The walking difficulty .... falling or balance problem...... A
wheelchair is needed if someone is falling and getting stitches
repeatedly.  A 4 wheeled walker maybe?

Look in a baby department  or baby store for the cushion clear plastic
corners.  Also, some use egg carton foam and tie it on corners of
 tables .  Another solution is to remove coffee tables  or low tables
because they are too hard to see when u can't look downward.

Another source u may try for vision problems is a low vision or vision
impaired/blind catalogue site.

There is a PSP group on the internet .  Anyone have the site ?? Maybe
they can help out.

nancy m

Joy Graham wrote:

>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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