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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 To Email Scott, Click here
Posted to HDLighthouse: 18-Oct-2002
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