Brain tissue donation

[PUTLAND]

I would appreciate some information from anyone who set up for tissue donation. My husband is at late stage PSP and I would like to be ready to donate tissue. I live in Ireland and would love someone who has set up the necessary arrangements to let me know how to set this up. Sorry message all over the place as I can't believe I am at this stage. Xxx. Ronnie

[NannaB]

Hi Putland,

My husband donated his brain and spinal cord but in England. Someone from Ireland may respond but I’ve done some googling.

There is a brain bank in Dublin, website brainbank.ie The website answers all the questions you may have. I’ve looked at it.

Phone: [phone]

Email: [e-mail]

Address: Teresa Loftus

Project Coordinator

Dublin Brain Bank

Beaumont Hospital

Dublin 9

Ireland

Hope this helps.

In October I received a letter from UCL ending with, “I hope that it will be of some consolation to you that many people with neurological disorders will be offered help as a result of your husband’s priceless legacy”.

It was indeed!

Best wishes

Nanna B

XxxX

[PUTLAND in reply to NannaB]

Nanna thank you for your help. Can't believe I am at this stage. In the hospital with Liam at the moment. He is on the nebuliser. Temperature very high. Giving him morphine. I will ring that number thank you so much. Xxxx

[Robbo1 in reply to NannaB]

Hello NannaB nice to hear from you. B is in the last stages, but not final stage of PSP. We have not discussed tissue donation, but in the past, he has had no qualms about it. I don't think he wants to discuss it, probably leaving it up to me. We don't discuss death either. He is like my father, very positive and we couldn't knock this by telling Dad that he was dying, although he did tell Mum and I to look after each other, so he must have known.

I don' t know if I can donate B's tissue . Could you please give me the details of where I can ask ? I'm in Sheffield, England. Thanks . Sending warm wishes and a big hug. X

[NannaB in reply to Robbo1]

Hi Robbo1, The Brain Bank website is ucl.ac.uk

You can phone the administrator Lynn Haddon on

02078378370 or email [e-mail]

The staff are very understanding and made it very easy for me to talk to them.

Best wishes

XxxX

[Robbo1 in reply to NannaB]

Thank you. X

[Beverley52]

Hi. I live in Ireland

My partner died at Xmas. He had MSA. Which is a rare neurological disease. Very debilitating, and has similar problems to PSP. He decided to donate his brain for research. We tried to donate to the MSA Trust. But where unable to do so as the law does not allow for tissues to be transferred between countries.

We were assured that all the findings from his neuropathology report would be shared with the appropriate research facilities, wherever they were. Be that England , America etc. And all this information was in the paperwork that we signed. You can choose how the information is shared. You can also choose wether you want drug company’s to have access to the information. We felt that drug company’s need that, in order to help develop better medication. But many are against that, as they feel drug company’s are making money from their misery. But each to his own. I’m just saying you can have a say in how the tissues are used. You can also choose to have a copy of the findings. That arrived about 4 months later.

We organised this through Billy’s neurologist. About 18 months before he died, and whilst he was still able to voice decisions. . The neurologist got all the paperwork, took us through it all, step by step, so that we understood it all. And was there to witness our signatures. Billy carried a donor card then with a donation reference, and phone number.

When he went, it was up to me to make the call.

I, and all his family, are very proud of him, for making that decision.

If your doctor, or neurologist is unable to help with organising this, you can contact the brain bank yourself, you would need to contact the donation coordinator. I will find you the email address for him. And can forward it direct. Via private message, or post on here. Whichever you prefer.

I wish you so much good luck. It’s not an easy decision, and some family will question the decision. It’s the thought of it that scares people. But it’s the best decision we made. Hope fully we will help other sufferers in the future.

Best of luck. Beverley

[PUTLAND in reply to Beverley52]

Thanks Beverley for all that information

[showwaddy]

Good luck to you and I hope you and your husband can get this wish. My husband also wishes to donate his brain which has been set up but the main problem is speed.. there is only a 4 hour window between death -- having a doctor pronouncing life extinct and receiving at the funeral home .. after that the rush is over and there is a few days before removal. I really hope Steves last wishes can be fulfilled but it depends on the above falling into place. He is in a nursing home and hopefully this can be done .. the main person to have on board is the GP as he has said he would come straight away if during the day and has put this onto the Locala notes for out of hours doctor in case it is night time .. I am so hoping that this happens as I feel that I have honoured Steves wish.

