Aricept and Namenda from Day One -- This is my Belief

If I knew what I knew today, I would have put my mother on Aricept and Namenda the day she was diagnosed. This is not a crazy idea. There is high quality research to back up my belief.

By Bob DeMarco

I'll start with this disclaimer: I am not a doctor, nor am I a scientist.

Here are my credentials.

I have read thousands of article on Alzheimer's and dementia in the last six years. I also read many of the currently available books. I have written more than 1,200 articles about Alzheimer's on this blog and my companion blogs.

So far, I have lived Alzheimer's from the front row for over six years; while caring for my mother, Dorothy, who suffers from Alzheimer's disease.

I think about Alzheimer's every day, I live with Alzheimer's every day.

Right here in Delray Beach, I watched as 14 people developed full blown Alzheimer's. You can add two cases of Parkinson's disease. I see how it effects families and the persons suffering from Alzheimer's disease.

Alzheimer's is everywhere. Last year a Harris interactive poll indicated that more than 100 million American's have been touched by Alzheimer's. I am certain the number is growing and growing fast. Every 70 seconds someone is diagnosed with Alzheimer's disease.

Recently, I estimated that 154 people are diagnosed with Alzheimer's while a typical New Yorker is commuting to and from work. Each week, 8,634 people are diagnosed with Alzheimer's.

I find myself asking, why is Alzheimer's disease so hard to diagnosis and why can't doctors do it effectively. The numbers are not a secret in the medical community.

When a person enters the earliest stage of dementia -- mild cognitive impairment -- friends and family are likely to conclude that it is just the result of getting old if the person is elderly.

It is now my belief that when a person is cognitively impaired that it is the time to put the person on Aricept or one of the other cholinesterase inhibitors. I might even go a step further. Based on research I read, I might even recommend Aricept and Namenda in combination.

Let me make this clear. If I knew what I knew today, I would have put my mother on Aricept and Namenda the day she was diagnosed. This is not a crazy idea. There is high quality research to back up my belief.

"The results of this study should change the way we treat patients with Alzheimer's disease. Cholinesterase inhibitors are approved for use in mild to moderate dementia, while memantine has been approved for advanced dementia. But it looks like there is an advantage in prescribing both drugs as initial treatment."--John Growdon, MD

See -- The Combination of Aricept and Namenda Helps Slow the Rate of Decline in Alzheimer's Patients.

In the last month, five people have been referred to me. They told me they are starting to worry that they might be suffering from an early stage of dementia. In the past I might have been reluctant to say what I am going to say today.

I will now say every time --get your memory tested. Not by your personal care physician. But by someone, or some group that specializes in memory testing.

In my case, the first thing I would have done is call the Wellness Center at Florida Atlantic University. They do memory testing. If you are near a major University call and see if they have a wellness center, or a group that is doing research in the area of Aging. This is where I would go first.

If this is not available I would seek the help and advice of a top notch geriatric care manager. If you know or are related to someone that knows a top notch neurologist, I would seek their help and get a memory test.

Here is what I wouldn't do. I wouldn't wait around. I have seen people fall right off a cliff when suffering from an undiagnosed dementia.

Here is my special advice to spouses and children, if you suspect a memory problem and are worried -- take action now. You can sit back and wait and see what happens, but it could be too late when you finally get the feeling that you cannot wait any longer.

Consider this, not only will you be hurting your loved one by failing to take action, you will be hurting yourself. The situation will worsen and you will suffer accordingly. If you are hoping that it is not dementia consider this -- consider what your quality of life if going to be like if you sit around and wait. If you fail to take action -- now.

I have yet to meet an Alzheimer's caregiver that didn't admit that they should have or would have taken action sooner. That they would have taken action sooner if they knew. If they knew Alzheimer's was on the horizon, and if they knew what to do.

To conclude. Worried? Only a bit worried? Get a memory test from a specialist or specialized group. If the diagnosis is mild cognitive impairment or worse--

Consider getting on the combination of Aricept and Namenda from day one.

