I have nothing to sell you but hope, and that I give you for free.

The purpose of this web site is to provide you with information for when you meet with a physician to discuss what can be done for someone suffering from brain failure.  You will have a list of questions to ask, and sources to read so that you can ask them intelligently.  I want to share some of the information I've accumulated in my search to help my mother.  The following pages are literally my electronic notebook, which I am constantly updating, revising, and expanding.

Looking back, it seems that my mother's symptoms first showed up in mid 2000.  I had bought my parents a computer, but even though my mother had worked for many years as a secretary, she had great difficulty typing.  In late 2003, my mother suddenly lost the ability to write, and found it difficult to come up with the words she wanted to say occasionally.  After a battery of tests, her neurologist told her that she had a stroke, and that she definitely did not have AD.  But her mental abilities continued to decline.  In April of 2006, my father found her unconcious with what appeared to be the symptoms of a stroke.  Being rushed to the nearest emergency room within 20 minutes of her fall was to no avail since the ER doctors refused to do anything.  We started hearing the words "vascular dementia" being mentioned by the hospital physicians.  After another battery of tests, her neurologist decided that nope, he was wrong after all.  She actually did have AD.  And further more, there just wasn't anything at all anyone could do:  Just go home and wait for the Grim Reaper.

I'm not the type to give up so easily.  I figured that if we did nothing, she would just get worse, no matter what she had.  So, I started scouring the Internet to find out what alternative treatments were available.  Ah yes, "quack medicine".  Granted, this is not the preferred course of action.  But mainstream medicine had thrown up their hands in defeat.  By doing nothing, there was no chance.  By doing something, well, perhaps I could find something that would help.

Indeed, I found lots and lots of alternative therapies for AD.  Some made lots of sense to me.  For example, Dr. John McDougall advises switching to a complex carbohydrate based diet that excludes animal protein, dairy products, and any added oils.  Such a diet has been shown to slow the advance-- if not reverse-- arterial sclerosis.  Certainly this would benefit a person suffering from vascular dementia.  Then I learned about chelation therapy using EDTA.  This intravenous method of removing metals from the body has been found by its practioners to also improve the mental function of patients suffering from AD.

Along the way, I read about clioquinol-- an old intestinal antibiotic taken off the market more than 30 years ago that seemed to halt the progression of Alzheimer's disease.  I learned about desferrioxamine-- another metal chelating agent that had successfully stopped the progression of AD.  The mainstream AD drug Namenda was found to delay the progression of AD for at least a year.  A paper published on June 11, 2006 describes a plant sugar called scyllitol, or scyllo-inositol, that was able to actually disolve the amyloid beta plaques in mice genetically engineered to have AD. 

In early December, 2007, a neurologist specializing in momement disorders gave us the diagnosis of "probable CBD", which is "corticobasal ganglionic degeneration", a tauopathy, or, a disease involving the corruption and aggregation of intracellular tau proteins.  This initiated a whole new search in a new direction. Later, in early 2008 I learned of the multiple salubrius effects of lithium, curcumin, cinnamon, and methylene blue.  In November of 2008, I read about the possibility of coconut oil being able to supply neurons with an alternative source of chemical energy, since many neurodegenerative diseases appear to involve a problem with metabolizing glucose.  Most recently, late in December of 2008, I learned of the possible use of niacinamide to combat tau protein corruption.

These were not mere "alternative therapies". Real research was behind these ideas.  So, what my mother's neurologist had said was not at all true.  There were in fact things that he could do, drugs that he could prescribe.  There may be therapies to arrest the progression of several neurodegenerative diseases, and maybe even things that can reverse them.  Unfortunately, the medical establishment is agonizingly slow to try new ideas on people.  You have the choice to wait on them, or take matters into your own hands if you can.  Surely, you say, someone else has tried these things.  Why?  It is highly likely that many new ideas have never been tried on a patient with the particular disease you are dealing with.  The medical establishment lacks the researchers, the money, the patients, and the motivation.  You may in fact be the first to try one.  If you do nothing, the outcome is assured.  If you try something, if you roll the dice, place the bet, buy the lotto ticket, maybe, just maybe you will beat the odds.

Here is my story...

Update March 12, 2007
As of this time, I have not noticed a decline in my mother's condition.  Due to the lack of any effort on the part of the medical establishment to offer any treatment whatsoever, we have been forced to rely on herbal supplements such as phytic acid, ginkgo biloba, vitamins, etc.  I don't know if anything we are doing is helping, or if, she is indeed suffering from vascular dementia, and not Alzheimer's Disease as her neurologist claimed back in May of 2006.  There is no doubt in my mind that she suffered a stroke last April, so we are trying a two-front attack.  First, try to stop another stroke.  Second, try what is available to us to arrest AD if it is present.  Again, I make no claims that herbal supplements and alternative medicine is superior to traditional medicine.  It's just that our traditional MDs and DOs are not making anything available to us nor offering any suggestions other than, "Go home and wait..."

Update March 24, 2007
After reading about the remarkable results in the February 18, 2005 issue of the Journal of Biological Chemistry "Curcumin Inhibits Formation of Amyloid β Oligomers and Fibrils, Binds Plaques, and Reduces Amyloid in Vivo", we decided to start giving it to my mother, starting March 21, 2007.  It's way way too early to see any improvements, but we haven't noticed any decline.

It would be a miracle to find something like curcumin (or syllitol if I could find a source for it) to be a cure for Alzheimer's Disease, or even if it put it into remission.  I believe that there are probably several causes for the formation of amyloid-β in the brain.  Curcumin might be just one way to let people live with and control the condition.

