Hi, read a report on here recently, regarding a cousin of Aspirin, being of some use for Alzheimer's and maybe PSP.
S is having a very good reaction to Paracetamol. I have noticed it before, but again it has happened. He has something wrong with his foot, probably Gout. Could hardly stand or walk last week. I having been dosing him up on paracetamol since then. Thought he was brightening up. But today, he is even back talking a bit. Enough for me to be able to have a conversation. First in ages!!! Looks better. Eating a lot better, quicker, hardly any choking! This morning's fall, he even was able to work out how to get back up!!! This is after a week, taking two morning and before bed. I realise, it could just be he is pain free, for the first time in ages. It must hurt, constantly falling and banging yourself!!! But he has never complained, or even suggested that he is in pain, until his foot started playing up.
Anybody else had a similar experience? My Mum, who has Alzheimer's, is also on regular Paracetamol and the difference in her is incredible. I know, eating is also a huge factor in her as well. But it is making me wonder???????
The best bit? I asked him, as I can barely understand him anymore, so have to guess his needs, was I getting it right, enough of the time? His answer? "YES!!!! I am doing very well". Don't need to explain to any of you how I feel!!!!
Lots of love
Heady
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Heady
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When my guy went to the hospital after his bad fall in July, the doctor who x-rayed his hip diagnosed arthritis and recommended acetaminophen, as paracetamol is called in the U.S. Up to then he had been taking ibuprofen for the pain. The doctor said the ibuprofen might be contributing to chronic anemia, pointing to all the bruising my guy had. So he started using the paracetamol every day. He still falls, but the bruising is quite noticeably reduced. Other than that, the have been no improvements in his condition at all. I'd not be surprised if the pain reduction was causing S to improve overall, but if it works, for whatever reason, more power to it.
THIS is IMPORTANT though: paracetamol, or acetaminophen, can be FATAL at doses very little over the recommended level. Folks must be VERY CAREFUL about this. Since the ingredient appears in cough medicine or other fever reducers, it's easy to take enough for an overdose that can cause organ damage or death.
I'm very glad, Heady, that S is doing better. That is wonderful, and I don't mean to rain on your parade. I just want folks to be safe.
No probs! I am concerned, in giving too much, but know that we are well within the recommended amounts.
You can't rain on my parade. PSP is doing that nicely. With S stepping backwards, so some "dear olde" symptoms are reappearing. There can't be ANYTHING worse than an old symptom coming back into my life!!!! His ###################### bladder is playing up again. Convene not working, think it's too old, can't get a new replacement. Pads not working, so back with loads of washing AND a +++++++++ broken Tumble Drier. Life is never boring with this ¥¥¥¥¥¥¥¥¥ rotten disease!!!!
Oh my do I feel for you!! Like exactly! The dryer at the old farm of his where we spend our weekends is completely broken and the washer won't fill itself, so I use the hose for the wash and the line for the drying those two days. Roughing it! (Actually, I like hanging clothes on the line - a chore with a view.) But still, two loads of washing every morning, including before I go to work. And have I mentioned my ancient cat who is suffering from chronic diarrhea? Lots of floor scrubbing...
I have a young pup to contend with. It's very funny, but the days I am clearing up after S, the dog decides it's a good idea as well! I am definitely coming back as male next time!!!!!
wE couldn't get in with it far too cumbersome,but did use it with the straps cut off and while in bed I would use the pressure part with a bag attached so that I could use it for John if he needed a wee whil in bed . I use to tilt the bed so that it flowed away .
he was incontinent , still isn't luckily but now has a night pad which is mostly dry and a day pad. I line th back part of the pad with a conti cleansing wipe in case of stains I can then reuse the pad when I commode him .
much like using a napkin liner . not that they had them in my young days .
grateful for it now .
