How many times does someone rally from psp? - PSP Association
How many times does someone rally from psp?
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
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!
All the best and take care.
I had another point, but had to finish the above blog to get my wife up from her afternoon sleep, then make her a cup of tea, then bring in the washing!
It should also be mentioned that Mr Jones is quite correct in talking about the PSP sufferer's general health. So many already have pre-existing medical conditions when diagnosed with PSP, and this can sometimes affect their ability to rally. This can be in a positive way, for instance, contracting aspiration pneumonia, then being treated with antibiotics, and having a short "new lease of life". It can also be in a negative way, for instance, if the PSP causes damage to the autonomic nervous system, anyone with a pre-existing heart or breathing condition can suffer premature heart attacks or may pass away from what is termed neurogenic respiratory failure.
Hope all this helps and is not just a load of waffle!
MR STRELLEY NOT A LOAD OF WAFFLE MATE EVERYTHING YOU SAY MAKES SENSE TO ME I AM GLAD THAT YOU ARE ON THIS SITE AND NOT BEING WASTED SOMEWHERE ELSE THANKS VERY MUCH NOW CAN YOU SEEN ME WRITING THAT WHAT YOU HAVE WRITTEN NO SIREE THANKS AGAIN FOR YOUR INSIGHT AND ELOQEUCE PETER JONES QUEENSLAQND AUSTRALIA PSP SUFFERER
thanks strelly for all you wonderful insights and sensible advice -- how is your wife today ?
Hi Shasha
Thanks for asking about my wife - I guess the answer would be she is doing "reasonably" well. She is receiving some benefit from the physiotherapist that I requested to assist with her freezing gait problems. We try to enjoy life despite her PSP, and I try and make sure every morning has something in it that she enjoys (taking into account her lack of mobility). The afternoons are for sleeping because the morning activities really make her very tired. Tomorrow she will spend the morning with people with Multiple Sclerosis (where once she was a volunteer, now she is looked after as a sufferer of a neurological condition). She plays board games all morning followed by lunch. She really enjoys it!
All the best to you and your own battles! Take care.
thank you strelly for your kind words ... i am so pleased your wife has such an enjoyable time at MS clinic - it is wonderful that she is still able to play board games
love shasha i get to see my neuro on the 4th of june - so will message you about the outcome of my request for an electric wheel chair
That is really helpful Srelley my husband is up and down.
Sometimes I think he has moved into end stages then like a Phoenix he rises from the ashes and is able to talk albeit mumbled laugh and generally be much better.
It is such a roller coaster ride I never know where I am.
As in all things PSP the answer is different for each patient. This is they saddest fact of PSP, no known for us caregivers.
Jimbo
We had a lot of this with mum so even when she dropped suddenly into end stage the day after Boxing Day I still half expected her to rally again but although there was slight improvement it was never enough to get her mobile again. The biggest one she had was last August-she was so poorly that we though this was it but although it took a month to get back walking etc she did it through sheer will power. I do think that amount of effort was a one of and at her age it was nothing short of a miracle. Mum rallied about 4 times from infections that we had confirmed. I think it depends on what they are fighting against at the time-mum was 77 which was another huge factor and her PSP seemed short at 6 years from our estimates but due to her determined, stubborn and independent nature and being taken up with caring for dad it was never clear when things really started.
Thank you all for your answers! what a great site I found!!!!! when I asked this question my dad was eating and talking and we thought wow he's doing great. Today was not like that though. His oxygen went down to 82 has a fever and blood pressure is high nurses think he has a week at most. Like I said before. I know I will see him again!!!! I have a short story to tell you........ I was talking to his nurse and was worried He did not know the Lord. And if you don't kow the Lord you don't end up in heaven. not my way but God's way. She informed me that she prays with him and talks about Jesus to him. Believe it or not that same day. ( My mom had told me later that day.) My dad had his arms up in the air and as plain as day( cause usually you can't understand him) He called out Jesus!!!!!!!! What an awesome thing to witness! I wish I was there to hear it! I know He is saved! Amen! Sorry I didn't mean to turn this into anything religious, but so happy I will see my dad sometime in the furture. My heart aches for all those who have loved ones going through this terrible disease.