Update April 3, 2007
It's been a couple of weeks since we started giving my mother curcumin (turmeric extract) supplements, but we have seen some changes.  The first thing we noticed was that she is sitting up straight.  Prior to this time, and since the incident on April 19, 2006, she tended to lean sideways to her right.  For the last week, she has been sitting up straight.  It also seemed that her pupils did not dilate, but now I've noticed that they do.  This may be more of a result of my inaccurate observations than curcumin. I try to take her out for a walk three time a week.  Normally, she wouldn't bring her right foot forward of her left, so she walked in sort of a shuffle.  Now, her gait is almost normal, but she takes very small steps.  And she is distracted by anything, almost as if in mid stride, she forgets what she is doing, and just stops.  Needless to say, walks take a long time. However, we still can't understand her very often.  She strings together long sentences with words that don't seem appropriate for their context, and then nonsense syllables.  Every so often, I can understand exactly what she is trying to convey, even if the words aren't pronounced quite correctly.  I think there are full ideas, but she isn't able to communicate them.  If this symptom is the result of a stroke, then I doubt there will be much improvement.

Update July 30, 2007
Some days she sits up straight, some days she leans to the left, but most days, she leans decidedly to the right.  I don't get it.  Her ability to walk seems to be declining, but I'm not sure of the cause.  She seems to be more distracted since we started the curcumin, and anything... little critters on the sidewalk, cars passing on the street, birds, someone talking... anything seems to make her forget what she is doing.  Also, she spends a lot of time sitting.  Maybe she is merely getting weak.  I say, "merely" because exercise should be able to help with that, as opposed to further mental decline.  But her ability to communicate has not improved, and she doesn't seem to be able to learn anything new.

Back in May, my mother-in-law clipped an article out of the June 1, 2007 Woman's Day magazine about a condition called NPH, or Normal Pressure Hydrocephalus.  This treatable condition is thought to cause up to 5% of the dementia cases, and is often misdiagnosed as Alzheimer's disease.  When a neurologist is looking for NPH, it is diagnosed by several physical symptom such as problems with walking, incontinence, and declining mental abilities.  Sounds like AD, right?  Honestly, I think in my mother's case, she has had a series of small strokes.  But just in case, I checked to see if her neurologist had checked her for NPH.  It turns out they had not.  So, we had her go through some more tests, EEG, blood tests, and an MRI.  Since she can't lie still on her own, she had to have anesthesia, so that turned out to be an all-day affair.  Tomorrow, July 31, we will talk to her new neurologist to find out what he thinks is wrong with her.

A recent article that appeared in the press (May 2007?) said that researchers have concluded that AD can be precipitated by brain injury caused by head trauma or stroke.  The damaged and dying cells cause amyloid beta to form. These plaques are toxic to the surrounding healthy brain cells causing them to expire.  This process continues on leading to full blown AD.  Perhaps this is why neurologist automatically assume that people who have a series of small strokes also develop AD.  I'm hoping that the curcumin, ginkgo, and IP6 are preventing brain injury induced AD.

Update September 5, 2007
Well well well... seems that she had been misdiagnosed after all.  The radiologist's report says that there is evidence that suggests the presence of normal pressure hydrocephalus (emphasis on the "phal" syllable), NPH.  One of the tests they perform on patients suspected to have NPH is a "high volume lumbar puncture" or "high volume spinal tap".  There seems to be some disagreement on exactly what constitutes a "high volume".  In this test, they remove a quantity of spinal fluid, then let the family  note any changes and improvements in motor skill ability, most importantly, walking.  My mother's neurologist specified 25ml of CSF (cerebral-spinal fluid), but during the follow-up visit, he "discovered" (I guess he never bothered to look at the hospital's report until we were sitting in his office) that they had only taken 14 ml.  Being a 73 year old woman, she has arthritis in her spine, making a routine spinal tap so difficult that they had to admit her to the hospital for sedation and the use of an X-ray to guide the needle.  So, tomorrow, we get to do it all over again.  I hate having to put her through all of this.  I'm not sure she understands what's going on and that it is necessary.  I am afraid, however, that after all of this, the neurologist is going to refuse to put in the shunt that would reduce the pressure of the cerebral fluid. If  there isn't enough improvement from the test, he won't think it's indicated.  But, NPH is a progressive, and ultimately fatal condition.  In my mother's case, it has been left untreated for at least four years.  How much "improvement" can we expect after all the irreversible damage that's already occurred?  If the shunt will prevent further decline, isn't that enough?

Update December 10, 2007
After seeing two neurosurgeons and a "cognitive and movement disorders" specialist (neurologist) at the University of Michigan, we still don't know what's wrong with her... for sure.  The U of M neurologist seems to have come closest to the mark as far symptoms go.  He said that he thinks she has "corticobasal degeneration" (CBD, a.k.a. corticobasal ganglionic degeneration, CBGD).  This is not good.  But, there may be a relation to this condition and iron intake.  I'm not giving up yet.  There is a paper describing certain characteristics of CBD sufferers that can be identified from MRI images [need new page for CBD!].  The U of M neurologist never mentioned if he had seen these characteristic changes in my mom's MRI.  Probably not, since it seems that a 3-d re-construction from the MRI slice images is required.  So, it still may be that she had NPH.  In case she does have CBD, or some variant, and CBD is caused by a tau protein problem and iron overload, we are continuing on with giving my mother IP6 and curcumin.  However, I've increase the curcumin to 1500 mg per day, in three 500mg doses, spread out evenly throughout the day.  In the mouse model studies, they were feeding the mice ~24mg of curcumin for every kilogram of body weight (which isn't much for a lab mouse!).  For a 110 lb woman, this would work out to about 1200mg per day.  The lower dose seems to be more effective, overall, so 12 mg per pound of body weight seems like a good approximation.