I have left John in bed this morning . the carers came at seven and he was very difficult to rouse . wE get days and nights like this . he was thrashing , jumpin and jerking . acting out his dream . yesterday h saw solders with helmets on .
when I tell him afterwards it wasn't real he believes m , he does understand .
o in predictable . that word comes up all the time. Although the CHC lady told me because we know it's unpredictable it's NOT .. she should come and live with me for a week
You are right about the convene. S's went in the bin last night, had enough of the damn thing. The nurse, when I spoke to her this morning, said some people's only last a few weeks. S has had his for several months! Surely, I could have been warned, I know they are desperate to save money, but the money that is wasted trying to do this is incredible. The extras that come with this bags is huge, filling all our cupboards, yet the actual thing I need, I am only allowed two and they have to last forever!!! I give up!
Wouldn't you love to have one of these jobs worth, staying for a week, taking care of our loved ones, bet they wouldn't get past the first coffee break! Remember thoses?????
O bum I just did a long answer and lost it . B back in a while lol I am going to have a coffee !!! My daughter is on her way round to me . We were planning to go out for our coffee , just as well its tipping down here .
I remember you saying now and googled it at the time. It's a shame you can't get another one if the original worked. I really sympathise Heady. Before the convene I thought I'd go mad, forever washing and changing. How are you coping with the puppy puddling as well?
It's not all dry for us. Yesterday C pulled the tube which goes from the sheath to the bag but the tap was over his sock. This meant as he pulled it, the tap opened. Soggy sock and slipper again as well as a stream on the floor but at least his trousers stayed dry.
Always look on the bright side of life......easier said than done though isn't it Heady.
I use depends for D at night just in case. Less washing and drying and we get them free from the VA. I think it makes him more comfortable if he is having a bad time getting out of bed in time.
We got 4 cases free from the VA. They were the real Depends and not the off brand. I was so very happy to get them. We also use a pad in my husband's depends. It saves the depend's sometimes. There are 52 in a bag which makes the price a little better when you have lots of accidents. Hipp-hipp- hooray for the VA.
Ours are not the real ones but do the job mthteach. Good idea about the pads which he sometimes uses uses during the day just in case. Hooray for the VA is s right.
It is surprising what can give some relief to the symptoms of psp. Brian has been having shiatsu for a few weeks and everyone said how well he looked and i thought he was talking quite well. But he missed his visit last week and he is very stutterey in his speach so i think the massage part must relax him enough to keep the speach going. Might try the paracetamol for a few days to see if it has any effect. Janexx
It is remarkable how physical exercise can affect some of the symptoms. S goes to an osteopath, I am sure, while its not noticeable, in normal every day situations, it is having a definite benefit!
I know when S misses his classes, he is all over the place.
Oh well, one day they WILL find the magic wand. Let's hope, someone is reading our posts and will look into our comments!!!✈️🐷🐷🐷🐷✈️
He sits there with as much of a grin as he can muster and she massages from head to toe manipulating his arm shoulder and neck all nice smelly oils etc. He sleeps so well that night and then for a few nights after. I must admit she relaxes me when she is here. I am hoping that she can fit Brian in before she goes back to Japan at the end of the month for a few weeks to see her family. Well worth paying for the weekly session. I was unsure at 1st how much benifit he was getting from it but i have noticed the difference this week after m7ssing a session. Janexx
A lot of what she does is on pressure points like acupuncture without the needles. But it seems to do something for him because since he has started shiatsu everyone has said Brian is doing and looking well. Our lady works with people with parkinsons and multiple sclerosis so she is now clued up about psp because she looked it up and has got all the literature from the pspa. Nice to have someone that is willing to get the imformation before saying if her treatment can help. Janexx
I use paracetamol for Margaret only occaisionally when she complains of pain in her arm. I notice it is more effective than other pain killers but not thought about using it as a regular relaxer. Will try it out.
Beware that Paracetamol limits must be observed as easterncedar says as paracetamol is great in correct doses but slight overdose causes irreversible liver damage.
