Well today we finally got to see our local neurologist and he was quite definite in saying that P has PSP. Two weeks ago we saw a neurosurgeon who was prepared to do a lumbar puncture and maybe fit a shunt in the brain to drain excess fluid, however today we were told that these procedures ALWAYS cause things to become worse in PSP patients.
P has been given Amantidine to try, so maybe .... He is going in for a weeks` respite tomorrow so the new drug will have to wait until he comes home, as the doctor said it may possibly make him more confused (is that possible ???).
I have mixed emotions tonight , it is a relief to get a positive diagnosis at last but it now leaves us with no hope for the future at all, although thankfully P seems totally detached from it all as if it doesn`t apply to him. I have been struggling on thinking that just maybe there is a light at the end of the tunnel but today someone has switched off that light !
I am seriously worried about how and if I can cope for much longer but the thought of that day when I have to take P to a care home - for good, fills me with horror.
It is so good to have this site to express feelings that others may not understand, but I am sure you will all have the same thoughts.
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NanBabs
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NanBabs, Well I am so glad you know about this site; and can help and be helped here. take this respite to reflect on the happiness you had and take comfort that you can still have happy times. It is not necessarily hopeless.....progressive yes. But not all full of doom. You both need to find,as I have said time and time again, your new normal. Look for the positive and like PeterJones says, find the humor......that will come in time ,For now take comfort in the words of the Lord If you are a Bible reader, read . If you believe in God , pray for comfort and wisdom and knowledge and joy.
And as you well know, we are hear for you.....
AVB
Now the God of hope fill you with joy and peace in believing that ye may abound in hope, through the power of the Holy Ghost Romans 15:13
I wait for the Lord, my soul doth wait, and his word do I hope Psalm130:5
Fear thou not; For I am with thee. Be not dismayed for I am thy God. I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
Thank you for taking the time to reply. Sadly we don`t have a new `normal` as it changes daily - or so it seems. P struggles to see the funny side of anything these days, although he sometimes still chuckles at old comedy shows on TV but often he asks for the TV to be turned off.
P is religious but I am not and when he mumbles prayers under his breath while I am trying to do very personal care for him I find that irritating to say the least.
P has been getting worse for about 5 years now and I am exhausted mentally and physically, it just feels that it is not worth the fight !
My Mum is on that drug and it has been wonderful for her. It made Mum alot better. Within a couple of weeks Mum started to walk again with the carers and her aggression stopped and she talked alot better. If I were you I would take the opportunity to start this new drug while in respite, they can monitor closely. Side effects can include hallucinations, but Mum did not get any. Hope it works as well for you. X
As you say it is a double edged sword, hanging on to the notion that P might get treatment to improve his condition or facing the future with a condition where there is no fullproof treatment but at least you have a diagnosis. Ben is taking amantadine and has no apparent side effects, difficult to assess whether it is helping. Take care. Kate xx
It's very hard not to worry about the future, can we cope, what happens if etc but try to put all your energy into making sure you have enough help from friends, family and professionals. The more help you get, hopefully the longer you will be able to cope. I hope you will be able to go out together as much as you can. It is an effort using the hoist etc but I take my husband out several time a week, weather permitting. He gives me the thumbs up saying he wants to go and always gives the thumbs up at night when I ask if he enjoyed the day. None of us know what time we have left so I try and make every day as good as it can be. I'm with AVB. I know I couldn't do what I do in my own strength. I call on Him many times a day.
A verse I think about a lot is Matthew 6 verse 34. Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
I think about the future, put things in place I know we will need to help us but I don't worry about it.
You don't see any light at the end of the tunnel so try and stay out of the tunnel and stay in today's light making the most of every day.
Enjoy your respite week. Do something you can't do with your husband at home. Be with people who make you laugh. Try to relax and have fun and I pray you will know that special peace that only He can give.
NannaB. thank you for those wise words but I am not at all religious although P is very much so.
I already have as much support as family and friends are able to give and we have lots of equipment supplied by our lovely OT but it still leaves the majority of time when I am here with P trying to keep him safe.