Here are the supplements and vitamins she is currently taking just in case the results we are getting are due to a combination.

Update February 27, 2008:

After 4 years of being told my mother had a stroke... no it's Alzheimer's... now wait, it's a stroke AND Alzheimer's... definitely NOT Alzheimer's...  Creutzfeld-Jacob disease?... might be normal pressure hydrocephalus... Oh we think it's CBGD... after all this I don't know if I can believe the physicians.  CBGD seems to fit her symptoms, but I was told by the neurologist at the University of Michigan hospital that there was no way for him to confirm the diagnosis.  I had done a lot of research on the symptoms of diseases that cause dementia, but I had not run across CBGD when we were at the neurologist's office, so I wasn't prepared.  Since then, I did find some interesting things. I found out that CBGD brain changes can be identified using an MRI ("Corticobasal Degeneration: Evaluation of Cortical Atrophy by Means of Hemispheric Surface Display Generated with MR Images" http://radiology.rsnajnls.org/cgi/content/full/216/1/31 ).  I also found out that iron metabolism seems to play a role in "Parkinsonian Syndromes", of which CBGD is classified ("Iron metabolism in Parkinsonian syndromes" Mov Disord. 2006 Sep;21(9):1299-310. http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=16817199&cmd=showdetailview )

It really irritates me that these physicians diagnosed my mother with this incurable, untreatable, and un-confirmable, progressive neurological disease; which then seems to give them the excuse to do absolutely nothing.  I asked if she should be checked for other diseases, such as heart problems, female exams, thyroid tests.  Nope, they say.  "If we found something, what would we do?" they say.  If they found a miracle cure for CBGD tomorrow, how would I find out, since they don't even suggest that we take her in for follow-up visits.

Not being one to give up until the buzzer sounds, I have to keep looking for answers.

How was the diagnosis of CBGD confirmed in the cases you folks are dealing with?

Have you tried anything to slow, halt, or reverse the progression; and, what HASN'T worked?

After reading the "Iron metabolism" paper cited above, I've been giving my mother about 800mg of IP6 (phytic acid or myo-inositol hexakisphosphate) every day.  IP6 is perhaps the most potent iron chelator found in nature.  Also, the paper mentions the possibility of using the pigment curcumin.  I've been giving 1500mg (~12mg per pound of body weight) in three doses per day.  When I first started this, we did notice some improvement in walking.  Not sure if this was due to the curcumin or not.  (I started giving it to her over a year ago when we thought she had Alzheimer's, since curcumin was found to cure Alzheimer's disease in a study with mice.)

Recently, there was a report that the anti-inflammatory arthritis drug Enbrel (Etanercept) was able to reverse the symptoms of AD (Alzheimer's disease).  Research such as this seems to indicate that the neurodegenerative diseases in general are caused by inflammation.  If CBGB is also caused by brain tissue inflammation, I wonder if Enbrel would be effective?  Anyone hear of anyone researching or trying this?  (You know, physicians can use drugs approved for one diseases, say, arthritis, to treat another that it was not specifically approved for.)

And then on the less believable side, there are these researchers in England who claim that treating AD patients with 1072nm near-infrared light for 10 minutes per day could stimulate the neurons to re-generate. ("Emotional responses and memory performance of middle-aged CD1 mice in a 3D maze: Effects of low infrared light" by S. Michalikovaa, A. Ennaceura, Author, R. van Rensburgb and P.L. Chazot http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WNM-4PMYXT7-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=c492cd7b3f1b2d001fbba992984d8873 )  The researchers / inventors made a helmet lined with light emitting diodes (LEDs) that emit a light spectrum centered around the 1072nm wavelength.  It is believed that water is transparent to infrared light at 1072nm, opaque to the rest of the infrared (IR) spectrum.  I think that one could use a broad-spectrum IR heat lamp with a layer of water (glass aquarium? ziplock bag filled with distilled water?) between the person's head and the lamp so that the heating IR light wouldn't reach them.  Since treatments are supposed to take only 10 minutes per day, I don't think it would hurt to try, even if it IS all a bunch of hooey.  (See also "New Research Could Help Reverse The Biological Clock For Dementia Patients" ScienceDaily (Jan. 26, 2008) http://www.sciencedaily.com/releases/2008/01/080124104917.htm )

I fully realize that the prognosis for those with this horrible affliction is not good, and that palative care is about the best one can do.  However, unlike previous eras where cutting-edge information was limited to university libraries, and people searching for answers were cut off from others doing the same; unlike those days, we have the Internet.  The information and scientific papers that were once only available to academia in major universities are now available to people all over the world, right in their own homes.  Maybe the answers are already there and the medical community just hasn't had time to keep up.  Not all medical breakthroughs occur in hospitals and laboratories.

So, after you finish taking care of your loved one with CBGD for the day, do some searching.  Ask the neurologists questions.  Try some experiments with curcumin, or IP6, or infrared light, or maybe something else you might discover.  Then, let us know what seems to help, and what doesn't seem to work.

