Joanne bale

[Joannebale43]

I just want to say how much I get from this forum, everyone's input in inspiring. My dad has psp and this forum is helping us no end - thank you x

[dorothy-thompson]

Dear Joanne

I second that, it is one of the few good and best things in all our journeys.

Take care

Dorothy thompson

[Joannebale43 in reply to dorothy-thompson]

I Agree dorethy you take care also

[jillannf6]

hi Joanne

i am glad than you find good tidings in hte forum

log may it continue

(i have psp and have been signed in since my diagnosis 3 yrs ago

)and am still l here upright most off he time_

lol ji;ll

[Joannebale43 in reply to jillannf6]

Oh that's good to hear Jill - take care x

[peterjones]

hi joanne bale 43 its good to have you on board mate I hope you continue to be with us in the future say hi to your father for me and tell him to hang in there peter jones queensland Australia psp sufferer

[Joannebale43 in reply to peterjones]

Thank you Peter - I will do that - take care jo

[peterjones]

mrs and mr cedar I am having trouble with my puter have sent you an em regarding your story a good one and funny I will reply as soon as I get sorted out take care hang in there mr c ps I do not think you will get em that I done about 2 hrs ago thank you joanne bale for cutting in this is the only way I knew how being puter illiterate thanks again see yer peter jones queensland ,Australia psp sufferer

[easterncedar in reply to peterjones]

Hi, Mr. Jones. I didn't get the other email, but I'm happy to see this message. It's always cheering to hear from you!

[peterjones in reply to easterncedar]

hi mr and mrs cedar im still battling this dang puter mate but better than a dang bear take care see yer peter jones q.l.d. Australia psp bloke

[easterncedar in reply to peterjones]

Don't let it beat you, Mr. Jones! We all need you too much!! (Do you know the expression, "Some days the bear eats you, some days you eat the bear"?) All the best. Easterncedar

[jillannf6 in reply to easterncedar]

OI HAD NOT HEARD THA T SAUIIGN =-MUST BE AMERIICAN!

LOL JILL

:=-)

[easterncedar in reply to jillannf6]

I'm not too keen on the idea of eating bear, although it surely beats the alternative!

[peterjones in reply to easterncedar]

MRS EASTERN CEDAR NO I CANT SAY THAT I HAVE HEARD OF THAT EXPRESSION MATE BUT I HAVE NOW THANKS FOR THAT SEE YER PETER JONES Q.L.D. AUSTRALIA PSP SUFFERER

[jillannf6]

hi peter

u r not 'puter illiterate - u do very well keeping going on the puter

so don't let it beat you will u??

lol jill

[peterjones in reply to jillannf6]

hi jill hows it going thanks for your em having a terrible time with puter but will not give in it will not beat me mate I hope all is ok with you I had two falls yesterday but nothing to bad I also had a bone density test just to see how I was traveling it came up I had bones of an 18 year old this time I had last one 2 years ago its a good job I do have the bones of an 18 year old or else I would have had it by now I reckon has anyone else had a bone density test to see how they are going take care jill watch out for those falls mate see yer =peter jones queensland Australia psp sufferer

[jimandsharynp in reply to peterjones]

Peter, I have a PSP contact patient who had a bad fall and concussion with a brain bleed also. In a way I'm sad my Sharyn has lost mobility but in another way it is a blessing.

Jimbo

[peterjones in reply to jimandsharynp]

HI JIM AND SHARYN WELL IM SORRY THAT YOUR CONTACT PATIENT HAD A FALL MATE THAT ;S NO GOOD IS IT YOUR WIFE AS WELL JIMBO WONT YOU FIND IT HARDER NOW MATE BECAUSE YOU SAID IN A WAY ITS A BLESSING ==== WHY IS THAT MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[jimandsharynp in reply to peterjones]

Peter, it's only a blessing in that if she isn't trying to walk there can't be a bad fall. Yes, the flip of that is having to have more of my help because of lack of mobility on her part. Always look in the bright side. LOL Jimbo

[jimandsharynp in reply to jillannf6]

Jill, are you still using "conventional" computer communication or are you using some voice activated tool or some other tool? You do rather well with the typing and entry.

Jimbo.

