In case you don't use Facebook, I thought I'd post this. I don't think the link will work but full details can be found on their website. Start collecting, every little helps.
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Save your postage stamps for the PSPA - PSP Association
Save your postage stamps for the PSPA
Written by
NannaB
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51 Replies
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Already started and have at least 20 others doing it!! 😊
Do you know when the closing date is?
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No, I presumed it will be ongoing but you've got me thinking now. I'll contact the PSPA and ask. I shared it on Facebook and have folk I don't know saying they will send their stamps in. One person said she always saves her stamps and has loads but didn't know who to send them to so will post them to the PSPA.
X
Will do.
How is C doing ? Improvement ?
Love, Jean x
C is doing OK now but I really thought I was losing him on Sunday. Fortunately my brother, his wife and daughter were staying with us so I wasn't alone. The morning carer and I had a job to get him out of bed as he was unresponsive. We couldn't leave him in bed as he was soaked in sweat. He hadn't passed urine during the night which was unusual. The carer wheeled him into the shower and we got him dry and dressed but again he was unresponsive. He was breathing rapidly and noisily but from his throat not chest. To cut a long story shorter, the District nurse called unexpectedly (Sunday!) and called her hot line to 111. His mouth was wide open and he didn't eat or drink. Eventually the out of hours doc called. His temperature, which was high when the DN took it, had gone down a bit. Hospital was discussed but the doc decided that as C is allergic to antibiotics (colitis) and as he had eaten and drank a lot the day before, leave him and see if he improves, calling 111 if he got any worse and the GP in the morning if he was the same. My brother and I put him back in a nice dry bed. He was the same all day until 8pm when he suddenly started breathing normally and his eyes opened for the first time. It was as if someone had switched him back on. We got him up, he passed urine, drank a large mug of tea and dish of banana custard. Our GP has been out twice since then and said it may have been a neurological blip. He didn't have a UTI or chest infection. As my brother was staying, my other brother and sis in law came to lunch as well, we ate upstairs and then came down to the room next to C and spoke in hushed voices. My sis in law laughed and it was soon after that he woke up. I think he realised he was missing something. Whatever it was, I'm relieved it's gone but when I went to bed that night I realised I had had a taste of what's to come. Not a nice thought but I've given him l lot more kisses and cuddles this week.
I hope you/ we all, have a peaceful evening and a good night giving you strength for tomorrow.
Bev x
Oh Bev, how frightening! I have had my own taste of the future. We now, finally, have the District nurse coming in regularly. Which, in itself, is really depressing. It's a pretty scary place, hating the situation i am in, knowing that i can't cope now, so how will I handle with more, (S has been referred for a PEG, as he wont drink. ) Yet the alternative..............
NannaB, you are in all our thoughts, sending you lots of love, which I hope you will find the extra bit of strength, that you must need,just to get out of bed at the moment!
Lots of love
Heady
Thanks Heady. We all need that extra strength don't we?
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HI NANNAB
I AM SO SORRY THAT YOU HTOGHT YHOU HA D LSOT C ON SUNDAY BUT HE HAS RALLIED THANKS TO YOUR KISSE SAND CUDDLES I THINK
I HAVE BEEN SO DEPRESSED SINCE LAST SATURDAY AND DO NTO HAV E ANY SPIRIT LEF TIN ME TO GET UP AND GO
EVERYONE HAS EBEN WORREID BOUT ME WHICH HELPS ACTUALLY) AS I KEEP TALKIGN BOJT GOIGN TO SWITZWER LAND TO END IT ALL BUT HAVENT FOUND ANYONE YHET WHO WILL G O WITH ME - WHILST I STILL CAN YOU UNDERSTAND AND NOT FOR ANY OTHER REAS ON THAN I DONT WANT TO END THE LAST COUPLE OF YEAR S FO MY LIFE IN A CARE HOME NTO ABLE TO SPEAK OR COMMUNICATE AT ALL
AND I T WILL HAPPEN I KNOW HWEN I BECOME INCONTINENT IN A FEW MONTHS AND CAN NO LONGER GE T MYSE;L UP ON MY KNEES TO GE T MYSELF UP
Oh Jill, I'm so sorry we can't just kiss and make things better. I know I can't say anything to make you feel better other than lots of folk love you. Before PSP I wouldn't have considered Dignitas but when I see my darling suffering I can see how he may want it to stop. A few weeks ago they were talking about it on the TV and I asked him if he wanted to end it all. Both thumbs went down so I don't have to think about it any more. Colin has faith, as I do, and he knows when it's over, he will be in a better place. I just hope he doesn't have to suffer too much more before getting there.
I hope some of your get up and go comes back and you can still enjoy some good days Jill. I think of you often as I'm sure many other of your friends here do.
Sending you a great big hug.
Lots of love
X 💐
Big hugs and love to you, Jill. I'm sorry you are down, you have always put such a brave face on things here, and I so admire your spirit and courage.
I know you are originally from Yorkshire, yes? But I don't know anything about your life after that. I would like to, if you feel like telling us something about it, and if the typing isn't too troublesome for you.
