Sudden deterioration: Hello there Chris has... - PSP Association

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Sudden deterioration

AnneandChris
AnneandChris

Hello there

Chris has had a chest infection for 10 days and has just finished a course of antib's. However his mobility has deteriorated drastically. He was dragging his left leg and not using left hand but today seems to be having difficulty on the right hand side too. Speech has almost disappeared and he seems to be having cognition problems too.

I shall call the GP first thing in the morning, hopefully it is still the chest infection but I suspect its the PSP getting worse!

Any thoughts or comments would be appreciated as I'm feeling somewhat overwhelmed tonight. I usually cope but am feeling utterly useless at the moment.

But we'll keep on keeping on.

AnneandChris

19 Replies
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Hello Anne, my husband had CBD but a similar thing happened to him. He began losing ability to walk and then suddenly lost ability to sit unaided. Went into hospital at this point and I watched him fade away over 3 months or so.

Don't think any path is planned in these horrid diseases! Be prepared for your senses to be correct! I hope they are not and that he improves. It will depend on Chris' strength and how much the infection has sapped his system. Give him lots of hugs and try to be with him as much as you can.

My thoughts are with you both. I understand how horrible this is!

Big Hug

Jen xxx

Dear Jen

Thank you for your kind words of reassurance. He has just woken up so we'll see how today pans out.

I'm hoping it's just the infection....

Kind regards

Anne

I hope it is too! They can certainly knock the stuffing out of them. He may recover his senses but may find it more difficult to recover bodily strength. Just having my love back in mind was enough! We had another week or so of memories to make.

We enjoyed chocolate at bedtime, and he was very much like the man I married, old jokes and all!

Hope you have some more times like I had!

Hugs

Jen xxx

I remember a pattern of this. Each time he recovered a bit - but not quite where he was.

Keep on as you are, You are doing your best.

love from Jean xx

Jean thank you so much for your encouraging comments which are much appreciated.

Kind regards

Anne

Hi AnneandChris

There's nothing I can add to the other posts.

So, I am just writing to say that I hope today goes well.

Warmly

Kevin

Thank you Kevin.

District Nurse has been into catheterise Chris and Doc has written him up for stronger antib's. So hopefully once these kick in there will be an improvement. Chris slept like a baby, needless to say I didn't.

Thank you for your kind thoughts. This forum is so good keeping like minded people who are going through the same trials and tribulations in touch. I've learned so much since I joined.

Your wisdom is much appreciated.

Regards

Anne

Hi Anne

Fingers crossed.

I too have learned so much here not just technical, there are folk here who have taught me much about life and values... It's a good place.

And when were carers ever permitted sleep? ;)

Wishing you both the best

Kevin

For Mum the antibiotics knock her about as much as the infection and if you have multiple courses in quick succession it really makes her rough. Until the courses are finished and the infection gone you won't really know what improvement may occur, in our experience it takes a few weeks to truly get over and assess what functions may have improved. Infections really does knock them about and send everything into a spiral and I know that feeling of overwhelmed and is this it and everything out of your control. These conditions are so hard for the carers to cope with physically and emotionally. I hope these stronger courses gets rid of the infection for you.

Hi AnneandChris!

This is our experience...

A serious fall with serious consequences (hospitalization, surgical intervention, strong medication, etc.) as well as a serious illness (pneumonia, severe flu, etc.) are typical situations that can trigger a fatal process. It is not uncommon for the PSP patient to overcome these types of situations - but these situations once overcome are often accompanied by some increase in the PSP symptoms and some decrease in the quality of life.

Luis

Thank you Luis.

I'm prepared for things not to return to where they were. Hopefully once the antib's kick in he'll start to feel a bit better.

Kind regards

Anne

I'm sorry for your worries.

My C. too had a cold/upper respiratory infection recently. He did a round of antiB's and seemed to have lost a lot of ground during and following the illness. In fact, his cough lingers although I am assured by the hospice nurse his lungs are clear. He was completely unable to use his legs this past week for two days even to help me when transferring. Unable to lift his feet to step into the shower with TWO people helping (me and an aide). Didn't utter a word for 5 days. Not even the usual "yes" when asked a question. Slept a lot. Then, last night, when my sister called and was on speaker phone to include C. in the conversation, he answered her question with a louder than usual clear voice and again gave a "fine" when asked how he was feeling. I was shocked.

I hope your Chris, like mine, just needs a little extra time to recuperate from his upper respiratory infection and bounces back to where he was prior to his URI.

Several times over the years when C. has been ill with infection (chest cold, bladder infection, etc.) he became confused, weak, unable to do the things he had been able to do. Now when these symptoms happen, I often look at possible infection.

Life with PSP is difficult enough. Adding these other problems on top just makes it harder!

Thank you so much for sharing your experience. All of which are sounding more familiar day by day.

Chris too has almost stopped speaking and mobility is poor. I've just been into the lounge to find his rise and recliner chair pushed back by a foot. He must have fallen back onto it whilst trying to get up unbeknown to me. Both he and it are back where they should be, but it is sooo heavy!

So we'll keep on keeping on.

Kind regards

Anne

Hi Anne,

I'm afraid my experience matches the others: the downward curve was slow and steady for months at a time but with "jolts downward" like you and they describe. It's a new reality each time, adjusting to the new level of disability. And you keep doing what you've always done: adapt, provide care, comfort and encouragement.

Hugs to you in the journey - Hope you are doing some things to care for yourself along the way? Although like many, it's the last thing on your mind, right?

XXX

Anne G.

Yes, totally agree. Had 3 hours R&R on Thursday with a girlie lunch with friends with a carer in at home. And, in two weeks time I'm on an art course. So hopefully Chris will have picked up enough by then for my daughter and a carer to take over.

So fingers crossed.

You look after yourself too.

Kind regards

Anne

Hi Anne, hope the stronger antibiotics help Chris. Great to hear you are starting an art class, hope we get to see some of your work. 🖌🖍✏

Lots of love nanny857xx

Ps we too have had the rise reclined incident too.

Hello there

Lovely to hear from you.

I started to paint in 2009 when I retired and we downsized. Sadly I don't get much opportunity now unless I go on a course. Three booked for this year, so hopefully I'll get some work done. I regularly exhibit at our local Art Society and have been lucky enough to sell some in the past. So we'll see...

Kind regards

Anne

Dear Anne, I have to say how astounding it is that we, as caregivers, always manage to find that extra something when it's needed. I never, in a million years, imagined I could have found all that I did when Ben was with me, alas he died in early May I have no idea how I managed things then. The human spirit should never be underestimated.

Love Kate xxx

Thank you Katie

It's quite a journey isn't it? I'm sorry to hear that Ben lost his battle in May and send you a humongous hug.

Love Anne x

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