Joy, Regarding Head vs Doorsill, I offer two possible solutions. 1.
Upholster bumpers on every corner he might run into. 2. Buy him a
bicycle rider's helmet. They might even be available with built-in
earphones for his audio books. Cheers, Geo.
Joy Graham <[log in to unmask]>
Sent by: Parkinson's Information Exchange Network
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03/08/2003 09:52 PM
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Subject: Re - Introduction
Hello all,
Nice to be remembered - thanks Ivan! Don Diswinka asked how we are
doing... so here goes:
For those who don't remember us from down under, here's a snap shot about,
Bob (63) who is now into his 13 year with PD.
He has some unusual symptoms which now, the docs are saying is most
probably PSP. He has gaze palsy and can't look down (so can't see to eat,
pour coffee, etc) and also has convergence problems and sees double. He
can't use the computer anymore or read much, so he spends a lot of time
listening to book tapes. His eyelids close involuntarily and his eyelids
are weak so he can't open his eyes often, and when he does, he normally
has
to pull them open with his fingers. He has had a series of Botox
injections but feels that makes his eyelids weaker, so at the moment he is
cleared of Botox.
His eyes used to be very red and sore, but the fact that they are closed
so
much and with daily cortisone, and regular drops/ gel/ointment they are
much better.
He falls backwards & has just recently had his third set of (6) stitches
after cutting his head to the bone. He does not freeze as such but rather
does what I call are "statues" leaving his hand, arm, body in awkward
positions (for instance, he will hold a cup up in the air after having had
a drink, rather than put it down on a side table, or he will leave his
hands locked together tightly, so they go all blue.)
He can't write, talk (except for the odd word or small sentence and with
great difficulty). He has the usual slowness, contstipation but he can:
walk well (as long as he doesn't stop otherwise he falls backwards)
use his fingers quite well, so can dress himself
he can turn over in bed, and get up by himself (although usually needs
prompting)
Sing a bit.
remember things I can't (nothing wrong cognitively)
play crib (thanks to Manitoban winters)
Enjoy watching and relating to our 12 month old grandson (our first)
walk the dog, about a three km trip, but this tires him out for the day.
swim a bit - with help and encouragement (but can't use arms and legs
together very well)
Treatment - he takes Madopar * x 8 doses equalling 1600 mgms, Sinemet CR =
600 mgm; Cabaser 6mgm. ( * He takes Madopar rapid which dissolves in
water, before lunch and dinner to get a quick action. This helps with his
swallowing, since he tends to choke sometimes) He NEVER gets dyskinesias
or hallucinations, so this is why he can take so much levodopa.
I continue to care for Bob but we do get 4 hours of respite a week which
has enabled me to continue my work with the local Parkinson's Western
Australia (I am on the Board). I plan on doing a First aid course soon
and
to learn how to suture!! (In case I am stuck somewhere and need to do this
for Bob). Pebbles (our dog) and I both run to him when we hear a thump -
which happens a few times a day. I try not to panic!
We built a special home, but he still falls against areas such as door
frames which just slice his head open!
I am looking for a spray on foam sort of substance which I can coat over
all sharp corners to soften them..Does anyone have any ideas??
Well, if you have read this far, you will have gotten as good picture of
how Bob is in early 2003.
Nice to be chatting to you all again.
Joy Graham
Don commented:
Haven't seen much of anyone from
>Au posting??
This is probably because we are all parched - having had the worst drought
for many years and now - in Perth a heatwave (38C today) so lassitude has
set in for the season!
Bob & Joy Graham
Ph & Fax (08) 9430 4730
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