Seven Web Sites To Know About For Alzheimer’s

A long time friend of ours was visiting with my wife on the phone a couple of nights ago. During the conversation, she disclosed that a neighbor of hers had a loved one that was just diagnosed with AD. She asked my wife Penny where she might go to on the internet for more educational information about AD to share with her friend?

It has been a long time since I had compiled and updated a list of such web sites so the question caught me flat-footed.  Here I am blogging about the disease and have so for nearly four years, yet I have not created or maintained any kind of comprehensive list of AD web sites to refer folks to.

So after the call, I got inspired and thought it was an appropriate time to gather up all of the web sites that I visit regularly, have visited or have recently discovered that offer helpful and empowering information on dementia and Alzheimer’s disease.

1.  Alzheimer’s Association  www.alz.org/
This is a nationwide AD web site. Top down information from Congress, the National Institute of Health, international AD research and trial news and clinical trial updates are all featured at this site. They also offer a 24 hour help line at: 1-800-272-3900.

The Alzheimer’s Association is in constant lobbying contact with our policy makers and influential congressmen and women. Information pertaining to national and worldwide Alzheimer’s research initiatives can be found here.

2.  Alzheimer’s Reading Room  www.alzheimersreadingroom.com/
Bob DeMarco out of DelRay, Florida founded this site in 2003. He is to be commended for being one of the first caregivers and AD activists to offer a comprehensive set of links pertaining to all related dementia and AD topics all available through his site. According to The Alzheimer’s Reading Room’s own statistics, they  average approximately 60,000 readers per month.

This site features up to the minute articles along with his blog about everything in the news about AD along with cutting edge medical research and the latest clinical trials. There are also a wide variety of inspiring personal stories from both caregivers and those who have AD that wish to express their feelings and passions.

I recommend that you bookmark this web site for frequent visits to keep yourself educated on what is going on with AD.

3.  Dementia Weekly  www.alzheimersweekly.com/
This is another excellent educational web site. Whether you are new to the frightening world of dementia/AD care or a veteran caregiver, you’ll want to include a bookmark of this site as one of your go-to places to keep informed. A section called Caregiver News features a substantial variety of helpful topics each month. Current featured articles include: 10 Questions to Ask Before Hiring a Caregiver, Walking Styles Detect and Fight Alzheimer's, and, The Alzheimer’s - Diabetes Connection: Much More Than Coincidence.

This web site also features an active Blog section, a Library Learning Center for on-line educational articles and a section entitled, Ask Nurse Dina. Here, visitor questions can be submitted to a nurse with over 20 years of experience with dementia/AD patients. Dina Adelman is a licensed and registered nurse in New York and New Jersey.

4.  Alzheimer’s Disease. Com  www.alzheimersdisease.com/
This  is an informational site sponsored by the pharmaceutical firm, Novartis.
Novartis markets the dementia/AD medication, Exelon, along with other popular medications such as Lamisil, Lescol, and Reclast. Novartis is based in Basel, Switzerland and was formed in 1996 in a merger between Sandoz Labs and Ciba-Geigy.

This site offers “Conversations in Caregiving,” which currently features author as well as television and radio personality, Leeza Gibbons. Leeza wrote the book, “Take Your Oxygen First,” which is her own poignant personal story of caregiving for her AD diagnosed mother.


5.  Fisher Center for Alzheimer’s Research Foundation  www.alzinfo.org/
The Fisher Center Foundation was established in 1995 at Rockefeller University in New York City.  The web site is a winner of the 2011 Web Health Awards.  This is an in-depth, comprehensive informational site to learn more about AD, risk factors, and current medical research.

It features an Ask The Experts section, a Blog Section and a vast Resource Locator. The Resource Locator offers 32 different links to such topics as ADD Chapters, Elder Law Attorneys (NAELA), MediCare information and Nursing Homes.

6.  The Mayo Clinic  www.mayoclinic.com/
This web site is the home of the famed Mayo Clinic in Rochester, Minnesota founded in 1889.
The Mayo Clinic is known across the United States for specializing in treating difficult cases. In 2011, the Mayo Clinic was ranked #3 in the United States overall out of 4,825 hospitals by US News & World Report.

Under the heading of Disease Conditions, Alzheimer’s Disease lists 124 written articles on a wide variety of educational topics including how to help your caregiver, helping children understand the disease, considering options for long term care, and, diabetes and alzheimer’s and how they are linked.

