G'day


Posted by Scott Harvey , Mar 03,2001,07:40   Archive
hi
Been a while since i posted. have been a bit busy with 4 weeks of holiday- 4 weeks of sun, swimming and barbeques followed up with 4 weeks of work trying to catch up with the 4 weeks I missed. You sometimes wonder wether it's worth taking a holiday.

must have had a good time I've been compiling the stats

29 days straight at the "shack"
3 phone calls from work
about 200 fish caught
only three main meals not on the barbeque
250 litres of petrol through the boat
4 AFD's
at least 2 days( but i can't remember which ones) with out arguing with my teenage daughter
around 20 visitors or so

All that aside have been relatively stable since Christmas - the eyes are fine as long as I keep taking the Isoptin every morning. Went back to my neuro this week - for my three monthly check - but it was "good" that I was experiencing an acute phase with my glands playing up and the numbness down the left side, i think it was the first time he had seen me like that. he talked about the possibility of a low level auto-immune disease but decided that as i am relatively "controlled" at the moment that we should just keep doing what we are doing.

Have been following all your ups and downs ( and shakes and tremors) and am pleased that you and your families are all OK.

LOL Scott from Tasmania (that place down under down under)

--modified by Scott Harvey at Sat, Mar 03, 2001, 08:09:11




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Re: G'day

Re : G'day --- Scott Harvey
Posted by GailJ (gailJ,GailJ), Mar 03,2001,08:35 Top of Thread Archive
Hi Scott

Are you aware of any other BEB patients in Tassie? From the population there should be around 20. I'm aware of just two.

Cheers
GailJ




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Re: G'day - response for GailJ

Re : Re: G'day --- GailJ
Posted by Scott Harvey , Mar 13,2001,15:40 Top of Thread Archive
Gail

Sorry it took a while to get back, have been travelling around to Sydney and then to the shack for the long weekend.

I am only aware of one other in tasmania -don't know who - just my daughter's GP mentioned that she had a lady with BEB.

thanks for the other post - sounds like an interesting set of photos.

Scott




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Tasmanian BEB patients

Re : Re: G'day - response for GailJ --- Scott Harvey
Posted by GailJ (gailJ,GailJ), Mar 16,2001,06:30 Top of Thread Archive
Hi Scott & others

Thanks for your reply. Since I posted my query to you, I have seen the neurologist we share and asked him how many BEB sufferers he sees. He said around 6. I've put the same question to my new ophthalmologist, who said he has around 10 patients with BEB. It's quite possible that there's some overlap between the two groups, like me. Apparently there's a botox register that must be completed for the Health Dept., which may help determine the number with BEB in the state.

With a colleague and a medico, we are considering undertaking a research study into BEB. We'll need a minimum number of BEB patients in Tasmania willing to participate in the study for it to have any chance of being viable.

What a luxury a local BEB support group would be, both for the study and for my own support needs.

Cheers
GailJ




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For Scott

Re : G'day --- Scott Harvey
Posted by GailJ (gailJ,GailJ), Mar 03,2001,09:30 Top of Thread Archive
Hi Scott

The large organisation where I work has an art collection which is available to hang in corridors and busier offices. Because my office is one of the latter I was able to choose two pictures for my walls a few weeks ago. One of the pictures made me think of your post written the night that Willow Court was closed. It's a black and white compilation of three photos of a room with two beds, taken in that institution in 1984. The room is stark and almost symmetrical. As a work of art, it's striking. As a long-term setting for people's lives, it's appalling. I made a positive comment about the photo to the curator of the collection when it caught my eye, before I read the caption. I gathered from her that people had been unenthusiastic about hanging the photo in their workspace. I figure they must have read the caption first. If I'd read the caption first I wouldn't have made the comment to the curator, and she wouldn't have been so enthusiastic for me to take it.

Last week I removed the caption and stuck it on the wall behind the photo. It bothers me less that way. Your elation was justified when you made that post that night.

GailJ, with apologies to the folk other than Scott who read this post




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Re: G'day

Re : G'day --- Scott Harvey
Posted by June in Toronto (June Floyd,June in Toronto), Mar 03,2001,09:45 Top of Thread Archive
Hi Scott, Enjoyed your post - glad you had a good 4-week holiday (must be nice:-)
What are AFD'S?
Glad your eyes are in control and the doc witnessed the gland problem-that doesn't happen very often I know!
Take care
June in Toronto - where its been snowing and very cold again not like Tasmania!



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Re: G'day - reply for June

Re : Re: G'day --- June in Toronto
Posted by Scott Harvey , Mar 13,2001,15:48 Top of Thread Archive
Hi June

Sorry it took a while to respond, have been away for work - followed by another lovely long weekend.

I don't know if I should enlighten you on what AFD's are- it will probably make me sound like an alcoholic. (AFD - Alcohol Free Day)
I think it is an occupational hazard of living your summer outside in the sun and having so many barbecues. It somehow just doesn't seem natural to cook a barbie without a nice cold beer or a good glass of red at hand. Just another one of those great Aussie rituals.

starting to cool down here at the moment I suppose it won't be long before we start to see some snow on our lovely mountain that overlooks Hobart

Scott




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