PSP Association
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Can PSP progress quite fast or very quickly

My husband T has been diagnosed with PSP in 2013.

Apart from his deteriorating speech attendant gagging on water, he seemed to be beating the odds, and we were both managing well on our own, until recently whilst we we were away on a much needed holiday.

T seemed to have just completely changed. He started not wanting (or able) to go to the loo and had to be put on diapers.

He also had complete apathy NOT wanting to do anything NOT even his usual routine of taking a shower and shaving by himself (with supervision) and the physical exercises or reading that he does at home, quite diligently. All he wanted to do was sit and watch the same news loop on TV the whole day, despite repeated encouragements to go out. He has also developed a very very slow shuffling walk.

I was hoping that it was just the unfamiliarity of his surroundings and I was hoping he will snap out of this stupor once we are back home in familiar turf.

We have been back home for a week now and barring jet lagged, he seemed to still be in the same limbo?

Anyone experience this kind of sudden behavioural change?

I’m stunned and scared to say the least, as it seems so sudden and I’m NOT prepared or ready for this drastic changes yet.

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Yes. I'm afraid it is common. We describe it as the roller coaster and then you adapt to the "new normal". Many also find there are sudden temporary improvements too. It is very unpredictable.

I seem to have spent the last five years thinking "I'm not ready", including when Chris died in October.

You will cope. Use this site to rage as much as you need. We are here to support you. I don't know how I would have coped without the people here, who really know how it is.

Where are you ?

love from Jean x

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Hi Jean,

Thanks for your kind words and support.

I have heard of this community thread in the Kent group BUT I stoically tried to manage on my own in the past.

But I see now how great and valuable this group is!

I’m so sorry to hear of your Chris passing on, hope you’ll find comfort in the fact he is in a much happier place.

We are back in Kent?

Are you the Jean I’ve met in the Kent Group?

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Yes. I haven't been to the meetings since Chris became too ill. I live in S.E.London. Do you remember Chris ?

I managed on my own until Chris needed palliative care for the last three months. No-one else really understands how it is.

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Hi Jean

I thought I remembered you.

Was Chris the singer? Sorry I’m so bad with names BUT I’m good at recognising faces.

We haven’t been to the meetings much either as Tony wasn’t too keen to go, BUT I will try to make it a point to go with him this year.

Hope to catch up with you there sometime

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Now question is where do I begin to prepare for this “new normal” (credit to Jean).

I have called the OT and Incontinence Nurse can only see us March 16?

Do I call Social Services too to see what help I can get?

This is truly a curveball for me as Tony was still very relatively normal 6 weeks ago

So I’m totally unprepared for this new normal.

I’ve also just recently had a back surgery and my Tony is quite big and heavy to lift?

Help

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Do it all. I am not from the UK but contacting CHC is very important....and a lentgthy process to get those needs the sooner you contact them the better

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Please be careful with your back!! Mine was perfectly fine until I started lifting my dear Daddy off the floor during the many months of horrible, stiff and backwards falls when he'd lay trembling weak and sometimes bleeding, unable to get up on his own. Of course I tried to pull him up and did many times but my lower back paid a price and will never be quite the same. Line up every bit of help you can get and as was suggested, the sooner you start on getting it lined up the better off you'll be. I pray God be with you and yours.

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Thanks GonnaMissDaddy,

Yes, my back has suffered from the consequences of picking Or dragging T off the floor, the loo, the bed and even his chair!

I’ve had a back surgery last year and I’m afraid my back will never be the same again, BUT I’m fine relative to what my dear T has to go through.

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A big help for your back is to ask the O.T. for a "camel". Its a blow-up seat to lift him up. Its a hassle but saves your back.

