CBD and hip and bed rails: Hi All. Thanks... - PSP Association

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CBD and hip and bed rails


Hi All. Thanks for helpful replies reference Nigel 'seizing up'. Although it was the middle of the night I immediately felt support. The Occupational Therapist kept him on the small admissions ward and he was transferred on a rehab pathway to Glastonbury Hospital (about 30mins away) on Friday arriving early evening. I wrote a 'This is Me' electronically in great detail and a friend who lives near the hospital was there when Nigel arrived so the staff could have it to read and refer to. One nurse was in opposition to some of it but was overidden by the Matron luckily. He is still there and not progressing much mobility wise and is now on a textured diet and thickened drinks, which he hates, but the family took in a load of Yogurt drinks and Mango juice which hopefully he will drink. There are not enough staff to supervise him when eating and drinking so eating little of the main meals.

The neurologist himself emailed me back in the absence of his admin lady and says that anything even diarrhoea can now knock him off his base line, but that as he thinks Nigel has other brain deterioration issues, not just full blown CBD, rehab should still help, so that email has also gone to the hospital and the PSPA booklet for OTs is there too.

In the meantime, 1 hour after he arrived there, I stretched my leg and my new hip dislocated completely !! Absolute agony. Luckily I could reach the phone and my sister came round and I was taken in by ambulance 45 minuts later and went down for manipulation under general anaethesia on Saturday morning, which was luckily successful. I came home Sunday night and my daugher from Wales is here with me and keeping me in line as I am now on strict precautions for at least 8 weeks. The surgeon does not know why it happened but maybe when Nigel was so poorly on the Tuesday night I helped our 'sleep in carer' too much. Anyway I am on the mend again but lost a lot of confidence. Luckily I am able to use all Nigel's aids and even his hospital bed. Funnily enough I observed that when I was in hospital and in a hospital bed I felt so much safer with the rails up and was able to use them to reposition myself once I was no longer in pain. Hopefully we will both become more mobile soon and he will be able to come home. I must remail positive and do realise I must make the most of this 'non carer' space but I do miss him and feel very helpless. Love AliBee1

25 Replies

Oh, Alibee

You have both really been in the wars.

I do hope he keeps his baseline and that you get mobile and share together again soon.

And, can your daughter really keep you in line? ;)



AliBee1 in reply to Kevin_1

Thank you Kevin. He is very agitated which always affects his mobility so there is no way he will be home just yet. I do miss him.

My daughter says it is a very hard job but she is having a dam good try! She goes back to Wales tomorrow and my other daughter and grandaughter are coming for 2 nights. Sh eis much more bossy !! Love AliBee1

Kevin_1 in reply to AliBee1

Oh, Ali

I do hope he settles soon... I hate seeing my Liz when she is in one of her non normal states... I have some sense of the anguish you must be facing. Can I offer you a virtual hug?

As for the daughter replacement thing... I read that as, "They are sending in the hard corps."

Some tips:

Put yourself up in a hotel for a couple of days. :)


Get you friends to ring them and to make lengthy calls involving checking things upstairs... Have Taxi outside with it's engine running.

As if you need tips at all. ;)

I really feel for you and this hip dislocation on top of all. You've made no mention of the pain. I expect that is not slight at all. So damned typical of a carer. 😾

I'm sending you good vibes and a daughter proof invisible suite... not that you really need it... I think they might just be chips off the block. (Chuckles).

Do keep us all up to speed... You are quite a presence here and we care.



AliBee1 in reply to Kevin_1

Thank you Kevin for a wonderful chuckle and the tips. By the way the pain was excrutiating and two generals in 10 days and all the manipulation amkes my body feel like it has been used as a punch bag !! Thank you also for the virtual hug. It is greatly appreaciated x Alli Bee

Dear Ali what an upset for you? Fingers crossed that your hip now heals and that Nigel manages alright too. Why is it everything happens at the same time?

Hugs to you.

Marie x x

AliBee1 in reply to Marie_14

Thank you for the hugs. I don't understand why it all goes wrong together but it does make one realise how much we carers do for our loved ones forgetting about ourselves often. Love AliBee 1

Wow Ali, you two are really being put through the trials!! All this on top of the big move to your new house - yikes!

If it's not too personal, what else does the neurologist think is going on with Nigel's brain?

Poor guy.. How are his spirits?

Thinking of you both and hoping you get well soon XX

Anne G

AliBee1 in reply to raincitygirl

Hi. His spirit is really down and he is being very disruptive as he just wants to come home. I talked to him for 10mins today to try to calm him down. His talking is much more slurred.