[PUTLAND in reply to showwaddy]

Thank you so much for all the information. Heartbroken watching him. Xxx

[NannaB in reply to showwaddy]

Hi Showwaddy,

My husband died at home on a Sunday evening. The hospice had told me to dial 111 if it happened out of hours. I explained the situation to the person who answered my call and she said the doctor would come within 12 hours. I very firmly said, “ No, they will come within an hour or I will make it known publicly that important tissue has been wasted and my husband’s wishes have not been carried out as my request wasn’t granted”. Bearing in mind he had only just left me, I was not in the right mood to be argued with. 50 minutes later the doctor arrived. While waiting, I phoned and told the undertaker that C had gone and then phoned again once the doctor had left.

The undertaker said he had never heard of a death being confirmed so quickly out of hours and even said the same on the day of the funeral.

It’s a hard thing to deal with at a sad time but like you, I wanted to honour my darling’s wish.

XxxX

[showwaddy in reply to NannaB]

Thank you for the advice and help which makes everything more hopeful. I will feel so much better if his wishes are carried out. So glad you had a positive outcome. Regards Pauline xx

[Kathryn]

I have nothing to add to the practical,advice but would encourage you to go ahead with brain donation. We did this after my husband died, it was his wish and I and our sons were very positive about it . The process after his death was sensitive and efficient. I have taken great comfort from the thought that his damaged brain might help someone else and might contribute to better diagnosis and care.

[PUTLAND in reply to Kathryn]

Kathryn thank you. It's comforting to be able to talk with all on this site that understand . I can't believe I am at this stage cx

[vlh4444]

Our experience (in England) was the same as Kathryn's - sensitive and efficient. Some weeks later I received the full report which confirmed the cause of death to be PSP.

Vicki

[enzo501]

Putland,

I am only familiar w/procedure in US ..Both the Mayo clinic ( Jacksonville ,Fla) and Cure PSP website will guide you to the people that can get you where you want to go.. We have done all the paperwork ..the thing you will need separately is the person that will do the actual removal needs to be notified when the party has deceased .Organ donation if not intervened can mess up the whole procedure and will take the brain and discard it ....good luck ..it's the right thing to do ...and you will get the formal autopsy in a month or so ....

[Marie_14]

Ronnie what you are doing is great. I left it too late to do the same thing. I did ask 2 weeks before he died but never heard a thing!

I know Beaumont Hospital. In fact I went to school in Beaumont! They are supposed to be very good at the hospital which was built on part of the school grounds I think! Small world? I hope your enquiries go well. Take care of yourself and a big hug to you.

Marie x

[PUTLAND in reply to Marie_14]

Thanks Marie, Liam is in St Vincents near Ballsbridge I have spoken to them and tomorrow Monday they will sort it out and have everything in order. Liam is still struggling hope it won't be too late. Thank you for all your kind messages, we understand each other on this site and it's a great comfort. Xxx

[Marie_14 in reply to PUTLAND]

Ronnie good luck to you. My brother is a Liam too! So lots of love to your Liam and I hope when he goes it's peaceful. I will say a prayer for you both tonight.

I hadn't realised you were in Dublin. My Grandfather was actually born in Dun Laoghaire. I was born in Dublin and still have lots of cousins there.

I know St Vincent's too. It used to be a good hospital so I hope it still is and they are taking care of you too? This is all so stressful but some of us have been through it and are still breathing - just! There is no denying it is very difficult however! The new normal and very hard to come to terms with.

Hugs to you.

Marie x

[Tokki]

Dear Ronnie, others especially Nana have given all the information I could have provided and I am sure that the brain banks communicate well so you should be able to get it sorted. Fortunately, donation was something I was able to discuss with Carol and she was able to make her own decision. However, Carol had been a blood donor all her life and signed up for an organ donor card as soon as they became available so it was a natural progression/assumption that she would have agreed to brain donation even if she had not been able to sign the forms herself.

I have signed up and would encourage others to consider this.

I hope all works out for you.

Keith

[Figment17]

Sorry to post a cautionary note : my husband expressed a wish to donate brain tissue when he was diagnosed with PSP in April 2016.

He has been in hospital for 5 weeks with aspiration pneumonia & has now been home for nearly 2 weeks but has become quite poorly once again.

I realised that I knew nothing about the procedure for registering my husband's wishes so contacted UCL. I received a phone call from the brain bank there yesterday when I was informed that their protocol would not allow them to accept the donation. The reason given was the speed of my husband's deterioration which I was told might indicate Prion Disease ( even though my husband's original diagnosis of PSP by Professor Bandmann in Sheffield was subsequently confirmed this year by Professor Leigh in Sussex )

It therefore seems that I shall not be able to carry out my husband's wishes but it is also a concern to the family that the PSP diagnosis be questioned in this way. I should make it clear though that we have every confidence in the PSP diagnosis.