Hi, My aunt is suffering from PSP. How can we donate her body for R&D purpose?

[priyankmalkan]

[peterjones]

hi priyankmalkan I hope your aunt knows this\\\only you said how can we donate her body\\\\ is it her wish mates and not yours take care it is a lovely gesture if it is your aunts wish

peter jones queensland Australia psp sufferer

[priyankmalkan in reply to peterjones]

Hi Peterjones, I am from India and my aunt is not in condition to take any decision. My uncle and brother are taking care of her and her condition is getting deteriorated day by day. We wish her to be free from the pain she is suffering from. Let me know what we can do.

[peterjones in reply to priyankmalkan]

hi priyankmalkan I am very sorry that your

aunt is deteriorating day by day mate I really am I understand that you wish her to be free of any pain im afraid i cannot tell you what to do when she dies if you donate her body im afraid that you might have to look into the legal side of things mate but not sure

I am not sure of your laws over there you would have to check this out\\\ its a pity that someone never ask your aunt while she was able to keep in touch with you what she would have liked done with her body when she was no longer with us

and put it in writing for you that would have been a lot easier for you mate so I cannot answer your question for you I am very sorry ==== take care look after yourselves peter jones queensland Australia psp sufferer

[jillannf6]

hi where do you live

donation fo the brain is not a problem in theuUk and can be done by the QUEENS BANK DEPOSIT IN LONDON - I have donated mine to PSP research for when i die

LOL jill

[Hidden in reply to jillannf6]

Dear Jilliannf6,

How wonderful that you have had the fore-thought to put arrangements for tissue donation in place before the 'big day' arrives. I will do this too. They request the brain and spinal cord only, as far as I can make out, so if you want a 'proper' funeral, this is possible too. My father's remains were cremated and actually, I cannot part with them just yet, so he and my mother, in ashes form, are with me at home still. I want to do something special with them like plant two special trees close to each other, where the branches can sway in the wind and the birds etc can live and make a home and enjoy.The Brain Bank lady wrote me a lovely letter thanking me for such a 'precious gift'; that really made me think because Dad was so precious to me and in life he had been a precious gift to the world, he had been such a kind and good man. Do you think that I am mad wanting to keep the ashes with me still? I just cannot part with them just yet!

[quickgel in reply to Hidden]

Hello Nader,

My wife bravely donated her brain to the Brain Bank and mine is going to the same place. Her cremated remains were scattered amongst the Bluebells under the trees at the bottom of our garden and I've asked the children to do the same with mine. I'm not a believer in an after life but take a little comfort that we may form part of adjacent blooms, or may even be part of the same flower, some years hence. It has been suggested I'm more likely to return in the form of a Thistle, a little unfair I thought!!!!! J.

[peterjones in reply to Hidden]

hi nader I do not think you are mad keeping your fathers ashes mate my wife has kept her mum and dad in the lounge room for years now I said to her at the start if its gong to make you sad seeing them every day we will not keep them

but she said she would be fine keeping them so I agreed and t was a comfort to her but I do not feel that she would like to see them go now after so many years anyway we did not get an urn I went nto an antique4 shop and purchased a silver kettle it was Victorian one of then that has the burner underneath and the kettle swings on a stand to save you lifting it

anyway I had the job of putting both of them in [ her parents] and i said to my wife I hope I do not spill any I don't want to leave a leg out or something but one day a couple came over our house and the lady went straight over to the kettle and lifted the lid\\\ I quickly said to her stella mum and dad are in there well you should have seen her face she dropped the kettle lid and came straight over to me and said im very sorry I did not know\\\\ I said thats ok

mate tea wont be for another half an hour

she thought we were going to make it in this kettle in actual fact I was panicking a bit when I purchased it because I was not sure if the both would go in it but it was great it filled up to the top just nicely her mother died first she was kept I a silver vase and then when her dad died I thought it would be nice if they were together that's my bedtime story for you so nader if you are comfortable with your fathers ashes mate you keep them and especially if they give you comfort and he was a good man

peter jones queensland Australia psp sufferer

[Hidden in reply to peterjones]