Update March 20, 2008:

I can't find research to say one way or the other if the Nutritional Alternatives we are trying help, hurt, or do nothing.  It would be nice to know.  It would be even nicer if a neurologist could answer the question, "What can we do?" with something other than, "Nothing."

Due to the absence of university or commercial research, I'm hoping that other people will try some of these things and report back on their experiences.  If there is some combination that helps, like there is for certain types of glaucoma, maybe trial and error will sort it out.  We can do this while we wait for the university, commercial and government labs to free up resources for CBD research.

Considering that the effect of doing nothing is well known, we've made the decision to try... something, even if the odds of success are as bad as they are for winning the lotto.  Without a ticket, there is no way at all to win.

Update April 1, 2008:
It appears that researchers have known since at least 1997 that lithium has "neuroprotective" effects when given at "therapeutically relevant concentrations".  (See lithium)  While we are waiting to get my mother's physicians to actually do something, I've started giving her 120mg of lithium orotate per day.  This supplement is available from well-stocked health food stores, or on the Internet.  I don't know if 120mg will be enough to be a "therapeutically relevant concentration".

Update July 21, 2008:
On April 29, based upon some new information I found on Mary McKinlay's blog, we started giving my mother 1/2 teaspoon of cinnamon in her food three times per day.  The results have been astounding!  Instead of constant, insidious decline, we have actually seen improvement.  In June, we switched over from ground cinnamon in her food to "cinnamon tea".  While I have no illusions that this is curing her disease, it does seem like it is halting it, and even providing some recovery of lost abilities.  We didn't start seeing major improvements until about 6 weeks into the program.  I don't know how long this effect will last before the biochemical processes that are responsible for the corruption of the tau proteins overwhelms the water-soluble component of cinnamon that seems to be doing the job.  Every day I fear that we will start seeing signs of the resumption of decline.  But so far, even with daily fluctuations, the trend has been for steady improvement.

Update August 20, 2008:
Back in December, my mother was diagnosed with "probable corticobasal degeneration", CBD.  I didn't know anything about it, so as I came across vitamins or supplements that *might* work, I started giving them to her.  Since she wouldn't swallow the pills, I had to open them up or grind them up and put them in food.  Apple sauce worked the best.  But, I felt sorry for her, because that concoction must have tasted awful!  So, I started putting ground cinnamon in with it to try to cover up the taste of the pills.  Late in December, we started to notice some improvement, but I thought that it was due to the handfulls of vitamins and supplements I was giving her.  In January, my dad took over giving her the supplements, but he found that she would take it just as well without the cinnamon.  So, he stopped.  At that time, I considered cinnamon merely a flavoring.  Over the same period, I kept modifying the mix of supplements too.  In February and March, she started to decline fast.  I started to panic.  She was sleeping all the time.  She couldn't walk.  Her pupils were like pinpoints.  I began a journal of everything I was giving her, how much, when, what she ate, how she behaved, when she went to the bathroom... everything.  I couldn't figure out what I had been doing "right" back in December, but was getting so terribly wrong in February.  By April, I was desperate.  I started giving her lithium orotate (which might be a good thing) but it didn't seem to help.  While searching the Web for more information about using lithium to treat neurodegenerative diseases, I ran across a blog that mentioned that there might be something in cinnamon that would prevent the tau proteins from clumping together, and even dissolve aggregations of tau that had already formed.  I was stunned.  I knew immediately what I had done right in December.  I was giving her cinnamon.  Accidentally!  Based on my experience from December, I was pretty sure it would work again.
 
It did work.  It brought back some of her abilities.  Not everything.  Some better than in December, some not as well.  Whatever it is that causes her disease is still there, and came back with a vengance when we stopped interrupting it.
 
The only things that have happened that have been out of the ordinary is that after about two months of giving her the cinnamon, my mother had two seizures.  At least that's what we think they were.  We rushed her to the hospital, but they couldn't find anything wrong.  It may be important to note that we had been giving her 60mg of lithium orotate, every other day just prior to the seizure.  But we discontinued this after the seizures in late June and a week later in early July. The neurologist at the hospital gave her a prescription for the seizure drug dilantin, and hasn't had a seizure since. She's had a few of these since her symptoms began-- it's one of the symptoms of the disease.  But in the past, she would lose some ability after the seizure.  Contrast this with what we saw as continued improvement after the last two seizures.  It was scary, to say the least, but to our surprise and relief, it didn't seem to do her any harm.  Since she was already predisposed to having seizures, and had had them in the past, it may be that the cinnamon triggered something.  Or, it may have been the lithium orotate.  It may be that the cinnamon brought back some damaged neurons that went nuts.
 
I have not heard of anyone else taking cinnamon who has had a seizure.  I have heard recently, from two other people using this for Alzheimer's, and it seems to be working.  Maybe it only works for Alzheimer's, and my mother's diagnosis it wrong and she has AD.  That is a possibility.

But now we hear about the drug Rember from the UK, and its close cousin, methylene blue!

Update November 10, 2008:

We are continuing to give my mother a "cocktail" of supplements.  Since the medical establishment will not help us try other options, like lithium and methylene blue, we are forced to go it alone.  I have listed what I believe are the essential components of this cocktail, and call it "Patricia's Protocol".  It consists of what I believe to be four essential supplements:  Cinnamon, lithium, a very dilute solution of methylene blue, and curcumin.  There are probably other supplements that would be beneficial, and address other aspects of the disease process.  It seems to me that taking  the lithium orotate and the cinnamon was more effective than either alone.  I added the very dilute solution of methylene blue about 8 weeks ago.  I have been very pleased with the improvements in alertness and her ability to communicate.  I hope others who try this experience these good results too.  And if you do, please pass the word.  This is such a simple protocol to try.  If it does work on others as it seems to for my mother, just think of how many people are suffering merely from the lack of knowing about it.  Of course, my mother will be 75 years old this month.  She is weak, frail, and is likely to have other health problems.  I can't beat all the diseases, but maybe, just maybe we've stumbled across the right plan to attack this one!