Under the Health Information header at the top of their page, a pull down menu directs you to a series of health and medical blogs including one specifically for AD. It is written and authored by Mayo Clinic Educational Outreach Coordinator, Angela Lunde. There are plenty of educational articles and reports at this web site.

The National Institute on Aging has established several Alzheimer’s Disease Centers around the United States. One of them is right in our Sacramento, California back yard. The address is as follows:

7.   Alzheimer’s Disease Center University of California Davis
www.ucdmc.ucdavis.edu/alzheimers/
This web site is designed to serve primary care doctors, caregivers, students and medical researchers. It also features links for Spanish speaking readers and African-American’s who suffer from a much higher risk of vascular disease. An underlying condition of vascular disease substantially increases the possibility of developing dementia/AD as a person ages.

The UC Davis Medical Center is located in Sacramento at 4860 Y Street, Suite 3700, Sacramento, California. An information line is set up at: 916-734-5496. Fax: 916-703-5290

If you suspect a dementia/AD problem with yourself or a family loved one, it is important to see your family doctor or primary care physician. They in turn can refer you to a neurological specialist who can arrange for further diagnostic testing to make a more accurate diagnosis.

Although Alzheimer’s Disease is the most predominant type of dementia diagnosed, there are approximately 30 different kinds of dementia, some of which, mimic or present themselves with AD like symptoms but are not AD.

Start with your doctor and medical professionals. Then start the process of educating yourself and your family more about this disease.


Jeff Dodson
July 31st 2012

Applying The Brake Pedal To Alzheimer’s?

Vancouver, Canada was the scene this past week of the Alzheimer’s Association International Conference 2012 (AAIC 2012). It was attended by some 4300 research scientists and neurologists from around the globe. The program included presentation of cutting edge drug trial findings, the latest refined diagnostic scans, and all research related to diagnosing and eventually halting AD.

Baxter International’s medication, IVIG/Gammagard, was one of the featured medications that  had its study findings presented after its successful passage through a Phase II Clinical Trial identified as NCT # 002999988. That trial enrolled a  group of volunteers numbering less than 30.

Gammagard is now about to undergo a much larger study of just over 400 enrollees who are currently being recruited at 37 study site locations in a Phase III Clinical Trial identified as NCT # 01524887.  Passing a Phase III Clinical Trial is essential prior to the next step of seeking FDA approval for Gammagard.

Gammagard is a human blood product administered intravenously.  Within each dose are the antibodies from the plasma of more than 1000 blood donors.

Gammagard works by applying the brakes to the deterioration process caused by the buildup of protein clumps called amyloid plaques. It also puts the brakes on the damage that is caused by inflammation.  It offers hope, for the first time, of long-term stabilization of AD symptoms.

What it does not do is heal or restore any of the damage already done to the brain. Neither does it bring back the memories, cognitive abilities or the executive function of the brain that have been taken away.

Two other medications that had their study results presented were Pfizer Pharma’s  Bapineuzumab, and  Ely Lilly’s drug, LY2062430, otherwise known as Solanezumab.

Sadly, in an announcement on Monday July 23rd, and just days after the AAIC Conference,  Pfizer disclosed that their drug, Bapineuzumab, had failed to meet all of the threshold requirements of passing its Phase III Trial.

I posted my first blog article about Alzheimer’s medications in February 2010. Listed among the promising new medications at the time were Baxter’s IVIg 10%, now being called Gammagard.

I went back through my AD Clinical Trial research notes from late 2007 into early 2008. At that time, I noted that some 90 new drugs were in the trials pipeline. Bapineuzumab was one of them. This drug, at the time, was listed as a humanized monoclonal anti AB antibody.

The washout rate of new drugs from the time of introduction to receiving FDA approval for the marketplace is brutal and a very long odds endeavor. In 2007 the odds were 1 out of every 1000 new medications making it all the way to market.  The timeline from laboratory to marketplace back then ranged between 12 to 15 years. The present need, in terms of the demand for dementia and Alzheimer’s medications, is for this timeline to be compressed down to something like 3 to 5 years.

Medical researchers today now have access to some of the world’s fastest supercomputers in an effort to speed up the basic research involving an astonishing number of protein molecules, neuron cells, intracellular components and cell structures, all of which must be examined in an effort at cracking the code, the armor and the camouflage of Alzheimer’s Disease.

We cross our fingers that the effectiveness of both Gammagard and Solanezumab will survive the trials and testing ahead of them in order to reach the marketplace.

