Every 67 seconds someone in the United States develops Alzheimer's disease it's
the only cause of death in the top 10 in America that cannot be prevented, cured
or slowed down. Almost two-thirds of Americans with Alzheimer's disease or
women and one in three seniors dies with Alzheimer's are another dementia only
forty-five percent of people with Alzheimer's disease or their caregivers
report being told of their diagnosis while ninety percent of people with the
four most common types of cancer have been told of their diagnosis. In 2015
Alzheimer's and other dementias will cost the nation 226 billion dollars so
KC these are really sobering facts and in just a moment we're going to talk
with author and journalist Greg O'Brien who is diagnosed at the age of 59 with
early onset Alzheimer's and he's written an award-winning book called on Pluto
inside the mind of Alzheimer's. Greg is truly amazing and his more than 35 years
of expertise as a writer, editor investigative reporter and publisher
Greg welcome to nurse talk and thanks so much for being with us. Can you talk to
us about what it's like to have Alzheimer's. Yeah, it uh you know it's
like having a sliver of your brain shaved every day and and it's you know
it's a death in slow motion I i was diagnosed about five years ago and in
what I've tried to do is to protect my speech and communication as is my mother
did first of all I should and I and I've been on the show before and thank you
for inviting me back but for those who didn't see before you know my maternal
grandfather and my mother died of Alzheimer's my paternal uncle died
several months ago of Alzheimer's for my father died he was diagnosed with
dementia in several years ago I started experiencing the symptoms horrific
short-term memory loss not recognizing people I've known all my life not
recognizing familiar places going into intense rage seeing things that weren't
there. Then I had a serious head injury that doctor said exacerbated the disease
and brought it on quicker had the brain scans
specks can and clinical tests that confirmed the diagnosis and I also
carried the Alzheimer's marker gene apoe4 that appears to be on both sides
of the family so I you know at that at that stage you know I wasn't getting out
of it and I went into the pity party and had the WTF talk with God and you could
figure out what that means and then I decided to write a book on Pluto inside
the mind of Alzheimer's is a longtime journalist which is the first book ever
written by an investigative reporter embedded inside the mind of Alzheimer's
chronicling the progression of its own disease and and that's what the book's
about but it's a progression it's a slow progression and it's a it's a death in
slow motion and you know you got to get up every day and fight because if I'm
not moving forward on moving backwards and today sixty percent of my short-term
memory can be gone in 60 seconds and places. That's incredible Greg, that you
have done so well so far so you were diagnosed at 59 how old are you now?
You know if you don't mind cuz I know we're having a little bit of a
communication problem here can you can you kind of speak into the phone a
little more so so I could hear the question. Absolutely, no problem so you
were diagnosed at 59 how old are you now? I'm 65 so you're doing remarkably well
at 65. Well thank you but but you know as I said before sixty percent of my
short-term memory gone in 60 seconds don't recognize people including my wife
on two occasions there are times I pick up a phone and I don't remember how to
dial or a lawn sprinkler and I don't know what it does you know seeing more
and more things that aren't there the other day which was last week I'm a
writer and I put my hand on the keyboard and for the first time there were
letters that I couldn't find it and I know to people in the medical world,
business world that's not a big deal but to a writer that's a big freaking deal
and it's so damn you know the signals aren't going down
And so you talked a little bit about what each day is like but what would you
say what are the aspects one of the symptoms that are the most bothersome
for you right now. Well I think the most bothersome is the short-term
memory loss because people with early onset alzheimer's know better and and you
go into tremendous rage and and also you know getting lost in familiar places
that that's and feeling out of control you know I've lost my the doctors don't
let me drive at night I have this attachment now to my iphone that tells
my family where I am at all times and in it's it's it's a death by a thousand
cuts and you know the end of the story but what what I'm trying to do now is to
teach people how to live with this disease not die with it the dying part
comes later but doesn't it come for all of us the great Bugs Bunny once said
don't take life too seriously because nobody gets out alive. So very true. So is
there anything Greg that makes it better or worse for you. Well yes, that's a good
question by the way my sister is a nurse so I have tremendous respect for nurses
and and in fact I think often that they do better work than the doctors because
the doctors they're so out straight they do the drive-by visits and the nurses
actually get things done but I think that exercise of the body and the mind
is is so key to fighting this disease you know I exercise every day I exercise
my mind and writing and in work and and I take I take a lot of medication to
slow a progression it's the legal limit it's a 23 milligrams of aracept, 28
milligrams of namenda 30 milligrams of silesia and they give me 50 milligrams
of trousasown but I don't take it because it makes me loopy in
I don't really need that. The trazodone does? Yeah probably the trazodone is what
makes you a little loopy. Are you having any trouble sleeping at night? Yeah, I do
and my mother had that as well um you get up at night and you just
walk around the room because you can't sleep and and you know you kind of don't
know what to do and the good news is I have a dog so I get up and talk to the
dog so sometimes I think the dog thinks were married but you know but my mother
had had trouble sleeping and um it just kind of comes comes with the territory.
Yeah, is there anything... They say you're supposed to get a lot of sleep to
which I tell the doctors well that sounds great but what happens when you
wake up and you can't sleep and you know another thing that we're talking about
symptoms before and it's a common symptom I can't be in the room with a
lot of people and I'm withdrawing more and more and it's the noise and the room
that it I can't I can't process all the noise and so I'll have to remove myself
from from places. I had to do it at my own daughter's wedding two or three
times so we had 200 people there and yeah come from a large Irish family and
and I couldn't handle processing all that noise. And that's an important point
Greg that you bring up for other people who have Alzheimer's and for those
caregivers it's really hard for you to process when there's that much in the
room so it's important for people to understand that you can't track that
amount of activity and it causes more confusion. So at your daughter's wedding
did you then just go and sit quietly in a room and come back and forth how'd you
handle that? Yeah, well I don't announce things because I'm not looking for pity
so I just went off on my own. If something inside me said you needed time
out and I just went off on my own and and just needed to calm down
and reprocess and then what you try to do is is when you're in a room
with a lot of people which is which is part I'm getting at it's it's a 24-7
fight you know doing this interview is not easy for me you know I got notes
around me and you know my laptop obviously which is being used here but
you have to fight this demon you have to you have to push out
on all fours every minute because if you give up or your slide back you
you lose your stride. It's like running a race and knowing at the end
you're not going to win it, but you know I I've chosen to say okay this demon can
take me out with a sledgehammer but I'm gonna keep keep on running
I'm lying on the moon
My dear I'll be there
No comments:
Post a Comment