All of you who have been on this site for a few years remember our Phranque, whose wife died of Early Onset Alzheimer's Disease. A few months ago, he wrote to inform of us another tragedy to hit his family. His 41 year old son has Alzheimer's Disease. Below is an article written about his son and the disease. Through all his stress and pain, Phranque was the one who kept us laughing with his wit and humor. That he has to endure this unspeakable horror with a close family member a second time leaves me speechless.

To those of you who are new to the site, and do not know Phranque, I encourage you to look up his posts in the "search" section at the top of the page.


http://www.cracked.com/personal-experiences-1984-you-might-have-alzheimers-now-i-do-heres-what-i-learned.html

joang*

That link did not work for me.

Excellent article -- I've forwarded the URL to other members of my family. Phranque has a very articulate and brave son.

Found it. Our Phranque has been through so very much and now this. My heart aches for their family.

Jim, I think I read in Frank's original post that Kevin does not have children.

The term "Early Onset" refers to people who are afflicted with Alzheimer's before age 65. Only 5% of Alzheimer's patients are in this category, so Alzheimer's really IS a disease of old age. You don't HAVE to be old to get Alzheimer's but advanced age is a big risk factor. I think the tern "Younger Onset" is a more accurate term than "Early Onset" because people often confuse "early onset" with being in an "early stage" of the disease. I have even seen this mistake made in the news.

(As you can see, once I get on this vocabulary kick, it's hard for me to let go!)

Phranque, First my condolences to you . . .

"Early" is an artifact of applying research to real life situations and has created this misunderstanding. (I see it all the time in medicine)

Decades ago doctors saw people who were 'going crazy' and nobody knew why. Dr Alois was one. He followed one of these patients Auguste Deter (who was 51 years old!) After her death he discovered the plaques and tangles that we all are familiar with.

Later researchers were interested in this strange behavior but did not want their study groups contaminated with patients who had other mental diseases, so they arbitrary looked at the strange memory losses ONLY in people who were over the age of 65. (a completely made up number) This they figured would mean that they would only be studying people who had developed the "old age" related disease that Dr. Alois had discovered.

So many studies were repeated using the arbitrary age 65 as a limit to inclusion that over time people (researchers too it seems) have come to believe that "Alzheimer's Disease" only affects people over the age of 65. This is because in the medical literature it had only been identified (studied) in that age group. Remember that this all flies in the face that 'patient zero' (Alois' first case) was 51!!

Applying the concepts in retrospect means that the first person to be identified with Alzheimer's Disease had EARLY ONSET(!) This is what sorely confuses the issue.

My crusade is to have the disease that we are so familiar with identified/diagnosed as JUST 'Alzheimer's Disease'. Leave off all the stuff about what age the patient is.

My hope is that in the future the diagnosis of Alzheimer's Disease (the plaques and tangles thing) will be 100% diagnosed through objective criteria. PET scans using Amyvid, spinal taps showing increased levels of amyloid and hopefully as yet undiscovered methods, that will give a positive yes or no and EXCLUDES age as a criteria for the diagnosis.

We all know that the exact cause of the plaques and tangles disease has yet to be discovered.
We do know that in some cases it 'runs in families' so there may be a genetic component. But in other situations it just pops up out of nowhere. When you are doing research it is easier if you can follow someone who you know will with 100% certainty develop the disease you are interested in. This causes researchers to spend most more time looking at groups for which there is likely a genetic cause. However if you only study subjects that have the documented the APOE4 gene (a likely cause) then you will NEVER discover what is causing it in others for which there seems to be no cause.

We seem to have finally developed a type of Rat that will develop human type Alzheimer's Disease. (the plaques & tangles kind) My hope is that this will finally lead researchers away from the age and genetic limitations and focus on identifying the disease using only the objective findings.

Example using another disease:
My Grandmother developed sudden onset insulin dependent diabetes at age 60. (this was in the late 1950s) Just Poof! outta the blue no known cause. She had to take insulin for the rest of her life. Today we know insulin dependent diabetes as Type 1. Back then it was identified by the medical literature as JUVENILE Diabetes(!)

Even as a child nobody could explain to me why my grandmother had a juvenile disease. . . . ?

It was called 'juvenile' because in the late 1950s it was believed by medicine that ONLY CHILDREN developed insulin dependent diabetes. In the late 1950s it was believed by medicine that adults ONLY developed the type of diabetes that could be treated using pills. . . .

Only when medicine (doctors, and researchers alike) renamed the disease Diabetes Mellitus as being type 1 and type 2 did we begin to better understand the real causes and treatments of the disease.

This is my crusade for Alzheimer's Disease - strip away the old labels (early onset) so that we can focus on better diagnosis and treatment (perhaps a cure?) for everyone.

I have two daughters born into this genetic cesspool. Their grandmother was dx'ed at age 60 and my DW their mother at age 64. Every normal forgetfull moment is cause for panic "do I have it now?"