www.perpetualcommotion.com
"Give with a free hand, but give only your own."
-- J.R.R. Tolkien The Children of Hurin
Notes
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What
this page is for:
I'm creating and maintaining these pages for my own use to keep
track and try to make sense of all of this information. I
then make it all available to the entire world in case someone
might be helped by it. The information in these Web pages
is for the time when the medical community throws its hands in
the air and says, “There’s nothing we can do for you, go home
and die.” This alternative medicine stuff might all be
hooey, but given the choice between trying it and going home to
wait around for the grim reaper, why not give it a try?
“It ain’t over, ‘til it’s over.”
As I've said before, I'm all for whatever works, whether that's
Enbrel, supplements, methylene blue, or licking the butts of
South American tree toads (I made that last one up).
Thanks to all of the people who have provided the information I
have gleaned from the various message boards. These are clues
and leads, and yes, it is OUR responsibility to research them
further.
Again I must say that I really appreciate the, "we're gonna take
matters into our own hands and do something" attitude of some of
the people I have run into, especially on the Alz.org "Medications/Treatments
for
Alzheimer's and Other Related Dementias" forum, instead of
a bunch of people just holding hands and commiserating about how
horrible these diseases are, and how the doctors don't have any
answers. OK, commiserating can help ease the anxiety and
depression, but doing something-- trying some of these things
mentioned here and elsewhere-- doing IS helping.
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Mainstream
Medicine
I’m not against mainstream, traditional medicine. It has a
lot of offer. The experience, training, and knowledge of
these professionals should not be discounted. If they have
a drug or therapy that makes sense and has solid research and
testing behind it, go for it!
Mainstream physicians denounce "alternative medicine" as quackery [from the German word for mercury, quacksalber, once used to treat disease???]. They say that alternative medicine providers are just exploiting people's desperate attempts to find a cure. But I can assure you that after spending thousands of dollars on tests, neurologists, physicians, and hospitals, just to be told, "sorry, there's nothing we can do for you, just go home and die", mainstream medicine is more than happy to take all your money without even offering hope. If mainstream medicine can't even offer hope, then pursuing alternatives is more than justified. AD is a terminal illness. What difference does it make to the AD suffer if he spends all of his savings on a possible cure that doesn't work? It's his money to do with as he pleases. Traditional medicine is just as happy to take every penny of your money as alternative medicine is. Traditional medicine is every bit as bad when it comes to diseases they are ineffective in dealing with as "quack medicine" is. Both will take your money with a smile, or with a lawyer and collection agency if necessary.
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A Rut:
A good example of how physicians can get stuck in a rut
and refuse to accept change is stomach ulcers. For many
decades they insisted that if you had a stomach ulcer, you had
too much acid, probably because you worried too much or were
under too much stress. However, as time went on, in the
1980’s researchers found that stomach ulcers were caused by a
bacteria! But now comes the sticky part. What if
this bacteria could have been eliminated by eating dandylions
instead of an patentable drug? (This is just an absurd
example to illustrate a point.) What would have been the
financial incentive to push the medical community into using
dandylions instead of expensive drugs to reduce stomach
acid? Why would the mental health industry want to give up
“treating” these obviously overstressed individuals? There
would be no incentive. Physicians, drug companies, and
researchers seeking grant money would have scoffed at the very
idea of using a mere common lawn weed to cure a nasty
illness. But fortunately for ulcer suffers, dandylions
weren’t the cure, an expensive drug was.
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Profit
Motive:
There is nothing wrong making a profit for providing a product
or service. It is the best incentive to get people to do
what they are the best at doing when they don’t feel like doing
it. But it is wrong to block competition through the use
of artificial government regulations or trade guilds that
control a profession (with government endorsement). It is
also wrong to push high cost drugs or therapies that have little
or no benefit over other drugs, or even herbs, that have about
the same benefit, just because more profit can be made from the
high cost products. For us as consumers of medical care,
it is a matter of discerning motive. Full disclosure of
alternatives and benefits would be the ideal, but it is not
going to happen while human nature rules human nature. The
cure for this ailment is self-education.
