My mums gift


#1

hi,everyone i have decided to write on this forum as i felt it would be really good to share my story,my mum was told she had parkinsons about 15 years ago after being on her own for 7 of those years she moved in with me and my husband,she also had c.o.p.d.,over the years she steadily got worse visits th the clinic got more frequent,medication was changed as nothing seemed to ease any of the parkinson symptoms,about 3 years ago she declared to anyone who would listen to her that she would leave her brain to parkinson research,so when mum passed away in jan 2013 we stood by her wishes and donated (only a very small part is removed),we had some really lovley letters sent thanking us for this donation,and a couple of weeks ago we had another letter to say the report was now in.....and what a surprise we got ,it said mum never had parkinsons she had a rare condition called pure nigral degeneration,a condition which mimics parkinsons,its so rare not alot of research has been done and we are not getting very far looking for information,now i dont want you all running to your doc screaming doctor doctor i might not have parkinsons,i am writing this to maybe help someone to make the decicion whether to donate or not,we know my mum would be laughing right now saying i told you it was the right thing to do,i hope this info has helped maybe just one person decide whether to donate or not,it is so important to carry on research into parkinsons so hopefully one day there will be a cure.


#2

Thanks for sharing your story juney. If anyone is interested in brain donation, or would like to sign up to the Parkinson's UK Brain Donor Register, you can find out more at www.parkinsons.org.uk/brainbank. The work of the Parkinson's UK Brain Bank is completely dependent on people with - and also without - Parkinson's who pledge their brains to research.

Thanks again juney.

Sharon


#3

So, any comments by Admin. on the origonal post regarding that it was NoT Parkinsons but something else? 'Pure nigral degeneration.'??


#4

Thank you so much Juney for sharing this with us.  Your Mum would indeed be smiling.

It is something I do think about but have been so busy with other bodily issues.  I guess it would be useful to include in my Will my desire for my brain to be donated?

I am not a medic or scientist but assume that diagnosing problems with our brains is one of the most complex in our bodies.  I therefore don't feel too surprised at this news.  Rather, relieved that your mother was brave enough to ask for this to happen and so help take research into PD and nigral degeneration.

I also wish that we could get something going so that there would be huge fund raising event, similar to the recent one for cancer and Children in Need.  I'm thinking of writing to Simon Stevens, the new Head of NHS trying to urge him to add Parkinson's to his list of diseases needing urgent attention.

Thank you Juney for carrying out your Mums wishes and for talking to us.

 

Love

AberWells