The neurologist thinks that there was shrinkage of the brain since 2007 when he first developed the tremor which was diagnosed as not being Parkinsons. He feels that the CBD kicked in later as otherwise he would no longer be alive but that the other brain damage had already occurred. He was diagnosed with depression after that consultation but it obviously was not that. His most recent CT scan has not shown any marked changes over the last few years. Does that make sense? I feel very useless. Love and hugs AliBee xxx

raincitygirl in reply to AliBee1

It makes sense: CBD can have shrinkage of the cetebral cortex as well as specific areas of tau damage that affect speech or movement etc - at least that's what happened with my hubby: MRI showed the shrinkage.

Did you see Kevin's post of the video from UCSF conference? His string is "What's going on with CBD?" It's good.

Best of luck with your healing and getting Nigel back home...Enjoy some good sleep while you can!! XX

Anne G.

AliBee1 in reply to raincitygirl

Hi Anne, That is very useful knowledge. Thanks. I did watch the video and found it excellent and I have just had a good chuckle at his last response with tips etc. The neurologist did request another MRI scan but with everything going wrong it has not happened yet. I am sorry if what Nigel and I are going through is bringing back sad memories for you but it is so good for me to know that we are not on our own and experiencing things no one understands as it feels as if CBD is so alien to so many health professionals and hard for them to understand. Big hugs AliBee xxx

Oh Ali!! You have had it rough. What's the saying It never just rains it pours or something like that. I hope you feel better soon. I know you miss hubby but you need this time to take it easy and recover. Hope Nigel settles down. Take care. xxxx

AliBee1 in reply to daffodil48

Thank you so much. I do realise I need the time to recover but I still feel useless as health professionals just do not understand him because it is not Parkinsons and not dementia and whenever he has been in hospital before I have been with him most of the day. The OT has said that she has found the PSPA booklet very useful. Love AliBee

What a tough time for you both.

Thinking of you and if it's not too forward for a newbie, virtual hugs too.


AliBee1 in reply to AJK2001

Not at all forward. Virtual hugs are soooo appreciated and as I said to RainCity Girl just now it is so good to realise one is not on one's own and maybe one day I can be there for you.

Thinking of you during this difficult time. Have you tried Sainsburys fruit smoothies for Nigel ? I have found them invaluable and they come with different flavours. Are you okay with your hip now.... it never rains but pours. You are doing so well with it all ! Love Jo xxx

AliBee1 in reply to cameoboy11

Hiya. I have not tried those smoothies but the Yazoo no added sugar is good and we were recommended Mango juice which is really thick. I have sent a load up to the hospital so I am hoping that they are using them as he just spits out the thickened drinks !! I will try the Sainsbury ones once he gets home.I do not feel well enough to travel 30mins to the hospital as after the dislocation and second GA my body feels like it has been used as a punch bag but also everyone feels, and me in my heart of hearts, that the emotional pull of me seeing him then leaving him there would not be good for him as yesterday on the phone he siad that even if he could not walk well they could leave him out in the street and I could bring him a blanket and food out !!! Luckily he was much more settled in the afternoon when my sister visited and there is a nurse on who nursed Terry Pratchett whose books Nigel loves. Thank you. AliBee

Sending positive thoughts 💜

AliBee1 in reply to Karynleitner

Thank you xxx

Hi Alibee, what an awful time, you both have been 'through the mill'. I do hope you rest that hip and recover soon. Just let your daughter take up the reins, it's only for 2 nights. Thinking if you both. Best wishes Nanny857xx

AliBee1 in reply to Nanny857

Hiya. I am not being fair to my wonderful daughters. My eldest was with me for 4 nights and the youngest is here for two. I guess when one has been full time caring for 3 years it is odd being on the receiving end and because of the dislocation I must not have my foot sideways or turn without moving my feet and I get reminded. Good for me really. Chuckle xx

Dear AliBee

My goodness you are both having a rotten time.

Remember on an flight they say always put your oxygen mask on first - do try and look after yourself this is the only way you can then get back to looking after Nigel

Sending a big hug and lots of love Tippy

AliBee1 in reply to Tippyleaf

Thank you. As I have replied to others - having been a full time carer for 3 years it is so odd to be on the receiving end. Have you read the brilliant book 'The Selfish Pigs Guide to Caring'. I loved it as it made me laugh. My sister has just read it and text me 'Page 67 is very appropriate'. It says that we should give as much care to ourselves as to the one we care for as we have probably been absolutely useless at doing that. Love Ali Bee

Tippyleaf in reply to AliBee1

Great book my step daughter bought it for me about the same time!!!

We have to keep sane!!

Love Tippy

I hope things improve soon for both of you!

AliBee1 in reply to Malattia

Thank you xx

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