Jean x

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Hi Mb. My husband also fell into the apathy (as with every other part of the house...Hahaha) I DO understand what you mean about the man watching the SAME shows over and over. Which leads me to believe that routine is essential. For you and for him. PSP is progressive and though not specific when it's going to happen , behaviors such as your husbands WILL happen. First , think what you can do with him, and what you will need help with. Don't burn yourself out trying to do it all. Second, like I said before establish a routine so that you minimize frustration. This routine might include bathroom times , hygiene times meals you you know...But what I really want to talk about is activities so that he's not just sitting on his bum all day. Even though he is not making a choice to do something , do it anyway. My husband and I worked out alot and even as he got sicker I still took him to the gym. We went to the library where I read titles of audio books and dvds that he would enjoy. We continued going to church until it was just too difficult. And there was a point when he said no more to gym ...and I respected that, though I did make him walk up and down our ramp several times at least once a day. None of this may be for you and your husband but find your own routine. Remember to take him to the doc make sure he does not have a UTI. Make sure he is getting enough calories; my husband lost 20lbs (2stone?) before I knew it ...And most importantly you have a good connection to those to whom you can scream...such as we here on this site, and to God who does hear you and is with you. I do wish you much comfort and understanding and the ability to reach out and to know you are not alone.

Sincerely,

Andrea (AVB)

God is our refuge and strength, a very present help in trouble. Psalm 46:1

Let us therefore, come boldly to the throne of grace, that we may obtain mercy, and find grace to help in time of need. Hebrews 4:16

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Thanks Andrea for your kind advise.

I have called PSP org uk for help and they have been very helpful in directing me to the right agencies and services.

Yes, I agree routine is very good for both carers and patient. We had our routine before we left on our holiday BUT my husband has completely lost interest in them and it’s so frustrating and draining to continuously nag him and cajole him to do it! I sometimes need to continuously remind myself that it’s NOT him checking out on life (or being lazy) BUT the disease taking hold of his faculties.

Now that we’ve returned home I get him up and down our3 flights of stairs everyday (with me holding him in the hips) 3 times a day, hoping that that will restore the strength in his legs! Also manage to go on his stationary bike yesterday for at least 5 mins, but he flatly refuses to do so today!

He has lost so much weight (8 kilos) in the last 6 weeks too, and I’m trying to feed him as much as he can.

I do find strength in my faith and it has keep me in good stead all these years, I know God is looking after us and even sends angels like you and the rest in this thread!

Love and light,

Meg

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Hi Meg, I hope you are finding some strength from the lovely replies here. I don't want to be prescriptive with my response so I will tell you a story from my perspective which is a different approach from most of the others. Please don't beat yourself up and remember to look after yourself as well as your husband. My mum is on her own journey with PSP and nothing I do can change that. I can choose to travel with her, sit beside her on the bus and hold her hand or I can try to drag her off, but the bus wont stop for her. Sometimes it will coast along, other times it feels like it's careening out of control. The nicest thing I can do for Mum is join her on HER journey, not try to bring her into mine. By accepting mum's situation all I have to deal with is extreme sadness. If I tried to get Mum off the bus I would confront sadness, anguish, desperation, failure and a million other negative emotions and I wouldn't be a very good travel companion for her. I send you love wish you strength xxx

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Thank you. What an amazing outlook! I hope to be half as graceful with my own mum.

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Hi Teej,

Thank you for your very refreshing perspective, and well wishes.

I must admit it’s something I battle with constantly!

Most of the time I’m not sure if leaving him alone and respecting his wishes to do nothing OR putting him through his paces is causing him more harm than good. I just want (and will do anything to give) what is best for him, if only I know.

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Stop the Steps!!!!!

the stairs are not a good place to exercise or to have to get from one place to another. ... You will end up hurting yourself when he falls on you or when you try to keep him from falling.

B and I used our ramp outside that led to the car. You may want to think about converting a room down stairs as his bedroom... And muscle restoration may not happen; but keeping what one has may.....The bike sounds like a great way to exercise....and if he doesn't want to get out of the chair, there are little exercise machines that supply pedals only, so the person doesn't have to get on a whole bike. That way , he can ride and watch that show for the fifth time in the comfort of his own chair!.

And ultimately don't fret over him sitting there....Be thankful as you know how to do....

Remember to look after yourself as well as your husband......

AVB

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Hmmmn point we’ll taken on stairs, will discuss with PT and OT as it was part of their recommendations.

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Hi, Apathy is a very serious symptom of PSP, it will be your worst enemy. BUT, it is your husbands best friend! My husband had this really bad, but it got him through his journey of PSP, he just didn't care. Well, from what he showed me!

