JOAN’S BLOG – MONDAY, OCTOBER 27, 2008 – JOAN AND BETTY - ON A MISSION TO EDUCATE EVERYONE ABOUT EARLY DETECTION OF ALZHEIMER’S DISEASE

I am determined to help save as many people as possible from the stress, frustration, and heartache that comes from years of misdiagnosis, incorrect treatment, incorrect medications that often make the problem worse (as in my husband’s case), and doctor shuffling, due to a lack of awareness by the medical and lay community about the early symptoms of Alzheimer’s Disease.

I am hopeful that the latest project, “Early Detection Matters” that won the $1.5 million grant from American Express, will go a long way to raise awareness of the early signs of Alzheimer’s Disease.

If you have not already done so, please read the blogs(Undetected Alzheimer's Disease- a cause of divorce) and (The Importance of Early Stage Education) that I have written about the devastating effects unrecognized symptoms of Alzheimer’s Disease can have on a marriage. In my own case, I have never experienced such deep emotional pain as when I thought the husband I had loved for 35 years, had turned into an irrational, violent, unrepentant, mean spirited stranger. Had he not had memory loss and confusion along with the behavior changes, I NEVER would have suspected AD. I still sometimes wake up in a cold sweat thinking that we may have gotten divorced over it.

Betty Weiss (“bettyhere” our Message Boards) has published two books on Alzheimer’s Disease (When the Doctor Says Alzheimer's - Your Caregiver's Guide to Alzheimer's and Dementia), and (Alzheimer's Surgery - An Intimate Portrait), has her own website, and writes a monthly Alzheimer’s related column for a senior magazine. She has generously allowed me to publish her upcoming December column about Early Detection in this blog.

ALL ABOUT ALZHEIMER’S:  Early Detection Matters                                                     
By Betty Weiss 12-08

Nobody knows when Alzheimer’s really begins, but it is certainly there years before—if not decades before—the bizarre behaviors come raging out and it’s apparent that ‘something’ is terribly wrong.  There are documented cases of people in their 20’s and I think my husband was one of them—not documented, of course; in the 1950’s few even knew what the word ‘Alzheimer’s’ meant. 

Ours was a traditional romantic love story; we had every reason to live happily ever after, growing old and fragile, walking hand in hand slowly into the sunset.  We traveled married life closely together but each on our own path.  He let me be me, I let him be him.  If he was quirky and sometimes preoccupied, I knew it was stress, problems at work, whatever.  He was always there for me and the kids, life was good.  But when others asked ‘why did he say that?’ or ‘why did he do that?’ I’d get annoyed and say, ‘why ask me, ask him?’  I just didn’t see anything wrong.  Well, that’s not quite true; I’d see fear and terror in his eyes from time to time although he was the bravest man I knew.  We all have our little nightmares, but not like what I saw and he would never confide in me.  Fifty years later, I know Alzheimer’s was always there, I just didn’t recognize the warning signs.  But he knew ‘something’ was wrong and was terrified because he was losing his mind.  For years I’ve felt this way alone, most don’t believe me.

But a man named Jay Smith does.  Smith says, “It took more than two years for my wife to obtain a correct medical diagnosis, so we decided to do everything we can to increase early detection of Alzheimer’s…to help others along the way”.  His wife, Patty, is only 51, which means she obviously had it for some years in her 40’s.  Smith submitted his Alzheimer’s Disease: Early Detection Matters project to American Express.  The card company had conducted a campaign to determine which medical project should receive research money.  All applicants were worthwhile, but Smith received the most card member votes.  The Alzheimer’s Association will receive $1.5 million from American Express to implement the early detection campaign.  Way to go, Smith!  And kudos to American Express.  

Early detection is critical and incredibly difficult to recognize—even by experts.  Such knowledge, years before it is even suspected, will lead to knowing how to live with and understand many of the hidden complexities of the disease and, hopefully--hopefully, slow its progression, if not find a cure or prevention.

Projects in the pipeline may lead to early detection and possible development of pharmaceuticals to slow the onset.  Blood test are being worked on that can show a predisposition to Alzheimer’s and even distinguish between Parkinson’s, Alzheimer’s, Lou Gehrig’s disease or tell whether a patient is disease free.  Blood draws are done with relative ease.  There is less discomfort and costly expense than spinal taps, which is typically the way markers may be found in the plasma of early Alzheimer’s patients.

