The Ice Bucket Challenge for raising awareness and money for Motor Neurone Disease (ALS) has gone around the world.
What can we set in motion for PSP/CBD awareness and raising research money that would be just as simple and just as effective.
Cheers
T.
HI T
yeS there ought to be something for PSP./CBD
WHA SI THE ICE BUCKET CHALLENGE?
LOL JILL
Hi Jill
People (often famous or well known) allow a bucket of ice water to be poured over them. They themselves donate to the Motor Neurone Disease (MND) cause, and the public then donate as a consequence. If you Google "Ice Bucket Challenge" you'll see the millions (of dollars,euros and pounds) already donated since July.
Perhaps the PSP Associations around the world can somehow link into this "fervour" and tell the public and celebrities that PSP has many similar symptoms to MND with a similar prevalence and prognosis.
Cheers
T.
JUST NOTICED ON THE PSPA HOME PAGE THAT THE ICE BUCKET CHALLENGE IS ALREADY BEING PROMOTED FOR PSP/CBD AWARENESS AND DONATIONS!
T.
I agree ! I thought the same thing .
Hi,
My daughter did the ice bucket challenge for ALS and posted her video on facebook. She mentioned in her post she would also like to raise awareness for PSP, because her dad has it. She attached a link for PSP information. Just wanted to share this with you, she makes me proud 
You're not the only one wondering about this.
Joan
Hi laroux
Well done to your daughter! In the past and more recently I attached a PSP awareness statement to my FaceBook page and so all my friends and contacts have now become more aware. Spreading information about PSP is so important and hopefully we all can do this by using the "modern media" available.
All the best.
T.
iti is a good idea to attach a PSP state,meant to one s Facebook page
i must do that1
thanks T for th e idea
;lol Jill
Hi Strelly, just thought I'd mention, my daughter a friend and her son have already started on behalf of PSP and I believe it snowballs by the one being ice-bucketed nominating three others to try the challenge. It seems like a great way to get back at someone in a lighthearted way, I live in fear of being 'challenged' by one of the family who may be harbouring a grudge for a past disciplining!!!!
Regards,
Jerry.
Hi. I agree and my daughter has also nominated PSP on her Facebook blog rather than ALS for the Ice Bucket challenge. My wife was diagnosed with PSP in Feb 2013 therefore the fantastic work that PSPA do has become very important to us.
I am doing my bit to raise money by running the Loch Ness Marathon in Sep, have so far raised over £1500 but hoping for a lot more
Any donations welcome
I agree I have been trying to think of something different, I have even thought about pushing my Aunt from State to State just to bring awareness, If we had a person that is well known on TV that would help I have been writing people but no response
For PSP awareness I would do it! I am also drafting a letter for our local radio station. Would really love the opportunity to talk about PSP in South Africa!
Hi Coleen
Are you in South Africa? We spend a few months every year there. (Swallows!)
It was in SA that we encountered the first doctor that actually admitted to having dealt with PSP. Here in England, all I get when I ask if they have ever had a PSP patient, is "yes I know about PSP" never has anyone replied, "yes I've two patients"' or whatever. It was there, S's physio said she had never heard of it, then spent the next few days, reading up about the disease, before his next appointment. I can hear all my fellow Brits screaming WHAT!!!
We all have to remember that it is a very rare disease and only people who are affected by PSP have heard about it, that applies to all countries, but at least, in my experience, your professionals do try to learn what they can, when they come across it!
For us, that means we feel safe, to keep coming to South Africa, while S can still travel and get medical insurance!
I am really guessing now, but are you talking about Cape Talk? I'm sure Redi Tlhabi would be interested, in one of her medical articles.
I look forward to listening to it when we come back soon!
Lots of love
Heady
HI STRELLEY HOW ARE YOU AND YOUR WIFE GETTING ALONG OK I HOPE AND SHE HAS RESPONDED NOW TO YOUR OWN BRAND OF TREATMENTS FOR HER TAKE CARE BOTH OF YOU PETER JONES QUEENSLAND AUSTRALIA PSP WHAT ABOUT A RED GARTER TO TAKE THE PLACE OF A BUCKET OF ICE WATER MATE FOR CHARITY FOR PSP
Good to hear from you Peter. My wife is still on that slow downward progression at present, but we never know what is around the corner. We plod on together, and she is still able to enjoy my teasing humour. If we didn't laugh about things we'd be in a real mess.
What's all this about a red garter? What did you have in mind?
Hope you are reasonably OK...hope you're not attempting too much and falling.
Take care mate.
T.
hi strelley how are you and your good wife going mate ok I hope matey we\ll I thought if we charged a gold coin a bloke put a red garter on a ladys leg up to her knee of course and if he wanted to purchase the garter afterwards another gold coin
would not astray all the carers out there would not mind making up a few garters would they and getting there friends to donate around the world mate because we have a fairly large community now or should I go back to sleep!!!!!!!I went to my nuero yesterday he was very pleased with me except for the falls which I reckon did not work out to bad over a 12 month period that's 84 falls all recorder on my puter which I gave to him he said 84 84 84 to many \\so I ask him what the alternative was I think it was thinking about things before you do them which is fine if you haven't got psp and to many \things to clutter up your brain I also ask him if there is any research or anything going on in Australia he sais he had not heard of anything i got the impression that he did not want to talk about psp at all so I shut up I did not expect him to keep the list of falls I had only there was a lot of typing errors on there and maybe a few things about neuro and drs there was about 6 pages of typing ah well you cant win them all can you strelley well mate do you think the old red garter would work or had I better not give up my day job !!!!!!!!! well the thought was there best wishes to you and mrs strelley mate keep on keeping on and hang in there mates peter jones queenskland Australia psp merchant
I see that your post was 2 moths old mate well that's a first see yer matey
Hi Peter
Thanks for your suggestion about the red garters, but as you mention, perhaps you should not give up your day job!!!!
