Wednesday, February 5, 2014

Dementia, probably the Alzheimer's type?

"You have dementia. Probably of the Alzheimer type." Does that ring a bell? You will hear many patients say this. "I have dementia, probably of the Alzheimer type."

Why? because that has been drilled into their head since their diagnosis. I never say that, that I have dementia, probably of the Alzheimer type, yet to some they wear that saying like a badge of courage. And on top of that, now we now have "genetic testing".

My take on any genetic testing is whoey. I suppose there is some real good testing that comes from this. Maybe even some data. But to use it to predict someone will get dementia? Whoey.

My take is that is it too early yet. How can someone, anyone tell you that you are more likely to get dementia, of whatever form, yet they know so little about the disease as it is???

As always these are just my thoughts. Many will disagree and that is fine. But as a patient, I can tell you unequivocally that not one doctor I have seen in the last five or six years has any answers for any part of this disease.

When I hear about genetic testing for dementia, I just think that it's a educational guess at best.

Here's one thing I base my thinking on. No one, not one person dating back as far as we can trace my heritage has had or ever dealt with dementia.

Now does that mean my great-great-great-great granddad didn't have dementia or some form of it? Of course not. What it means is all the data they have they only started collecting say 20 or 30 years or so ago.

Yet, of course I have Dementia. Does that mean my son is going to get dementia. No. What it means at best, is he stands a greater chance than say my wives nieces do.

To me their is way to much testing on things that simply don't matter. Genetic testing in my opinion is one.

Getting some sort of tests that claim you have a better chance of getting dementia is just borrowing sorrow.

Again, the only way they can even determine 100% accuracy if I even have dementia is by an autopsy of the brain.

Yet, someone, somewhere comes up with a genetic testing that can tell you your probably of getting dementia.

I can do that. There is a 50% chance you will, and a 50% chance you won't. I suppose if this horrible disease runs in your family, then your odds are increased dramatically.

But to say "You have a very good chance of being diagnosed with dementia say in the next ten or twenty years" is to me absurd.

I have a very good chance of hitting the lottery in the next ten years. Or getting hit by a bus, or drowning.

Any one can predict anything. It certainly doesn't make it so. I just don't think its healthy for anyone to worry about getting something, in this case dementia, when no one knows.

It's the brain. The most complex organ in the body. If someone tells you they can give you a estimation of if you will get this disease, then they are indeed psychic. Because no one knows about this disease today. Let alone what will happen to you or anyone else in the next 20 years.

To me it's like predicting weather. "There's a 60% chance of rain all next week." So. There's a 40% chance that it won't rain at all.

Again this is just my take on genetic testing. I don't agree with it. I had dementia for at least five years before being diagnosed. And then it was "You have MCI/Early On-Set Dementia, probably of the Alzheimer type".

And that came from the leading Neurologists at The Ohio State Medical Center. He was not just some doctor. He was the head of the cognitive unit.

They always say "probably", cause they don't know. If they were certain does anyone think for a minute they would include the word "probably". Probably not.

But yet pay attention to how many patience say "probably" of the Alzheimer type. Especially those who are or do speaking engagements. Or try to bring Awareness to this disease.

For whatever reason they all say "probably". It's like code or something. Today in another post I used the word "probably" just to see if anyone would catch it.

Never once have you heard me say, here or in any of my speaking engagements that I have dementia, probably of the Alzheimer type. I think just saying that makes you sound like either you or your doctor don't know what you are talking about.

So when I say I have reservations about genetic testing, I have reason to be. And I have dementia. Period.