Wednesday, 7 March 2012

Bexarotene, Coconut Oil, and Enbrel

I am being bombarded with emails asking me about off label Bexarotene, promoting Coconut oil, and asking me about advice on Enbrel.

Bexarotene


Bexarotene, Coconut Oil, and Enbrel
I would eat two
or three of these immediately
if you send them to me.
The most frequently asked question I am receiving is -- if I know a doctor that will prescribe Bexaroten (Targetin) off label? No I don't.

Additionally, I don't know how to buy Bexarotene off label. Nor, am I personally interested in buying the medication.

Here is what Dr. Gary Landreth, Professor of Neurosciences, Alzheimer Research Laboratory Case Western Reserve University, School of Medicine, said,

"Don't try this at home because we don't know what dose to give, we don't know how frequently to give it, and there are a few nuances to its administration. So one shouldn't be prescribing it off-label."

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If you want to learn more about Bexarotene here is the link to 4 articles I wrote, Bexarotene and Alzheimer's.

I have no idea when and if there will be a Phase 2 clinical trial for Bexarotene and Alzheimer's. However, rest assured, the minute a clinical trial is announced I will publish that information here.


Coconut Oil

I have no opinion on coconut oil and its use with Alzheimer's patients. Yes, I am reading the available information and watching the videos.

Dotty does not take coconut oil.

If you are interested in taking coconut oil I would suggest you ask your doctor if there are any downsides to taking it. Not his opinion on coconut oil, if it conflicts with any medication you are currently taking.

The current frenzy over coconut oil does remind me of the past frenzy over Ginkgo Biloba. That one was shot down -- Ginkgo Biloba -- Two Thumbs Down for Treatment of Alzheimer's and Dementia.

I really can't see any downside to taking coconut oil. If there are no medicinal conflicts, coconut oil should be good for you.

I should mention, I am a fan of cinnamon.

To those who want me to promote their videos or websites that are selling coconut oil -- No.

Enbrel

Enbrel is back as a magic treatment for Alzheimer's patients. It comes and it goes.

I have no opinion on Enbrel. Dotty has not been treated with Enbrel, and as of this time, she never will be.

I am not interested in promoting the treatment for a fee, accepting advertising for a fee, or promoting videos on Enbrel as a magic cure for Alzheimer's.

I can't help or advise anyone considering this treatment.

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Hiring caregiver to relieve THE MAIN CAREGIVER

He has had a sharp decline the past 6 months and I am finding it more difficult to bring in new caregivers to sit with him as he has become angry that someone (bad) comes in the house and he tells them to get the h~~~l out of his house.

Alzheimer's Reading Room

Our reader Ginny is now in a situation where she is seeking some insight, advice and help. I doubt she is the first to find herself in a situation like the one described below.

If you found yourself in a similar situation what would you do? Or, maybe you found yourself in a situation like this, what did you do?

Perhaps one or more of you has a potential solution that is beyond the obvious.

This is a call on the Collective Brain of the Alzheimer's Reading Room.

If you know someone that can address the problem described below, please ask them to share their insight and advice.

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Our reader Ginny wrote:

My husband of 56 years was diagnosed 8 years ago and I have run the gamut of the grieving steps several times over. I have accepted the inevitable and with support groups, praying and research, feel fairly confident that I can get Sid and myself through the day relatively unscathed.

He has had a sharp decline the past 6 months and I am finding it more difficult to bring in new caregivers to sit with him as he has become angry that someone (bad) comes in the house and he tells them to get the h~~~l out of his house, I think he equates them with my leaving him as he is very dependent on me. The more experienced caregiver understands this but they haven't been around Sid long enough to know his good side and how to turn around his bad side.

I play flute and am often asked to play in church and at church suppers, and summer band will be starting up in a couple months so, in taking care of my needs, am looking to find the right caregiver who can sit with Sid through the late afternoon, supper, and bedtime without Sid falling apart along with the hired caregiver. I am 76 years old and feel if I give up flute playing now I may not pick it up at a later date.

Having said this, can you give any pointers, observations with Dotty on interviewing and instructing caregivers? I think we all know there are those caregivers who are out there who have the gift of working with dementia patients plus (if one can find and afford them) and the experience. I leave the house in trepidation on what will be his behavior, I can not bring him to these gigs anymore as there is too much confusion or he tired and ready for bed at 6.30 at night.

