Sunday, March 22, 2009

Alzheimer's Would you take the test?

I read this Forbes article--Do You Really Want That Alzheimer's Test? The article discusses a new test for Alzheimer's that is 87 percent accurate in diagnosing the disease early.

Near the top of the article I read this quote:
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark Smith, a professor at Case Western Reserve University who has been an influential thinker when it comes to the disease.
I decided to answer this question from my own personal experience.

Dear Mark,

When my mother first started to exhibit some strange behaviors I became concerned. So concerned that I quit my job and moved in with her. It took a year to get her properly diagnosed. She was suffering from Alzheimer's dementia. During that first year, I rejected depression medication and anti-psychotics. During that first year I was frightened, but not nearly as frightened as my mother. It took one year to get my mother diagnosed Mark. So, this is my first point--yes we would have taken the test if it was available.

It would take me a million words, and I am serious, to describe that first year. My mother said things to me that made my blood boil--words that I had never heard come out of her mouth. A wonderful woman that everyone loved and admired-- turned meaner than a rattlesnake. Some of the things she said to me were so horrific I would never put them in print. It wasn't only the words. My mother was fainting, falling down (she broke her finger on one fall), and doing all kinds of crazy things--like starting to clean her home every night at around 9:36 PM-- give or take a few minutes. Mark, my mother never smiled or laughed once during that first year. I could go on and on.

Even before she was diagnosed with Alzheimer's it was apparent my mother was suffering from some form of dementia. You might find this amazing, but none of her first three personal care physicians diagnosed dementia. At the time, if you met my mother on a park bench you wouldn't get a clue. If you lived with her--different story. Dementia is a sneaky disease. It sneaks up on you. If you take the test--maybe not.

Since I had no prior experience with Alzheimer's or dementia I was never really certain what was going on with her. It was a long hard search. It took all of that first year. We finally found a competent personal physician that was well schooled and informed about the symptoms of dementia and knew what steps to take. If the test had been available we would have averted a long year of stress, angst, trial and tribulation.

During that first year, I started to read about Alzheimer's, dementia and caregiving. It took me months before I realized--I am a caregiver. I continued reading over the years, I read thousands of articles on the Internet about Alzheimer's, and every book I could get my hands on. This is what I believe you do when you find out its Alzheimer's, Mark. You get educated, you get out in front of the problem, and you make this decision--fight.

That first year went by like a New York minute.

Once I started to understand what needed to be done we went to work. We changed our lifestyle.
  • The first thing I did was get my mother on Aricept.
  • The second thing I did was enroll my mother in a gym for the first time in her life--at age 87.
  • I put both of us on an excellent diet--more or less the Mediterranean diet (although my mother still eats potato chips and other junk food--I had no intention of putting her in prison--any kind of prison).
  • We started taking vitamins, anti-oxidants, vitamin e, folic acid, omega fish oil, flaxseed oil, and a long list of supplements. Oddly, all but ginko balboa.
  • We worked hard with our doctor to get her cholesterol, blood pressure, and triglycerides under control.
  • One by one I introduced all these helpful things into my mother's life: bright light, socialization, good communication, and a very secure environment.
Of the above, I continue to believe that exercise was the best and most important decision. I believe that Aricept slowed the development of the Alzheimer's. I learned that if I kept my mother in bright light and around people she had a better day. Put it all together and it started working.

I clearly remember the first time my mother laughed--after two years. Now she laughs and smiles all the time. Funny, how something you take for granted can become such a wonderful experience.

As for me, I can't remember how I was feeling near the beginning. But, I think during that first year I was overwhelmed, frightened, scared, angry--but never in denial. I wanted to know, and I wanted to take action. The test would have benefited us.

My mother is no longer mean. She has not fallen down in over four years. Not a single trip to the emergency room in four years. Don't get me wrong, we still have our wild and crazy moments that come with Alzheimer's. It can be very stressful and disconcerting at times. This is the life we live. But, we are living our life. We are able to live this life because we got a diagnosis. It has been almost 6 years and my mother is still going out to dinner, the gym, and into the bright light. If we sat back and did nothing what do you think she would be doing now?

It is my belief that early diagnosis leads to better outcomes. It has for us and it will for many--but not everyone. So unlike Mark, I think you need to know. You should know. And like me, you will decide what to do about it. But let's put it this way, you can put your head in the sand, or you can control what you can. Everyone gets to make their own decision--I believe.

My mother and I now live a wonderful life. I know it is going to get ugly--I know this because I decided to get out in front of the Alzheimer's curve. I know what is coming. We will deal with it. I'll gather the strength to deal with the ending stage by knowing we fought from day one. I'll know forever that I did everything that was possible; and believe it or not, that is one wonderful feeling.
Smith, though, questions the need for such tests when the industry is still years, if not decades, from any sort of treatment or cure. Diagnostic tests could make people sick with worry if they have to find out years in advance that they are going to come down with this unpreventable disease.

"This breakthrough is very exciting," says Smith. "Yet, these tests will only become popular if they are associated with a treatment strategy."
Mark, I'll take the test. In the meantime, I'll do all the things that can help slow the disease or possibly delay its onset. I am reminded of Magic Johnson, who was diagnosed with HIV--18 years ago. He decided to fight.

It says in the quote your are "an influential thinker when it comes to the disease". I would rather not say what I think about your influence, or did I already? In the meantime, I'll hope and pray for a treatment for the disease--it could come at any time--and maybe not to late for those that decide to fight.

For those of us predisposed to Alzheimer's by birth--I have written extensively about what you can be doing to take better care of your brain. You fight off Alzheimer's for a year or two or three...well don't ask me, think about Magic Johnson.

Mark, you are more than welcome to come in here and respond.
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Scientists Report Important Step in Biomarker Testing for Alzheimer's Disease

This comprehensive analysis allowed the scientists to systematically confirm earlier studies on cerebrospinal fluid findings and to develop biomarker profiles that may signal the onset of the disease. Among their findings:

  • Levels of beta-amyloid protein, in particular beta-amyloid 1-42, were lower among ADNI volunteers with MCI compared to those with normal cognition, and lower still among those diagnosed with mild Alzheimer's disease. Decreased levels of this biomarker in the cerebrospinal fluid may indicate that this least soluble form of amyloid is forming sticky plaques between neurons, a hallmark of Alzheimer's.
  • Levels of beta-amyloid 1-42 proved to be the most sensitive biomarker, with an overall test accuracy rate of 87 percent in detecting Alzheimer's pathology in the ADNI volunteers and in people with autopsy-confirmed Alzheimer's.
  • Levels of tau were higher among ADNI volunteers with MCI than among people with normal cognition, and even higher among the volunteers diagnosed with mild Alzheimer's disease. Tau, a protein released by damaged and dying brain cells, can form tangles within cells and may prevent neurons from communicating with each other.
  • In addition to cerebrospinal fluid biomarkers levels, the researchers factored in a known genetic risk factor for Alzheimer's disease — the gene APOE-e4 — into their analysis. The gene occurs in about 40 percent of all people who develop Alzheimer's at age 65 or later, but how it increases risk is not yet known. ADNI volunteers with APOE-e4 genes, high levels of tau and low levels of amyloid were most likely to have mild Alzheimer's.

Bob DeMarco is a citizen journalist, blogger, and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of IP Group, and a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy, who suffers from Alzheimer's disease. He has written more than 500 articles with more than 11,000 links to his work on the Internet. His content has been syndicated on Reuters, the Wall Street Journal, Fox News, Pluck, Blog Critics, and a growing list of newspaper websites. Bob is actively seeking syndication and writing assignments.

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