Monday, October 03, 2011

What do they know about Alzheimer's really?

I was reading best I coudl an artickle in AARP to day called: Diagnosing Alzheimer's by Katharine Greider. Interesting a lot about nothing, they know they have no tests or real meds to help us, gosh what a fricken surprise.  A Quote; "But scientists don't yet understand exactly what various results of biomarker tests mean for each patient or how they can be used to predict a patient's future. (i typed this from the article.)" Eli Lilly has a drugg Amyvid which is an injectible radioactive dye to stain amyloid deposits for use in PET Scans which may help.  quote from article: "The drugmaker says Amyvid would be for old people with mental decline wose diagnosis is uncertain." you judge that one. This is the best part of the article and only part that is truly reaal in my opinion.
"It will likely be many years before any test can predict precisely who really with get the disease, and when," says Frances, who has helped establish guidelines to iagnose mental disorders. "In the meantime, there will be lots of continued hype about progress in testing," hes says. "The best thing mos people can do is simply ignore it. Instead of worrying about Alzheimer's you should make sure to exercise you mind and body, eat well, don't drink too much, and enjoy life."

Exactly waht my neuroligist a number of years ago said to me, except she said dump the meds they are not going to stop anything. Keeep my shrink so he coulc give me the mental calming drugs and mode stabilizers I would need. And enjoy the time I had left.

Now to those who keep telling me just because you forget placing your glasses, keys, appointments, pens, etc. does not mean you have Alzheimer's. CORRECT, but when you do all these things daily, you have a fricken problem, bub.

I am now entering year 7 and the physciall parts are taking hold, no balance, bladder wants to be on self control, forgetting my meds, needing to hold the walls to walk, back brace so I am not in pain, meds increased to help with symptoms, may even have my ow Scooter Chair soon to I can go shopping and not die in the middle of the store, because I am in pain cannot walk, people just need to disapear, sweating getting confused (some fun). I truly hate it when people tell me hang in there it will be ok. Fuck it will not be ok I am dieing. That is ok, this is just not the way i planned things.

Well till next time take care of yourselves.

God Bless & Keep You & This Country of Ours!


Karen said...

So I won't tell you that it's going to be OK. :) You are dying, albeit a lot slower than you'd like. Not what you had planned for this part of your life. But it will be 'OK', in that your family seems to continue to put up with you. You won't be alone, and you'll get the best care, as you are now. I'm a lot younger than you, they think I have vascular dementia but they can't diagnose it yet. I have no family other than my kids, and they're young. I HOPE that they will never have to be responsible for my care, because by the time they could, I would definitely be in a nursing home.

So it could be worse. But that's not the point. The point is, that what helps me is to help other people, who are in worse shape than I am. Yes it makes me realize that it could be worse - but mostly it makes me feel needed and useful. It also gets me out of the house, interacting with people and not being bored. I'm sure you're depressed, you have every right to be. But getting out of your own head sometimes might make all of this easier to bear.

I hope I'm not speaking out of turn. What do I know, I just saw you on TV. But think about it. You can't control what this disease does to you. You CAN control, a little bit, how you deal with it. What can you do for YOU, that might also help others at the same time?

JUST A MOM said...

You get to REdefine "NEW NORMAL" almost daily and hey your not goin out as you planned but look how many people get to benifit from it. Now when you get the scooter please for everyone ELSES sake keep it on the TURTLE.... :^) have a day Joe,, good or bad or forgotten ya still have one.

Ann said...

Thanks for some good old fashioned honesty and perspective on the "other" side of this disease. True, you're not going out as you planned, and true, it's not what you want. We seldom get to choose our own deaths, actually. But you DO get to choose, to some extent, how you deal with it. It seems to me that you are dealing with it in a very practical way. You kept the psychiatrist, you're keeping the tools (read: meds) and you are maintaining this blog, which is helping A LOT of other folks too. That's not a bad way to go, if in fact you gotta go...
It's a terrific blog, Joe. I am real glad you posted on our site so that we found out about you. Thanks much.

Social Worker at Alzheimer's Weekly

Anonymous said...

I appreciate your honesty and sense of realness in the situation. We all have to go somehow right. I am happy that you seem to be dealing with this in a very practical manner. Sometimes when you don't have a choice or say in things, you just have to keep putting one foot in front of the other and see if you can find some peace and acceptance with things.

This man in the video below (Dr. Dharma) has been able to do that for me. Take a look...