Update March 8, 2009:
Our latest addition, coconut oil and/or MCT oil (in the form of Twinlab's "MCT Fuel") really seem to be helping.  My mother is much more alert and her right arm seems to be looser.  She also is awake most of the time.  That's definitely a good change.  We are also giving her 500mg of niacinamide 3 times per day, along with some other supplements for other things.  I would definitely recommend trying 2 tablespoons of coconut oil per day, and 1/2 tsp (or equivalent) of cinnamon 3 times per day.  At least for 3 or 4 weeks.  This disease is supposed to be a constant downhill ride, so seeing this period of improvement after starting the coconut oil is encouraging.  I know some may say that this is the nature of the disease to have plateaus like this.  Well, prove me wrong.  Try this and let me know if it doesn't help.

Update June 4, 2009:
Still chugging along.  We had to adjust the MCT/coconut oil regimen.  Using Dr. Newport's experience as a guideline, we have increased the MCT oil to 2 teaspoons three times per day, at 8:30a.m., 2:30p.m., and finally at 8:30p.m. Along with that, we are giving my mother 1 Tablespoon of coconut oil in the morning, and again before going to bed (as close to 12 hours apart as practical).

I wish we would have known about this back in 2006.  I think we could have preserved most of my mother's mental abilities.

My mother will be 76 this year in November.  Even if this latest regimen is successful in halting this horrible disease of CBD, there are whole medical libraries full of descriptions of other diseases she could come down with.  Whenever I have been faced with having to endure some stressful trial, I have always broken the probem into two outcomes.  I would say, either I am going to live through this, or not.  At some point, we all will be confronted by some problem we will not be able to overcome.  At 76, something else is bound to come up.  But not today.  Not this disease!

Update July 25, 2009
Found an error in the note above and corrected it.  I originally had "2 Tablespoons three times per day", when I should have typed "2 teaspoons three times per day".

Her MCT/coconut oil regimen is now 5 tsp of 3:4 MCT/coconut oil mixture, 3 times per day plus 1/2 tsp of ground cinnamon 3 times per day.  Again, following Dr. Newport's lead, I melt 2 cups of coconut oil in a 4 cup glass measuring cup (in a pan of hot water), and then add in 1-1/2 cups of MCT oil.  Right now we are using Ultimate Nutrition's "MCT Premium Gold" and Tropical Tradition's Extra Virgin coconut oil.

Update October 4, 2009
I haven't mentioned it here before, but one of the other positive effects since starting the MCT oil and coconut oil regimen (the "ketogenic oils") has been weight gain.  For the last 7 years, my mother's weight has been on a steady decline.  She's lost almost 100lbs since 2000, when she weighed in at about 190lbs.  Granted, she needed to lose the weight.  Her "ideal" weight, she told me years ago, was about 105lbs, but had been as light as 95lbs when my parents got married.  I don't know how low her weight got to before the MCT/CO regimen, but I can tell from her face, and when I lift her onto her wheel chair that she has gained several pounds back.  I don't know if this is purely from the added calories, or because her muscles seem to be a bit more relaxed and the myoclonus much less pronounced.  It's an interesting phenomenon, and if anyone else with CBD tries this, please let me know what your observe.

We dropped the niacinamide a few months ago since we didn't notice any benefit.  Keep in mind that we are giving my mother other substances that may be doing the same thing, that is, addressing the tau protein corruption and aggregation problem.  So, I'm not ruling out trying the niacinamide again.

I have been quite intrigued by the research showing that Alzheimer's disease may be the result of the body's response to a chronic infection, in particular, the Helicobacter pylori infection of the stomach.  I keep wondering if the disease one gets depends on one's genetics.  In my mother's case, if she has the H.pylori infection, does her body react to it in a way that results in CBD symptoms?  Some criticize the fact that we don't know for sure what disease my mother has.  The first diagnosis was a stroke, the second Alzheimer's, the third normal pressure hydrocephalus, and finally, it was CBD.  But it is common knowledge that about 50% of the time, a diagnosis of CBD during life based upon symptoms turns out to be incorrect.  So, as I have mentioned before, one might as well try things that target the other possible diseases.  Since there has been a huge amount of research into Alzheimer's disease, those things that target AD tend to be the things I try.

My latest experiment is broccoli sprouts.  A chemical found in abundance in broccoli sprouts, sulfuraphane, inhibits Helicobacter pylori.  All it takes is about 2.5oz of broccoli sprouts 3 or 4 times per week to keep the bug in check.  (If you stop the broccoli sprouts, the H.pylori returns.)  First up will be a supplement made by Source Naturals.  Perhaps later, I will try my hand at growing the sprouts from seed.  Now Foods sells broccoli sprout seeds and my local health food store stocks them.  I don't expect these things to cure my mother of the disease-- whatever it turns out to be-- or correct the permament damage already done, but I hope they will control it.  As with cinnamon and the ketogenic oils, I figure they are safe enough to try.  If they don't work, not much was lost and probably no harm done.