Also consider, there are new Alzheimer's drugs in the pipeline, like Dimebon, Bapineuzumab, Solanezumab,and IVIg that might be more effective than the drugs that are currently available. You want to delay the progression of Alzheimer's as long as possible. These new drugs might make a difference.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Creutzfeldt-Jakob disease (Video)

By Bob DeMarco

Creutzfeldt-Jakob disease (CJD) is a rapidly fatal disorder that impairs memory and coordination and causes behavior changes.

“Variant Creutzfeldt-Jakob disease” is believed to be caused by consumption of
products from cattle affected by “mad cow disease.”

Creutzfeldt-Jakob disease is caused by the misfolding of prion protein throughout the brain.

Steve, a California physician, whose wife spontaneously developed CJD, shares his experiences with the public. CJD is a rapidly progressive dementia whose study may yield important insights about other, more prevalent dementias. We thank Steve and his children for sharing their stories. Their contribution has contributed to a growing awareness about CJD.


Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. It affects about one person in every one million people per year worldwide; in the United States there are about 200 cases per year.

CJD usually appears in later life and runs a rapid course. Typically, onset of symptoms occurs about age 60, and about 90 percent of patients die within 1 year.

In the early stages of disease, patients may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.

Also see National Institute of Neurological Disorders and Stroke

UCSF Memory and Aging Center Channel

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Alzheimer's: Mom Didn't Laugh for Two Years and it was Killing Me

My mother, Dorothy, did not laugh for over two years. It was "killing" me....

By Bob DeMarco

Max wrote about the last great big laugh he heard from his Great Grams. It was obviously vivid in his mind. See The Plaid Pajamas and the Last Big Laugh.

This reminded me of one of the saddest periods in my life. My mother didn't laugh for over two years. She rarely smiled during this period. Severe heartache, it hurt.

I would look over and there would be mom. The glassy eyed look, the stare into what must be either confusion or "nowhere". The look of Alzheimer's and dementia.

Then the day came. I picked up the bible, the Alzheimer's Action Plan, and I started reading through some of the pages I had dog eared. Page 82, The Less Than Trusty Thyroid. I read,

"Get your thyroid tested. Nearly one in five people over the age of sixty has some degree of hypothyroidism, meaning a sluggish thyroid. The sympotms include forgetfulness, weight gain, depression, dry skin, intolerance to cold, muscle aches, and fatigue. People who are hypothyroid feel as though they have mild Alzheimer's and depression all mixed into one bad day."

My mother had five of the seven symptoms listed above.

I took out my doctor's notebook. The notebook I use to keep track of everything that goes on with my mother from day to day. The headaches, her temperature, complaints, attitude -- I call this part the diary. I made a note in the doctor's section to bring up hypothyroidism to our personal care physician. I did just that at the end of our next doctor's appointment.

Dr. Chiriboga was wonderful. He didn't give me the doctor look and talk, "what you read a book and now you are a doctor." He didn't act like I was questioning his capability. He listened and said, "lets check her thyroid". Blood test.

Seven days later we were back in the doctor's office and he said -- "the results look suspicious." She didn't actually test positive for hypothyroidism, but the result was just barely above the level defined as hypothyroidism. He then proceeded to tell me how we were going to take a cautious approach. He gave me all the caveats, prescribed the mildest dosage of thyroid medication, and told me we would test her blood in a month to make sure we didn't give her hyperthyroidism with the medication.

A couple of days later my mother laughed. I jumped up when I heard the laugh. I ran over to find out what was going on. Seinfeld, Kramer. Kramer made my mother laugh. I was so elated I felt like I could fly. Soar.

From that point on things just got better and better. My mother not only started laughing, she started smiling. She actually thanked me when I cooked for her. When I asked how food tasted she actually gave me a review rather than the standard --OK.

This development lead to my decision to find a way to get her out into the light, to get her into restaurants, to get her socialized. The more we did the better her life. The better my life.