Again, hugs, and lots of love. Hang on, Jill, dear. You are loved very much. Ec
Jill, I know you have been considering this. But remember what I and others have said before, you have helped others on htis site in ways you cannot see. You have given others strength while your body progressively weakens. You are such an asset to this site. You (and others) give us a glimpse of what PSP is like from the patients point of view.... it helps us to refocus pn what is most important...not on ourselves, but on our loved ones who have this dreaded disease. AS nannaB said, I hope your Get Up and Go; Gets back up and go's....
Keep on goin, Jill don't give up@
Love AVB
How awful.This disease really tests you, doesn't it ?
I trust C. continues improving. Give him a hug for us. I hope for a thumbs up !!
Our thoughts are with you both. lots of love and hugs, Jean and Chris xxx
Have been up trying to help John clear his throat /chest . He gets frightened he cannot take a breath .any ideas , do you think the pump might work for this .
Would it clear the back of the throat .
Had enough trouble the last two days with the other end if his body without this end as well lol
The pump does help but doesn't clear the back of the throat. It clears what is being held in his cheeks and if he does cough anything up, I can get rid of it before he breathes it back down or swallows it. The coughing is the same unfortunately.
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I just read this NannaB, I am so sorry I wasn't there for you (responding 3 days ago). What a frightening experience! But this is the exact thing I was talking about in another post...the fragility and the resiliency of our lives. Your husband seemed at the end but somewhere in there he was fighting back, not ready to go just yet! And you , you are forever resilient girding up for the worst, and supplying extra kisses and thankfulness that it was just a "PSP blip" I have breathed many sighs of relief that C is back to his normal. I hope it stays this way!
avb
Today is totally different to this time last week. He actually smiled today when the carer and I were getting him out of bed. We somehow got him too near the edge before we could get him hooked up and I had to stand in front of him with my knees pushing against his while the carer quickly put the strap round him making a comment that she didn't want him on the floor. He smiled. Not a full show his teeth smile but a little twitch in the corner and his eyes even smiled. She asked him if he was laughing at our incompetence and he hummed a yes. That roller coaster has reached the top again. Let's hope it stays there for a bit.
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Out of the mouths of psp-ers!
My daughter came over last night Yayyyyy! But I asked dad to do one of his swallow exercises, (though he's not supposed to make any sound ) It sounds jsut like his monster sound he woudl chase the kids with when they were little! She broke out laughing and had quite a few minutes happily reminiscing how he'd make that sound when he was slightly angry at some stupid thing on tv or when asked to do something he didin't want to do or just runnin after the kids while they scattered hither and yon....oh it was so good to see both of them communicating with each other!!!! Thank you CheChe!!!
Bev ,, what's the old saying , never say die ..
John often gets like that , it why i keep asking for consistency with having carers . My two regular have got used to Howchangeable he can be , trouble is its so unpredictable .
I have learned now not too get as frightened when it happens now .
It's what I call his switched off time his head drops foward into his chest so of course I cannot even feed him or give him a drink .. He also goes such a long time without weeing , something to worry about isn't up .
He has been really constipated for days which also caused him not to wee . He can go 18 hrs without seeing now I can't stop him going ..
I went out lunchtime the sitter came for two hours . I came back at at TWO and not stoppdped for a cup of tea even ,well until now I have made it but he has called for the commode again . So here goes again ..
johns birthday is in January and I bought his birthday card ready . I found an appropriate one for him Apologising for being grumpy nagging etc ..
Thanks for this post. It's tells me that it is just part of PSP and now it's happened, will probably happen again.
That sounds a good card, one appropriate for me to send Colin.
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Thanks for this. Very helpful perspective, especially in light of the day we had yesterday. After some good therapy in the afternoon, it was an odd and stressful evening - he was frozen, complained of blindness, couldn't use his hands - followed by the first full night of sleep he's had in months, and now he is back to normal, or at least to where he was yesterday morning. On we go. Love to all, Ec
Yah, B already has limited vision but liek your husband if he gets a good workout in he has a good nights sleep!
On We go
AVB
Hi all. Do you think it could be the time of year with all our loved ones having a deterioration in the psp symptoms. Brian is now having trouble useing the rotastand his right hand no longer has any grip so unless i hold his hand in place it snatches off and it ends up under his chin. Very dodgy as he does it mid turn. I have now asked if we could try a standing hoist as i am finding it hard to transfer him on my own.
The last few days his arm has been so tightly bent his fist is either up by his ear or under his chin.
And if he isn't asleep he seems to be vacant. It took him ages and a few prompts today before he even started to eat his dinner. He was looking at it as if say what do i do with this.
He was like this when he was over medicated with parkinsons meds. He improved so much when all his medication was stopped. So it seems as if we have now gone full circle and we are now back to the same stage we was at before diognoses, but at least now we have some equipment to help. Janexx
I'm waiting for a different hoist. We have a standing hoist but C still has to grip the arms and like Brian, his grip has become very weak, he ends up hanging as his legs give way as well. If I'm quick, I can manouver him before he collapses but it's becoming harder every day.
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Jane , I have reduced Johns meds overtime I suggested it yo his consultant and they so far gave gone along with what I ask them ,he hasn't see a coNsultant bow for two years other than a mental health consultant .