[jillannf6 in reply to jimandsharynp]

HI JIM

thanks 4 tjhe compliment re my typing!!

ii am stilll usjign cpnventional table top computer/ ipad and iphone -i ha ve on my ipad a programme called "proologue togo" for when my speech goes i know how ot use it when the time comes

(i am playing solitaire and pet rescue_)i am addicted to them both but non money involved/!)

but i am ok apart 4m having a new mouse which is too sensitive for me and moves stuff around when i do noshing!

ps htis ha stkaen me 30 mns to type and correct ir nut there are stilll loads fo typos in it

i am aoto quick with everythig and cannot slow down

but hey it oculd be worse

lol JIll

[easterncedar in reply to jillannf6]

Jill - you're fantastic! Don't you worry too much about trying to fix typos. The funny thing about reading is that our brains do an excellent job of translating for us - mistakes don't really get in the way our our understanding. (And I've been a proofreader fo 30 years, so I know something about that!) The important thing is that you're here. I love to read your writing, you have such a great attitude. Easterncedar

[jillannf6 in reply to easterncedar]

THANKS EASTERN CEDAR 4 YOUR V KID WORDS`

PLOL JILL

[easterncedar in reply to jillannf6]

Hah! Some proofreader I am - I always see my own typos only AFTER I hit send! That's me blushing. All the best, EC

[jimandsharynp in reply to jillannf6]

No problem. Most eyes can fill in words without the words being perfect. Love your spirit!

Jimbo

[jillannf6 in reply to jimandsharynp]

jhi jim

ye s there is af wd doing the rounds which make the point that even if language eis garble dit cna sitll eb read ok

[jillannf6 in reply to jillannf6]

sent b44 finished #

biut hey it si st patiricks day and i shalll enjoy my Guinness now and hope to go to the loo tomorrow after it

(it si 4 days since i have been and i am feeling pretty "full") am tkaignj movicol for it but nothing as ye t1

lol jill

and a

[peterjones in reply to jillannf6]

hi jill just remember THE LORD MOVES IN MYSTERIOUS WAYS MATE TAKE CARE GO EASY ON YOURSELF MATE PETER JONES QLD. AUSTRALIA PSP SUFFERER

[goldcap]

Joannebabe43, I agree. I feel so isolated. I am so sick of hearing," He has parkinsons right? That's not so bad Michael J. Fox has a new series. I used to work in the entertainment business so what few friends I have left now still do and they just don't get it. No, not Parkinsons, he was misdiagnosed it's PSP. PS what? PSP. What's that?

[jimandsharynp in reply to goldcap]

Goldcap, If you are in the UK PSPA has a wonderful card that carries their information on the front but on the back it outlines things that explain how devastating PSP is. I'm in the USA but give that card out to others who ask about PSP. It's easier than explaining it to someone and the card doesn't "sugar coat" how bad the disease is. Jimbo

[goldcap in reply to jimandsharynp]

I am in the USA also. How did you get a hold of this card? Someone suggested today ( I kid you not) that we make a trip to the rainforest for a cure...and he said it with a straight face.

[jimandsharynp in reply to goldcap]

I emailed PSPA and asked if they could send me a few cards and they did. They also sent a lot of other great information about PSP. Some of it is vital and haven't seen it here in the states. Check out their site and ask for what you can use. Jimbo

[jillannf6 in reply to goldcap]

goldca[p

that isiterrible but i guess he believes itg so who are we to judge1?!!

lol jill

[jimandsharynp]

Joanne, Glad this site is helping. If you have any, and I do mean any, questions don't be shy to ask them here. We are here for you, all of us. If we don't all travel this PSP road together some of us will end up in the ditch, so to speak. Do you feel comfortable telling us a bit about your dad and PSP? When diagnosed etc.? If not that's perfectly ok. My dear wife was diagnosed with Parkinson's first then PSP in 2009. Started with balance issues. A feeling of imbalance but not many falls. Since she has progressed with many of the usual symptoms of PSP. Keep posting and join in when possible.

Jimbo

[jillannf6]

yes goldcap

the card is v useful to give to anyone who hasnt heard of psp

loljill

[jillannf6]

HII JOANNE HOW IS UR DA D TODAY?

ANYCHANGE OR NOT?

LOL jiLL

:-0

[jillannf6 in reply to jillannf6]

should be a smiel a tthe end as it si s t patricks day