P does go to day centre which has been an absolute life saver but trips out are difficult - or maybe it is P that is difficult ! One lovely spring morning I suggested a visit to a garden centre about 15 miles away (so not too far) and P was keen but we got to the outskirts of the town and he said he needed the bathroom (not just for a pee). As I had not been to this place before I didn`t know what facilities were there so the simplest solution was to return home. We got home, straight up to the bathroom where P promptly fell in the doorway and we had to call Homeline for help. He then sat on the loo for a couple of hours with no results !
Sadly this is not an isolated event, so I limit trips to one of the smaller supermarkets which is by the canal and has seats outside where we can have coffee or sandwich etc. Usually if I suggest an evening drive or suchlike, we go about 5 miles and P starts asking if we can go back home !
I feel thwarted at every turn and I admit that often these days, I just can`t be bothered to try.
I agree it is much easier to stay at home. Because C had colitis we couldn't go anywhere for many months. 6/7 trips to the loo daily and having to be hoisted was definitely not suitable for public toilets. We did have an awful situation in one toilet. C was in a wheelchair and we had just finished lunch when he said he needed to go. He could just about stand so I got him up and pulled his trousers and pants down when he went. It landed inside the leg of his trousers, leaving a trail down his leg. It took me ages to clean him up and at one point he fell back into the chair. I didn't have the strength to get him on the toilet. The good thing was that I always take extra trousers, pants and socks with me plus baby wipes and plastic bags. Those months of not going out really depressed him. Now we stay at home if he hasn't opened his bowels for a couple of days. Otherwise, as soon as he has been, I leave everything and take him out. The place usually looks as if a bomb has hit it but it's still waiting for me when we get home. I can't get him on a toilet now without a hoist so he wears a pad just in case but so far, since that incident nearly 2 years ago if he does want to go, he manages to wait til we get home. We also stick fairly close to home, local parks, garden centres etc.
I hope your week off helps you relax and gives you the strength to carry on.
You know, I usually read your posts a couple times. To hear your "testimony' of sorts helps me to know that it really is going to be ok. I reel off my (or at least what I believe to be) positive little comments hoping that someone will get something out of it . And then I read your post, and I am so lifted up....All I can really say is, "Yah, what NannaB said!"
This sounds so familiar NannaB, we have had incidents like yours but too unpleasant even to relate to family etc, in fact I try to forget these myself !!
It isn`t only the effort required that stops too many trips, it is also the fact that I am often just too tired.
I am enjoying my respite - I have been out to lunch twice and I am just off to younger sons for dinner with grandchildren and in- laws. I will get round to catching up with some essential jobs before the week is up, but not yet.
I'm so pleased you are enjoying the break. Don't worry about catching up on jobs, catchup on sleep. I love it when our boys come over but we end up talking until very late, great at the time but not the next day.
Hi NanBabs, sorry to hear that P has been confirmed with PSP. I know that light has been turned off, but at least you know what you are fighting. As you already knows PSP fights dirty, well, you have to as well!!!
Please try not to waste time worrying about how you will cope. You will, because, basically, you have no choice. I mean that in a positive way! I have come to terms with the fact that I WONT be able to look after S, when he gets to the later stages. It certainly has lifted a huge weight off my mind. Which probably will mean, I WILL be able to cope for that extra couple of days. Who knows!!! You said P, is going into respite for a week, that's great! It will give you a much needed rest, things will seem better after that! I have just been away for the night, had a really grown up evening, no toilet runs, no chokes or food spilled everywhere. Good night's sleep! I suggest, you keep these weeks going regularly, then, and only then, if the evil day comes, it won't seem so bad.
What we are all going through is £&@&!!!!!! Nothing is easy anymore! Like others have said, today has enough challenges, without using up much needed energy, worrying about tomorrow!
Sending you a huge hug, 'cause I know you need one!
Just got home from dropping P off at respite and guess what ....? The home had already left a message to say they have filled in an accident report because P tried to push away the dining table and stand up also tried to stand from his chair !