Please add your advice, insight and words of encouragement in the Add New Comment box below.



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Tuesday, 6 March 2012

Scientists Pinpoint How Vitamin D May Help Clear Amyloid Plaques Found in Alzheimer's

This new study helped clarify the key mechanisms involved, which will help us better understand the usefulness of vitamin D3 and curcumin as possible therapies for Alzheimer's disease.

+Alzheimer's Reading Room

Scientists Pinpoint How Vitamin D May Help Clear Amyloid Plaques Found in Alzheimer's

For those of you that have been here a while you know I often write about the importance of bright light as it relates to my Alzheimer's caregiving effort with Dotty. I am convinced that daily trips into bright light improve Dotty's mood and behavior.

Sunlight is one of the best sources of vitamin D3. In fact, I often say to Dotty, time for your vitamin D injection before we go out into the sun.

What happens to a plant when it doesn't get enough sunlight? It withers and dies.

There is a blood test available that measures vitamin D3 levels in your body. It might be a good idea to get tested for a vitamin D deficiency.

The above explains in part why the research described below caught my attention.

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Scientists pinpoint how vitamin D may help clear amyloid plaques found in Alzheimer's

Dr. Milan Fiala
A team of academic researchers has identified the intracellular mechanisms regulated by vitamin D3 that may help the body clear the brain of amyloid beta, the main component of plaques associated with Alzheimer's disease.

Published in the March 6 issue of the Journal of Alzheimer's Disease, the early findings show that vitamin D3 may activate key genes and cellular signaling networks to help stimulate the immune system to clear the amyloid-beta protein.

Previous laboratory work by the team demonstrated that specific types of immune cells in Alzheimer's patients may respond to therapy with vitamin D3 and curcumin, a chemical found in turmeric spice, by stimulating the innate immune system to clear amyloid beta. But the researchers didn't know how it worked.

"This new study helped clarify the key mechanisms involved, which will help us better understand the usefulness of vitamin D3 and curcumin as possible therapies for Alzheimer's disease," said study author Dr. Milan Fiala, a researcher at the David Geffen School of Medicine at UCLA and the Veterans Affairs Greater Los Angeles Healthcare System.

For the study, scientists drew blood samples from Alzheimer's patients and healthy controls and then isolated critical immune cells from the blood called macrophages, which are responsible for gobbling up amyloid beta and other waste products in the brain and body.

The team incubated the immune cells overnight with amyloid beta. An active form of vitamin D3 called 1a,25–dihydroxyvitamin D3, which is made in the body by enzymatic conversion in the liver and kidneys, was added to some of the cells to gauge the effect it had on amyloid beta absorption.

Previous work by the team, based on the function of Alzheimer's patients' macrophages, showed that there are at least two types of patients and macrophages: Type I macrophages are improved by addition of 1a,25–dihydroxyvitamin D3 and curcuminoids (a synthetic form of curcumin), while Type II macrophages are improved only by adding 1a,25–dihydroxyvitamin D3.

Researchers found that in both Type I and Type II macrophages, the added 1a,25–dihydroxyvitamin D3 played a key role in opening a specific chloride channel called "chloride channel 3 (CLC3)," which is important in supporting the uptake of amyloid beta through the process known as phagocytosis. Curcuminoids activated this chloride channel only in Type I macrophages.

The scientists also found that 1a,25–dihydroxyvitamin D3 strongly helped trigger the genetic transcription of the chloride channel and the receptor for 1a,25–dihydroxyvitamin D3 in Type II macrophages. Transcription is the first step leading to gene expression.

The mechanisms behind the effects of 1a,25–dihydroxyvitamin D3 on phagocytosis were complex and dependent on calcium and signaling by the "MAPK" pathway, which helps communicate a signal from the vitamin D3 receptor located on the surface of a cell to the DNA in the cell's nucleus.

The pivotal effect of 1a,25–dihydroxyvitamin D3 was shown in a collaboration between Dr. Patrick R. Griffin from the Scripps Research Institute and Dr. Mathew T. Mizwicki from UC Riverside. They utilized a technique based on mass spectrometry, which showed that 1a,25–dihydroxyvitamin D3 stabilized many more critical sites on the vitamin D receptor than did the curcuminoids.

