CBD awareness

[Campsiewalker]

Hello this is my first post.

my brother lives with me and he has always had complex needs. Diagnosed with CBD in 2021 but symptoms since 2018.

Off his feet totally now, we have carers for a few hours and I use the hoist if required.

looking for permanent care home but finding places hard as they are unaware of the needs or it’s an old folks home ( my brother is 53)

Everywhere I go I have to inform them of CBD and even yesterday with DWP guy in to assess needs I had to make aware of how it degenerates. It’s exhausting.

my brother has regular spasms and some that look like seizures. We have a great team, Marie curie community nurse, district nurse, learning disability team and our GP.

but we have no clinical nurse specialist in neurology as yet and I feel most professionals are looking for expert advice as to next step planning. I do point them to PSPA but not always sure that they contact them.

with so many folk involved my house can seem like a local day ward and it’s exhausting. I’m lucky to have a team but I just hope they all research CBD and PSP as they are so similar.

I have three daughters all at home and my husband to. We also have a great dog who keeps us all entertained.

My question is, do you all educate others on your persons condition?

[Zerachiel]

Hi, Definitely yes. I am currently staying in hospital with my wife who has PSP and Aspirational Pneumonia,

I am constantly having to explain her condition and her needs. Every nurse needs instructing on what they can and can't do and that she understands what they are saying but has no way of communicating.

If you have a look here there is a document I use to explain her needs together with a PSPA introduction to PSP and CBD

healthunlocked.com/psp/post...

[45purple in reply to Zerachiel]

Karol has been in hospital for 7 weeks in which he has had pneumonia due to aspiration 2. I get fed up off explaining his condition to nursing staff . The illness should be made more aware to the nursing staff 💜

[Campsiewalker in reply to 45purple]

I agree wholeheartedly

Look after yourself too

[Grease3]

Hi Campsiewalker, it can be difficult getting a nursing/care home with any experience of PSP/CBD.

Our Mum has just moved to a permanent nursing home as she has PSP. The staff are learning/researching the condition and have so far, been very good. There is a document from PSPa which helps carers/professionals so you might want to have a look at that and give it to care homes, to see if they can manage your brothers needs, it might help. PSPa have also told me they are willing to go to care homes to give some training/guidance to staff which would be good (I need to follow up on this with Mum’s care home).

Hope this helps and good luck ❤️❤️

[Campsiewalker in reply to Grease3]

Thanks very much very helpful . Look after yourself too

[pspchronicles]

Sadly, yes. Contact the PSPA for informational material to have on hand that you can provide to others as well.

Tim

[Kelmisty]

My normal introduction to anyone involved with my Mum is…..

Hi her name is…. She has two rare illnesses one PSP and the sister illnesses CBD these are similar to other more known illnesses like MND. Parkinson’s and Dementia in some cases. They effect my Mum like this currently…… this is normal for Mum and this is abnormal….

I think I should get it recorded so I can play it back every time I meet someone.

But I do also think, I’m telling you maybe in the future you will meet someone else and go - yes I’ve heard of these!

[Campsiewalker in reply to Kelmisty]

Great information, Thankyou for sharing

[SunriseLegend]

Most definitely yes - my husband has CBD and has just spent two weeks in respite in a nursing home. There he was cared for a variety of different staff who had never met him before. Over and over again I have explained to staff the symptoms of the condition and how it affects him. They are unlikely to have cared for a person with CBD before, and even if they have, each sufferer has different symptoms to a lesser or greater degree. I concluded at the end of the two weeks that it is probably better if I can continue to care for him at home with support from the same few carers who know and understand his needs - so am working towards that

[Campsiewalker in reply to SunriseLegend]

Thanks Sunrise legend , it is truly exhausting. My brother is now in hospital with seizures, nursing staff are lovely but have no time to care for him.

I hope your plans to get your husband in a routine with carers who know him and in a space that is suitable for you both. Home really is the best. I also know that services in the community can be overburdened, so make sure there are clear care plans for future crisis.

We are there now, but 16 days later and I feel the medical team are listening.

[SunriseLegend]

yes - my husband has had numerous hospital stays and they really have no idea - and how could they when they are dealing with dementia; chest infections; hips; knees etc - I have to spend so much time educating the professionals that I think I should be on the NHS payroll!!