Parkinson's with a Purpose

Make a difference. Live the best possible life.

Tag: Event

  • A Man With a Plan

    A Man With a Plan

    So what is the PDTTUK Plan? As stated previously in my other posts to this blog, I am convinced Table Tennis is one of the most therapeutic sports for neurological conditions, which can be fun and easy to get started. Hence my campaign to raise awareness and education through research studies to justify the claim. Encouragement to then get as many (PwP) people to give TT a go, especially if they haven’t played before. It’s a fun way to Exercise.

    The PDTTUK plan is nicely coming together as well: EDUCATION has initiated; EXERCISE session is established; ENGAGEMENT has started, with a handful of enquiries from new and existing players, and; EXCELLENCE / EXCITEMENT, to attend the 2nd ITTF Parkinsons World Table Tennis Championship, is finally open for pre-registration.

    Then if they like it, and want to start to (re-)play competitively or as serious sports therapy to help manage their neurological condition, it would be great to have a national tournament – friendly and fun. For those wanting to go the whole hog, then finally, they can get the chance to Excel, despite their chronic condition, and play in the 2nd ITTF World Parkinsons TT Championship taking place this summer. Read on for further details

    Graphic of the Plan to get an England squad to the 2nd ITTF PWTTC
    Graphic of the Plan to get an England squad to the 2nd ITTF PWTTC

    On Monday 2 March I used the opportunity of a PD Research Talk, which Alan and I were presenting to the Lowestoft & Beccles Branch, to include my recent interest in exercise and TT related studies. My talk on the topic got a round of applause after a 20 minute monologue which can’t have been that boring. Followed by another show of appreciation after a handful of attendees had a go with my ‘pop-up’ TT set – see my PDTTUK Facebook updates, photos and videos for details.

    Lowestoft branch late 2019
    Lowestoft branch demo pre-covid
    Research talk to Lowestfort branch late 2019
    home-made TT table
    Homemade TT exercise room for covid

    Then on Tuesday, I heard back from Parkinson’s UK South East Fundraising Manager, Shana, that we’ve been given permission to use the Norwich Castle Quarter Ping Pong Parlour for a promotional event on World Parkinsons Day Sat 11 April. We’ve already got support from the local PD branch to help fundraise and the Norwich City TT Club are assisting with running the event. So save the date and visit us: 10 – 2pm Saturday 11 April 2020, Castle Quarter shopping centre, Norwich, NR1 3DD

    Castle Quarter shopping centre, Norwich

    Wednesday is the regular session for newbies to try ‘ping pong’ in a safe and friendly environment. Thanks to ActivIpswich, Del and Mike in particular, people with Parkinsons and similar conditions are welcome to attend their Ping Pong and Soft Tennis weekly session at Gainsborough Sports Centre, Ipswich. For the past four weeks we’ve been advertising this for Parkies to give it a go, we’ve had a couple of PwP’s attend each week, sometimes with family supporter: thanks to Derek, Justin, Jason, David and John, +3 significant others.

    A great way to try out TT in a safe and friendly session

    And it looks like Justin and David are now regulars, no doubt thanks to the tea/coffee and biscuits the centre kindly provides. Justin was previously napping during this time of a morning, but has found a new fun activity that keeps him awake, and puts a smile on his face when he gets a sneaky ‘ace’ serve, straight down the line.

    Thursday, I finally managed to free up sufficient space in my garage to set up a practice table, courtesy of the BT TT Club, with my new TT buddy – Roberto, the robot. There’s just about sufficient room now to swing a bat (but not a cat!). So hopefully if I practice for another 10,000 hours before the summer I should be good enough to enter the next tournament…

    Roberto my TT robot – so far, he is winning!

    Finally, on Friday, my personal goal and obsession came a step closer with the formal launch for the 2nd ITTF World Parkinsons TT Championship, being held 27-29 August 2020 in Berlin, thanks to Yuvedo and all the other sponsors. Pre-registration is open along with further details via the PWTTC website (there is an English translation option on the site if required).

    Just when I thought it couldn’t get any better, Table Tennis England got in touch, asking for a meeting with me, Parkinsons Uk and British Para TT Team… Exciting times ahead I am sure. So, thanks for reading this far, and carry on watching this space for the next exciting update…

    I love it when a plan comes together!