Thanks Heady for the observation, hope S continues in better place. Best wishes Tim
that's great heady that's really good news mate do it in a liquid form do you know offhand only i cant swallow the pills but anyway I'm very pleased for you and doubly pleased for S so hang in there S help is on its way plesase let us know in \a couple of weeks if S is the same or any different anything is worth a try well almost
anything matey well good luck with that mate and all of us who give it a go new computer today treated myself with money from the kids and mrs and me for final touch ///////77788884444//zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz even got that now mate but its on windows 10 and I have got to get used to it get the old brain going again anyway mate take care regards to S for me my other puter was 8 years old I think that you lucky if you get three out of them years that is mate see yer matey
go easy on the wine mate 2 is to many and one is not enough
Hi Peter Jones, half an hour ago I rang someone about my laptop which has something wrong with it. I'm taking it to them tomorrow to sort out but as that is 8 years old, perhaps I'll treat myself for Christamas. I use an iPad mostly but I have lots of photo's on my laptop, some of which I haven't transferred to disk or stick. The chap on the phone said if it's not worth repairing he can take the photo's off the hard drive for me. I like the iPad as it is so quick to load but I'd rather have something bigger for writing letters.
Always great to get some positive news and surprised about paracetamol - it's always been seen as the poorer cousin of aspirin and all the other NSAIDS (I can't take any of those, burn holes in my stomach - well that's what it feels like!). I'll mention it to my dad too - not that he's had many falls (that he will confess too). I heard a newsitem a couple of days ago about an anti-arthritis drug that has been found to have benefits for neurological diseases, like Parkinson's... so that got me thinking. Told my dad and he said all that goes so slow, we had a little talk about it, Christopher Reeves and stem cell research and all that... and that any available drugs would come too late for him at 83 but maybe it would be there for people just getting the disease, and maybe at (god forbid) younger age... One day there will be a cure for everything. And then we'll have to start working on being good human beings! (sorry, been reading too much news).
Heady ...I am glad you wrote this post. Why, for 6 months now I have been saying to our doctor and neuro bloke that pain killers improve my wifes speech.
She has been into A&E several times this year and on every occasion she has been given either morphine or paracetamol and each time her speech has become almost normal. the last time it was ok for a couple of days and then reverted back .
The morphine gave a longer improvement in her speech.
Our community matron is visiting next week I will raise this again with her.
Hi, did your wife's speech revert back while still taking Paracetamol? S's speech today, is barely there, but we have just come back from his gym class and that was absolutely incredible! I haven't seen him perform so well, for months!!!! Everyone noticed it! At one stage, the young lady who takes the class and is also S's personal trainer, was opened mouthed! So it's not just me, wishing for something to be happening!
I am sure, that some of the improvement, has to be they are pain free. Even if that is the case, why is pain affecting them so badly? Another angle the researchers could be looking at!!! They all talk about something triggering the onset of PSP, could it have been pain trauma of some sort? Just the actual pain, not the cause. Hence, they can't link the episodes together! Just a thought!
With the morphine her speech was almost normal and lasted 2 to 3 days. From memory she only had a couple of treatments.
With the paracetamol the doses were over a week but the improvement in her speech was not as good as the morphine.
She only took the Paracetamol for around 3 to 4 days.
At the time I argued that as she became relaxed so the speech improved. It is also interesting that a friend of my sons is a medical research scientist and she recommended increasing my wifes sleeping tablets as she feels this could give a similar response. Our doctor has agreed to try it as they are a different brand to that currently used by my wife. Zolpidem is what is being advised. Will try this in a few weeks as she has an infection at the moment.
Pain trauma is also interesting as for our 40th anniversary we went to Venice. At this point there was no sign of PSP or anything. During our stay she slipped on the last 2 steps of a bridge outside our hotel. Shortly after this her forefinger started to twitch and so started the road to PSP.
I am surprised nobody collates any data as I reckon there could be some clues.
