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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn