Body for research

[Spiralsparkle]

Hi all

Not been on for a while due to various reasons....

Anyway out of the blue Mum has just said to me I want my body to be used for research, have I told you that before. Which she hasn't as she won't have conversations regarding her future wishes so this really has come out of no where but maybe she has to been thinking it for a while.

Has anyone got this in place and how would I go about it and finding out the ins and outs so I can explain it fully to Mum

Thanks

[Kevin_1]

Hi

Welcome back

Apologies for the brevity - I need to get food on the table!

organdonation.nhs.uk/about-...

But both UCLH and ?Birmingham are keen to have brains for their research.

If you telephone the PSP Association they are involved in this and will direct you.

If you get stuck I will look out the UCLH research study - I know they are very keen and they have quite a large PSP / CBS research program.

Waiving and what a shock for you.

Kevin

xx

[Spiralsparkle in reply to Kevin_1]

Thanks Kevin. I just looked on the PSPA website also about brain donation. Will have a look at your link too. Birmingham is close to us so would be good. I've asked her again if she is sure and she is adamant.

[abirke]

We donated Bruce's brain to CurePSP.org we followed their guidelines. Also we have a research hospital in my town so I may just drag my body in there and die! Which the way I feel shouldn't be too long .... seriously, I know UK difft than US but medical schools may want the body.....esp. with rare cases...

AVB

[Spiralsparkle in reply to abirke]

Oh no are you feeling not too great at the Moment? Big hugs. Take it day by day xx

I've emailed a brain bank this morning to see if they are best one for research into CBD. It appears in UK you can't donate your body if have diagnosis of neurological condition.

It has made me think about it myself so think I will be registering to donate too.

[abirke in reply to Spiralsparkle]

Yes I offered to donate the rest of B's very healthy body to someone who might need a lung or other organ. But he was not eligible for same reasons.

Thanks for the hugs Ss

Andrea

[Tillyhugs in reply to abirke]

You sound so down. Please know we care. And send our love. Hugs 🤗

[abirke in reply to Tillyhugs]

Thanks Th, I am trying to cope. daughter making decisions to suit herself ...not thinking of anyone else's too stressed emotions...but I will survive....oh and new meds for my own neurology semi suck.... and trying to find a job.....you know, just life....

Thanks for the hugs

AVB

[loppylugs5]

Either log on to ion.ucl.ac.uk or tel. [phone] to find out about donating both healthy and otherwise brain cells.If you do decide to donate you will be given a donor card to carry.Personally I found it a comfort to know after all Des's suffering something good might come from his death.I send much love to all of you with PSP and the carers.Px

[Spiralsparkle in reply to loppylugs5]

Thank you.

Yes I agree if something good can come or this horrid illness by having more research done. I think I will register myself also .

[VronB]

John and I have both left our brains for research (mine as a normal one for comparison). John's neurologist suggested it. Google it but if you need an address/telephone number let me know. Xx

[Spiralsparkle in reply to VronB]

Hi Thanks I've emailed the brain bank in London this morning asking if they are best one to be registered at for Mum with CBD. X

[Duffers]

You should check this out SS. My understanding is you either leave your body or your brain, but undertakers can't do both. Check with PSPA.

Strange the things that pop into people's minds sometime but if it's your mum's wishes then you do need to get info.

Take care. Marie

[Spiralsparkle in reply to Duffers]

I've done some research this morning and if your have a terminal neurological condition they don't allow full body donation so it will be just the brain and I think you are correct in that you can't do both anyway.

I've emailed the London brain bank at Uclh to see if they are best one to be registered at for CBD. The link was on PSPA website and had FAQs questions on brain donation so I'm clearer now on what happens.

She said this morning she wants to help others. Her cognition is declining but I've explained and tried to get her to understand what that decision means. I think it is a fabulous thing to do if that is your wish too but she has always thought of other people first. I think I am going to register myself too as we do have a history of neurological conditions in family a few generations along.

[rriddle]

SS - For sure Queen Square Brain Bank in London (UCL) is one of the top brain banks in Europe for PSP, CBD, etc.

If there are any folks reading in the US, you *can* accomplish both body donation and brain donation but everything needs to be worked out in advance.

Robin