Hi there, my new found friends!!!!!!!
I was curious to know how many women on this site have PSP (besides me!!). I suspect most of the Carers are female with most of the "recipients" being male (which I understand is the more normal statistic). I am quite keen on looking Into this more ........ Cheers Bindi XXXXXXXX
I HAVE PSP...... ITS A BUGGER ISNT IT !
And Yes Sasha, IT IS A BUGGER!!!! I would love to know a BIT MORE ABOUT YOURSELF AND IF YOU WOULD RATHER EMAIL ME MY EMAIL ADDRESS IS BRACH4@BIGPOND.NET.AU. Sorry I just looked up from typing and found I had accidentally put caps lock on and cant really be bothered retyping it all!! As you can see by my email address I live in Australia, just out of the city of Brisbane. I am so glad to see that you are holding a champagne glass in your photo - I truly do notice things like that!!!!( and I love it)!!!
Cheers Bindi
Hi BindiLeech, my husband has had PSP for about five years ,although in hindsight I think he had symptoms before that. We live in Queensland in Mackay. We are coming to Brisbane to see the neurologist (Dr Anna Salbach) in August. His symptoms seem to have progressed over the last couple of months. Hang in there
Hi there Kathleen. Thank you for responding to my post. I would dearly love to meet up with youwhen you come down to see Anna but unfortunately we are going to Adelaide next week driving down and bringing back a new caravan!!! We will probably be away for about 3wks. I would dearly love to keep in contact with you though. Cheers, Bindi
We are seeing Anna on the 12 August. So about 7 weeks. Do you see heras well.? Where near Brisbane do you live.
[Edited by MaddieHU]
Hi there Kathleen, Boy it has been a while since we last 'spoke' on this website!!!!! I was just reading through our previous comments and it got me wondering how your husband is doing???? And also I was wondering if you still come down this way to see Anna????? we are home again now until October when we go over to Kiwiland again for one of my brother's birthdays - (I unfortunately have lost two brothers in the last 7mths) - unfortunately this brother has also suffered from a couple of TIA's whilst they were recently away overseas and then he got to see the inside of a Barcelonian ward for three days as he had to have an ambulance take him from the ship they were cruising on and take him to one of the hospitals in Barcelona. it can be great fun travelling at times can it not????? Anyway, Kathleen, I am sorry as I didn't mean to go on for quite as long as I have - hope you are both doing well. love Bindi
Hi Bindi yes it has been a while. No we have not been down to Brisbane since last August as it is too hard for John to travel Anna said their is nothing she can really do for John so it doesn't seem woth the upheaval to go to see her. Although she said we can ring her if necessary . John has deteriorated to where he never wants to go out. He cant see and his eyes are very sore and toileting has become quite an issue. How are you doing i hope things are better with you my mobile is 0428175187 if you would like to talk on the phone it would be great to talk to someone who really understands regards Kathleen
Hi there again Kathleen - wondering if you have been down for your appointment yet with Anna?? If not, can you please let me know when you are coming down because we are home now for a while!!!!
Cheers
Bindi
Yes we were down a couple of weeks ago. Anna had nothing she could do for John except to say she was sorry there is nothing she could do .she again looked at his eyes which is his biggest problem. He spends most of his day in bed as his eyes are so sore.. While you and your husband are well enough you should go as many places as you can. Keep in touch.Xxx
Hi there - and yes, my husband and I have recently bought a new caravan so we are intending to use it lots in the next year at least!!! We are also in the process of trying to get our cat used to it also which could take a wee bit longer!!!!!
We are also off to Kiwiland for a month in October (and I am currently trying desperately!!! to find someone who may be interested in staying in our home, to look after Sooty!!!!).
Anyway my dear, I shall head off now and have a shower so I am ready for what the day may bring me. Take care and Talk soon xxxxxxxxxx
SO SORRY DID NOT SEE YOUR REPLY UNTIL TODAY !! I LIVE IN FRANCE BUT NOT FOR MUCH LONGER AS AFTER 4 1/2 YEARS ON THE MARKET WE HAVE JUST SOLD OUR HOUSE TO SOME DUTCH PEOPLE ///WE ARE GOING BACK TO THE UK AS OUR SONS ARE NOT HAPPY IWITH US BEING SO FAR AWAY .. WE ARE SAd t be going back after over 8 yeARS HERE AND WE WILL MISS THE LOVELY POLITE FRENCH PEOPLE '''
My Aunt Bev has PSP going on 14 years or so now she is 69 her mind is still all there and she fights to live every day .
Wow 14 years is a good length of time and she was obviously quite young with her original diagnosis..and it is great also to read that she is still fighting each day. Love Bindi X X
Hi Bindi, glad that you found this website, no one wants to be on it but what a blessing, it is as everyone can find some comfort as we can talk about the problems with PSP we are all in the same boat, as far as I understand with men and women and PSP a little higher wth men, crazy. Take care. Many Blessing to you. Nettie
My wife has PSP for over 5 yr (diagnosed 4) at the North Wales PSP group only one guy with PSP the others are all ladies: 3 with CBD and 2 including M with PSP. So round here more female sufferers but may be very unrepresentative as group new and small,
Best of luck hope you have all the support you need. Tim
Hi Bindi, my mum aged 65 has PSP, would love to chat with you
That would not be a problem Sharli - what is your Mum's name? Not sure where you are living either - if it is in Aussie, my landline number is 07 3207 2350 or mobile is 0412323798.
Cheers Bindi xx
Hi Bindi, yes I'm in country Vic, thanks for your contact would love to call you over weekend x mums name is Marie
Interesting that you are in country Victoria - the reason I say that is my 2nd husband Adrian is from Victoria and he would know a lot of it! We actually met in Sale .........and next week we are going down to Adelaide to pick up a caravan which we have ordered, before going to the Barossa and to the Clare Valley in SA. We are then considering coming over to Victoria as Adrian has a number of relations over there, before heading back to QLD by the 6th August!!!!
Anyway, Sharli, I am more than happy to speak to you over the weekend
Cheers
Bindi x x x x
I was diagnosed with parkinsons for several years but it's now turned out to be PSP.
Hi,Bindi,
I was dx last year 2016.
Thanks,
Susan
Hi there Susan - I am so sorry to hear about your diagnosis - as you would have gathered this site is fantastic for getting information and for contacting other people who you would never be able to source in any other way -= yAy PSP association. If yo u would like to communicate with me either via this website or by email, please do let me know. Cheers Bindi
Hi Sharli - so sorry but I never did get to speak to your mum - if you would prefer to email me, my email address is brach4@bigpond.net.au - how is she?? Hopefully is going strong. I must admit I am not doing too badly at present although I am finding the falling very tedious!!!!!!, and frustrating!!!!! Anyway if you would like to keep in touch with me, you now also have my email address as well as this wonderful site!!! Cheers and Love, Bindi
Hi-Dad diagnosed with PSP
Farther newly diagnosed with PSP
MY HUSBAND JUST DIAGNOSED WITH PSP
Early diagnoses of PSP may be a blessing.