Believe it or not, it was not unusual for us to go out at 6 PM and come home after 11 PM. My mother was the one that wanted to stay out. She had more energy and more LIFE.

Ok, advice and lecture time.

Get the thyroid checked. By the way, if your loved one has too much energy it could be hyperthyroidism. If they are dull, depressed and lacking in any kind of emotion, it could be hypothyroidism.

Now you might not get a miracle like we did, but it is worth the effort. Feel free to take this article with you to the doctor. If he refuses to give you this simple, cheap blood test -- go get yourself a competent doctor. Please note: not all personal care physicians routinely include the hypothyroidism panel then they send an elderly person for a blood test. Additionally, they might not check the numbers if a red flag doesn't come up with the test results. Like I mentioned, our doctor described the test result as -- "suspicious".

Now when I look at my mother and she has that glassy eyed stare into what must be either confusion or "nowhere" -- it makes my heart feel warm. Why? Because I learned by taking action -- "More there."

Instead of heartache, I get that warm, fuzzy feeling.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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Reader Comments Put Me In Focus and the Guru Energizes Me

Two heads are better than one. Soon we will have 2,000 heads. I call this the "collective brain" of the Alzheimer's Reading Room....

By Bob DeMarco

On Saturday I wrote A Virtual Alzheimer's Support Group. The article was about my goal to promote more interaction in the comments box below the articles.

I received several excellent comments from readers on how this might be accomplished. I replied to each of those comments under the original article.

One of the best comments was about the location of the comments box. I moved the comments box up so that it is easier to find. We will see what happens.

I did receive a lot of encouragement about my idea of trying to create a virtual support group. In addition to the comments, I received 11 private emails. I believe this is wanted. I might take this concept on to Blog Talk Radio.

I'll try something soon and see how it goes. I am considering starting a weekly feature where readers ask the questions, and then we "bat them around in the comments section." We could then turn the feedback into an article that would be easier to read and review. I am open to suggestions and advice.

I'll try to figure out how to get more readers to suggest topics.

Back to the feedback, this came in the form of a private email. We have an "Internet guru" that comes to this website for an obvious reason -- touched by Alzheimer's.

Here is what I learned. First, in fact this website has a very high level of reader interaction. While the raw number of comments appears low, in fact it is high based on the number of visitors and page views. I guess you could say, I was comparing the number of comments to websites that are much larger than the Alzheimer's Reading Room and that have been in business longer.

The guru went on to point out that I should be comparing an apple to an apple.

A different reader mentioned a larger website that seems to have more interaction. In fact, that website received $5 million in venture capital funding, and has 12 times as much content. Their ratio of comments to readers/page views is less than one fourth of what we have here on the Alzheimer's Reading Room. They are bigger and well funded, they are not more interactive based on this metric.

So while 12 comments is more than 8 comments, when compared to the number of visitors/page views as a ratio -- 8 is more.

The guru also mentioned that the Alzheimer's Reading Room is 475% bigger than the average of comparable websites in our Google benchmark. Google establishes the benchmark, not me. I did know this by the way. Thanks to all of you for reading.

We are much higher in every category with one exception -- pages visits per unique reader. The guru informed me that all I needed to do was publish twice as many articles a day, and this would reverse itself. In other words, if we had more to read each day it is likely that a fraction of the readers would read more pages and the number would go up.

The bottom line. I was a little disappointed when I wrote about the number of comments. But, now that I understand the facts and dynamic, I am extremely happy and re-energized.

Having said all of the above, I want to make one thing clear -- this is about the readers. Without you this place would not exist. Pretty simple when you think about it.

