Advice please re CBD right hand lean/rigidity - PSP Association

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Advice please re CBD right hand lean/rigidity

AliBee1
AliBee1

Hi Everyone. Well I had my hip op and came home Saturday. Things are going ok apart from a swollen leg and the new bungalow is an assett for me. Nigel was Safeguarded on the day of my op as he was so agitated that he could not get out of hospital and could not reach me. The family have not seen him like that before. It was very sad. The ward let our carer come in and carry out personal care in hospital which calmed him down and he was allowed to come down to my room and he was happier. Thursday he was to be discharged on oral antibiotics so family came down from Coventry to be here so he could come home. Just as well I had unpacked so many boxes. Saturday when I came home he seemed ok but Sunday I felt he was deteriorating again and Monday he was unable to go to respite which was supposed to happen every day so that I could rest post op. Monday night he woke being violently Mucus sick. One of our carers was staying over night but he could not have managed him on his own as Nigel had no balance and was a dead weight. I did not lift but had to help which made my hip ache. We finally got him back into a clean bed and he slept. In the morning he could not even keep his meds down and could not sit up and was incontinent. After taking advice I phoned 999 who managed to get tim into the ambulance with difficulty from the bedroom (when buying the bungalow I had not considered getting a stretcher round the hall only a wheelchair) They really had to manhandle him as he kept falling to the right which he always does when he has an infection. The ward settled him down and friends pooped in to see him but I purposely did not go as I thought it best he realise that at present I cannot sit by his bedside the whole time and need to get better myself. I got a good sleep. Yesterday my sister went in. He was in a chair but leaning to the right. His hands were cold. He could not pick up the strawberry I had sent in and could not get his beaker to his mouth as it was going to other places on his face but she was told that he was 'medically fit for discharge'. She asked them to get him on the bed and the OT came. It took 4 of them as he kept slipping sideways and was a dead weight. The OT immediately said that there was no way he could be discharged and the nursing staff gave my sister a list of nursing homes !!! I phoned and spoke to the registrar who tells me that there are no markers for infection and that all other stats and his kidneys are ok and he is not dehydrated so no mediacl intervention/antibiotics required. I just don't know where to go from here. His lean/balance/rigidity has always got better with IV antibiotics or oral ones and I don't see how he can get better without any. Can CBD suddenly take a major step downwards causing these symptoms for no other reason? I have emailed the neurologist who specialises in CBD but he is on annual leave and locally they have really no idea at all. Sorry for such a long winded post but I feel so alone and so scared for the future. Love AliBee1xx

9 Replies

How awful for you both! Could it be additional stress because your circumstances have changed and he feels up tight.

Having said that, my husband suddenly was unable to hold himself upright and flopped backwards onto the bed. I got him into hospital at that point as the house was not set up with disabled facilities and I had no carers arranged.

So it could be a "normal" progression. But what a time for it to happen! You must feel devastated!

I haven't looked to see where you are, but it sounds like emergency respite care is needed, if that is available.

Maybe someone in your area can suggest another CBD specialist who can help?

How dare he go on holiday!

I so hope you find care for you both and a solution to the situation! And that you have support for you at this very stressful time!

Big hug!

Jen xxx

AliBee1
AliBee1 in reply to honjen43

Thank you. Made me smile. We are in South West England. A singular lack of specialists !! AliBee!

Hi Ali,

It never rains but it pours, eh? Oh Boy!

Your post prompts a whole bunch of thoughts in me...I'm not sure I can make them cohere into something sensible, but for what it's worth here are my thoughts:

- My hubby went into "freezing" or "almost immobile" status all of a sudden. He had been declining cognitively and in strength for months, but one day with visiting speech pathologists (who were working on adapted technology for speech for him) he suddenly pushed away from the table, got up abruptly, said "I have to lie down", grabbed his walker and flopped down on the couch. The following day he had freezing, couldn't figure out how to get on the toilet, or into bed, or out of bed. Just couldn't figure out what movement to do or how to do it. Something Was Happening: a DownTurn...

So I think yes, it can and does happen suddenly in big "step downs" or "downturns" followed then by another plateau at the reduced level. (The good thing was he always seemed to rally a bit upward from the lowest point of the downturn - so the plateau wasn't at the worst, lowest point).

- Nigel has been struggling through this disease for coming on 10 years now (if I read your first post correctly) and the downturns seem to be coming on more frequently. You never know, some sufferers have amazing life spirit (Spiral's Mom, I'm talking about You!!..) but do prepare yourself emotionally that he could be much closer to the end than the middle.

- You can't stop the progression of the disease: Just do whatever you can to make him comfortable (as we know you do, ensuring his UTIs are addressed immediately, etc) and let him know he is loved. Nothing else will make a big difference. He, like other sufferers, has lost so very much: ultimately, knowing they are deeply loved is all we can give them.

Hugs for your healing and some rallying for Nige :-) XXX

Anne G.

AliBee1
AliBee1 in reply to raincitygirl

Dear Anne. Thank you soooo much. I knew I would get some anwers from this site and even though I know that you are miles away I can feel your hands supporting me. I was so looking forward to feeling better myself and enjoying this new home with Nigel where his access would be so much easier. It was so hard leaving our old neighbourhood but that made up for it and now it looks like things are not going as hoped. I will pray that he has a little upward turn so he can at least come home with a hoist and different care package.

Big hugs back AliBee! xxx

Kevin_1
Kevin_1 in reply to AliBee1

Hi Ali

There's nothing I can add to the other posts except that I'm thinking of you both and send lot's of positive vibes.

Warmly

Kevin

Hi alibee1

Sorry about what your facing with all this

I hope that you can get things sorted for both of you

My take on this is that they cannot release him from hospital just cause they want a bed and if you don’t want him in a n/h they cannot force it

You maybe need a hospital social worker involved cause you both need care at home as your not well enough to do things and have another assessment for what you need in the bungalow which the o/t should do

Hope that you get things that you need

Take care

Sue xx

AliBee1
AliBee1 in reply to Suebatt

Thank you xx

AliBee,

My heart breaks for you. Especially that your husband took a turn for the worse when you had surgery that limited your ability to care for him. When you have a caregivers heart like you do, it is devastating to not do everything you can to help your loved one.

With my wife, it did seem that the disease would progress in step changes like you have seen. I can remember specific times when significant capabilities would stop.

Thinking of you and your beloved,

Bobby

AliBee1
AliBee1 in reply to Beads0122

Thank you xx

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