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Physicians Vs. Doctors:
Most physicians and surgeons are not true “doctors”, in that
they do not hold a Ph.D. They ‘practice’ medicine, they
don’t create it, study it, or research it. Few physicians
have the time or incentive to truly study the latest
research. If you are lucky, you will be dealing with one
that has found the time, or had just been to a conference, or
happen to have picked up the right medical journal and read the
right article. Otherwise, they are pretty much in the dark
as they race from examining room to examining room to give each
patient their full five minutes worth of attention. So it
is left to you, the concerned relative or the patient to educate
yourself as much as you can so that you can ask the right
questions. If you don’t get the right answers, then either
your information is wrong and you need to do some more digging,
or you need to find another physician. Few physicians will
be willing to even acknowledge your self-education, and if your
sources are not mainstream, instant contempt for the source will
block out any consideration of the information. When you
have to confront the physician (since many drugs and therapies
can only be had by way of a physician or his prescriptions),
make sure you only quote or provide mainstream publications,
studies, journal articles, etc.
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Who is the customer?:
When you are dealing with physicians, hospitals and
pharmaceutical companies, remember who the customer is:
Insurance companies and/or the government (Medicare). The
healthcare industry serves the purse holder not you!
Somewhere along the line, these mega organizations have to keep
the masses pacified, but if your condition lies outside of the
norm, you are out of luck. They will probably not want to
deal with your problem because dealing with you will take too
much of their time or their resources. Since you are not
the customer, they only have to take care of enough cases to
keep the purse holder happy. The next time you are in a
hospital and you are dismayed by the way you are being treated,
remember: You are not the customer, your insurance company
is.
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The real challenge...
The real challenge may be...
Even if you find something in these pages you think might work,
and the doctors agree with it, the real challenge might be
getting the patient to change their lifestyle. Habbits and
behavior will probably be your greatest obstacle. This is
like watching your grandfather smoke himself to death with
cigarettes. You know they are bad for him, and that his is
smoking way way to much. But what can you do? You
just can't stop him, and so you must just stand there and watch
him pound nails in his own coffin. A person who is
starting to show the signs of dementia, either from Alzheimer's
or from Vascular Dementia, may not even be able to help
themselves. They may not have an appetite to eat better
food. They may not be able to swallow or feed
themselves. Their primary caregiver may not believe that
mere lifestyle and eating habbits and herbs and medicine or
anything can help. Fatalism or a state of denial can doom
the dementia sufferer to an inevitable decline. The only
way pills can help you, if they can, is if you have enough faith
to swallow them.
This may be your greatest challenge. This, more than
anything else may be something you will not be able to overcome.
The person you used to know is there, but she isn't. It's like a book with missing pages; a hard drive with sectors randomly wiped out.
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Possible causes of dementia: [Find out more about these
and elaborate]
- Tauopathies (Alzheimer's disease, corticobasal degeneration,
FTD, PSP, etc.)
- Multiple "mini strokes", a.k.a. TIA (Transient Ischemic
Attacks [check this!!!!!!!!!!]
- Traumatic head injury
- Chronic remote inflammation
- Brain tumors
- Chemical imbalances
- Spinal fluid pressure
- Exposure to toxins
- Aluminosilicate
accumulation
- Vitamin B12 deficiency
- CCSVI (chronic cerebrospinal venous
insufficiency)
Occurrence
of
beta-methylamino-l-alanine (BMAA) in ALS/PDC patients from
Guam.
Acta Neurol Scand. 2004 Oct ;110 (4):267-9 15355492
Cit:30
S J Murch, P A Cox, S A Banack, J C Steele, O W Sacks
Institute for Ethnobotany, National Tropical Botanical Garden,
Kalaheo, HI 96741, USA.
