Spreading the word

[Kathy]

Last Wednesday we had to take Mum to A+E. We called the ambulance and had a 2 hour wait as it was considered to be a "non-life-threatening" event.

When the crew did turn up , they couldn't have been nicer!!

As expected, they had never heard of PSP and had no idea of the problems it causes BUT they were very interested and asked lots of questions and by the end of the journey they had an idea of the basics.

In future, I hope, if they come across someone else with the condition they can at least say "Oh yes, I've heard of that!"

Fortunately, they were able to sort Mum out in A+E and we could bring her home again the same day

[jillannf6]

HI KATHY

I AM SO SORRY YOUR MUM HAD TO GOTO AANDE IN THE 1ST PLACE

BUT GOOD THA TYOU WERE ABLE TO GIV EHTE PARAMEDICS SOEM HELPFUL INFO ABOUT PSP

I HAVE CARRIED THE SMALL CARDS AROUND WHICH I GIVE TO ANYOEN INTERESTED BUT I HAVE RUN OUT OF THEM NWO

THEY R A GOO DSTANDBY IN CAS EYOUR MUM I SON HE ROWN

LOL JILL

[peterjones in reply to jillannf6]

hi jill i y\think thats a good idea to have cards printed out for people with psp \\ i have fallen over in the street and people came to help me up and when you tell them you have psp i draw a blank theres not many people know about it \\ i went to a hospital and was talking with a nurse she said to me your voice is very quiet i said yes i have psp she said whats that \\ and again i went to an opticians for an eye test i thought i will tell her that i have psp and again she said to me'' whats that'' and i thought to myself its a good job i did not ask for my leg to get amputated \\ joke \\ just because i thought these people should know

i suppose \\ but if i had a card it would be a lot easier for the people i come in contact with\\

it would also save them the embarresement of saying to me'' sorry i think i'm a bit deaf could you say it again''please \\ because my voice is very quiet and a bit garbled

but how much info can you get on a business card and what do you put on it because if you put i have psp that takes you back to square one again any comments would be appreciated

[JudyJ in reply to peterjones]

Peter:

Wasn't it you who posted sometime ago (before the 1st of the year) that you had a card made up with PSP info and that you had it, and passed them onto people who needed to know, or had ?'s about it? If not, I've confused you with someone else, but I thought it was a great idea.

[JudyJ in reply to JudyJ]

ooops...should've read to the bottom of the blog; Kathy answered that ?

[SuzieQ]

Sorry to hear your mom needed a visit to A&E. Hope it was nothing too serious and she is recovering well. We had a similar experience recently with my hubby, in fact twice in one weekend when we had to call paramedics. On each occasion they had not heard of PSP but as Jill mentioned, I always carry the little information cards and was able to pass these to the paramedics both on the journey to hospital and again to the guys who brought us home. At the hospital I handed out several cards to people who attended Tony who were unfamiliar with the condition, so in total I reckon there are now at least least a dozen more people who have become aware of the dreaded PSP. If everyone does this perhaps eventually in the future this terrible illness will become better understood.

Take care..........SuzieQ x

[kay1]

same as with the cards! The care home had to call Dr. to Frank yesterday, out of hours, we were "grilled" by the receptionist who had never heard of and the nurse must have been on the phone half an hour trying to explain the condition however when Dr and asst. arrived they both had knowledge of PSP. We thought Frank had a chest infection breathing so bad, Dr. told us chest was clear, just mucus etc back of throat he couldn't clear. He is on antibiotics for yet another UTI that was from Friday. We live to fight on another day x

[Aine2]

My brother passed away on Dec 5th from P.S.P. , We are now trying to raise awareness .. Some family members are running a marathon next month , so we started an appeal on facebook . We had a half page in our local paper last week all about the condition and we will be on local radio in the coming weeks . . we have in a short space of time raised almost 1000e . We live in the south west of Ireland and most people here never heard of P.S.P. either , but by the time we are finished we will have our County at least , educated on this horrible disease . Sending you and your mum love and best wishes ... xxxx

[Kathy in reply to Aine2]

Wow!! That's brilliant Aine Well done on raising such a large amount and good luck to all the marathon runners!!

[Aine2 in reply to Kathy]

Thanks Kathy , we are doing great , well over 1000e now, and about another 500e pledged ..With another 3 weeks to go before the marathon .We have several events planned for the rest of the year , hoping to raise 10,000e this year but we'd settle for 5000e ....

[Sayer]

PSP suffer would like to make small cards to hand out to helpers etc. but having trouble

being informative and consice. at the same time. Any help very welcome.

Stuck

[Kathy in reply to Sayer]

Hi,

No need to re-invent the wheel!! The cards everyone are referring to are available from the PSP association. You can contact them via the website and they'll send you some

pspassociation.org.uk/

[jillannf6]

hi yes

these cards are great to hadn out to peopeol

(professionals ro peopel who help you outside)

lol jill