Neil is having a great day,I have not seen him like this in a year +.
He got himself out of his recliner chair,which is no easy task and pass me and onto the bathroom and had the best bowel moment in a month while I was trying to pick my jaw off the floor and thinking who the heck was that.This morning got himself out of bed and went the bathroom again.Again who the heck is this guy,I'll take it, but a little leary of whats to come next.
Dee😊
I have found a old post from Strelley he explained it fairly well.I miss him,he was such a wealth of knowledge.
This is from 5 years ago.
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How many times does someone rally from psp?
LeighaAnneLeighaAnne 5 years ago 23 Replies
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JoJo-K
5 years agoJoJo-K
Het sweetie, Could you expand the question a little more?
Best Wishes Jo
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peterjones
5 years agopeterjones
HOW LONG IS A PIECE OF STRING SORRY MATE I THINK THATS PRETTY NEAR IMPOSSIBLE TO PREDICT DEPENDS ON A MULTITUDE OF THINGS AND IM NOT REALLY SURE IF ONE RALLIES AROUND IT WOULD DEPEND ON THE PERSON INVOLVED WHETHER THEY WERE FIT OR IN GOOD HEALTH A\PART FROM PSP I MEAN SOUNDS LIKE A QUESTION FOR MR STRELLEY IF YOU WOULD NOT MIND SIR I THINK YOU ARE A BIT MORE ELOQUENT THAN I AM PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
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Strelley
5 years agoHidden
The last thing I am, Mr Jones, is eloquent, but I'll try and respond to LeighaAnne. I'm guessing from your previous blogs that your query is about your dad having periods when you think he's really bad and then he seems to improve.
It's very common from the onset of PSP for sufferers to have periods when they appear to stabilise (and some even say they seem much better). In reality, and sadly, PSP is always a downward progression with key events (e.g.serious falls, aspiration pneumonia etc) along the way, although not all sufferers will necessarily have these serious events! Some have a progression until the final end stage that can occur quite rapidly (and may last a few weeks to many months). Others have some serious event and then rapidly decline until the next serious event and decline more (a step wise progression).
Along this pathway, as just mentioned, some actually seem to stabilise (or appear to improve. Of course medication may improve symptoms sometimes). Apart from improvement through medication, other improvement is really difficult to explain medically in PSP. It's possibly best to explain that in Parkinsons (and PSP etc) it takes about 50-80% of the neurons to die (in a particular place in the brain) BEFORE symptoms start. So the rest of the neurons, though few, are still "firing". They soon begin to flcker, sometimes firing and sometimes not. I think this has a lot to do with the "rallying" we see in sufferers. The neurons are not completely dead, but struggle to fire, and when they seem to have almost stopped (shown by severe symptoms), they sometimes have a burst of activity, and the symptoms seem to improve. Sadly, it's always short lived.
For example, my wife started to have freezing gait, so I called in a neurological physiotherapist. She has worked on my wife to help "fire up the troubled neurons that may be still alive but flickering off and on". She now has less freezing gait but it will not stop the progression, and those neurons will eventually die, and the physio treatment will no longer work. (As stated before, this freezing gait may never be a symptom in a few PSP sufferers).
So, how many times does someone rally from PSP? It all depends on how many neurons have died and how many still fire, and how long they keep firing (in some PSP sufferers they die quickly and survival is short, without much rallying, and in others the neurons keep on firing for quite a long time, and survival can be many years).
Note: PSP affects over a dozen areas of the brain and when enough neurons (and other brain cells) die in that area, the symptoms produced from that area become progressively worse!
_______________________________________________________
Both great names who guided us at the beginning of our journey, amongst others.
Never forgotten.
Rest easy both.
That was brilliant, seeing words from these wonderful people, who got me through those awful first few months.
Dee, Steve did have a few of these rallying moments. Frightened me to death once, when he suddenly appeared in the kitchen. The day his voice came back. They only lasted for a few hours. Certainly didn't come before a huge nose dive. I think has Strelley stated, the neurons suddenly work and the message gets through.
Just enjoy these moments, don't ask questions, accept!
Lots of love
Anne
Hi Dee
Wonderful.
I've never heard of anything sinister about a good day and PSP.
Wonderful!
Enjoy
Oh my god brilliant xxxx
Larry has good days and bad days.
Agree so very strange when out of no where there is a glimpse of the verbal, physical or psychological abilities we thought our loved ones had lost forever. Moments to treasure and see us through the darker moments.
The re-post from a former group member gave such s good explanation - thank you for sharing
Love Tippy
Be grateful for that moment
Dee, hope the great days keep on coming. Nanny857
Charles woke up one day last September. Able to speak clearly, ate regular food, wanted to take a drive in the car, went to the grocery store and had a beer.
The next day it was over. But nice for awhile.
Cuttercat
My husband is coming out of hospital today and I am scared I will not cope.
AN AGONIZING PLATEAU
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