I hope everyone who reads this joins with me in this quest to do what the medical establishment just doesn't have the incentive to do, and find answers for ourselves.

Update April 28, 2010

Recently, a member of the Alz.org "medications and treatments" message board found an article in The Times of India about a trio "cocktail" of anti-oxidant supplements that might be able to help people with Alzheimer's disease by improving the function of the mitochondria of the neurons.  There is a theory that AD and other neurodegenerative diseases may in fact be a disease of the mitochondria, the "power-plant organelles" of cells that convert the energy of glucose or ketones into adenosine triphosphate (ATP). Cells use ATP as the currency of energy for cellular processes, recycling it over and over again . I discuss this idea more in the D-Ribose section of the Notes page.

Ironically, back in 2008 when I started giving my mother the cinnamon, I had also been giving her a myriad of other supplements in a desperate attempt to find something, anything, that would help.  After reviewing my notes and researching what each supplement is composed of, I found that I was accidentally giving her exactly this supplement trio in the form of alpha-lipoic acid (ALA), N-acetylcysteine (NAC), and and alpha tocopherol (the most commonly available of the eight forms of vitamin E).

Unfortunately, at this time, I don't know how much of each supplement to use.  For the time being, I will use the manufacturer's recommended dosage found on the bottles.

Update July 16, 2010

The following is from an aborted post to a message board:

My mother was diagnosed with CBD in December of 2007.  She's at the point where we have to do everything for her.  My dad really isn't able to take care of her, but he won't spend any money to hire help, and really puts up a fuss when I insist that she needs to see a physician about other health problems.  I guess he doesn't think I'm suffering enough, so he needs to torture me with her condition.

So, while I'm dealing with all of this and feeling bad about my situation, my wife lost a brother-in-law in Oct. of 2008.  In January of this year, her father died on a Saturday afternoon, while we were feeding him lunch.  We were visiting him in a rehab, recovering from broken hip.  In April, her mother died in a hospital while we were making sure she ate her dinner.  She was recovering from routine knee replacement surgery.

I was there for all three.  I was at the bedside for two of my grandparents.  Five times I have had to stand by, helplessly watching someone slip away.

Life... it doesn't end well.

But my mother keeps chugging along even as my father gets goofier and goofier.

My way of coping is to do what *is* in my power to do today, and leave the future up to God.

It is on the point of what is in my power to do that my thinking differs from most other people.  Living things want to continue to live.  Our bodies carry us along even when we have no conscious will to live.  Do babies *know* they want to live?  Do plants know that they want to grow and flourish?  The last time I checked, the grass in my lawn will start turning brown if it doesn't get water.  Some people will tell you, well, it's shutting down.  They will tell you the same about sick people, "their body is shutting down".  No, it is not "shutting down" like some shop keeper tidying up for the close of the business day.  What is actually happening is the systems of their bodies are losing the battle to continue on.  If you give brown, dying grass water, won't it turn green and grow again?  If you are able to address the disease of a dying person, won't they return to health?

In order to do anything on purpose, anything at all, first you have to believe that the thing can be done.  If you do not believe this, you will not try, and you will not do.  The physicians tell us that there is nothing we can do to interrupt these terrible neurodegenerative diseases.  They do not believe it can be done, they will not look for a treatment, and therefore they will not find one unless random luck throws it in their face.  I took a different position.  I say, there IS a treatment.  It may yet remain to be discovered, or it may have been discovered by some researcher or amateur investigator, but is not yet known to physicians.  Taking the second possibility as my motivation, I began to use the new invention of the Internet to look for possibly helpful things discovered by others, but not known or not generally accepted by physicians.

There are indeed ideas to try.  Some we can pursue on our own, some we need the assistance of physicians.  I say, let's try some of these things and start the research that the medical establishment does not have the time, money or motivation to do.

Update October 25, 2010

In September, 2010, a woman on a CBD message board posted this:

Hi everyone!

We're trying to wrap our minds around this one. [My husband] is recovering from this hopeless disease! His balance, strength, flexibility are greatly improved after only one week on a product that causes the body to release more adult stem cells into the system.  He is walking some without his leg brace, waving his left arm around(It has been clamped at his side for over a year), and getting in and out of chairs with much more ease. We have gone from hopeless to amazed and thrilled!

Has anyone else had this experience?

What followed was some honest speculation as to what this "product that causes the body to release more adult stem cells into the system" could be.

The next day, her daughter posted a response:

... and then followed a shameful condemnation of the women for trying to peddle 'snake oil' to a bunch of desperate people".

So much for open mindedness.  And so with that, the majority of the group threw out the baby with the bath water, so to speak.  But, a couple of us didn't, and that's the rest of the story!

I dug into the research behind AFA too and came up with enough evidence to support the idea of trying it. We are using straight AFA, not an extract.  We started out on September 21 with one 500mg capsule per day and increased the dosage by one capsule each week, as suggested by the manufacturers on the label of the bottle. This week we are up to 4 capsules per day, 2 in the morning and 2 at night.  We think we may be seeing some positive results!  I'll give details in my next update.  I think we will keep increasing the dosage until we get to 6 per day, 2 capsules, 3x per day.  If we continue to see good results, we may take a gamble on the AFA concentrate StemEnhance.  But it is very expensive, I think.

Wrap up December 29, 2010

I failed.