"Our findings demonstrate that active forms of vitamin D3 may be an important regulator of immune activities of macrophages in helping to clear amyloid plaques by directly regulating the expression of genes, as well as the structural physical workings of the cells," said study author Mizwicki, who was an assistant research biochemist in the department of biochemistry at UC Riverside when the study was conducted.

According to the team, one of the next stages of research would be a clinical trial with vitamin D3 to assess the impact on Alzheimer's disease patients. Previous studies by other teams have shown that a low serum level of 25–hydroxyvitamin D3 may be associated with cognitive decline. It is too early to recommend a definitive dosage of vitamin D3 to help with Alzheimer's disease and brain health, the researchers said.

The study was funded in part by the Alzheimer's Association and by the National Institutes of Health.

Other study authors included Danusa Menegaz and Antonio Barrientos-Duran of the department of biochemistry at UC Riverside; Jun Zhang and Patrick R. Griffin of the department of molecular therapeutics at the Scripps Research Institute in Jupiter, Fla.; Stephen Tse of the department of medicine at the David Geffen School of Medicine at UCLA and the Veterans Affairs Greater Los Angeles Healthcare System; and John R. Cashman of the Human BioMolecular Research Institute in San Diego, Calif.

Source Rachel Champeau, UCLA Newsroom

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ARR Readers Respond to Email Forwarding, My Repsonse

One of the most important things I learned is that I should never underestimate the Collective Brain of the Alzheimer's Reading Room.

By Bob DeMarco
Alzheimer's Reading Room

Simply, thank you.

Yesterday I wrote, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded, the comments are fascinating. The comments are educational and enlightening. New comments are still coming in.

Let me start by saying first and foremost, I am an Alzheimer's caregiver. Because of this, I have a good understanding of how dementia caregivers think and feel. I still remember feeling confused, powerless, and disenfranchised.

I continue to feel each day how difficult it is being a dementia caregiver. I experience the same emotions that most Alzheimer's caregivers experience.

The primary goal of the Alzheimer's Reading Room is to educate, sometimes entertain, and empower Alzheimer's caregivers. Empower is the key word.

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I started writing more seriously, here, because members of the Alzheimer's community asked me to share my insight, feelings, observations, and life with Dotty.

So far there are more than 30,000 comments on this blog. In addition, I received more than 6,000 emails that I can account for.

Many of the emails say, "thank you for creating this website". Others talk about how "they feel abandoned by family and friends".

Many readers come here feeling "lonely or alone". Many new readers learn that the problems they are facing "are common to many of us". This does help them understand and cope.

There are many thing about Alzheimer's caregiving that disturb me.

For example, I know that a person that is lonely or feeling alone is at risk for depression. About 40 percent of caregivers suffer from depression. I believe that we, the Collective Brain of the Alzheimer's Reading Room, are helping many avoid depression. Frankly, we are their life line, they are our life line.

I am disturbed that many Alzheimer's caregivers feel abandoned by family and friends. I want to do something about it. I know you do also. This is one reason why I wanted to learn how the information we have here is being shared.

We won't "wake up" family and friends unless we educate them. Maybe if they read the articles published here, and the comments under the articles, the comments of real live AD caregivers, maybe they will "wake up. We can only try. We are trying. We can try and lead them to water, it is up to them to drink.

I wrote the article, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded, for a specific reason. I wanted to better understand why more caregivers aren't sharing the information here. Well, I learned the information is being more widely shared than I might have imagined. I learned. You educated me. The comments for me are wonderful and eye opening.

As I said, I am an Alzheimer's caregiver. I know what it is like to live in the front row, I know what it is like to be forgotten.

There are more than 3 million AD caregivers searching for information on the Internet right now.

While I understand that the Alzheimer's Reading Room is not for everyone, I want every single AD caregiver in the world that can benefit from what we are doing here to find "us". I do get frustrated when I read an email that says, "I wish I had found the ARR sooner", "I wish I had the ARR when I needed it most".

