The Parkinson’s Research Advocates (Team P.R.A.G.)
I’ve lived as a PwP for about 8 years and shared with my siblings in the care of my father who also had PD. He passed away two summers ago at age 91. At age 63, I am still working f/t as a Professor and Clinical Research Scientist, in an area unrelated to PD. I hope that my training in epidemiological and clinical research can help others to understand how the clinical research literature can be translated for personal use (or not).
I first became deeply symptomatic and unable to take a single step, trekking toward Everest Base Camp about 8 years ago. Since that day, I never again felt ‘okay.’ Even in my early 20’s, I had experienced hour-long episodes of bradykinesia. So I consider myself a weird young/older onset Person with Parkinson’s.
When not working very long hours or doing prolonged endurance exercise every day (working for neuroplasticity!), I hang out with my partner/spouse in Brooklyn, NY, with my older son and two very old and happy dogs.
Born 6666 in the Netherlands, happy & healthy youth, spent quite some time high up in a tree as I lived in a foresty village. MSc in Health Care Management, BA in Modern Japanese Studies. Lived in Tokyo, London, Amsterdam. Glad to combine various roles in life, such as copywriter, wife, mother of 4, business owner (fintech), bi-lingual blogger, WPC2019 Official Blogger Partner and RockSteadyBoxer. PD dx at 46th. I believe in a rebellious and non-accepting approach of Parkinson’s, as no revolution ever started without rebels.
I was diagnosed with young onset Parkinson’s aged 32 in December 2014. My advocacy work includes voluntary positions as a Research Communication blogger for Parkinson’s UK, I’m also on the Research Support Network Deelopment Team and Research Communication Team. Furthermore I have been involved in lay grant reviewing for research grants.
I live in Stockholm, Sweden with hubby, 15 year old daughter and our two cats. I experienced the first symptoms of Parkinson’s (PD) in 1984, when I was 13 years old and now I combine my engineering skills with my patient experiences to help myself and others with chronic diseases. Currently, I am working to complete my doctoral education at Karolinska Institutet in the area of self-tracking for PD.
I was an ambassador for the World Parkinson Congress (WPC) in 2013 and 2016 and am co-chairing the Patients Advocates Committee for WPC 2019. I am also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel.
Read more on my blog: www.riggare.se.
I was born in Kenya as an Israeli to Polish Jews and moved to Canada as a toddler. After getting a BA from the University of Guelph I left for East Asia and spent nearly a decade in education while travelling the world.
I was diagnosed in 2013 at 29 and managing a Chinese education company in Shanghai at the time. I left China in the summer of 2016 to devote himself to learning as much I could about the disease and how I might be able to make an impact on the wider PD community. I have since traveled the world meeting experts and sharing what I have learned through my site, tmrwedition.com.
I retired a while ago from a career in Information Technology, principally in marketing and project management. Retiring a second time from public service as a Parish Council Chairman and village PC-fixer, my wife and I now live in Cornwall, the UK’s best holiday destination. Well, we think so. An idiopathic PwP since 2011, I focus on systems and processes, rational explanations, boys’ toys, keeping the body working, and not too much on myself. At least, I try.