Voices of Alzheimer's Pt III
This will be the third installment of my own responses to questions posed to a group of Early (Young) Onset Alzheimer patients during 4 live and one virtual town hall meetings in August of 2008.
Kris Bakowski was one of the attendees of this event and sent me a summary report which you can read at www.alz.org. I strongly encourage you to do so - it has a wealth of information from patients and caregivers, and it is very important that we learn as much as possible because it's not going to go away any time soon.
Response: " My diagnosis took eight months. I know people for whom it took two or three years......-- you name it and I went through it"
I began my testing last October, and I have lost track of the number of times I have asked myself, "Well? Do I have this stuff or don't I?" The not knowing is very tough for me. I need a "starting place"!
Next week will be the third test for EOAD: The 72-hour EEG and I am hoping (what am I hoping?) that within that time frame something will spike (or not spike) to put an end to all the supposition. It's not only the "not knowing", it's the expense - both financial and personal of "walking around in the dark" with this shit hanging over my head.
Reading this, what does it sound like to you? Am I in denial or am I in "acceptance"?
How about am I in "tired"?
My counsellor (Mr. "I'm OK, You're OK") tells me to "think positive" and don't "waller" (sp) in it!"
Okay! I'm all for the "non-wallering" and in keeping with that frame of mind, I'm going to exercise a bit more and keep myself moving. I want to do another cross-country bike ride and want to run the Atlanta Marathon at least once more before leaving this "mortal coil". so I guess I'd better get my ass in gear, as it were.
So my response to the above response would be "The Columbia Record Club Response".
You: "Huh"?
Me: Well, the "CRC" response is like sending off for those 10 "free" cd's and putting them out of your mind while waiting for them to get here, and one day..... well.... they'll be here and they'll either be all you hoped they'd be, or they won't, but at least they'll BE HERE, right? :)
In other "Bill News", last Thursday I had the mother of all panic attacks, and I thought [Fred Sanford]"This is the BIG one, 'Lizbeth" [/Fred Sanford]! I absolutely thought I was dying and was just waiting for my heart to stop beating. I paced from room to room with Bert (my cat) alternately trying to follow and hide from his suddenly maniacal Dad who just could NOT settle down!
Call an ambulance?
Yeah, right! What, they're gonna haul my ass to my own ER? I. Do. Not. Think. So.!
What I finally wound up doing was getting on the computer and e-mail the love of my life. Luckily she was awake and "talked" me down via Yahoo. Ah, the wonders of cyberspace.
What caused the attack? Aricept. Even at half a dose, it makes me not be able to swallow, which frightens me, which causes the tachycardia, which causes the panic attack, etc. etc. etc.......
But I'm still among the living. For now.
Thanks, as always, for following my blog and caring about me.
Bill
Kris Bakowski was one of the attendees of this event and sent me a summary report which you can read at www.alz.org. I strongly encourage you to do so - it has a wealth of information from patients and caregivers, and it is very important that we learn as much as possible because it's not going to go away any time soon.
Response: " My diagnosis took eight months. I know people for whom it took two or three years......-- you name it and I went through it"
I began my testing last October, and I have lost track of the number of times I have asked myself, "Well? Do I have this stuff or don't I?" The not knowing is very tough for me. I need a "starting place"!
Next week will be the third test for EOAD: The 72-hour EEG and I am hoping (what am I hoping?) that within that time frame something will spike (or not spike) to put an end to all the supposition. It's not only the "not knowing", it's the expense - both financial and personal of "walking around in the dark" with this shit hanging over my head.
Reading this, what does it sound like to you? Am I in denial or am I in "acceptance"?
How about am I in "tired"?
My counsellor (Mr. "I'm OK, You're OK") tells me to "think positive" and don't "waller" (sp) in it!"
Okay! I'm all for the "non-wallering" and in keeping with that frame of mind, I'm going to exercise a bit more and keep myself moving. I want to do another cross-country bike ride and want to run the Atlanta Marathon at least once more before leaving this "mortal coil". so I guess I'd better get my ass in gear, as it were.
So my response to the above response would be "The Columbia Record Club Response".
You: "Huh"?
Me: Well, the "CRC" response is like sending off for those 10 "free" cd's and putting them out of your mind while waiting for them to get here, and one day..... well.... they'll be here and they'll either be all you hoped they'd be, or they won't, but at least they'll BE HERE, right? :)
In other "Bill News", last Thursday I had the mother of all panic attacks, and I thought [Fred Sanford]"This is the BIG one, 'Lizbeth" [/Fred Sanford]! I absolutely thought I was dying and was just waiting for my heart to stop beating. I paced from room to room with Bert (my cat) alternately trying to follow and hide from his suddenly maniacal Dad who just could NOT settle down!
Call an ambulance?
Yeah, right! What, they're gonna haul my ass to my own ER? I. Do. Not. Think. So.!
What I finally wound up doing was getting on the computer and e-mail the love of my life. Luckily she was awake and "talked" me down via Yahoo. Ah, the wonders of cyberspace.
What caused the attack? Aricept. Even at half a dose, it makes me not be able to swallow, which frightens me, which causes the tachycardia, which causes the panic attack, etc. etc. etc.......
But I'm still among the living. For now.
Thanks, as always, for following my blog and caring about me.
Bill
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