We tested the brain tissues of the Chamorro people of Guam who
died of amyotrophic lateral sclerosis/Parkinsonism dimentia
complex (ALS/PDC) for the neurotoxin beta-methylamino-l-alanine
(BMAA). We used validated high-pressure liquid chromatography
and liquid chromatography-mass spectrometry analyses to test
well-characterized archival tissues of the superior frontal
gyrus from eight Chamorros from Guam and a comparison group of
15 Canadians. BMAA was found as a free amino acid in 83% of
Chamorro ALS/PDC patients (3-10 microg/g) as a
protein-associated amino acid in 100% of the Chamorro
individuals (149-1190 microg/g). Both forms of BMAA were also
found at comparable levels in two Canadians who died of
progressive neurodegenerative disease. BMAA, which is produced
by cyanobacteria, may be associated with
some cases of neurodegenerative disease.
http://www.ncbi.nlm.nih.gov/pubmed/15355492
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The Irony of Iron
The contents of this section have been moved to the Iron page.
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Chelation Therapy
The contents of this section have been moved to the Chelation Therapy page.
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Phytic Acid (myo-inositol hexakisphosphate, IP6, InsP6)
The contents of this section have been moved to the Phytic Acid page.
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Scyllitol (scyllo-inositol, cocositol, quercinitol)
The contents of this section have been moved to the Scyllitol page.
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COGNIShunt
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Clioquinol
The contents of this section have been moved to the Clioquinol page.
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Research & Drugs Under Development
[search Google for AF267B 3/2/06]
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Aluminosilicates
The contents of this section have been moved to the Aluminosilicates page.
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Aluminum:
The contents of this section have been moved to the Aluminum page.
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Type III Diabetes
The contents of this section have been moved to the Glucose Metabolism page.
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Curcumin
(Turmeric extract)
See also Curcumin, Copper, Vitamin D
The contents of this section have been moved to the Curcumin page.
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Alternative Alzheimer's Disease Treatment
The contents of this section have been moved to the Nutritional Alternatives page.
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NPH
(Normal Pressure Hydrocephalus)
The contents of this section have been moved to the NPH page.
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Infrared
The contents of this section have been moved to the Infrared page.
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RF (Radio Frequency)
The contents of this section have been moved to the RF page.
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Enbrel (Etanercept)
The contents of this section have been moved to the Etanercept page.
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Polyphenols
The contents of this section have been moved to the Polyphenols page.
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Tannins and Tannic Acid
The contents of this section have been moved to the Tannins page.
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Anesthetics
See also Enbrel
The contents of this section have been moved to the Anesthetics page.
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Copper
The contents of this section have been moved to the Copper page.
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Lithium
The contents of this section have been moved to the Lithium page.
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Cinnamon
See also Tau
Busters
Inflammation
The contents of this section have been moved to the Cinnamon page.
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Infection and Immune System Response:
See also Helicobacter
pylori
HSV
Inflammation
The contents of this section have been moved to The Role of Infection and Inflammation in Neurodegenerative Diseases
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TNF-Alpha
See also Enbrel
Chitosan
Cat's Claw
Cinnamon
Curcumin
Inflammation
NT-020 references in
AFA
The content of this section has been moved to TNF-Alpha page.
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Chitosan (Water-soluble Chitosan, chitosan
oligosaccharide)
The contents of this section have been moved to The Role of Infection and Inflammation in Neurodegenerative Diseases page.
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eSadists, Kevorkians, Ghosts, and the Company of Misery
The contents of this section have been moved to the eSadists page.
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Rember
The contents of this section have been moved to the Methylene Blue page.
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Methylene Blue
The contents of this section have been moved to the Methylene Blue page.
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The circular logic of "Standard of Care"
(Don't expect any help from your physician)
You: "Hi, doctor. Thanks for calling me back.
As you know, my mother has this incurable and ultimately fatal
disease. I read that methylene blue was found to halt it's
progression. Can we try giving it to my mother for a month
and see how she does?"
