Like Hiebert, I'm curious to know how many Australians use this site. My husband has PSP and we live in Ballarat, Victoria.
Australians: Like Hiebert, I'm curious to... - PSP Association
Australians
Written by
nayook
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17 Replies
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Hi, hopefully you will have lots of replies from people in Australia but if you click on “home” just under the pictures at the top of this page and then look far right, you will see, “People near me”. I can’t remember if I had to give permission to have my name put here but you may find others from Australia there.
Good luck
XxxX
Hi Bev;. Interestingly when I tried to use that feature it said No Results - even though Ive learned there are at least 2 HU members wirhin 2 hours drive of me! They would have different postal codes...?
Anne G
Anne that shouldn't matter. It doesn't in the UK. So keep scrolling? Maybe you have to give permission but don't think I did.
Marie x
I’ve just looked again and it does say “Opt in” and when you click on it, it says you can opt out at any time. I wonder how many folk didn’t know you can do this.
XxxX
Well, I just tried again (I am opted in) and the 3 members I know are from my province (British Columbia) and are near me, do not show up - but possibly they've put a privacy setting on their location.. or have not opted in ?? Anyway, it's ok...Meeting up online is good enough for me! 
Thanks Bev.
Thx - will try again!
Hi Nayook, my husband TJ has only just been diagnosed with PSP in late stages. He fell off our veranda nearly 3 years ago, dislocating and fracturing C6/C7. His spinal cord injury masked many symptoms of PSP. After talking to his neurologist, in hindsight, he may have had PSP then which actually caused the fall. We live in Lake Macquarie, NSW (next door to Newcastle). I have read that they are researching whether metal contaminated soil has anything to do with this awful disease. We live in an area not far from lead contaminated soil from an industrial business that was closed down years ago. They are trying to remediate the area so they can sell it off. I bet the people buying property in years to come won't be advised of this.
Not sure how many diagnosed have PSP. It would be interesting to see if there are others near industrial sites.
Best wishes, stay strong.
Caz49
Hi Caz49, My hubby Leon had his first fall some 12 years ago, now that I know what I do, am guessing it was the start of PSP, I actually worked out that he had PSP by an article in the Herald Sun of two girls raising money for more research into it. The guy just had Leons look.!! If that makes sense, so I started googling, and when I went to his Neurologist and said what I had stumbled he confirmed that I was probably correct, that was 4 years ago. Leon is now in Albury in care, and as I am homeless I house/pet sit in and around the area. Would love to catch up for a chat and cuppa This site has been so so helpful to me, I cannot wait to check in almost daily to see what else is happening with everyone
Marg Halliday
0411329821
Hi, I live in the U.K. but spent 3 weeks at Christmas in Hilldale, Hunter Valley and travelling to Newcastle several times while there, even boating on the lake, which is enormous. My 8 and 11 year old English grandsons loved it as the Station platform was tiny and they had to wave at the trains to stop them, a great novelty.
It was very hot while we were there and it’s a shame we couldn’t have bottled it as we came home to snow and rain....and it’s still raining.
We had a wonderful time in your amazingly big country.
XxxX
We are in UK but visited Ballarat on holiday before Psp. Lovely place with interesting history. Peter.
Hi , My husband was diagnosed with PSP one year ago. We live in Townsville, North Queensland. The only support group here is a Parkinsons group but I am pretty sure that there are at least 2 groups in Victoria. We would like to be part of a research group but there isn't one here. I am sure that there was such a group in Melbourne. Not sure if it continues. I, too , tried the "People near me" site but had no luck with that. I would like to hear how you get on. We would even come to Melbourne later in the year. Keep in touch. ... Val
Hi Nayook
My husband has CBD. We live in regional QLD. I know there a couple of QLDers on here.
This is an awesome site. So many good tips & ideas.
Good luck
Hi there nayook,
Unreal, we lived in Black Hill, Ballarat, prior to selling up and hitting the road 8 years ago. Now housesitting in Barnawartha Vic, and Howlong, Albury/Wodonga area as Leon (PSP sufferer) is in care in Borella House in ALbury N.S.W. it would be great to catch up or just chat
Cheers Marg Halliday
0411329821
Hi Nayook
My husband Bill also has PSP he was diagnosed six years ago. Early Last year he fell over backwards and did his hip was in hospital for seven weeks but could not walk again. The doctors at the hospital told us that he would not be able to come home as he has no movement in his leg. He is now in a nursing home at Lynbrook Victoria. I believe PSP are in four stages. Bill is in his fourth stage. I live in Cranbourne
Regards Maria