Computers are being used to read brain scans to diagnose Alzheimer’s faster and more accurately than clinicians.  They can distinguish between Alzheimer’s patient’s scans and those with other forms of dementia, such as frontal-temporal dementia.  Early accurate diagnosis can greatly improves chances of effectively slowing deterioration.  

Another early detecting tool is a brain-imaging method that employs radioactive dye injected into the blood stream, it then travels to the brain and attaches to plaque deposits believed to cause Alzheimer’s.  The dye makes the plaque look yellow on the scan so that it’s readily seen.

Even our eyes are being studied.  There is an optical test that can determine the presence of the same markers found in the brain of Alzheimer’s patients that are in the lens and fluid of their eyes.  None of these research projects are 100% positive, only an autopsy is proof positive, and no one knows which will be effective or what others may come along.  But it is an indication that the Alzheimer’s community is coming to understand that this vicious disease is living with us years before we even suspect its presence.                  

Ten Warning Signs – What’s normal and what’s not.  Don’t panic!  Statistics are on your side.

1. Memory loss:  Forgetting recently learned information is one early sign.  It becomes more frequent and the person is unable to recall the information later.  Normal:  Occasionally forgetting names or appointments is common, but when you remember them later, it’s not Alzheimer’s.

2. Difficulty performing familiar tasks:  It is hard to plan or complete everyday tasks.  People lose track of steps to prepare a meal, use the telephone or play a game.  Normal:  Occasionally forgetting why you came into a room, where you parked your car, or a word, is not Alzheimer’s.  Stop worrying!

3. Problems with language:  Those with Alzheimer’s will often substitute different words for a forgotten one.  A toothbrush becomes ‘that thing for my mouth’.  Normal:  Sometimes having trouble finding a word is OK.  It is estimated there are anywhere from 700,000 to a million words in English, more than any other language.  Give yourself a break!

4. Disorientation to time and place:  It’s easy to become lost in your own neighborhood, forget how you got somewhere and not know how to get home.  Normal:  Forgetting the day or where you’re going on occasion is why we have calendars and a GPS.    

5. Poor or decreased judgment:  Wearing layered clothing when it’s hot or shorts and a tank top when it’s cold, giving away money to telemarketers or someone on TV is not good.  Normal:  Making a questionable or debatable decision from time to time is really embarrassing, but at least we know it!

6. Problems with abstract thinking:  Those with Alzheimer’s have trouble with mental tasks, like not understanding what numbers represent or how they are used.  Normal:  Finding it challenging to balance a checkbook or do your own taxes.  You’re competing with computers for goodness sakes.

7. Misplacing things:  Someone with Alzheimer’s may put a garden hose in the clothes hamper, a cell phone in the microwave.  Normal:  Misplacing eyeglasses or keys is common.  I have at least five pair of eyeglasses around the house and sometimes I still have trouble finding one.  

8. Changes in mood or behavior:  Someone with Alzheimer’s may show rapid mood changes for no apparent reason—calm to tears to anger.  Normal:  Nobody’s life is always smooth; we all have our moments, but usually know why.

9. Changes in personality:  It’s common for them to become suspicious, fearful, confused, dependent and cling to the person closest to them.  Normal:  Sometimes experiences in life can change our personalities as we age.

10. Loss of initiative:  Alzheimer’s people can become very passive, sit in front of the TV watching test patterns, sleeping a lot, not wanting to participate in activities.  Normal:  Sometimes work or social obligations are a pain, but we usually follow through anyway.   

To learn more about Alzheimer’s disease please visit: www.geocities.com/caregiving4alz.  Betty Weiss is the author of the best selling book When the Doctor Says, “Alzheimer’s”: Your Caregiver’s Guide to Alzheimer’s & Dementia and Alzheimer’s Surgery: An Intimate Portrait.

Allow me to jump in again and say that in my opinion and experience, the three most misunderstood early symptoms are #8. Changes in mood or behavior – when a mild mannered person starts alternating from angry, combative, irrational, verbally abusive, and then remorseful, it needs to be evaluated promptly; #9.Changes in personality – similar to #8; #10.Loss of initiative – Very often diagnosed as depression, especially in younger people.

I want your ideas – what can each of us do to raise awareness of early detection of AD? This website is my forum, this subject is one of the topics of my speaking engagements, and I will be bringing this topic to lawmakers’ attention on my next trip to the Alzheimer’s Forum in Washington DC in March.

Message Board Topic: Joan and Betty – Raising Awareness of Early Detection

©Copyright 2008 Joan Gershman

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