Physician: "Well, no one in our area is using it for that,
so I can't. It wouldn't be the current standard of care."
You: "So no physician will use it until some other physician
uses it?"
Physician: "That's right. You will have to find a clinical
study somewhere."
You: "Is this 'standard of care' a legal restriction?"
Physician: "No. But if a procedure isn't the current
'standard of care', I can't prescribe it."
You: "If it's not a legal restriction, who says you can't?"
Physician: "Well, if I were to use a treatment that was
not the current 'standard of care', and the patient has a bad
reaction, then there would be legal problems."
You: "So this is to avoid law suits?"
Physician: [crickets]
You: "She's got a terminal illness, what can it hurt?"
Physician: "You will have to find a research hospital
studying this."
You: "What if I can't? What if all the physicians say they
can't try it because no one else has tried it yet?"
Physician: "I can't help you."
You: "You can help, but you won't. You know what's going
to happen if something isn't done."
Physician: "I can't help you."
You: "I can get methylene blue from other sources, but I
would rather have the prescription drug and medical
supervision."
Physician: "You mean you are going to try to treat her
yourself?"
You: "If I have to. You won't. No physician will
because no other physician will. You leave me no choice."
Physician: "You can't do that."
You: "Why not?"
Physician: "You might hurt her."
You: "Hurt her? She's dying! I have to
try something."
Physician: "You can't try something no one else has tried.
How do you know that it will work?"
You: "I don't know. But I do know what happens to someone
with this disease if the current 'standard of care' is all they
get."
The medical establishment derrides "alternative medicine" as
quackery, but it is too timid to try anything without a massive
clinical trial with double-blind studies and millions of dollars
spent of physican salaries to oversee it. Who will pay for
such an expensive thing if there is no money to be made on the
drug being tested? And even if some government or charity
ponies up the cash, how long will it take for the study to be
completed? You can count on it taking way to long.
Your loved one will be past the point of help, and the outcome
for them will be the same as if you tried an experimental drug
and it failed.
Make good friends of Ms. Google and Mr. Yahoo. Search. Keep
searching, and never ever give up. Motivation sometimes finds
answers that education misses.
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Coconut Oil (Medium Chain Triglycerides, MCT)
The contents of this section have been moved to the MCT oil page.
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Mitochondrial Dysfunction
The contents of this section have been moved to the Mitochondrial Dysfunction Page.
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Dr. Sinatra (The Sinatra Solution)
The contents of this section have been moved to the Dr. Sinatra (The Sinatra Solution) page.
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D-Ribose
The contents of this section have been moved to the D-Ribose page.
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Magnesium
The contents of this section have been moved to the Magnesium page.
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Acetyl-L Carnitine
The contents of this section have been moved to the Acetyl-L Carnitine page.
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Resveratrol
The contents of this section have been moved to the Resveratrol page.
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Statins
The contents of this section have been moved to the Statins page.
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Coenzyme Q10 (CoQ10)
The contents of this section have been moved to the CoQ10 page.
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Fish Oil (EPA/DHA, docosahexaenoic acid)
The contents of this section have been moved to the Fish oil page.
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Lecithin (choline)
The contents of this section have been moved to the Lecithin page.
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Uridine
The contents of this section have been moved to the Uridine page.
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B-Complex Vitamins
The contents of this section have been moved to the B-Complex Vitamins page.
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Vitamin B6 (Pyridoxine)
The contents of this section have been moved to the Vitamin B6 page.
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Vitamin B9 (folate, folic acid)
The contents of this section have been moved to the Vitamin B9 page.
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Vitamin B12 (cobalamin, cyanocobalamin, methylcobalamin)
The contents of this section have been moved to the Vitamin B12 page.
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Niacinamide / nicotinamide
See also Tau Busters
B-complex Vitamins
The
contents
of this section have been moved to the Tau Busters page.