I never got the chance to try StemEnhance.  My mother passed away sometime in the early morning of December 15, 2010.  She had just reached 77 years, the same age as her mother.  It had been taking us longer and longer to feed her since about Thanksgiving (late November), so on Sunday, December 12, we decided that it was time to begin discussions with her physicians about a feeding tube.  We had stopped giving her almost all of her supplements because it was just taking us too long to give them to her, and we thought that maybe she was objecting to the taste.  But, apparently, there was something else wrong, and since she couldn't communicate to us what she was feeling, all we could do is guess.  Obviously, we guessed wrong.

We don't know for sure what happened to her, and we decided that there was no benefit in pursuing the matter further.

If only I had known in 2002 when she first started showing definite symptoms what I have learned since... most of which I have learned in the last 3 years since late December of 2007.  If only I could have convinced her physicians that here was a life worth saving, worth putting some effort into treating... When I would take her in to the physician's office to address some problem like an eye infection or rash, I would always ask about checking her for the other problems that people her age should be checked for.  But they would say, "If we found something, what would we do?"  Or, since many of her major muscles were tense when she was awake "with her condition, we couldn't get good images from a CAT scan, and we couldn't get her into an MRI without sedating her, and that would be hard on her."

I should have been more aggressive in caring for her other health problems.  The biggest test of my life. I failed.

My hope had always been to find some way to arrest the progression of her disease.  In that, I believe I might have succeeded.  But, she was in such bad shape by the time we started what I think were the most effective treatments, that it was just a matter of time before some other condition that I did not know about (and was not addressing) became critical.

My fantasy was that I would find something to turn things around and see improvement.  I thought maybe AFA and the AFA concentrate StemEnhance had a chance at making this fantasy real.  I had been giving her the AFA before her decline in appetite, and I thought we were seeing some improvements such as she seemed to be "talking" more (unfortunately, we couldn't understand a word).  Fearing that the AFA was the cause of the eating problems, I stopped it for a couple of weeks, but it didn't help.  I decided to try the StemEnhance, and started giving her one capsule in the morning, as recommended on the bottle, with the intention of gradually increasing the dose by one capsule each week until she was taking 6 per day.  But I started on December 7, and didn't even get to the second level.

The supplements that seemed to have the most noticeable benefit were curcumin, cinnamon, and MCT/coconut oils.  Curcumin produced two affects, one completely unexpected, the other hoped for.  The hoped for effect was a noticeable improvement in her ability to walk.  This was early on in the disease, in 2006 or 2007, even before we knew for sure what was going on.  One of her neurologists thought that she might have Alzheimer's disease, so after a long search, I found some research saying that a study done on rats showed that curcumin might be able to rid an AD brain of the amyloid beta protein plaques.  Epidemiological studies in India where curcumin consumption by way of the curry spice turmeric was high and the incidence of AD was low suggested that curcumin might help.  The second unexpected effect I didn't even realize until it was pointed out by other people using curcumin.  My mother used to take medication for high blood pressure. But all of a sudden, her physician announced that she no longer needed it because her blood pressure was normal.  We thought that this was due to the dramatic weight loss she had experienced until other people taking at least 500mg of curcumin twice per day reported the same effect.  Apparently, for some people, taking curcumin like this corrects high blood pressure.  When we started giving her cinnamon, we saw a definite improvement in alertness, wakefulness, and some restoration of mental abilities.  But, just as others who have used this have found, the effect lasts for maybe a year, then, whatever the aberrant process is that caused the disease overwhelms the beneficial effects of whatever it is in cinnamon that helps.  The MCT oil and coconut oil basically put an end to the muscle convulsions known as myoclonus, which is a significant characteristic of CBS.

So, as I said, I wish I had known about these things in 2002.  I could have giving her most of these things in simple quick capsule and pills instead of having to open them all up, or grind them into dust and make what must have been a most unappetizing goo that we resorted to squirting in her mouth with a children's medicine syringe tipped with a piece of soda straw.  I certainly hoped this stuff helped her because that must have been like torture.  But in 2002, she could have been part of the treatment.  She could have told me how she felt.  And if these things had helped slow or halt the progression of the disease, she could have spent the last 5 years of her life with her family and friends instead of being like a big doll that had to be lugged from bed to couch every day, or hauled around like baggage when we took her out of the house.  It's so sad.  I would not want anyone to experience this.  We don't know how aware of what was going on around her she was, but I think she was.  Even early in the week she passed away, I heard her laugh at something I said.

So, I will leave this information here in the hope that others with CBS/CBD/CBGD will benefit from the information I've been able to compile and avoid becoming a prisoner in their own bodies.

January 12, 2011 and onward

I will add "lessons learned" here as I think of them.

1)  I believe that curcumin made my mother's blood pressure normal and eliminated the need for blood pressure drugs.

2)  Most people do not want to believe that they have any ability to fight a disease, but would rather delude themselves into thinking that there are medical giants somewhere out there who know what to do and are willing to do it.

3)  The MCT oil regimen of Dr. Newport restored some of my mother's abilities, reduced the severity and frequency of the myoclonus, and I believe it reduced her rigidity.  I just wish I would have known about it before she lost so much.  My records show I only started it around December of 2008, just about 2 years ago.

4)  I should have paid much more attention to the other illnesses and ailments of an invalid, such as urinary tract infections, bed sores, and other issues caused by not being able to move.  This, more than the CBS directly, I think was what ultimately took her from us.  Not even was the actor Christopher Reeve, who was incapacitated not by a neurodegenerative disease, but by a spinal cord injury, able to withstand immobility for more than a handful of years.  It is the consequences of immobility and inability to communicate that are your worst enemy.