I want every AD caregiver in the world to find us. I know this is an ambitious goal. Some people might think it is unrealistic. This won't stop me from discovering a way to get them here. I won't stop trying.

Let me make this clear. When I use the word "us", I am referring to each and every one of us collectively, each and every reader, each and every subscriber. I am referring to the Collective Brain of the Alzheimer's Reading Room. We have each other. I believe we need each other.

Let me make the issue of your email address and Privacy clear.

Privacy
  • We have a very large and growing email list.
  • The addresses on that list are private.
  • They are not being shared, and they will never be shared.
  • We will never sell, or even rent that list. Never.
On the issue of tracking readers and subscribers.
  • We have no way of tracking any person on the email list.
  • We have no way of knowing who reads an email.
We now have the ability to understand all of the following.
  • How many emails are sent.
  • How many emails are opened.
  • How many emails receive a click.
  • And, how many emails are forwarded.
We don't know what any one person did. We cannot track you individually.
I bought this new email program to try and get a clearer understanding of what is happening in the aggregate. I thought the information might help me to better understand what is happening. I believe this information could help me to get some ideas on how to do things more effectively. I want to find ways to do what I am doing better.

Please understand we can't do everything. I can't even do everything I want to do right now.

I view the Alzheimer's Reading Room as a unique one of a kind support group. Not a support group in the traditional sense. And, not a support group that acts like a message board, or an email "list serv". Message boards and "list servs" for Alzheimer's already exist.

The goal here is to provide information in an easy to read, easy to use format. In addition, the comments area is designed to allow readers to add insight and advice on a single issue. The single issue, or issues, in the article above each comments section.

I did learn quite a bit from the article, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded.

One of the most important things I learned is that I should never underestimate the Collective Brain of the Alzheimer's Reading Room.

I am very happy to write those words.

Thank you, again.




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Monday, 5 March 2012

Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded

Just wondering?

By Bob DeMarco
Alzheimer's Reading Room

I was looking at a subset of the Alzheimer's Reading Room email subscriber list to get a better idea of what is happening.

I looked at the last 1,227 emails that were opened. The first interesting piece of information. Of 1,227 that were opened, only 689 (56.2%) were clicked on. Let me explain this. Of 1,227 people that received the email in their email in box and then actually opened the email, only 689 clicked on a link that was in the email. This means the other 538 people opened the email and did nothing. I guess they deleted it, or saved it for another time.

Here is the biggest thing I noticed. Of the 689 that took action (clicked on an article link to read it) only one person forwarded the email.

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Next I took an old email, it was sent to 7,960 subscribers. Lo and behold, only 42.5 percent of the readers that received the email opened it. And, of those, 62.3 percent took action, clicked on a link in the email. Results, 2,107 of the 7,960 people that received an email actually came to the ARR and read an article. We have another old legacy email list, but I can't pull any statistics from those. We actually have three different email lists, and I have been intending to consolidate them for some time. Some day.

We also have over 900 readers on our RSS feed. I have not looked for trends there.

The single thing that caught my attention throughout this entire endeavor is that only .3% of all the emails get forwarded to another person. That is about 3 out of each 1,000.

I would have thought that more emails were getting forwarded. I am not surprised by the other statistics because I know that each reader has different habits. For example, many of the weekend emails don't get read until Sunday or Monday. If it snows like crazy in a few of the very large states more emails get opened. Emails get read more frequently in the winter than they do in the summer. Some readers read every day, some read every few days. Some readers start, stop, and then start reading again. Some quit.

Here is something you might find of interest. In January, 2009 we added 21 new email subscribers for the month. So far today we added 26, make that 29. I think the most fascinating thing about this number is we don't advertise or market the Alzheimer's Reading Room. Nevertheless, the number of subscribers continues to grow every day, and so far the list continues to grow faster and faster in terms of new subscribers.

So I sit here wondering. Why don't more people forward an email when they find an article of interest? Why don't they sometimes forward an email to their entire email list?

We keep growing and growing each month in terms of readers coming from Google, Bing, Yahoo, Facebook, support groups, and word of mouth.

Aren't there people out there that you know, or friends of friends out there, that are looking for high quality information and advice about Alzheimer's disease? The growing numbers coming in from search seem to indicate that the answer to this question is yes.

