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PSP Association
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Psp and pneumonia

My father 86 years old recently he diagnosis as psp patient but I thing he was suffer since several years we refuse the nasal tube feeding and try an accupantur (Chinese needles ) it helps him for some time he he was eating but all doctors in many hospital they refuse to treat him without tube so we accept , he is on sinement tablet dose this help him because he have a lot of side effect I don,t know if it,s from the medication or from psp , what is the worse step coming I am ready to hear and face ( already he get a pneumonia ). Fadwa

11 Replies
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hi fadwa

how r u today?

another day in the life of a PSP carer fort you - another day in the life of a PSP person for me

i am feeling good today 0 not sure why poss cos myh partner and i have a new understanding - hwo long it will las ti do not know but he is not shouotign at em if i fall over which means i only ha d3 falls hyesterdya in the whole of the day - has been as many as 40 when really stressed 0=- like a few weeks ago when my dad died and i was waiting for the funeral - all orgnaisedby my brother

but i digress-htis psPSP can be v difficult for all concerned and i found the sinemet was NOT useful as it did not improve my balance etc in determining that i did ha ve the PSP

eTHE FEEDING TUBE SI A PROBLEM - I HAVE OPTED NOT TO HAVE ONE WHEN THE Time COMES as i do not want to prolong my life when i can no longer enjoy my food

lol jilll

and plz sty on the site - you will find it v helpful in so many ways

and hugs

& xxxxx to you and yours

Reply

Dear jillannf6 you are thoughtful, thank you for replying. you should try chinese acupuncture as it helped my father previously, you're still In the early stage of psp so I hope they find a cure for you soon . Take care

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i have had it for 5 yrs plus (dxd dec2010) so am in the middle stages really

no cure for me but i hope int he future there will eb one 1

lol Jill

hugs and xx to you and your dad

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Hi jillannf6. How are you today really you are brave because you know and facing this disease I don't know when me father had it but he use to travel alone and in some country the people cheating him and he refuse to go with somebody that time he and all family don,t know that he had psp just one year ago we knows I use to go with him to the hospital for all his disease but non of his doctor diagnosis him as psp By the way my mother dead 13 years ago . If you don,t mind it's my pleasure to write to you Big hug to you .... Take care. Fadwa

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i am not too bad ,thanks

how is your dad tho?

is he any better ??

i am so sorry tha tyoru dad has this PSP IT is not easy to deal with but i think it is easier for the person with it than it is 4 the carer )(husband / wife/ partner/ son/daughter etc)

it is good that you ar e there for your dad as yr mother has died ...

lol `Jill

hugs and xxxx to you/ your dad and your family

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Hi jillannf6. Hope you are good today and every day sorry to ask you but may be yr doctors butter than ours may they have more knowledge my father not talking we can't communicate with him only by eyes or some sound our doctors all of tham says he can't understand or feel but I think he did and some times crying with tears sorry once again but what do you know about this . Accept my apologies for this question with my best wishes. Fadwa

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HI FADWA

I KNOW THAT THE INTELLECT REMAINS EVEN IF TEH PSP PERSON CANNOT COMMUNICATE IN ANY WAY SO IF THATIS SOEM CONSOLATION TO YOU OR NOT

I AM GOOD TODAY BY THE WAY

LOL JILL

:-)

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HI FADWA

I MEANT TO SAY THAGT EVEN IF YOUR FATHER CANNOT COMMUNICATE - HE IS STILL IN THERE AND CAN UNDERSTAND EVERYTHING

CAN HE SEE AT ALL- TO WATCH TV OR POINT A T THINGS?

SORRY I CANNOT BE OF MORE HELP

;LOL `JILL

:-)

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Hi jillannf6. You help me a lot . Iam praying for you may goog give you a long healthy life with yr family I believe on god for that I believe of miracle from him really you did for my more than what a doctors did Hug and love for you from Fadwa

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i`m afraid i only believe in god in that he is where

love is!

this my godmother told/ taught me of late (and she is 92 and v frail now )so i a,m no tholdign out for a cure 4 myself but for others who will come after me

lol jilll

:-)

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i` m singing in a Hymnathon (100 HYMNS NON -S TOP)

4 CHOIR funds and fr PSP`MID NOVEMBER-A GOOD WAY TO SPEND AN AFTERNOOIN SINGING FOR PSP

even fi i am in a wheelchair to do it

loljill

;-)

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