The result of this endeavor taught me this:

• We do need to try and incorporate a group support feature into the Alzheimer's Reading Room.
• I need to find a better way to make the existing articles available to new readers that come into the Alzheimer's Reading Room. A table of contents won't work. There are almost 1200 articles. We have a search box which is designed to help readers find information.
• What I need to do is break the articles down into categories, and then get them over on to the sidebar as topics. For example, if we had a topic named "Incontinence" and a reader wanted information on incontinence they could click on the link and get everything we have. One click to all the information on a given topic (this comes directly from a reader suggestion).
• I need to improve the way the website can be navigated.
• I need to unleash the "collective brain" of the Alzheimer's Reading Room as I have promised to do many times.
• I'll accomplish this by bringing on more writer/contributors, I'll have them share their experiences and advice with us. Let me make this clear, these newbies are people that are already contributing to the success of the Alzheimer's Reading Room. It is not my intention to recruit anyone that is outside the "collective brain". I will leverage our "collective brain" now.

I learn daily from existing readers that have vast amounts of life experience outside my own frame of reference. Its time for me to try and unleash that experience and bring it on to the Alzheimer's Reading Room. I email existing readers all the time for advice. I use this advice to answers email requests that are beyond my own "frame of reference". I now understand that I should have been publishing their emails as free standing articles. The advice is often exceptional.

This does mean more content and change on the Alzheimer's Reading Room. I understand some readers won't like this. I also understand that I can't expect every single article to be a home run, or useful to every single reader. When I read a magazine I only read the articles that are of interest to me. I want the information I read, and I try to put it to good use.

I believe that from time to time we will get that "home run" article that really is helpful to readers -- both stay at home caregivers and experts in the "field". More brains means more useful information, means more "home runs."

To be honest, I never know how readers are going to react to a given article. Sometimes, I write an article that I think is fantastic and important -- result, nothing happens. Other times, I write something that I am not really happy with and the comments box explodes. Go figure.

The above means I still have a lot to learn, and learn I will.

So, I hope you'll stay as we makes some changes. I'll do the best I can to make good decisions. I'll continue to ask the readers for help and advice.

Two heads are better than one. Soon we will have 2,000 heads. And that my friends equals the "collective brain" of the Alzheimer's Reading Room.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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The Plaid Pajamas and the Last Big Laugh

It was the last time I heard that laugh. Maybe it was the colorful plaids. Maybe it was how ridiculous Grandpa looked. Maybe it was because we all thought it was funny and she shared our emotions.....

By Max Wallack

In an article in the Vancouver Sun, Douglas Todd contemplates on how his mother picks up on and reflects his emotional state. He decides that the best thing he can do for his mom is to stay in a good mood.

Douglas Todd says,

“Since my mother’s own Self is so fragmented, she adopts the emotions of whomever is with her, especially if it is someone with whom she may possibly, unconsciously, remember is her son.”

Reading this made me remember the last time that I heard Great Grams laugh. I mean REALLY laugh.

Great Grams had always had a very jolly laugh. When she thought something was funny, and she started laughing, she almost couldn’t stop. Tears would come to her eyes, roll down her cheeks, and she would still be laughing. Sometimes, she would stop for a minute and then burst out laughing again.

Once dementia took hold of Great Grams, we didn’t hear that laugh very much anymore.

Then, one day there was a sale on pajamas at a nearby store. Grandma found some in Grandpa’s size for only $5, and they were the nice soft cotton flannel that he liked. She bought them.

Let me describe the pajamas a little further, and you will understand why they were $5. They were plaid – all different clashing plaids. The collar was one plaid, the left and right arms each a different plaid. The cuffs were of a different plaid. The bottoms were different plaid on each leg and the fronts of the legs were different plaid from the back. Even the pockets were different plaid patches. It was as if someone had used all the left over patches of plaid material to make these pajamas.

Try to imagine what the pajamas looked like.

That night, Grandpa put on his new wild and crazy pajamas and came downstairs. We all looked at him and started laughing. Great Grams was laughing the hardest. She was laughing her laugh of years before. She was laughing the laugh of who she really was.

It was the last time I heard that laugh. Maybe it was the colorful plaids. Maybe it was how ridiculous Grandpa looked. Maybe it was because we all thought it was funny and she shared our emotions.

I don’t know what it was, but it was a good day. I remember that is was a good time.

To read more of Douglas Todd’s article go here.

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Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

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Original content Max Wallack, the Alzheimer's Reading Room

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