PSP: I don't mean to be uneducated, I have... - PSP Association

PSP Association

7,518 members10,133 posts

PSP

Casper3564 profile image

I don't mean to be uneducated, I have parkinsons and was diagnosed jan/2014. What does PSP stand for?

16 Replies

casper 3564 well matey psp stands for PROGRESSIVE SUPERNUCLEAR PALSY AND I HOPE YOU HAVE NOT GOT IT MATEY AND EVEN THER EDUCATED DONT KNOW WHAT IT IS SO DONT WORRY ABOUT NOT KNOWING MATE TAKE CARE WITH YOUR PARKINSIONS MATE ALL THE BEST PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER YOU CAN LOOK IT UP ON YOUR COMPUTER MATE IF YOU WISH

Casper, PSP can mirror some of the classic Parkinson's symptons. My husband is on a Parkinson related tablet, although PSP does not really respond well to medications. There is not a huge number of people diagnosed with the condition, so research and development of tailored help is not really available. Others on this forum are better placed to give you info as Malc started neuro symptons Aug 2013 but we didn''t get the diagnosis confirmed till last November.

Take care of yourself

As the others have stated its Progressive Supranuclear Palsy . A rare degenerative illness. It is regularly misdiagnosed as Parkinsons hence the stats that there are only approx 4000 stated cases in the Uk (more likely 10000). initially those diagnosed with Parkinsons are placed on Sinemet until it is noted that sufferer isnt responding to it and the symptoms for PSP become gleamingly obvious.

my mum was diagnosed about 8wks ago having been diagnosed with vascular dementia 3 -4 yrs ago.

PSP is an awful illness.

You take care of yourself and good luck with the Parkinsons x

Easy way to describe it (neuro) parkinsons plus plus. The decline that a parkinsons person wil have will take years but someone that has progressive supranuclear palsy it only takes months and they seem to have more symptoms then a parkinsons person. So psp is a rotten desease hope this helps. Janexx

Progressive Supranuclear Palsy

google it and fidn out more!

lol jill

HUGS AND XX TO YOU

SORRY I DID I NOT MEAN TO EB ABRUPT WITH YOU

SPEAK SOEM MROE LATER

LOLJILL

jillannf6 profile image
jillannf6 in reply to jillannf6

HI I LEAVE A BIT MORE DETAIL BELOW

LOL JILL

:-)

I HAVE PSP AND TI COULD BE A LOT WORSE =- I THINK I HAVE THE SLOW SORT AS I WAS DXD OVER 4 YEARFS AGO NWO AND AM STILL HERE.UPRIGHT MOST OF THE TIME (I USE A WHEELCHAIR INDOORS AND OUTSIDE NOW FOR MY OWN SAFETY AND FOR OTHERS TOO AS I WAS BRINGING THEM DOWN WITH ME)

I HAV E MAJOR PROBS WITH MY BALANCE

WIHT MY EYES AND SEEING DOUBLE/ DRY EYES A SI DO NOT BLINK MUCH AND LOOKIGN UP ADN DOWN IS A PROBLEM 4 ME

INCONTINENCE PROBS TOO ( NOT TOO BAD BUT GETTING WORSE

COMMUNICATION PROBS =- V DYSLEXIC TYPGIN(!)./ SPEECH PROBLEMS- MY SPEECH IS V QUIE TAND IC ANNOT MAKE MYSELF UNDERSTOOD-BUT I AM SITLL SINGING INA CHOIR WHICH IS GREAT AS IT SLOWS ME DOWN

AND MY EXERCISE FO CHOICE, IS TAI CHI WHICH SI GOOD 4 BALANCE AND A GREAT SOCIAL GROUP TOO

,

BUT I AM GOOD IN THAT I AM 69 IN 2WEEKS AND DID NOT THINK I WOUDL GET TO THIS AGE AT ALL SO EVERY DAY IS A BONUS

\

LOL JILL

:-)

DenB profile image
DenB in reply to jillannf6

Hi jillanf6

I am a carer for my husband who has CBD and I have just read that you are in a choir.

I have been in a choir for 5 years now and hoping, hoping, hoping that I won't have to give it up just yet...or ever....but things don't look too hopeful.

I absolutely love singing as you probably do

I have been thinking of asking Crossroads people if they might be able to sit with hubby whilst I go on a Monday night but he is not keen.

Happy singing !

D x

jillannf6 profile image
jillannf6 in reply to DenB

hi den

i suggest you must keep your singingn going and get someone to sit with uyou husband or do you have any paid carers

;lol jill

DenB profile image
DenB in reply to jillannf6

Hi Jill

Where do you sing!

I haven't been for a couple of weeks now.....I don't have paid carers but hope to be able to get someone soon to sit with Roy.

I miss the singing and I also miss the people there.....never mind hopefully it will get sorted out!

D x

jillannf6 profile image
jillannf6 in reply to DenB

9

jillannf6 profile image
jillannf6 in reply to jillannf6

HI DENB

I SING WITH A LADIES CHOIR AND WEDO 2 CONCERT SA YEAR A STHE CHOIR LEADER IS A PERFECTIONIST AND WANTS US TO GE TIT RIGHT!

I WAS PART OF A HYMNATHON FOR PSP AND CHOIR FUNDS LA ST NOV. WHICH WAS V GOOD IN THAT NEARLY ALL FO US (50 in no.) sung 100 hymns non stop in aid of PSP and choir funds=-it took 4 hrs but we did it - so that was an extra - not a concert as such but important to do it

IT SLOWS ME DOWN AND EHLPS MY BREATHIGN AND SI A GREAT WAYH TO MAKE MUSIC IWHT LIKE MINDED PEOPLE1

LOL JILL

:-)

DenB profile image
DenB in reply to jillannf6

Well done, Jill.........100 hymns.....not sure. I know that many hymns........ sounds brilliant.All that lovely singing without singing!

Hey, Jill,have you seven the new 'Marigold hotel' film yet?( can't remember full title)

We are planning to go either this week or next, although, my husband usually falls asleep in the cinema these days but we have always loved going to the cinema, especially during the daytime when we had the time.

D x

DenB profile image
DenB in reply to jillannf6

Sorry, I meant to say all that lovely singing without stopping!

It was explained to us that Parkinson's involves dopamine levels in the brain, and PSP is result of tau tangles which is a whole different mechanism, but affects the same part of the brain, thus appears very similar, but totally different disease.

You may also like...