Interested in Research in Australia

[BindiLeech]

Hi there - I was wondering if anyone in this wonderful community, would have any idea as to whether or not, Australia is doing any research into PSP????  (or if anyone would have any connections to anyone within this wonderful country who would know!!).  Thank you................... in anticipation.

[Hidden]

You can look at information on university medical faculty websites and should get some ideas of research from there.  Or email the Professor of Neurology at any large medical faculty and tell him/her what you are looking for.  I am a retired academic and know that we are all committed to research so you will get a reply and then take it from there. 

[BindiLeech in reply to Hidden]

Thank you so much for your prompt reply Pattz - and I would love to know what area of research you were involved in......I am a registered nurse (with PSP!!) so I was obviously interested in research prior to this awful event that has now entered my life!!!! I have been to a couple of Brisbane based faculty sites but to no avail.  But thank you Pattz. 

[Hidden in reply to BindiLeech]

I taught Research Methods and had no connection with medical matters until my partner was diagnosed with PSP in 2013.  We retired to southern Turkey in 2004.  He died in January this year but we did see two Professors, in teaching hospitals in Ankara and Izmir in the hope of him being able to be part of trials, but no such luck.  I'm afraid I know nothing about universities in Australia being from UK originally but I think my methodology should work.  Good luck.

[BindiLeech]

Thank you so much again Pattz for sharing some of your life with me - it means a lot!@!

[MaureenHorne]

Hi Bindi, I suggest you go online and look at the  PSP Australia website.  They are based in Cheltemham Melbourne and, being such a small charity, operate under the umbrella of Parkinson's Victoria.  Victor McConvey is the Clinical Nurse Consultant/ Health Information Team Manager and  Anne Mooney  runs the only two  (so far) support groups in Oz both  on the Mornington Peninsula.  Anne is a lovely lady  and also knows  whatever there is to know about research in Australia. Last year a very large  amount was raised at a fundraising dinner in Melbourne to fund  a fellowship to study PSP and associated conditions. I hope this helps.

[BindiLeech]

Thank you SOOOOO much Anne - I shall email her in the morning.  Cheers, Bindi

[abirke]

PeterJones is a patient from Austrailia.  You might look at his info though I must say, pattz and MaureenHorne seem to be full of good resources ...Good luck

AVB

[SR101]

Hi BindiLeech,

I just joined this group. I am in Sydney searching for help to assist my Mom in India who has been diagnosed PSP about two years ago.

There seems to be a lot research for PD but not much for PSP. I could only locate Dr David Williams in Melbourne who does some PSP research

neurologynetwork.com.au/our...

[BindiLeech]

Hi there Simit,

And thank you so much for this link - it is fantastic finally having some information for us Aussies - I have not been very good at linking up with many Aussies thus far but hopefully that will now change!!!! just an aside, I am about to partake in some research being done up here in Brisbane for PSP - if you like I can always pass it onto you once I understand what it is about! I don't have my first appointment until next week. I will also be posting it on this this website at some stage also.

Cheers

Bindi

[SR101]

Hi Bindi

Thanks for your response. I have only just started seeking more information for PSP as the awareness and treatment in India for my Mom (75 yr) is very primitive and patchy at times. It would be great if you could please share information about your trial.

Cheers

Simit

[BindiLeech]

Not a problem Simit!! I have my first appointment with a Neuropsychologist on November 29th and have been forewarned that I may need two appointments as the first apt may take at least two hours of fairly intensive assessing!! Yay - I am so glad my husband will be going with me!!. Cheers Bindi.

[peterjones in reply to BindiLeech]

hi bindy well at last I have finaly got to you

well mate you know you made the offer of coming to our place because my dr had given me 15 klms to drive and your place was to far away for me to get there well mate I'm pretty tied up for a while would you be able to come on the 2nd of december that's a Friday mate that's if its not to far for you I will giver you my phone number now and perhaps you could give me a ring then you could let me know if ypu would still; liker to come my telephone number is 33786714 BY THE WAY MY NAME IS REG

[easterncedar in reply to peterjones]

Hey Mr. Jones - you've blown your cover! Now we know your name and number you can expect the phone to ring off the hook if you ever go missing again as you did recently - and at all hours, since we are all over the world! I hope you and Bindileech can get together and have a fine time. Good on you both for making contact! Love, Ec

[BindiLeech in reply to easterncedar]

Hi there Mr/Mrs Ec....... letting you know that I have phoned Peterjones and we are going to catch up with each other very early in December - I am so looking forward to it!!!! Thank you 😊 for your very positive comments. Cheers, Bindi.

[easterncedar in reply to BindiLeech]

I'm really very envious of you! I wish I could tag along! Best, ec

[peterjones]

hi e cedar and mr h how yer battling along henry ok I hope mate its a lonely old road we tread mate I go to respite one a week the eldest on there is 98 mate she is spritly as they come but conversation wise I'm out of ,most #of them deaf but will not admit it or they have left them in the drazeerigt dedsfit

[BindiLeech in reply to peterjones]

Hi there young peterjones!!!!!! As I promised, my mobile number is 0412323798. Cheers and my hubby, Adrian and I are really looking forward to meeting up with you. Bindi

[easterncedar in reply to peterjones]

Henry and I are doing pretty well, thanks, Mr. Jones. Sorry your respite isn't more congenial. It is a lonely road you guys are on, that is surely true. His routine is pretty dull, I'm afraid. I still go to work, so that's our respite from each other, if we want such a thing, and his afternoon aide, at least, gives him more conversation than anyone could hope for. Not sure conversation is the word for it, though, since he'd be lucky to get one in edgewise. Sometimes he just plays possum, I think, to escape the wall of sound. He's always glad when I get home, at any rate!

Anyway, we've had a pretty good couple of weeks here. Too warm for November, but winter will come along properly soon enough. We had short visits from two of my wonderful sisters this month. One I hadn't seen for two years - too long! Since everyone wants lobster when they come to Maine, we celebrated with big lobster dinners both times. And seafood stew and clam chowder. And oysters on the half shell. Whew! It was great, but I think Henry and I have had enough of all that for a while.

Always glad to hear from you, Mr. Jones. Take care, love, ec

[peterjones]

THANK FOR MAIL E#CEDAR IT -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------/-----------------------------------------STICK WITH THEM HENRY ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------/DS LIKE THAT YOU ARE STILL SAVING GOOD TIMES PJ AUSTRALIA

[easterncedar in reply to peterjones]

Lots of good times to be had! I really love it when his little granddaughters visit. The 4 year old is sweet and funny and loves her granddad, and the baby is at the laughing at everything stage - really cute!