‘Neurodegeneration in Aging Down Syndrome’
Over the last few years Richie and I have been part of a five year research project with University of Cambridge, Neurodegeneration in Aging Down’s Syndrome, which looks into the effect that aging has on adults with Down’s.
Richard started as a participant with the research team and had a trip to Cambridge with Mum to undertake memory test, brain scans and blood tests. I then joined as a sibling ‘control’ undertaking all of the same tests and scans. So far, we have each had three visits to Addenbrookes Hospital, most of which are held over two days in order to make it as relaxed as possible for the participants, as it can be quite overwhelming for them.
The last visit we both had was in December 2019 in which we both agreed to have a lumbar puncture. Analysis of the spinal fluid is part of the research so after lots of information and discussion with the team Richard and I agreed to go ahead. He travelled to Cambridge with Mum and spent two days there doing some memory tests and having the procedure. He was a little bit distressed after his, as it did hurt him. He told me it hurt and then found it a bit amusing that I was going to have the same thing done! I went a week or so later. The procedure, whilst not pleasant, was not as bad as I thought it would be.
We have two years left as part of this interesting and important study and I know Richard is very proud of us both being part of this programme.
The Importance of being Richie 