What should society/your loved ones/your caregivers/your friends do to make life easier for a PWP (person with Parkinson’s)?
A diagnosis of PD is usually highly disruptive. So it will be helpful to the PWP (person with Parkinson’s) to have a basic understanding of what PD is, what causes it, and how to move forward. I recommend reading Ending Parkinson’s Disease: A Prescription for Action by Dr. Ray Dorsey.
The next step is to find a competent neurologist to manage the disease going forward. There are plenty of qualified neurologists who follow the standard of care practices, i.e., usually prescribing a combination of levodopa, dopamine agonists, MAOI inhibitors, and other drugs that enhance dopamine in the substantia nigra. Apart from the standard of care, PwP must be informed of available alternative/complementary care and practices. For this, I recommend reading the book Ecological Therapy for Parkinson’s Disease: Medication, late and Little (February 2023) by Dr. Rafael Gonzalez Maldonado. My sister had an online consultation with Dr. Maldonado, who is open-minded and combines standard of care and complementary practices.
Having a community for support and the exchange of information is also important and helpful. For this, I recommend https://healthunlocked.com/cure-parkinsons
What would be your first suggestion to a newly diagnosed PD patient?
The first suggestion for a newly diagnosed PD patient is to start an exercise program. Exercise is the only intervention that has been shown clinically to help improve PD symptoms and possibly modify disease progression with none of the side effects of PD medications. See a few select (but by no means exhaustive) studies below:
Effect of High-Intensity Treadmill Exercise on Motor Symptoms in Patients With De Novo Parkinson Disease A Phase 2 Randomized Clinical Trial
Forced, Not Voluntary, Exercise Improves, Motor Function in Parkinson’s Disease Patients
Dynamic high-cadence cycling improves motor symptoms in Parkinson’s disease
Equally important for a newly diagnosed PD patient is to be educated about levodopa which his/her neurologist will most likely prescribe. PD patients need to be fully informed that levodopa and other dopamine-enhancing medications are for managing symptoms. Therefore when to start levodopa should be based on how existing symptoms affect the patient’s ability to function daily. See below:
https://parkinsonsnewstoday.com/2019/01/29/levodopa-shows-no-disease-modifying-effect-in-parkinsons/
https://www.nejm.org/doi/pdf/10.1056/NEJMoa033447
https://evidence.nihr.ac.uk/alert/when-is-it-best-to-start-the-parkinsons-drug-levodopa/