5)  I should have taken time to massage her arms and legs.  We talked about doing this, but didn't do it very often.  It should have been part of my father's daily routine, and I should have done it every time I saw her.  The poor woman couldn't even scratch her nose if it itched.  How horrible that must have been.

6)  I should have stood her up more.  It was strenuous for me, but I think it helped get her bowels moving, which would probably have made her feel better.

7)  I should have been more aggressive with pursuing treatments.

8)  I wish someone else had compiled all of the information in my web site, and that I had found it five years ago.

9)  Ultimately, you will fail.  I knew this all along, but I kept hoping that it would be from something else, not CBS.  In this, I think I got my wish.

10) In the early stages of the disease, had I known she had CBS and had I known more about it, I would have made a greater effort to find a way to communicate, especially by way of Yes and No questions.  CBS strips away abilities, but the mind is probably still intact, and desperate to communicate.  At one point, very early on while we were still laboring under the misdiagnosis of a stroke, she tried very hard to tell me who she wanted to give the various items in her curio cabinet to.  I couldn't understand her, and thinking she had had a stroke, I thought she would recover some of her speech.  So, I didn't try very hard.  So now I get to live with regret.

11) I had to try to help her.  I did not give up.  And while I miss her as she was before she got sick (something I had put out of my mind while dealing with the day to day problems), and I feel that I failed, I do not have the regret that I knew of things to try, but did not.

12) I should have forced the medical establishment to deal with her, even though they made it very clear they thought I was nuts for trying to help such a withered up, disabled old woman.  They had written her off.  It was clear when they saw her, here is a life not worth saving.  Here is a life not worth spending money on.

13) While she clearly had "CBS", I think it was the "Alzheimer's disease pathology" variety.  This turns out to be about 1/4 of the cases diagnosed by symptom.  While she did not have the classic Alzheimer's disease symptoms, she did have some symptoms that are not typical of CBD.  The first was a loss of the sense of smell.  The second was the random jerks called myoclonus.  The third were seizures.  While her memory for doing things was destroyed by the disease, we believe that she did retain her memory for people, faces, and understanding speech.  Also, using things like cinnamon, curcumin and MCT oils seemed to help her.

Update March 13, 2011
Since the loss of my mother, my father's neurological problems have become more pronounced.  While his memory appears to be good, his ability to walk is deteriorating.  We do no know why, he doesn't want to go to a physician to find out (he says he doesn't want to pay for it, but I think he just doesn't want to know), and after our experiences with my mother and the medical establishment, I really don't know what they could do for him anyway, other than to charge exhorbitant fees before telling us, "there's nothing we can do".  They have no remorse doing that.  But, I'm thinking that I should know so I can make plans and preparations.  Going by the health issues of his mother and 10 brothers and sisters, the most likely candidate for his problems is a stroke.

Another disturbing piece of news was the research into the genetic connection of brain atrophy and that this follows from mother to child, not father.  Some day, I may be looking to these notes for my own survival.

Update September 19, 2011
My father's neurological deficits have become much more noticeable.  This is unbelievable.  How could they both have problems so similar?  One day in April, I tried calling my father to see how he was doing.  He didn't answer the phone.  I called many, many times.  I felt uneasy about this, but he had done this to me before.  When he finally did answer the phone, he seemed delirious and totally confused.  I found him standing in the doorway of his kitchen with his pants and underwear around his ankles.  Something was very wrong.  We took him to the emergency room.  To my surprise, he was diagnosed with pneumonia.  After a week's stay in the hospital on some very powerful IV antibiotics, he was released to a "rehab" (which was, in fact, a nursing home).  He seemed to improve over the six weeks he was there, but I just didn't believe that he could live alone.  So, we brought him to our house and made up a guest bedroom for him.  A couple of weeks later in early June, he had a run-in with the family cat, and the cat won.  A bite to the hand and a nasty infection landed him in the hospital for a few more days.  His mental condition worsened drastically during the time of the infection, and bounced back for the most part after the infection was cleared up.  Again, IV antibiotics followed by a week of oral antibiotics.  The day we brought him back home, he couldn't urinate!  Back to the ER again where they drained over 1 liter of urine with a catheter.  For the next two months he was in and out of the hospital and urologist's office with urinary tract infections and getting the catheter replaced.  In August, after clearing up the last urinary tract infection, he had surgery for benign prostrate enlargement, which restored his ability to urinate.  But, after all of this, his mental abilities continued to decline despite the regimen of supplements I was giving him (very similar to what I was giving my mother).  There has been a lot of research into the observation that there is a connection between oral health (bad teeth and gum disease) and dementia.  He has bad teeth.  My mother had bad teeth.  Matter of fact, about a year before her precipitous decline in 2006, she lost most of her teeth one night.  The rest were extracted a few days later.  Years of neglect, I thought.  But, seeing my father's decline, I just couldn't help thinking, is there a connection?

Now, the rest of the story (so far)...

On August 26, 2011, "onward" posted a message to the Alz.org message "Medications and Treatments" message board about the paper Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.  Wow!  Here was the link!  And, it identified a target for possible treatment.  You can read more about what I've found out about this topic on my page The Role of Infection and Inflammation in Neurodegenerative Diseases.  We started giving him, with his physician's assistance, 100mg of doxycyline every night to see if this helps.  I think it does, but other things like coconut oil/mct oil is needed since even if the infection is controlled, there is still much damage that may not be reversible.

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Updated: December 29, 2010
Inception: June 5, 2006