He has been housebound for two years and is hoisted at all times with ceiling hoist . They are brilliant . Would not manage in a million years with out them . We had , I think a hoyer hoist . he could still take a little weight for a very shorttime . . I wish the Ots wouldt drag their feet and get you to try and keep independent as you can but it makes it such a struggle the the carer as well as the patient .
It's not th time of year Jane it's the progression and th meds I think . Do you find they he is worse after taking it , John is on Sinemet and once he has taken it he fades away his mouth becomes distorted , cannot open his jaw . I think it's Dystonia as well as Dyskinesia . Takes him a few hours to come back on .
I can see his face change in front of my eyes . And his thumbs stick up .
Brian has not had any medication for over a year his neurologist said the sinemet was doing him no good at all and he was on a very high dose. I did say that he was better in the mornings before he took his 1st dose and neurologist said that confirmed it and we had to ween him off the sinimet. The improvement was startling. We have tried one or two other medication but they made him worse so we stopped them as quick as we started them.
The only thing Brian has now is the drops under the tongue for excess saliva. Janexx
Are the drops helping Jane . Made Jihn confused
It's the weather! You know, that could be it . I'm more of a conspiracy theorist and I thought maybe 'they' were all doing something to our mates at the same time to see if there is the same effect....cuz dang our pspers are all sliding a slippery slope lately.....But the season or weather makes much more sense!!!So what we all need to be in some sort of barometric chamber to keep the pressure at an agreeable setting! Maybe along with heating a barometer setting could be installed....hmmmm
AVB
tried the drops but he started to become a bit confuse , was looking around the room . it's getting the balance isn't it . I am wondering if it would MAYBE worth trying now he is taking Me,anyone which appears to be helping with his thought process.
the Gp first gave him kwells to start with , maybe I should have persevered . the patch and another med gave him dreadful hallucinations .
he cannot breath deeply enough to cough and clear it . last night I gave him some warm water with a drop of lemonade to c if that would thin it enough to clear .
have you had any news of the newer hoist .?
I used to take Kwells before travelling but they made me feel awful, sleepy and giddy.
No news on the hoist yet. Fortunately C has regained some strength in his legs so as long as I'm quick with transfers, it's not too bad.
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don't think I I'll bother with them lol ..can't keep him awake long enough already .
if colin gets any more difficult do nag them about the house make things as light as u can for yourself Bev .
Can I pick your brains this morning Bev . I know Colin has or has had bowel problems .
John has to a degree , almost like IBS. He gets extremely constipated last week had the urges but couldn't go for a week , I was giving him the Movical drinks regularly. The last day gave him two teaspoon of liquid Senna .
That worked for him then but ever since he hasn't been able to stop .
Of course I am afraid of dehydration and is losing weight. Each time he drink ar eats his tummy is irritated and it starts all over again .
Gets so uncomfortable sat on commode and tired . He is worn out , , so am I . He can sit the for nearly an hour , We think he is ok and as I see to him it restarts .
I am afraid to give him anything to stop it because the he will be the other way . This is happening more and more .
Any ideas please ..
He normally has a small bowl of porridge for breakfast , yesterday I gave him scrambled eggs . For dinner , smokes haddock and mashed pots with some broccoli so nothing to strong or heavy . I have reduced the milk in his drinks. .
Good morning (I hope!). I've just written about this in reply to jzygirl...Symptoms and real life. I don't let C sit on the commode for more than 15 minutes now as it cuts the circulation to his bottom and testicles. I lifted him after half an hour and his cheeks and scrotum were purple. Soon after the skin broke. Now if he hasn't been, and I can't see any hard lumps, I put him to bed, on his side with a pad under him. Fortunately, at this moment, he isn't too bad. If he misses a couple of days I give him Lactulose, prescribed by the GP. It is quite gentle but as I said in jzygirl's reply, he does need help sometimes. I think I would speak to the GP about John, especially if you are worried about dehydration. Not much help, sorry.
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No I don't leave him too long if constipated its bevpcause he is so looses now . It does happen that way . Catch 22 .
I think he has finished and he will start all over again and again . I dread calling the GP these days the ones who are familiar with hi keep leaving or retiring .
It's possibly caused by the Dystonia and they talk a lot now about the gut and Parkinsons don't they . The PArkinsons nurse told me its one of the biggest problems .
I think I might try and text her to see if she thinks it would be OK to give something like lopermide
Much better day today so far " I rang pharmacy to ask what they would recommend , he suggested I give dioralyte . only had to commode twice phew .
B has been a bit constipated. he does not drink his water which is fro a big sippy cup, unless I tell him.....So I have been giving him Fiber Choice chewables....That seems to do well as I think it absorbs what little fluid in the gut to make for a good constitution. But that may be a remedy for not-so-serious problems. I really want to keep his bowels flowing naturally.....heavy sigh.....
AVB
How does saving postage stamps help PSPA?
They get money for them. They are sold to dealers who eventually sell them to stamp collectors. They should be cut off the envelope leaving an edge so the stamp isn't damaged.
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Do they take US stamps ?
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