More than 150 million Americans have been touched by Alzheimer's disease. Where are they? Well, they don't know about us. Not yet anyway.

I would think that every person aged 35-45 should be learning about Alzheimer's now. Many of them will need the information soon enough.

Just wondering.



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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,461 articles with more than 410,100 links on the Internet. Bob lives in Delray Beach, FL.

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R.I.P. Harvey

Sadly, last Thursday my pal and Alzheimer's caregiver sidekick, Harvey passed away.

By Bob DeMarco
Alzheimer's Reading Room

Harvey
As many of you know, Harvey was Dotty's best friend.

We tried everything we could think of, but after repeated attempts to revive him, Harvey passed on, we hope, to toy parrot heaven.

Hopefully, he is now "yakking" away and eating an unlimited supply of nice fresh mangoes.

Harvey will be greatly missed by both Dotty and me.

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The morning after Harvey passed Dotty woke up asked me, is Harvey dead? I told her he was.

When she moved to the kitchen table she asked, who is this? I said that's Petey. Dotty then said, Petey you'll never be a Harvey. I loved Harvey. Folks, I did not make this up, it happened.

Petey took it all in stride knowing that he had one big mouth to fill.

Dotty and I decided in an effort to avoid confusion to go down to the Palm Beach County courthouse and have Petey's name legally changed to New Harvey.

So Petey is now Harvey (new Harvey). This made it much easier for Dotty to make the change.

New Harvey is a very kind, sweet, gentle repeat parrot.

In order to help new Harvey work more effectively I had to sit new Harvey on an angle so the hole in the bottom of his base is more or less facing Dotty. Oddly, the sound of voices goes into the hole on the bottom of the base, and new Harvey doesn't work very well if the hole is not better exposed to voice.

New Harvey promised that he will try and fill the void left by the now deceased Harvey.

On another note. I am now in touch with a company in China that has a 6 battery version of a repeat parrot. The only barrier right now is me finding someone with a FedEX account. The company will gladly send me a test parrot if I am willing to pay the shipping via Federal Express. I am still working on this as we don't have a FedEX account at this time.

One can only hope that the six battery version is a good as old Harvey.

I am still working the world to find out if there is a nine volt battery version of Harvey being made. We will leave no country un-turned.

I have written many times in the last year of the the important role that Harvey the repeat parrot played in our lives. He is greatly missed by both Dotty and me.

I know you are wondering so let me tell you, Dotty has adjusted very quickly to new Harvey. Although, new Harvey can't sing or catch my voice from afar the way that Harvey did.

For those of you that did not know Harvey well, here he is with Dotty.





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Friday, 2 March 2012

Truth About Viral Diseases


Various polls show that most people consider that cold-related diseases are treated with antibiotics. It is wrong belief because antibiotics do not act on viruses. When doctor prescribes antibiotics in case of cold, he supposes treatment of complication that was developed at the back of bacterial infection.

Viral diseases are treated with antiviral drugs such as Tamiflu. The medication works complexly – from the one side it activates natural body defense, from other side it blocks reproduction of viruses in epithelial cells. This approach really helps the body to fight infection much quicker. Tamiflu not develops addiction, it just accelerates natural process of body defense. The immunity may produce itself all necessary protective substances but it requires more time for this.

Figurally, this process may be compared with the situation when you saw a danger and notified security service before security observes the dander itself. Indeed, in older times influenza coursed mildly with running nose and slight weakness which lasted 5 days.

In recent years flus do course severely, practically causing bronchitis, pneumonia and sinusitis. In first symptoms of starting disease it is necessary to take medications that activate immune system. Vitamins C, D and zinc also improve immunity, therefore may be recommended in case of influenza. Vitamin C may be taken in doses of 2 grams per day.

Many people do sincerely believe that is is dangerous to aerify room because you may catch cold. Cold-related diseases are caused by viruses, concentration of which get increased in closed rooms. Aeration helps to get rid of “excessive” viruses and get a portion of fresh air.

Conditioner not solves this problem, it cools down stagnant air in the room. And if you stay under its cool streams of air, you may easily get cold. Therefore, try to aerify room regularly and dress warm clothes when you stay in a room with conditioner.