My husband had a really bad fall down a flight of stairs, when on holiday in cyprus in 2014 the doctor did say that it is like a bucket, when it overflows it could offif started the psp x
Yvonne a couple of years ago before Keith's diagnosis, we went on holiday to Gran Canaria and when we arrived Keith fell down some stone steps outside the apartments and ended up in hospital with stitches to his head. The doctor who assessed him at the clinic got me to one side and said he was concerned about Keith because his eyes didn't make proper contact with him, I'm sure looking back that he could see that there was something seriously wrong with Keith! I do believe that some of the professionals in other countries seem to detect things earlier as it was quite a while before PSP was actually diagnosed here.
Yes Pat I think you are right, George was not well for a long time, doctors over here did not pick anything up, but Doctor in Cyprus picked it up straight away, told us when you go home go to the hospital in queens square, he had worked there before going back to Cyprus, he was so right, PSP. Yvonne xxxxx
I'm still convinced that the first fall Keith had (about three years ago he fell from the top of the stairs backwards and smashed his head into the wall) started this horrible PSP, there were no cuts or blood but the impact to the back of his head was massive, I still have nightmares about it as I was standing on the landing and seemed to watch it in slow motion and I couldn't do a thing about it!
The second bad fall down the stairs he had he ended up with an enormous v-shaped slash to his head where he hit the corner of a radiator, the pool of blood was as big as his head when I rushed downstairs and found him after hearing the dreaded bump, bump, bump!
PSP is an awful thing to bear isn't it?.....xxxxxx
Pat George had a bad fall about 4 years ago down a flight of stairs onto the pavement, then 3 years ago he fell Down the stairs in our daughters house and knocked him self out. No blood either times, I suppose they are lucky with all these falls not to have broken anything. PSP Is so horrible, George is sitting in his chair, like a little old man, not speaking, I am hoping he does not get this cold, he's chest is making funny sounds. So sad, I have got this feeling he has seen his family, he will just give up, on life. Feeling sad when I look at him, just wish they would open up and say how they feel. Yvonne xxxxxx
Keith sits in his chair not speaking with his hands curled round in his chest, a look that all PSP sufferers seem to have. Yesterday our granddaughter who is five was trying to remind me of something that had happened in the past and she said "You know Nanna, when Grandad wasn't an old man and he used to drive the car!"
Yes Pat it is so sad, George sits there and he's hands a clasped together, I try to talk to him and he says he can't talk. He has got his hospital bed, our bedroom is big enough to leave our bed in there as well, just feels like it is sinking in that he has this horrible illness PSP I hate it so much, it is not fair. Xxxxxxx
I'm just so grateful I found this site, it's like chatting to your best friends, even though we have never met I feel as if I know everyone so well, thank you.....xxxxx
Heady thanks for that, I have started Keith with paracetamol today, two this morning and two this evening, fingers crossed it will help him, I'll let you know the outcome!
Heady, In the US Acetaminophen (Tylenol), brand name. It is about the only thing i can take for myself. I guess where you are it is called Paracetamol. Agree totally with EC about her comments. As long as it is working for S, lets hope it continues to.
Hi, not sure. I thought Tylenol was Aspirin. Check with the pharmacy! It's just a painkiller, bought off the shelf! The speech only lasted a couple of days, but he does seem more alert. I was giving two, twice a day. But have cut that back to, two once a day. Might even try, two weeks on and a week off. Just to keep the reaction fresh. I think it must be, that he is pain free, for the first time in ages. All the bumps and bruises must hurt!!! Even though he says not! How I hate this disease and the constant hunt for that magic wand. It must be out there, somewhere, in some shape or form.
I was with some Parkinson sufferers today and they were talking about, various times they have been called in for assessment to try different drugs and procedures. Nice just to be able to see a doctor, much less have someone interested in your case!!!
Thank you for the reply! We are in the middle stages with my mother. I have done a lot of reading but it is great to hear real life experiences from people actually taking care of someone going through it.
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Hi guys my husband was diagnosed with psp three and a half years ago, about four or five years earlier he was showing symptoms. his legs
