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Junior Member
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Join Date: Sep 2010
Location: Countryside Durham UK
Posts: 41
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Junior Member
Join Date: Sep 2010
Location: Countryside Durham UK
Posts: 41
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I thought this may interest,,
I was a participant I wanted to prove gdnf works I was always aware that this was not a viable way of dispensing it large scale on the day-to-day basis but I hoped that by proving the science of the protein it would lead to a cure with further investment and development
. It was very demanding and took over 2 1/2 years of my life but if I have to make the same decision again tomorrow I would choose to be involved
March 2015/ I went to theatre at 8am biggest fear wondering whether I would wake up that was a risk I was prepared to take.I wanted to improve my life.10 hours later I was awake in recovery. Looking like a battered pixie.A pointed bandage covered my wound and port. My pixie hat was a crepe bandage. A black eye and half an eyebrow. Bruises no doubt from being moved around in theater and in and out of scanners.The science for me didn’t matter I wanted a slice of the cake GDNF.
Infusions commenced and every 8th week medication was withdrawn,I had the humbling experience of having to be cared for and needed to use a wheelchair.I felt no benefit whatsoever from any of the infusions.
Next phase I get GDNF and 3 infusions later there are changes, only one of which I mention here. I could take myself from home to Bristol no carer 500 mile round trip, I got myself to the Hospital no wheelchair.
GDNF worked for me.Was it worth it yes it was,I learnt much about my Pd and I have hope for the future development of GDNF
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