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Apple Juice
The contents of this section have been moved to the Apple Juice page.
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Tau Busters
The contents of this section have been moved to the Tau Busters page.
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Grape Seed Extract
The contents of this section have been moved to the Grape Seed Extract page.
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Davunetide
The contents of this section have been moved to the Davunetide page.
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Valproic Acid (Depakote)
The contents of this section have been moved to the Valproic Acid therapy page.
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Nypta (NP-12, Tideglusib, Zentylor)
The contents of this section have been moved to the Nypta page.
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Anti-oxidant trio therapy
The contents of this section have been moved to the Antioxidant trio therapy page.
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Alpha-lipoic Acid (ALA)
The contents of this section have been moved to the Alpha-lipoic Acid (ALA) page.
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Alpha tocopherol (Vitamin E)
The contents of this section have been moved to the Vitamin E page.
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N-acetylcysteine (NAC)
The contents of this section have been moved to the N-acetylcysteine (NAC) page.
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Amyloid Beta and Alzheimer's Disease
The contents of this section have been moved to the Amyloid Beta page.
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Multiple Sclerosis (MS)
The contents of this section have been moved to the Multiple Sclerosis page.
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CCSVI chronic cerebrospinal venous insufficiency
The contents of this section have been moved to the CCSVI page.
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Lion's Mane Mushroom (a.k.a Bearded Tooth Mushroom, Hedgehog Mushroom, Bearded Hedgehog Mushroom, pom pom mushroom, or Bearded Tooth Fungus)
The contents of this section have been moved to the Lion's Mane Mushroom page.
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Multifunctional Cocktail
The contents of this section have been moved to the Multifunctional Cocktail page.
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Pyruvate
The contents of this section have been moved to the Pyruvate page.
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Creatine
The contents of this section have been moved to the Creatine page.
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Head/Brain Injury
The contents of this section have been moved to the Head/Brain Injury page.
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Stem Cell Therapy
The contents of this section have been moved to the Stem Cell Therapy page.
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Brain-Derived Neurotrophic Factor (BDNF)
The contents of this section have been moved to the Brain-Derived Neurotrophic Factor page.
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Granulocyte-colony Stimulating Factor(GCSF)
The contents of this section have been moved to the Granulocyte-colony Stimulating Factor page.
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Green Tea (EGCG, epigallocatechin gallate)
The contents of this section have been moved to The Role of Infection and Inflammation in Neurodegenerative Diseases page.
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Prozac
The contents of this section have been moved to the Prozac page.
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Neurogenesis
The contents of this section have been moved to the Neurogenesis page.
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Blueberries
The contents of this section have been moved to the Blueberries page.
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Vitamin D3
The contents of this section have been moved to the Vitamin D page.
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Internet links:
Alzheimer Research Forum (perhaps the best source for AD info
I've found on the Internet)
http://www.alzforum.org/
News reports of research into Alzheimer's disease. (An
excellent collection of AD articles found on the Web)
http://www.memory-key.com/Seniors/Alzheimers%20news.htm
Dr. McDougall's Health and Medical Center
http://www.drmcdougall.com/
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A note about the links in this
site:
The Internet is alive. From time to time, Web page
administrators will change links to pages, move things around,
and delete stuff. This can be very frustrating to a person
viewing a page like this one since if the author does not
continuously update his site and check all the links,
interesting, useful and important information may no longer be
available. Sometimes, old copies of what used to be at a
Web site are archived at [give like, “waybackmachine”?] or
Google sometimes has a "cache" copy when you do a search.
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Home
Preface Brain Failure Notes
Notes II References pg. 1 References pg. 2
Nutritional Alternatives
Patricia's Protocol
Tauopathy
Discussion
Forum
Correspondence Newsletters Poems Memory Enhancement
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Questions or comments, contact "perpetualcommotion.com" at gmail.com
Updated: December 17, 2010
Inception: June 5, 2006