Nagging? Oh dear, I remember this well! If you are not a natural nagger, (who is ???????!!!!!) learnt fast! Everything we ever did, I had to nag first. In the end, I stopped giving him the option. I worked on the principle, that the old Steve would have wanted to do it, therefore we shall!!!

I agree with AVB, get rid of the stairs if you can. Sounds very dangerous. There are classes for Paringsons sufferers that are very good for PSP as well. In the end I got Steve a personal trainer, who came to the house. Nothing like a pretty young lady to get them out of their chair!

The rate PSP progresses, seems to vary, depending on the day. I always found any trauma or fall, would bring on another load of symptoms. But always check for UTI.

Lots of love

Anne

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I know it sounds dangerous but I also kept exercising Chris with the stairs !!

Until I realised he could no longer cope as he got weaker and moved the bed downstairs.

The thing is you are fighting a losing battle but mustn't give up. I used to make fun out of getting dressed etc. We used to dance too. It all depends on what he enjoyed before.

Humour was our saving grace on many occasions - black humour often !

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Forgot to say - do get in touch with local hospice. Ours offered day care every Monday and it saved my sanity. It gave me some time alone.

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Thank you all for your advise.

A personal trainer is a brilliant idea Anne as I just have the energy to put him into his paces n his physio exercises in the morning after keeping vigil all night for Tony’s numerous nocturnal wanderings to and from the bathroom, sometimes for no reason at all!

I’ve been planning to move to the bedroom downstairs Jean ASAP.

At the moment we are at A&E as Tony had a very unusual tumble from his chair in the family room- no stairs in sight😩

He has 2 nasty cuts above his left eyebrow that requires stitching and he is under observation n scheduled for a CT scan. At least he’s sleeping comfortably while waiting things out.

We hope we get the all clear soon so we can go home as I’m exhausted, to say the least.

These past few weeks has certainly been a wake up call for me!!!

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I meant I just don’t have the energy in the morning

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We would be surprise if you said you had any energy at all. PSP takes from everyone, including you! Get some rest, be it a big deep breath, a walk around the block or a week's respite, Get Some Rest!!!

Lots of love

Anne

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Thanks will do Anne as soon as we get the all clear here in the hospital😘

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I well remember those times in A &E - getting home feeling so tired and the patient sporting his new stitches !!!

xxx

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I believe it happened for a reason Jean. Now I’m more relax knowing help is on its way.

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God works in mysterious ways, ❤️

Following Tony’s trip to the A&E last night and the end of his modelling career (coz of a nasty cut above eyebrows) 😍 , the team of doctors, nurses, OT and PT, has decided to keep him in hospital for more test and observation and to prepare a care package for him at home!

They’ve decided that I’m not able to take care of him at home alone.

What a blessing in disguise, all the research, scrambling to call the right agencies and services, has been taken off my hands and being handled for me!

Thank God!

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Good. Chris also was in hospital and they organised a care plan.

love Jean x

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Yes PSP can be quite rapid but you can also have periods of improvement! My father saw rapid deterioration towards the end of last year which resulted in him being unable to walk at all but this year after gentle excercise and physio he seems to be able to be back on his feet for short periods! I would visit your neurologist for a check but if there is nothing immediately apparent to be done then encourage as much walking and excercise as possible and avoid sugary starchy food and eat more vegetables to help digestion. ( maybe he is constipated) I also had to give my dad a pep talk when he first lost bladder control! It can be very depressing for them. I told him that women have been wearing sanitary pads every month for most of their lives so incontinence pants should be too difficult for a man to stomach!

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Thanks for the ray of hope PDDJED.

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My sister had PSP - diagnosed 6/2017 - but had some signs of mental problems many years ago and balance difficulty, that forward-leaning walk, & executive decision making problems at least 4 years ago. I don't think anyone really knows how fast the progression of the disease is. I found a neurologist in our area but really found no help (except we got Dr.s orders for a new wheel chair. We also have good days and bad days. I try to do something with her everyday (trip to store, library, bank, walk around the lake etc.) It helps me and I think she likes getting out too. Our biggest problem now is very frequent need to use the restroom daily & nightly. We're trying different things but not much success yet.

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