NOT MUCH OF A HOLIDAY SAD TO SAY - I HAVE GOT PSP AND NOT PD WORSE LUCK - I HAD A TEST TODAY OF LEVADOPA INJECTED INTO MY FAT BELLY - AND IT DID NOT HAVE THE EFFECT OF MAKING ME DO MUCH BETTER AT ANYTHING- WALKING - STANDING - THE USUAL HAND FLIPPING TESTS AND FOOT STAMPING - I ENDED UP BEING VIOLENTLY SICK AND BEING TOLD - NICELY - THAT I MOST LIKELY HAVE PSP....
SO THERE WE ARE - 3 YEARS DOWN THE ROAD AND HALF A TON OF USELESS DRUGS AND I NEVER HAD PD - I AM A BIT PISSED OFF TO SAY THE LEAST AND TIMORROW I SHALL PROB FEEL BETTER BUT TONIGHT I HAD TO HAVE FRED AND MIMS LOOKING VERY SAD AND A LITTLE ANGRY - AT LEAST MIMS WAS .. FRED NEVER GETS ANGRY ABOUT ANYTHING
LOVE TO ALL MY PARKIE PALS AND JILL WHO HAS PSP TOO
SHA XXX OOOO XXXX
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shasha
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I AM SO SORRY THA TYOU HAVE PSP BTU PERHAPS IT IS BETTER TO KNOW NOW
THAN WHEN YOU WERE TAKIGN SO MANYH DRUGS WHICH DID NTO HELP
AT LEAST WE CAN C OMMISERATE TOGETHER ON THIS OWNE
IK AM PRETTY SUR EI HAVE THE SLOW TYPE AS I AM SITLL HERE WITH ALL THE CRAP THAT THAT IMPLEIS
IAN SAYS I AM V RUDE IN MY EATING HABITS - CANNOT WAIT UNTIL EVERHYOEN IS SEATED B 4 I START ' PUT TOO MUCH FOO DIN MY MOUTH AND OF COURSE I ENJOY THE RED WINE AND CHOCOLATE !!
1
AS AL SAYS - HAVE AC OUPEL OF DRINKS AND TRYH AND FORGETABOTU TOMORROW
hey that is so funny about the not being able to wait for your food - i wonder why that is - i an
m always in trouble with fred for starting first - infact he does not give me my kniife and fork now until everyone is seated- hasnt he heard of fingers ?!!!
freds knee op is booked for the 3rd dec when i shall once again be incarcerated in a hospital - actually it is just AMAZING HERE WHEN YOU THINK ABOUT IT
Really sorry to hear the news. You and Fred are so strong that you will help each other, I am sure. You are so lucky to have such a supportive partner. I have been told that there is research into PSP as well as Parkinsons going on, so we can only hope some progress will be made. Take care and keep posting.
THANK YOU SUE - YOU ARE SO SUPORTIVE - TELL ME MORE ABOUT ALL THE STUFF YOU TAKE TO HELP WITH YOUR PD - AND IF YOU HAVE ANY LINKS TO ANY SITES WHERE I CAN READ ABOUT THE RESEARCH
I endorse all the comments made by Angela. You must not give in, but you know that, I am sure. I googled psp and found an association that you could join, if you so wished. pspassociation.org.uk. You probably already know about this. Years ago, if I am right, Parkinsons was known as the 'shaking palsy'. Things change over a period of time and none of us know what the future may bring. As you say, at least you can live without meds and have a drink, or two, when you want it. You and Jill are two of my favourite people on this Site and, thankfully, you have both been blessed with an inner strength.
Keep in touch, please. Thinking of you and Fred.
Sue
I am sorry to hear that Shasha but can we always be sure the doctors have got it right?
If as they say it is a very rare complaint they reckon 5 out of every 100.000 might have it and is misdiagnosed as PD, and as later PD can have the same effects and problems.
I suppose it craves the thought do I have a good neurologist?
Personally speaking I would be happier with a diagnosis from my vet.
Rather like the word Parkinsonism which they use to cover a multitude of sins, when they don't know if you have or haven't.
I am a true cynic, I am sorry. My faith in the medical profession being an ex registered nurse is nil . That makes me sad, because at one time I had the deepest respect for the doctors I worked with.
Just when you thought it was safe.....I'm so sorry. BUT don't you dare desert us!! You are a model of hope & humour - brave enough dive into the sea of uncertainty - to take a drugs break & to deal with the consequences. I don't know what the future holds for you but knowing you as I feel I do you'll grasp it with both hands. Say 'to hell with PSP' & take a few toasts to life!!
I think I'll join you - you'll certainly be my toast for this evening.
Please give Fred my best wishes - my thoughts & prayers are always with you.
thanks so much dear angie - you are far to generous in your description of me though - like i was saying to some of the others - i can at least have a drink now without all the crap that has been inside me - have you seen the article in the mail about creatine - it looks very hopeful for pwp but why not p w psp ??
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