MIXED FEELINGS: OR SOMETIMES LIFE JUST TAKES YOUR BREATH AWAY
This week was supposed to be a time of celebration. A group of Parkinson’s patients has successfully established a non-profit that advocates for inclusion of patient voice in planning research, designing services, and evaluating outcomes. Yesterday, the website (resolveparkinsons.org) for Resolve Parkinson’s launched…this was to be the beginning of our efforts to raise the visibility of the many problems that beset the delivery of supports to Parkinson’s patients around the globe and engage those with lived experience in shaping priorities for systems change.
Sadly, the celebration will have to wait while we mourn one of our founders. Dr. Albert Wright (83) passed away on Friday evening, January 24, suddenly and without warning while at home. Dr. Wright, himself a patient, was a chemist and physicist. Diagnosed in his later 70s, he focused his scientific intellect on the Parkinson’s puzzle: despite over 50 years of study and billions of dollars, we don’t know the cause, we can’t measure progression, and there is no way to stop it. Albert Wright spent the last years of his life refusing to accept “that nothing can be done” and working to find something to help his fellow patients, generously sharing what he learned. He gave many people hope and relief from some symptoms.
If you are looking for inspiration, read our dedication to Dr. Wright. If your family members or friends have been touched by Perkinson’s, I invite you to get to know, become involved in, or just help us spread the news of this new effort. Spend a few minutes at resolveparkinson’s.org and let us know if you want to contribute your voice to this important work.
When your neurologist takes away your meds
Survey to understand which Parkinson's symptoms impact your quality of life
Michael J. Fox’s just released book; No Time Like the Future: An Optimist Considers Mortality
Three distinct brain circuits in the thalamus contribute to Parkinson’s symptoms