Dear Peter,

Your story about your wife's parents ashes is SO funny, I laughed and laughed, golly, you sound to be such a great couple, you are very lucky to have each other! My Dad would have laughed his head off too, that is just the kind of story he would have enjoyed, especially about taking care not to leave a leg out. I must say that now, after your letter, I do feel better about my Mum and Dad being in the cupboard close to where I sit a great deal.It gives me so much comfort knowing that they are there and not totally gone out of my life.Comfort is just the right word! Thank you for sharing, Anne

[MOMBCD1 in reply to jillannf6]

jill

pleas, please answer in double space or I cant read it

[quickgel in reply to MOMBCD1]

DEAR MOMBCD1,

I HOPE I'M NOT TEACHING MY "GRANDMOTHER TO SUCK EGGS" BUT YOU CAN 'COPY

AND ' PASTE ' THE POSTS YOU ARE INTERESTED IN INTO A 'WORD' DOCUMENT AND

THEN EDIT THE TEXT TO BE MORE READABLE FOR YOU.

I ACCEPT IT IS NOT CONVENIENT BUT IT IS ONE SOLUTION. I APOLOGISE IF YOU

DON'T NEED LARGE PRINT BUT THOUGHT I'D COVER ALL BASES. REGARDS, JERRY.

[MOMBCD1 in reply to quickgel]

yes, it is easier. thank ypu jerr8 7hank you for the large print too

[jillannf6 in reply to MOMBCD1]

HI MONBCD1 SORY ABOUT THAT CAN YOU DO WHAT JERY SUGGESTS BELOW?

LOL

LOL JILL

[MOMBCD1 in reply to jillannf6]

jill

i am happy that you can read it. but I can not . I suffer from psp. I am not a caregiver

[jillannf6 in reply to MOMBCD1]

I CAN DO BUT IT WOULD EB DIFFICULT TO DO SO AS TH4E CORRECTIONS DO NTO COME UP WHEN CAPS ARE TYPED1

LOL JILL

[Hidden]

Dear Priyankmalan,

Peter Jones is right, take care to get the right permissions first, either from your aunt or from whoever has power of attorney etc over her care and who knows her wishes should she now not have capacity. My father's brain and spinal cord were donated by me but he had said several times that he wished his body to go for research. It was something he would have wanted very much and I was so pleased that I accomplished this for him. It is quite a complicated procedure and you need several things in place otherwise you will fail. You do not say where you are, but here in England I went through Queen Square Brain Bank. They were absolutely lovely people to deal with. Their website is :ion.ucl.ac.uk or contact Susan Stoneham on Tel:[phone] or email: [e-mail]..

Good luck, I do not know how we will ever find a cure if we cannot have 'real tissue' for the researchers to work with. This is why we did it: to help those who may have the misfortune to follow this awful path! The sad fact is that we all have to die and once dead, we are no longer in our body, the spirit and energy of life are gone, our very essence is gone. We no longer inhabit our body, where we go I do not know, however, we cannot, in body be hurt any more, but we can leave a legacy to help others.

[priyankmalkan in reply to Hidden]

Hi Nader, I am from India and my aunt is not in condition to take any decision. She is suffering from the disease for last 4 years and her condition is getting deteriorated day by day. My uncle and brother are willing to make her free from the pain. But as she's still alive, is there any way to donate or the donation can be done only after death of the diseased ?

Thanks

[gmunsot in reply to priyankmalkan]

I understand that the donate is a personal decision. After death if, your aunt didn't make,the nearest family can donate her body only for transplants.

[wifemo]

Hello priyankmalkan - As has been asked, is it your aunt's wish?

Unfortunately my late husband was against the idea, so we kept to that.

I believe the brain bank will accept donations from those who do not have an obvious condition such as PSP so must check with our son how he feels about donating mine.

Mo

[Hidden]

Dear Quickgel,

For some reason your message has come through on my i pad but I just must answer you as it made me laugh. Your family sounds very much like mine and probably would say that I would 'come back' as something equally suspect, as a nettle perhaps! I too do not believe in the hereafter but think that our life's energy is returned to the world in some form. The bluebell idea sounds lovely. A.

[jillannf6]

mombcd1

i know you have PSP and have great difficulty reading my replies

is this double lien spacing any good for you as it will not correct t capitals?

LOl JIll