ONLINE PARTY

[jillannf6]

IT HAS GONE WELL SO FAR SOTHEH MUSJC ANF DANCING SHOULD

START NOW!

SO IS THE BLUEGRASS SUITABLE 4 DANCING 2 ??

LOL JILL

[Mwick175]

PSP support group?

[jillannf6 in reply to Mwick175]

hi mwick175

it is an online support group if you like - where are u based the UK, or where in the world? people come fm all over the world to join in tEh PSPA

lol Jill

[Mwick175 in reply to jillannf6]

Hi Jill, I am in U.S. Hoping to contact with others dealing with PSP. My husband was diagnosed nearly 2 years ago. Thank you.

[Heady in reply to Mwick175]

Hi Mwick175, welcome to this site. Glad you have found us at last!

We are all sufferers of PSP, or carers, like me, who are in regular contact through this page. Because we all in the same boat, we all speak the same language! Everyone helps each other. If you have a problem, just ask, if you need to scream, kick or cry, come on line. Nobody will judge anything you say, because we will be feeling EXACTLY. The same! We all share the good, the bad and the ugly. Some will frighten you, some will give you hope, others will just make you laugh. As PSP is rare, very few people will have heard of it, even the medical professionals, as no doubt you are already aware! Everything I know about PSP I learnt from the good folk on this site.

The main advise is to take one day at a time, concentrate on what your husband can do, not what he can't, most of realise that you are not alone in this. WE are all here to help you through this journey, that you and your husband are on!

Looking forward to talking to you.

Lots of love

Heady

[Mwick175 in reply to Heady]

Thanks Heady! I really need to concentrate on what my husband can still do, otherwise it is just so depressing to see him slip away before my eyes. I get so frustrated some days and feel like it is all being left to me to handle. I look forward to talking with everyone

[jillannf6 in reply to Mwick175]

HI MWICK175

HEADY IS RIGHT BUT IT IS DIFFICULT TO TAKE 1 DAY AT A TIME IN REALITY -OTHERWISE E YOU HAV NOTHING TO PLAN FOR WHCIH I STIL L LIKE DOING - 4 HOLIDAYS ETC

I WA S DXD 4 YEARS AGO AND AM STILL HERE- (TYPIGN NOW V DYSLEXIC AND FALLING OVER TOO MANY TIMES A DAY) BUT HEY HO IT COULD

BE A LOT WORSE - I THINK I HAVE THE SLWO SORT OF PSP

ALHTO I HAVE PROBLEMS NOW WITH INCONTINENCE AN D WEAR PADS AROUND THE CLOCK AT LEAST MY BLADDER AND BOWEL ARE STILL WITH ME ~(IF YOU KNOW WHAT I MEAN)

AND I CNANOWT CO=ORDINATE AT ALL DOING ZIPS UP ON TROUSERS IS BNIGH= ON IMPOSSIBEL FOR ME BUT STILL HAVE NOT GOT JOGGING PANTS OR VELCRO YET!

LOL JILL

[Heady in reply to Mwick175]

Hi Mwick175, we ALL get frustrated, we ALL hate having to deal with everything on our own. We ALL, rant and rave at our loved ones, because they can't do what we want them to be able to do. I, for one cry far too many bucket loads of tears, drink far too much wine too get get me through, but we do get through each day. Sometimes I wonder how, but if you go to bed, you still in one piece and your husband, with not too many bruises, then you have succeeded. That is the bottom line, you HAVE succeeded. The day might not have gone the way you planned, but YOU DID SUCCEED! Never, ever forget that!

Lots of love

Heady

[jillannf6]

HI ALL

R U TOO TIRED TO DANCE A LITTLE:

LOL JILL

[kryste]

Yea yeppy YEA LOL

[jillannf6 in reply to kryste]

`HI kryste

good to c u making the party1

how is your aunt bEV BY THE WAY

(NO PARTYING FOR HER IN HOSPITAL)

LOL JILL