Speed of deteration

[Annabella1]

Hi My father was diagnosed recently after a misdiagnosis, however we cannot get any straight answers. He has gone down hill very quickly, lost his speech, most of his swallow reflex and can barely more, cannot stand and has lost all facial expression. He has a very swollen hand so can no longer type on his ipad. I just wondered can this level of deteriation go on for many years. Its not nice to talk about, but we have to make decision about care etc and don’t know what kind of time frame we are looking at - obviously everyone’s different but a general idea would really help.

[peterjones]

hi annabella 1well mate YOU ARE RIGHT WHEN YOU SAID OBVIOUSLY EVERYONE IIS DIFFERENT I CAN TELL I AM DIFFERENT FROM OTHER MEMBERS WHO WRITE IN FROM MY PROGRESSION TO THEIRS AND HOW MINE STARTED AND THEIRS WAS DIFFERENT ITS A FUNNY SYNDROME THIS PSP IT SEEMS TO DO WHAT IT WANTS TO DO TO PEOPLE \\\\\\\\\LIKE IT HAS A MIND OF ITS OWN IM REALLY SORRY ABOUT YOUR FATHER MATE NOTHING ABOUT PSP IS NICE T0 TALK ABOUT ANNABELLA BUT ITS GOOD THAT YOU ARE ON THIS SITE BECAUSE THERE ARE A LOT OF GOOD PEOPLE ON HERE THAT WILL GIVE YOU STRAIGHT ANSWERS BECAUSE THATS WHAT YOU NEED WITH PSP\\ I DO NOT THINK ONE CAN GIVE YOU A TIME FRAME MATE AS I RECKON IVE HAD IT SINCE 2004 IVE PROBABLY FARED BETTER THAN SOME OF THE OTHERS ON HERE OF COURSE SOME HAVE UNFORTUNATELY PASSED ON IN A SHORTER TIME FRAME\\\\\\\\ WHEN ITS TIME TO GO OR SOMEONE OR SOMETHING MAKES A DECISION THAT YOUR TIME IS RIGHT TO GO \\ I THINK YOUR LIFE IS PLANNED OUT FOR YOU THATS JUST MY OPINION NOT THE OPINION OF OTHERS ON THIS SITE MY FRIEND I WANT TO MAKE THAT CLEAR TO YOU BUT I WOULD GET THINGS N PLACE FOR YOUR FATHER DO NOT LEAVE EVERYTHING UNTIL THE LAST MINUTE GOOD LUCK AND TAKE IT EASY MATEY PETER JONES QUEENSLANDS AUSTRALIA PSP SUFFERER

[flicka in reply to peterjones]

Peter Jones from Queensland I always knew you Australians had guts but you have a kind straightforward compassion. You are AMAZING Best wishes Flicka

[peterjones in reply to flicka]

well thank you flika for your kind words mate i wish i was amasing [ still cant get the letter i want on my computer for amasing\\\ if i had been i would have called myself The Amasing Peter Jones FOR MY COMEDY MAGIC ACT AND SINGING THAT I USED TO HAVF BEFORE I GOT SICK BUT IVE BEEN THERE AND DONE THAT

THATS ANOTHER E3PISODE IN MY LIFE AND REALLY I AM NOT TO BADLY OFF AT PRESENT I CAN STILL THINK FOR MYSELF AND GET BREAKFAST FOR MY WIFE AND WASH UP THE DINNER THINGS AT NIGHT=====YUK

MY WIFE KEEPS ME ON MY TOES AND MOVING AROUND AND IVE ONLY BEEN NY=TO HOSPITAL TWICE FROM FALLS I DO LOOK A BIT VACANT AT TIMES BUT MOST OF THE PEOPLE THAT KNOW ME THINK IT;S OK NOT THAT I CAN WORRY ABOUT WHAT OTHER PEOPLE THINK NOW ANYWAY\\\\IT IT WOULD NOT GET ME ANYWHERE WOULD IT MATE

I HAVE ALSO \\ NO IT DOES NOT MATTER IVE SAID ENOUGH ABOUT MYSELF

ALREADY WHERE ARE YOU BASED FLIKA IN THE UK \\\\\\\!ANYWAY I WILL SAY GOODNIGHT TO YOU THE AUSSIS ARE PLAYING THE LIONS FROM ENGLAND THAT I WANT TO HAVE A LOOK AT SHOULD BE A GOOD MATCH SEEING AS YOU BEAT US ONCE ALREADY THIS IS A DECIDER MATCH SO =TAKE CARE LOOK AFTER YOURSELF PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[shasha in reply to peterjones]

YEAH THE LIONS WERE GREAT !! BUT I WAS SORRY FOR OZ

LOVE SHASHA

[peterjones in reply to shasha]

shasha it was a shame but think the best team won on the night it was was a good game though wasnt it mate and of course i was sorry we never won but thats the way it goes see yer peter jones queensland australia psp sufferer and it was good to see you on here again mate so take care look after yourself your bloods worth bottling shasa

[SharonAB]

Dear Annabella1,

Unfortunately, you are unlikely to receive straight answers on longevity, quality and quantity of life with PSP.

Can a level of deterioration go on for years? Yes. For weeks? Yes – it varies enormously from person to person. Not enough is known about PSP to determine when the disease starts in the body and what path it will take. It is a cruel disease that does not follow a timeline to allow you know where things stand for how long.

When people ask me to describe things about my husband and how long he has been unwell or how long he will live, I tell I have no answer and Dr's do not know either - and of course, they look confused. When I then I tell them that PSP is an illness that is affecting ALL muscles and organs of body and they are all slowing down people understand a little better. When I further describe that this includes not only what we see on the outside but also what is also inside and who knows which will slow right down first or stop first people tend to visualise things a little clearer.