Thanks Strelley for your input also Peter for asking questions. See elsewhere but I am back from house swop peter to Thirroul NSW Had most problems getting a shower & wash my hair. Also Virgin Air bus ok going over except for vomit when descending but coming back more problems with balance & this has continued even after getting home - better today see neurologist tomorrow. Our dogs travelled well one with heart problem I kept meds up + older dog - used rescue remedy Bach flowers + jet lag complex homeopathy. These also suitable from humans! cheers marytea13
Thanks Strelley for your input also Peter for asking questions. See elsewhere but I am back from house swop peter to Thirroul NSW Had most problems getting a shower & wash my hair. Also Virgin Air bus ok going over except for vomit when descending but coming back more problems with balance & this has continued even after getting home - better today see neurologist tomorrow. Our dogs travelled well one with heart problem I kept meds up + older dog - used rescue remedy Bach flowers + jet lag complex homeopathy. These also suitable from humans! cheers marytea13
Thanks Strelley for your input also Peter for asking questions. See elsewhere but I am back from house swop peter to Thirroul NSW Had most problems getting a shower & wash my hair. Also Virgin Air bus ok going over except for vomit when descending but coming back more problems with balance & this has continued even after getting home - better today see neurologist tomorrow. Our dogs travelled well one with heart problem I kept meds up + older dog - used rescue remedy Bach flowers + jet lag complex homeopathy. These also suitable from humans! cheers marytea13
dorothy-thompson
My husband was one of the fittest and healthiest people I have ever known and then he was diagnosed with PSP in October 2010. He was given Sinemet for three months but this did not help at all and then he spent a year on the Davenutide drugs trial and this was no help (he was on the drug and not the placebo), he has seen 2 neurologists since 2010, one to diagnose and one - well I don't know why really because he did and said nothing and we've got to wait until the autumn before we see him again. He has seen various therapists, occupational, physio, speech and language, district nurses, doctors, social workers, community matrons, neurological matrons and care managers. Thank goodness for carers who relieve me sometimes.
But I would trade them all if one person, just ONE person, could give my husband something to help him be less angry, less argumentative and plain downright difficult to care for. And even though I know it is the PSP and not the person, I am so exhausted most of the time the strain is intense on both of us.
So sorry.
dorothy-thompso,n
Above all the things I fear with PSP, it's what you mentioned last - the sometimes very negative personality changes-I fear most; for those around me. I understand these personality changes are common with PSP.
It's such a hard disease as it is without that to deal with as well. My heart goes out to you, all caretakers on this site, as well as all caretakers of adults with serious, long-term illnesses.
I have a question about the personality changes, do they ever change for the better instead of the worse?
To the OP, I am so sorry that your father did not really rally and is near the end.
My husband always had a very belligerent attitude. Since his diagnosis following a hip replacement, he has become - for the most part - agreeable, accepting, quiet. No longer seems like an angry person. God is good!
for my dad his personality was hardy ever mean. He had his little moments. But for the most he was very pleasant.
I agree that the rallying depends on the individual. Mum spent 2days asleep after a gastric virus made her so ill she couldn't keep anything down
She could take no meds which were by then keeping everything functioning and we were prepare d for the worst. However by her own sheer willpower she was up eating breakfast on day three and a month later despite the terrible apathy and ignorance of the hospital she went back to the nursing home and managed to get up and walking! I was so proud of her. She later developed shingles over her eye after getting scorched under a hairdryer but was amazingly unfazed after the first day. Made a full recovery and when she got 2 UTIs quickly she recovered again very quickly . The final straw was a UTI at Christmas but although she had dropped into end stage we were not sure if she would bounce back once more . It was only when her muscles stopped working including her mouth that she could no longer swallow and I knew it was just a matter of days. Mum had a pretty fast moving version of 6years duration and was 77. Until then she was very robust and had no medication. So unfair. Take care x
Rally in what way...be cured?...become better intermittently may be possible, but not in my husbands case. I pray in yours, however.
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