I think we've talked about you having PSP-Parkinson's (the slower form), but I'm wondering why you are having so many falls - do you use some sort of mobility aid? I'm guessing you have "the rocket sign" (motor recklessness) where you stand up from a chair and then move so quickly you tend to fall. Also, are you having problems with freezing gait where you're foot "sticks" to the ground and you fall over? I think it's time you cut down your 84 falls/year to zero if possible by using a suitable mobility aid or have someone assist you....or are you TOO independent? Falls can be nasty, and you've already been in hospital due to falls (I think).
Thanks for asking about my wife......we find it hard, but look for ways to keep things safe. I'm now using a "stand to sit" trolley (a bit like a fridge trolley) to move my wife around, while she still has strength to pull up and stand (although she has no balance). She likes being wheeled around on it!
All the best mate and take care (especially with that problem of falling)
T.
hi strelley so it looks like the red garter has had the Richard then mate good job I didn't give my love of falling over away then \\ wellyou are right with a few things mr s I do have a very bad turn s of freessing gait my friend I have two walkers and a waking stick for my mobility but one night I got out of bed and stood up and turned and fell onto the walker taking a slice of my ear off io ended up in the ambulance on my way to hospital there they got a plastic surgeon to stitch the part of my ear back on and made a very good job of it you would not even know I had it done but you are right I try ands cut down on the falls I have but the more I think about what im going to do im over again but my luck wont hold out forever mate I know this I had a bone density test and they gave me great results not that I think ok you have good bones you will be ok if you fall
but I think sometimes that the wheelie walker is much to be desired because i9 have had one go right over the top of my head it was to light but I thought 84 falls was quite reasonable I think jill has that in about 3 days so i thought I was doing ok but obviously im not ive tried to retrain my brain such as it is to get over this problem but I afraid it has not worked and also im afraid to say I am a bit stubborn when it comes down to it mate I fall down I get up although lately I have not been able to support my body weight to get up or out of a chair I have had my good neighbor come over and pick me up oi cannot keep bothering the ambulance men who have been terrific I must admit
but they have far =more people tp attend to with far greater needs than me mate ah well its back to the drawing board then with the red garter I thought that was a more gentle way than a bucket of ice water all over you and bloody cold to well mate I will say goodnight to you and mrs s take care sorry to have took so much of your time up keep on blogging mate peter jones queensland Australia psp sufferer
hi strelley so it looks like the red garter has had the Richard then mate good job I didn't give my love of falling over away then \\ wellyou are right with a few things mr s I do have a very bad turn s of freessing gait my friend I have two walkers and a waking stick for my mobility but one night I got out of bed and stood up and turned and fell onto the walker taking a slice of my ear off io ended up in the ambulance on my way to hospital there they got a plastic surgeon to stitch the part of my ear back on and made a very good job of it you would not even know I had it done but you are right I try ands cut down on the falls I have but the more I think about what im going to do im over again but my luck wont hold out forever mate I know this I had a bone density test and they gave me great results not that I think ok you have good bones you will be ok if you fall
but I think sometimes that the wheelie walker is much to be desired because i9 have had one go right over the top of my head it was to light but I thought 84 falls was quite reasonable I think jill has that in about 3 days so i thought I was doing ok but obviously im not ive tried to retrain my brain such as it is to get over this problem but I afraid it has not worked and also im afraid to say I am a bit stubborn when it comes down to it mate I fall down I get up although lately I have not been able to support my body weight to get up or out of a chair I have had my good neighbor come over and pick me up oi cannot keep bothering the ambulance men who have been terrific I must admit
but they have far =more people tp attend to with far greater needs than me mate ah well its back to the drawing board then with the red garter I thought that was a more gentle way than a bucket of ice water all over you and bloody cold to well mate I will say goodnight to you and mrs s take care sorry to have took so much of your time up keep on blogging mate peter jones queensland Australia psp sufferer
This coming year, 2015, there is the London Marathon that will be run on April 26th. The PSP association in London has been represented in past marathons. Thirty years ago my husband Steve ran the marathon and now our daughter wishes to run this marathon and represent her father who has had PSP for about 14 years. She will find sponsors and hope to raise money and awareness in this manner.....Is there anyone out there who would wish to join in this effort.....and be a larger presence in the race?
Certainly something a bit more comfortable!
Our local support group will be having a Christmas fair in November, but not quite in the same league.
Mo
HI ,MY CHOIR IS HAVING A HYMNATHON (100HYMNS NON STOP) FOR PSP AND CJHOIR FUNDS
ANHY SPONSORS WELCOME
LOL JILL ]
