Cure Parkinson's (CP) started the international Linked Clinical Trials (iLCT) initiative to repurpose drugs for the treatment of Parkinson's disease (PD). Combining priorities with the Van Andel Institute (VAI), they hold an annual two-day meeting to present, examine, discuss, and prioritize suitable compounds for streamlining into clinical trials specifically for slowing down/stopping/reversing the progression of PD. I was an invited Parkinson’s patient advocate to the iLCT meeting held at the Van Andel Institute (Grand Rapids, MI, USA) last September 26-27, 2022. Herein is a synopsis of the iLCT program and meeting.
I was living the dream. I’d retired as head of art from a busy downtown Toronto high school, my husband and I had moved to a smaller town, and our children were ‘launched’. We were traveling a lot, and I regularly visited my ‘happy place’ - painting. Except something was wrong with my dominant hand.
This blog post covers my approach to dealing with my symptoms. If I cannot run, I will walk; if I cannot walk, I will crawl; and if I cannot crawl, I will find someone to carry me. PD may be an unbeatable enemy (for now), but as long as I keep moving, it cannot win. Read my story here.
This blog post was inspired by a Facebook post from a fellow Person with Parkinson’s Disease (PwP), that began: “I know that I am not as impaired as others here, but…” This was upsetting for me to read. I think that in the Parkinson’s community, we sometimes unconsciously shame people when they express their grief. Here, is what I want to say.
This blog post covers mobility issue for those with PD and means for overcoming these restrictions. Cycling, shown to be so valuable for PD sufferers, presents one key obstacle to overcome: getting on and off the bike. This can be resolved by exploiting recent technology developed for mountain bikes.
Sue Dubman has more than 20 years of experience in health care and research informatics for academia, industry and the government (NIH). Currently the Senior Director, Informatics Innovation, at University of California San Francisco Cancer Center, Sue is part of a multi-disciplinary team to innovate changes in clinical care and research. Diagnosed with Parkinson's disease (PD) in 2009, Sue has become an active advocate for improving the lives of those living with PD. Sue will have a poster at WPC 2016 (Exhibit Hall B, Level 1, Poster Board Number: P40.09).