The race is on for first stopping AD altogether, then, a cure. 2020 to 2025 is the present future deadline being spoken of  for such breakthroughs. That is just eight to thirteen years away.  Just 4 years ago, as previously noted above, there were only 90 new medications in the clinical trial pipeline for dementia and AD.


As of July 2012, there are now 930 new drugs in that pipeline, 200 of which are in Phase III trials.

A new medication that successfully makes it to a Phase III trial has approximately a 60% chance of reaching the public marketplace.

Our sense of urgency has started to take hold.

Now hear this: “Research scientists, Keep the gas pedal floored!”


Jeff Dodson
July 27th 2012

The Pressure Cooker

It seems like 2012 just began a couple of months ago, yet the month of July is nearly half passed.

One of our mom’s has been in a nursing facility now for just over 9 months. The other mom has been a resident at a different nursing facility for 5 years. Both were diagnosed with AD. Neither will survive the disease. At present, no one does or will. When they will finally be called home is anybody’s guess. Our Creator does not tip his hand very often.

Both dad’s still reside alone: each within their own family homes. Except that all the children are middle-aged adults, having moved out decades ago and both dad’s suffer the loneliness and the heartbreak of living apart from their wives.

Penny and I juggle the finances for both households besides our own. We handle all of the medical bills, doctor visits, minor surgeries, driving and chauffeuring the dad’s around, and, when able, assist in cleaning and helping them maintain their homes. Did I mention we also handle grocery shopping, visiting with lawyers and paying their bills as well? Oh, and I hold down a full time job in the retail home improvement industry with a work schedule that fluctuates every week.

We are involved with all of those things as we try our best to educate both aging fathers on how to attempt to take better care of their health and improve their eating habits. This can be tough for older folks who have enjoyed  decades of consuming certain favorite dishes or foods irrespective of how unhealthy it turns out that they are. Change is always possible but never easy for some.

Caregiving for 4 aging seniors is like cramming 48 hours into every 24 hour day. Frequently, it is intense, demanding, exhausting and, at times, makes you run way the hell out of patience before the sun has set for the day. Enough at times that you could easily grind a mouthful of rocks with your teeth, turning them into fine sand.

Help in terms of siblings fled the scene long ago. Not just for us. This is the reality of how it is with the vast majority of family caregivers. A health crisis strikes a loved one on the playing field of life. The next play is crucial, requiring somebody to man-up or woman-up to the challenge. Instead, most all of the players run off the field, through the stadium exits, jump in their cars and barrel out of the parking lot.  A variation of that popular quote might then read, “When the going gets tough, the whom ever, get gone.”                                              

My wife and I are IT save for a couple of very considerate longtime friends and former neighbors who chauffeur my dad up to see mom on occasion. God Bless them.

Even as we are well into our eighth successive year of doing this, we find positive meaning in what we have grown accustomed to doing.

We are not alone in our transformational journey as dementia caregivers. We have met and encountered others  in our travels. Within the USA alone, there are several million of them out there.

We have become well aware of the changes that the demands of caregiving have made with us. We worry about the stresses and strains upon our own physical and mental health while we strive to eat healthy, avoid junk food, and foods high in fat, salt, etc. Our latest interest along this line has been the works of Dr. Daniel Amen, including The Amen Solution, and, Change Your Brain, Change Your Life.

Carrying out the work of a caregiver eventually compels one to face the eventual death of a family member, or the death of a patient. If you were not a spiritually grounded person prior, you will learn to become one during the course of your mission. Facing the mortality of another also compels you to confront that eventuality for yourself.

So  what my wife and I have learned and taken to heart are the following:

1. We no longer fear death or our own eventual demise.
This will be the time that we are called home to our Source; to the place from which we originally came.

2. Though we never envisioned it when we were younger, nor even a decade ago, living while providing a service to another, putting them ahead of yourself becomes a mission you grow into.

3.  We have gained a wealth of experience and knowledge about dementia and Alzheimer’s both through our caregiving work and staying abreast of medical science and research in the field. In my opinion, a means of halting AD in it’s tracks at several points along its progression will be possible within the next 5 to 7 years.  A definitive cure will not be too much farther behind and a strong possibility by the year 2020.

Final thought
Years ago, Oprah Winfrey, became recognized on her afternoon talk show, for asking one insightful question of some of her most favorite guests. The question was: “what do you know for sure?”

What do Penny and I know for sure these days?

Our work as caregivers, though often feeling like living within a steaming hot pressure cooker pot, has, over the long run, made us better human beings. More grounded, more appreciative of small things, less materialistic and a whole lot less judgmental. We find ourselves living much more in the present instead of dwelling in the past or fretting over the future.