Oh well, as long as he wasn't hurt, that's what he is in there for! To give you a break, one less time to have to pick him up from the floor!!! That's got to be good for YOU!
What have you got planned for this week? Lots of sleep I hope, plenty of adult company. Please make sure you plan your days, time for rest, time for some me time, hairdressers etc and time for some fun! You are allowed 5minutes to feel guilty. So get that over with now! The rest of your week, make the most of it. I'm sure it will fly by, especially if you don't do anything! I know it's very hard, if not near impossible, to think about enjoying yourself without P! But it can be done, the hardest part is this thinking business, get rid of that process and life will take on a whole new meaning!!!!!!✈️🐷🐷🐷🐷🐷✈️
I think we all get to a stage when we think and tell ourselves we won't be able to carry on . then we wake the next morning Nd get on with it . it might even be one of the not such bad days . I never call them better days because they are not really .
I dares like most of us you lose the patience even get angry , say something we are sorry for after . I know I do ,
this morning we had a SALT test lady . She was lovely and at the time John was more responsive and managed his swallow. if she came now she would have a different opinion . in fact I have rung her office to let her know and tell her some if the things I should have at the time .
has P had a continuing health care assessment . ask for one now . we had to wait a twelve month before we had it . DO ask for one now
Thanks for the support. Yes, I do `lose it` but only when I am sorely tested. By nature I am an optimist so feeling as negative as I do these days is a strange sensation for me. Over the years, as an only child, I had to care for my mother who had depression then Alzheimers for 40 years also my mother-in-law died when I was 7 months pregnant with my first son, so I helped my husband look out for his father too for 30 + years.
Just life, I know, and I have always coped well but this is something that puts so much pressure mentally and physically on you, as you all know. In addition, although I think age is just a number, I have to acknowledge that physically I can`t do as much as I would like.
We applied for CHC back in December and the committee are looking at our second stage application any time soon.
o nanBabs I am so sorry , I know the feeling was the same with my mum and dad .
John was eventually diagnosed the week my mum died , she had had a stroke .
I am 78 and carry the injuries of supporting John . raising and lifting bending etc .
It is a huge worry and you will decide how much you can or cannot take in your own time .
Do you get any breaks or respite help .
I am hoping to get a few hours respite sitters . But do manage to go out for two hours with my daughter now and then .
even that is a great effort sorting and making sure he is safe comfortable and toileted . makes me wonder sometimes if it's worth all the effort to go out . but it does recharge my battery
They are holding a meeting for our CHC very soon . they have gathered all the information . I am not holding my breath though . john always seem to be more able and responsive whenever any of the proffessional visit to assess .
the SAlt came earlier this morning . they should see him now . his head on hIs chest and no chance of feeding him now , So unpredictable I don't know when .
One of the boxes they had to tick was about Unpredictable . the CHC lady told me because we know it's unpredictable it not unpredictable !,,,,!!!!!!!!!
Whew all these posts were so good and NanBabs, all I can say is here here to all of them. Like Heady said do something nice for yourself this week , it will go fast, and like NannaB said be with people who make you laugh and feel like an adult for a minute....and don't worry about tomorrow it has enough of it own problems (or something like that ) CabbaCottage has a good way of looking at it: stages They may not get better but for aminute they are not worse.....Hold on to those minutes that are in plateau....you will have them ("Hey , I didn't scream at him when this happened, yay for me") but more importantly, your husband will have them (Yay it didn't take him 4 hours to poop andwe got to go to garden centre, Yay") . You've been in the PSP game for 5 years now, you know! You may already have a new normal...it's that you know that every day is different and you can deal w/ it....(take a week off now and then!)
I'm looking at my wall right now...and....
I have yet to and probably wont fix the plaster where my husband has crashed through. As I look at the indention(s), it is almost artfully cracked. It has a profile of a head and face down to a shoulder; a bust if you will; not so much of my husband, but of some pretty little alien....Now if that aint seein the humor....!!!!
You will be fine because you do have a positive outlook take this week to relax and know it'll be....what it will be...and it'll be alright.
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