This post was originally posted on Medium: link.
As each year draws to a close, it often becomes time to reflect on the events and memories of the previous 12 months. December for me will always be a significant month in relation to Parkinson’s, because it was the month in which I was formally diagnosed: 3 years ago now.
This year, I have engaged and participated in Parkinson’s Research and with Parkinson’s researchers and patient advocates on a whole new level to that which I had previously done. It started in January with a trip to London to attend the first Parkinson’s UK Research Support Network Development Team meeting of the year. The Research Support Network is a great initiative by the charity to increase awareness of, engagement with and participation in Parkinson’s research. It is well worth joining if you are not already a member. January also saw me meet Dr Miratul Muqit for the first time, when I had a consultation with him in Dundee. Miratul is a researcher who specialises in the genetics of young onset Parkinson’s. At our consultation, I submitted a blood sample for genetic testing, of which neither of us were expecting much at the time. The result would come later in the year….
In February, I created an online version of the Parkinson’s Research Interest Group’s that have sprung up across the UK, it was particularly inspired by the excellent group run here in Edinburgh by Ken Bowler. My aim was simply to demonstrate how effective a social media channel could be in both communicating PD research news and also to help bridge the gap between patients and researchers by creating a platform on which they could interact. It has grown spectacularly to almost 1200 members in less than 11 months and, more importantly, the feedback we have received is that members find the content both interesting and useful. It has also attracted contributions from some of the most prominent names in the field. The group now has a very capable Admin team who have all made big contributions to it’s success and I am very grateful for their continued support. We recently came to the conclusion that we have such a capable group, that it would be wasteful not to look to find ways to leverage this to greater effect on an advocacy level in 2018 and going forward.
In March, I received an excited phone call from the aforementioned Miratul (of the University of Dundee): it was almost as if it was an Archimedes in the bath ‘Eureka’ type moment. The blood test I had submitted back in January had come back positive for a mutation in the Parkin gene, one of the known genetic causes of Parkinson’s. What is unusual about my case is that it is not autosomal recessive: which essentially means that a faulty copy of the gene was inherited from both parents. In my case, it is from a single side which makes me something of a curiosity. The research on this is still ongoing and hopefully the results of this should be published early in the new year.
In April, Dr Esther Sammler of the University of Dundee gave a talk on the LRRK2 gene to the Edinburgh Research Interest Group at the MRC building on the Royal Infirmary of Edinburgh campus. Esther was an excellent presenter and gave an engaging talk on the University’s work to understand the function of the gene and contribute to the development of therapies. Also in April I drove up to Dundee for a laboratory tour and to meet with Professor Dario Alessi and Miratul again. It was hugely appreciated on my part for two guys so prominent in the field of Parkinson’s research to take the time to show me their work first hand and to engage with me on a personal level. There’s a lot to be gained by both patients and researchers from these interactions. Lastly in April, I First read the Science of Parkinson’s blog written and maintained by Dr Simon Stott. I cannot recommend this blog highly enough as a source for information on the latest developments in PD research. Simon is a prolific, engaging and entertaining writer who makes complex and dry subject matter both accessible and entertaining. We share a similar sense of humour and over the course of this year he has been a great source of support and encouragement for me.
In June, I met up with Ben Stecher, author of the excellent tmrwedition blog, whilst he was on the Edinburgh leg of his PD reasearch world tour. Ben has done a tremendous job in getting access to some of the top names in the field to get perspectives on the current and future direction of Parkinson’s research and his blog is compelling and essential reading. All that and he’s a really nice fella who was good company to have a pint with.
In July, I returned to London with a view to participating in the EPI 589 clinical trial, during which I met with Prof Huw Morris. Huw is one of the top names in Parkinson’s research in the UK, so it was good to make his acquaintance. The trip itself was an interesting insight into what’s involved in the selection process for a clinical trial. I enjoyed (if that’s the right word) the experience, even if I wasn’t ultimately selected. Although I was a bit disconcerted by my inability to recall words beginning with F during the cognitive part of the evaluations. Lesson learned from that is that if the first F word that comes into your mind is a swear word, just say it otherwise you’ll create a mind block that will inhibit subsequent answers!
In August, my fellow advocate John MacPhee and Dr Tilo Kunath took PD Research to the Edinburgh Fringe with their Eradicate Parkinson’s show at the festival. The show was an entertaining overview of all the work going on to achieve the title of the show itself and was very enjoyable to attend.
In September, I had my first blog published on Parkinson’s UK medium site. I’m very grateful to Beckie and Claire of the research communications team for the opportunity to do this: hopefully this is another informative and engaging example.
In October, I presented alongside Miratul on the work being done to characterise my genetic mutation and also on patient participation in research at the Parkinson’s UK Research Support Network conference. If you are interested, or perhaps even if you have a thing for droll red-headed men with young onset Parkinson’s, the video of the full conference can be found here, I’m on around 20 minutes in.
In November, I was literally sliced and diced for the cause when I submitted a skin biopsy at Alba life sciences in Edinburgh. This is part of the ongoing investigation into my genetics. Whilst it was a relatively painless way to earn a £100, it still involved a local anaesthetic, a scalpel and a stitch. Taking one for the team.
The year ended with another Edinburgh Research Interest Group meeting at which Dr Tilo Kunath presented a summary of current efforts to bring Stem Cell therapy to Parkinson’s, the full presentation can be viewed here.
It’s been great to get involved, I’ve met so many interesting people and feel empowered by the experience. Here’s to more adventures in 2018.