    BoytonBoy

  • From stem cells to circuits, research conference – patients perspective

    From stem cells to circuits, research conference – patients perspective

    This post first appeared in the RIGeast blog, May 2019. 
    Upon reflection, it was most pertinent for the stem-pd.org 
    phase 1 clinical study I was later to be offered to take part in.

    DSSCC, Crete, 2019

    Following our involvement hosting the panel session at the 10th Gretchen Amphlett lecture in April 2019, the East of England Research Interest Group were privileged to be asked to represent patients with Parkinson’s at the CamBioScience research conference on ‘Development of the Dopaminergic System: From Stem Cells to Circuits‘ otherwise known as DDSSCC2019. 

    DDSSCC 2019 Programme
    DDSSCC Programme May 2019

    This post represents my personal views as the lucky member of the RIGeast steering board available to attend, 13-15 May 2019 at the Fodele Beach Hotel, Crete. Much gratitude is owed to CamBioScience and Parkinson’s UK Research Support Network for enabling our participation in this conference. Further details are available online in the conference abstract booklet 

    “Being a lay representative at this conference was like drinking from a fire hydrant.”

    Although I have no background in biology or chemistry, I have had Parkinson’s for nearly 10 years after I was diagnosed aged 44, as well as experience of caring for my father-in-law who also has had the condition for over 20 years. Like many others in the Research Support Network, I find taking part in the research makes me feel more in control of the condition whilst helping to move things on towards an eventual cure. 

    DDSSCC Conference Attendees
    DDSSCC Conference Attendees

    This was my first involvement at a basic research conference, adding to the dozens of research related volunteer and PPI activities I have thrown myself into since my diagnosis in 2010. The first two days were long and full-on from the start.  There were over 60 attendees from around the globe, each expert in their own field from a wide and deep field of scientists. Just about everyone got to present their latest work, either through a brief but intense formal presentation, or via the Poster sessions. 

    DDSSCC-posters
    DDSSCC poster session

    “My brain is full, and it hurts.”

    Every speaker talked passionately and knowledgeably in a way even I as a Lay representative could just about follow. All commented how long overdue such a gathering had been needed, to get everyone on the same page as the levels of understanding and funding in stem cell research boomed with the promise of some significant breakthroughs looming on the horizon. 

    The final day was more tangible to me as it dealt with the cell replacement strategies for Parkinson’s Disease and some of the clinical trials in development. Whilst there was no EUREKA moment, as far as I could tell, the mood and buzz throughout the whole event was very positive indeed. 

    “There is no failure, only feedback.”

    What struck me throughout many of the presentations was just how mind-blowingly complicated this whole field of bio-science is. It really highlighted how we were trying to unravel the secrets of Billions of years of evolution to decode our biological stew-of-a-brain, all in the blink of an eye. And an eventual result cannot come quick enough for us im-patients!

    However, as an engineer and a potential recipient of such treatments for my condition, I was also mindful that major challenges remain :

    • The many unknown, unknowns frighten me
    • Even the known, unknowns are worrying – to the Lay reader
    • And the commercial drivers, particularly in this age of austerity, depresses me 
    ddsscc-daconstage-edited
    PPI summary at DDSSCC 2019

    Here are some of the key lessons I learnt and would like to share:

    • Continue to include Patient Involvement in future events, even for basic research content
    • Allow patients an opportunity to feedback to the event/audience
    • Include Patients in any Poster Sessions so they can explain who they are, what they represent/can offer, how they can assist and what outcomes they are hoping to achieve or take away

    On balance, I am leaving this conference with a feeling of HOPE. It is through diverse, open and collaborative conferences such as this that spawn innovation and breakthroughs. Hopefully the choice of location was inspirational and the ingenuity of the ancient Minoan society will have rubbed off on all the participants. So, Godspeed with your investigations so that together we can take the LEAP OF FAITH needed to achieve clinical outcomes.

    Andy

    East of England Research Interest Group
    May 2019

    Postscript

    A friend shared the above report with Dr Simon Stott, Cure Parkinson’s Research Director, and replied…

    “Andy’s piece was awesome and I felt compelled to share it with twitter” Dr. Simon Stott