy level. The first month I didn't notice any changes. Then about 6 weeks I started to notice an improvement, that got stronger each day. My balance was getting better, and so was my energy level. This improvement went on for about a month. Then in my case it started to wear off. A few months later I was back to where I was before I started the EPA, and I was having allergies to it. (diarrhea and wheezing) So I stopped taking it. I know that most of the people on this site did not experience the allergy problem that bothered me. Many of them report the physical improvements never declined like it did with me. Judy says "A softgel is available containing 600 mg of EPA per softgel". Judy is taking 3 of these per day to get close to the recommended 2 gms per day.
It is available from the iherb store at http://www.iherb.com/iherb/twinepa.html Dale Alexanders Twin EPA 600mg 60 softgels.

(4) Exercise - This is our number one weapon in slowing down and even reversing the damage done by HD. We now know that exercise produces a chemical in the brain called BDNF (Brain Derived Neurotopic Factor) This chemical has the ability to create new brain cells, even in the brain's of adults. Here's my personal experience; I'm about 6 years into my HD. A year and a half ago I went on disability at work, because my HD was beating me. I was falling about 10 times a day, I couldn't stay awake at work. I had 6 trips to the E.R. each time with broken bones from falls. I had a CT Scan of the brain done at that time, that showed an unhealthy brain that was undergoing damage. I asked my Dr's if it was OK to start running on a treadmill once my cast came off. They thought that was a good idea. At first I could only do 15 minutes a day at a very slow pace. After a few months I noticed my balance was getting better, and so was my energy level. I was able to run longer and faster. Now I can run several hours at a time at a very fast pace. My balance and energy level are perfect. Every HD symptom has dramatically improved. If you ran into me, you'd have no idea that I have HD. I had a follow up CT Scan done a few months ago, that showed a healthy brain, that actually increased in size over the last year. My Dr. said I'm the first person with HD he's seen improve over time. My mental ability is sharp. A year ago I couldn't ride a bike, I was so shaky I would fall off. Just a few days ago I did the following exercises all in one day: ran 7 miles, 200 sit ups, some weightlifting, and a 20 mile bike ride (with perfect balance).

(5) Meditation - Many with HD benefit from meditation. I think it's important to keep the brain as active as possible, to give these new neuron's a purpose. I think of them as a blank sheet of paper, that has no function, until I assign it one. The brain has the ability to mold itself as we see fit. I think Nick's mother is seeing a similar benefit with meditation.

(6) UDCA. She also plans on starting UDCA but hasn't yet. This is a drug that has been around for many years. It's sold under the name Ursodiol, and is commonly found in our bile. This drug has recently been shown to have a strong neuroprotective property. It's especially useful in stopping the damage done by HD. Each capsule contains 300 mg of Ursodiol, make sure to check the actual dosage of the capsules you buy. Dr. Steer's recommends 20 mg per pound of body weight each day, which is one 300 mg capsule for every 15 pounds of body weight. That means a person who weighs 180 pounds would need 12 capsules a day. Read Ursodiol Treats Huntington's Disease

Regards, Scott

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Posted to HDLighthouse: 18-Oct-2002
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