We like and respect who we have come to be.

For more information on Neurologist and Brain Imaging Specialist, Dr. Daniel Amen, visit his website at: www.amenclinic.com


Jeff Dodson
July 15th 2012

Grace, Guidance & Gifts: A Book Review

My review of this book is also my first introduction to the talented author, Sonia Choquette. Up to now, I had not heard of Sonia nor was I familiar with her inspiring writing and teachings. I am delighted to report that has now changed.

To begin with, Grace, Guidance and Gifts is a beautiful prayer book. After reading it from cover to cover, and, listening to the included CD, I congratulated myself for having  chosen this book as my introduction to the teachings and mission of Sonia Choquette.  Her writing and philosophy carries some of the same teachings of Spirit and Source that my other favorite authors, Dr. Wayne Dyer and Gary Zukav have offered.

Sonia has divided her book into three sections which are revealed in the book title: namely, Grace, Guidance, and Gifts. She speaks of these as the three major blessings.

This book was  crafted  to serve both as a daily prayer and spiritual healing lesson book. While it’s format was something I had not encountered before, I found that I kept coming back to the book time and again with highlighter and sticky notes, embracing what resonated for me. I also loved the beautiful background sounds and music that accompanied the meditations on the CD.

Whether you are deeply involved as  family caregivers such as my wife and I, feeling overwhelmed with a personal tragedy of some kind, or simply wish to connect with your inner Spirit and find your life’s purpose, I highly recommend reading Sonia Choquette’s, Grace, Guidance and Gifts.

The following is a link to the work of Sonia Choquette.
www.soniachoquette.com


Jeff Dodson
July 14th 2012

FTC Disclosure: I received this book for free from Hay House Publishing for this review. The opinions expressed in this review are unbiased and reflect my honest judgment of the product.

An Update On the Connectomics Project

In January of 2011, I posted a blog essay on the world of Connectomics.

Cellular nerve circuit mapping, or connectomics, began as a new field of brain science in 2007.

In the 2011 blog, a Dr. Jeff Lichtman of Harvard was noted as having just received the backing of the National Institute of Health (NIH) along with a $40 million dollar grant to fund The Human Connectome Project.

An update on progress with the HCP appears in the July issue of Neurosurgery, the official journal of the Congress of Neurological Surgeons. Neurosurgery is published by Lippincott, Williams & Wilkins which is part of Wolters Kluwer Health.

The David Geffen School of Medicine, University of California Los Angeles is now involved with connectomics work.

The Human Connectome Project entails the complete mapping of all of the neural cell circuitry pathways within the human brain. Think of it as “Map Quest for your Brain.”

Imagine, in just a few short years, your neurologist, being able to call up a detailed three-dimensional map of of all of the major, secondary and minor back road neural circuit routes within your Hippocampus and Entorhinal cortex. Why those areas do you ask?

Because these two areas of your brain are crucial to the development, encoding and handling of new memories and the dispersal of that information out to other distant regions of the brain for storage along with later access and retrieval. They also represent the ground zero area of your brain where Alzheimer’s Disease first initiates its’ bombing campaign of destruction. It starts there for everyone who is eventually diagnosed with AD.

Imagine having, in advance, one or two early life baseline scans of your Hippocampus and Entorhinal cortex. One done, say when you were in elementary school, and a second one completed when you were, perhaps age eighteen. Developmental landmark ages.

Armed with this data, your neurologist could visualize with precision the exact neural pathways either at future risk or presently under attack to then protect or defend with medications now being developed or on the drawing boards.

Or taking it a step further, how might this mapping technology offer, for the first time, the possibility of a blueprint and the glimmer of hope for reconstructing or reconstituting a mid or late stage Alzheimer’s patient’s brain: to the point of perhaps restoring that patients’ ability to form and encode new memories again and reconnect with areas of the brain the disease had cut off?

For me, this work with Connectomics represents exciting prospects for not only folks suffering from AD, but all other forms of dementia type diseases as well as people who have also suffered traumatic brain injuries from gun fire, accidental falls and automobile collisions.

This is definitely an area of scientific research that I will continue to monitor and blog on.

Connectomics links are found at:
ScienceDaily. http://www.sciencedaily.com/releases/2012/07/120702152652.htm
Brain modeling techniques gallery. http://www.humanconnectomeproject.org/gallery/.


Jeff Dodson
July 8th 2012