Of course, all this does not help when we need to make decisions on care, help, support, living arrangements, homes, and work – In fact for all the things that we do everyday - life in general.

For me they are quite timely pertinent questions you ask – for only last week I was asked to make assumptions on where John will live, and what level of care he will require for the rest of his life and for how long. These are answers I have had to make based on a very loosely calculated ‘guess’ and the answers directly affect where my daughter and I will live, and where she will go to school and where and when I will work and study.

My answers given were based on what I have read and learnt about PSP, what the neurologist, allied medical professionals and those who care for John say, on what I have seen with other people I have closely known over the years who have died of untreatable diseases (advanced cancers and hospital superbugs) and the discussions I have had with palliative care nursing staff. John would have been destroyed to hear my answers – some were six months, some were two to five years. Who knows whether I was at all accurate, only time will tell?

So where do you go to reach your own conclusion and is it realistic for you to do? Yes it is a piece of string question...

The networks and life experiences you or your family or friends have are all valuable resources to understanding PSP and its advancement in your fathers life. For it does seem that PSP has so many facets - it symptoms mimic so many other illnesses at times.

For example, it was only when our daughter (six year old at the time) pointed out how John's breathing was laboured at night (she copied him) that the doctor (who then checked John for sleep apnoea) was able to demonstrate to me how John's breathing should be - for someone with a neurological condition. From there she was able to demonstrate how it was likey to falter as his condition deteriorated in the later stages of his illness. Though John does not have a heart condition, I was able to draw on similarities with a friend who had a series of strokes.

N.B. I have not heard of body fluid retention and circulation problems restricted to one hand - Perhaps something to follow up with and question.

Regards,

Alana – Western Australia

[Hidden]

Hi, as others have said it is a very individual illness, obviously depending which areas of the brain are affected in order as the illness progresses. My mum was misdiagnosed for 4 years as initially it seemed that she just had a balance problem. However we could see cognitive issues and eyesight problems, slurring of speech etc and it was when mum began freezing I recognised parkinsonism and was advised by someone who has experience of Parkinson's to ask for referral to a neurologist and mum was diagnosed in March 2012. Hers was extremely aggressive and by that May I had to get her into care. After a major infection in August she descended further and had to go onto the nursing floor and directly after Christmas dropped suddenly into end stage, again pushed along by an infection.We lost mum in February so the end stage was drastic and fast for her. This is not always the case Infection management is the key to any chance of longevity. But I do think age plays a part-mum was 76 when diagnosed.

best wishes,

Dianne x

[k80y]

Hi, so sorry about your dad, my dear Aunt has had this for 20 years, she is now immobile but only for last 6 months, however she is very much with us as a person, just slower. K80y x

[CarlaL48]

So sorry about your Dad, Annabella. It does seem to be accelerating awfully rapidly, but as the others said, this horrible disease can take any number of paths in its destruction. Everyone is different.

My husband fell for the first time in late 2011. It took us all of 2012 to get a diagnosis of atypical Parkinson's (still don't have a definitive diagnosis of PSP). As of a month ago, Dale (hubby) can no longer walk at all. He can shift his weight long enough to transfer from one seat to another (wheelchair to chair, etc.).

About your father's swollen hand, Dale has had that for periods of time and the doctors don't know why he is retaining water. At present, his hand is normal, but both feet have been terribly swollen for weeks - even in the mornings. (Looks like my feet as a young woman 9 months pregnant.)

Please keep us posted on your Dad's progress, and God bless you.

Carla

[jillannf6]

HI

I HAVE PSP DIAGNOSED DEC 2010 AND AM STILL HERE UPRIGH TMOS TOF THE TIME

I FALL A LOT / HAV E SPEECH PROBELSM / BOWEL AND B;ADDER PROBS/ EYES AND CANNTO WRITE ANYHTHIGN AT ALL (My TYPING SI DYSLEXIC)AND I CANNOT DO ZIPS AND BUTTONS,./BEEN V TEARFUL OVE RABSOLUTELY NOTHING

BUT LIEK PETER JONES I AM SSTILL HERE AND GOOOD IN HTE SENSE THAT MY CONDIITON COULD HAVE GOT WORSE MORE QUICKLY

SO NO OONE KNOWS JHOW LOGN WE HAVE GOT WHATEVE RORU ILLNESS MAY EB

MY DAD IS NOW 91 AND FROM A FAMILY OF LOGN LIVERS SO HE WILL PROBABLY OUTLIVE ME NOW

BUT I JUST JHOPE I DO NT LINGE RIN A STATE WHERE ICAN DO NOTHIGN FOR MYSLEF AT ALL - I HA VE POA AND A DIRECTIVE DRAWN UP FOR HTE EVENTUALITY )

(i OVERCAME BREAST CANCER IN THE LAST 12 MONTHS NAD AM NOW CLEAR FO THAT)

LOL jiLL

[jimandsharynp]

It is my understanding that from diagnosis you could be looking at 3 to 11 years. Of course there are no "rules" with PSP and everyone is different. Then there is the possibility of pnumonia from aspiration which can take a life at any point. Wish I had more help but we are all in the twilight zone so to speak with PSP.

Jimbo

[stalbans]

I can remember when I was Chief Engineer at sea last in the early 2000 I used to Shake bad and one of the managers asked had I Parkinsns Transpires I have recently been diagnosed with PSP moral of the story is how long had I been with this , And now I feel so bad and full of pain it worries me when you talk of Life expectance

PSP France