Lorrie -
It sounds as if your stepfather is in the hands of a competent movement
disorder specialist, and is on the right meds. (Sometimes the doses need to
be adjusted).. I agree with Janet in thinking that the progression you
describe sounds very rapid, though. I wonder if your mother, or both of you,
can schedule an appointment with the doctor to discuss this rapid
progression. I'm not sure how often the doctor is seeing your stepfather - a
schedule of every 6 months is common. You might want to try to schedule an
earlier appointment for the doctor to see your stepfather, too, if he hasn't
been seen recently.
I've heard of caregivers videotaping the kinds of behaviors they want to
discuss with the doctor, because as you know, it's like taking a car into the
garage - those things never happen in front of the mechanic or doctor! If
you could do that, then have the doctor see your stepfather, asking at the
same time for a separate appointment for yourselves to discuss your concerns,
you could let him know you'll have some videotape for him to see. Or you
could take the tape with you to your stepfather's appointment. I do think
it's a good idea to tell the doctor in advance to expect to be prepared to
view a tape.
When your stepfather stares glassy-eyed into nowhere, it sounds like a "fugue
state." It literally means "flight," and basically the brain "flies away"
somewhere else momentarily. I don't think it's uncommon in PD, even in
people whose overall function is better than your stepfather's.
I don't know what to make of his grabbing the table and saying "light" or
"life." Clearly something was going on. Be sure to tell the doctor about
this. It doesn't sound like a tremor to me, but I wasn't there to see it.
Is it at all possible your stepfather experienced a small stroke at that
time? Such rapid deterioration could possibly be attributable to little
strokes that no one notices, I'd think. I think there are tests that can be
done to determine if that's what's going on. The answers in that case would
be different than if dealing strictly with progression of PD.
As you know, PD progresses differently in different people. From watching
people in a couple of different support groups, I have a gut feeling that
sometimes people who are well up in years when diagnosed progress more
rapidly than those in their 30s and 40s at diagnosis. Strictly a non-medical
observation, though. Nevertheless, you're describing a very rapid
deterioration, and it merits discussing with the neuro. If you're dealing
with swallowing problems, UTIs, and so forth, you're having to maintain a
precarious balance, and the doctor needs to be fully aware and involved at
this point.
Your mother and stepfather are very lucky to have you helping them. Keep
looking for info - every little bit helps. Also, if dementia/hallucinations
continue to be problematic, you might check into increasing the dose of
Clozaril or trying Seroquel if the Clozaril isn't as effective as needed.
Sometimes one med works where another won't.
Best of luck to you.
Margie Swindler cg for Dick, 54/17
<< :32 1999/08/25 EDT, lorrie wrote:
>Hi all,
>Since December I've been helping my mother take care of my
>stepfather with PD. He has REALLY gone down hill in the
>last year, let alone the last month.
>5 years ago he was working and more or less asymptomatic.
>10 months ago he got a cane,
>8 months ago he got a walker,
>4 months ago he got a wheelchair,
>and now he can't perform any of the 5 activities of Daily Living.
>When he's doing well he can feed himself...for a little while.
>What is this stage called? end stage? Where are we in the
>stages of Parkinsons?
>We know it is going very fast, but realize we don't know very
>much about how this terrible disease ends. Should I call his
>daughter in Europe who plans to come see him in December?
>We've been successfully fending off pneumonias from swallowing
>problems, still combatting urinary infections, and dementia.
>Transfers have become very difficult for him. He can barely
>stand while we reposition ourselves to complete the transfer.
>Sometimes he goes into a strange mode during the exertion of
>a transfer: he gets glassy eyed and stares into nowhere...
>can't hear us or remember during that time. We usually seat
>him quickly and wait for it to pass...it takes about 1 to 5
>minutes. Is anyone familiar with this? It's been going on
>for about a month.
>Tonight was kind of scary. He was doing well and we went out
>to eat. We took a bus with a lift so no transfers were necessary.
>He ate pretty well but 4 or 5 times during dinner he would grab
>the table with all his might and grit his teeth. I thought it
>resembled someone grabbing something to steady themself when
>dizzy, but maybe it was pain, maybe it was a different kind
>of tremor. We asked him but wasn't able to get much response
>as to what was going on. Even afterwards. The scariest part
>to me was once when I asked what he was feeling, what was he
>experiencing....he said "Light" or "Life"....we're still not sure.
>anyone familiar with this kind of reaction? Is it a tremor?
>Is there anything we can do to help him during it?
>Anyways, Thanks for listening...and please be frank on where
>we are with this and what to expect.
>Lorrie step-daughter/PT caregiver to Gerald 78 yrs/71 at diagnosis
lorrie
i will be very frank:
what is wrong with this picture?
1. the speed of deterioration
2. no details of gerald's med intake
3. no details of gerald's medicos and their qualifications
what is right with this picture?
1. Lorrie, step-daughter, found us and wrote to us
lorrie,
i am not belittling your situation
i am stunned by it
i can only say that i suspect very strongly
that what gerald is suffering from is not from the pd
but from the meds he has been prescribed
which begs the question - by whom?
i would advise very strongly
that gerald's symptoms and med intake over the past two years [minimum]
be analyzed by another doctor or two or three
however many it takes to find
one who specializes in pd
and has lots and lots of pd patients [i.e. happy customers]
what you have described
reeks to me of drug-induced psychosis
[lots of details in the list archives -
if you want help digging it out, just ask me]
there is a ton of ignorance out there about pd
in all fields of endeavour and in all walks of life
it is not only a sad situation
but also a dangerous one which can be fatal
as we have witnessed here in this group
please please
get gerald to another doctor
and please read joe's story
it's on my website in the pienet section
i consider it requuired reading for anyone associated with pd
janet
janet paterson
52 now / 41 dx / 37 onset
po box 171, almonte, ontario, canada, K0A 1A0
a new voice: http://www.geocities.com/SoHo/Village/6263/
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