World Movement Disorder Day : A Decree to Help Improve Lives of People Living with PD -By Maria De Leon

Coming together is a beginning, staying together is progress, and working together is success.” Henry Ford

Today was a landmark day (November 29, 2022), first ever recognition and celebration on a World wide scale of neurology experts in the field of movement disorders to be known hence forth as “World Movement Disorder Day.This is a huge accomplishment and source of great pride both as a neurologist/movement disorder specialist as well as a patient living with a chronic progressive neurodegenerative disorder that is rapidly becoming the fastest growing movement disorder and second only neurologically to dementia/Alzheimer’s.

Global disability and death due to Parkinson’s Disease (PD) are increasing at an unprecedented rate faster than any other neurological disease. It is estimated that the total economic burden is over $51 billion a year which is an enormous amount and is expected to increase as more people develop Parkinson’s disease and are unable to work forcing them to go on disability or retire early.

Finally, this seemingly forgotten field of medicine is getting some much overdue attention for the struggles of the scientists, clinicians and most of all the people living with things like Huntington’s, Essential Tremors, Parkinson’s Disease, Gil de la Touret’s (tics), Tardive dyskenesias, Dystonia, Myoclonus to name some of the most frequently treated diseases. Great advances have occurred in the treatment of the majority of these conditions over the last 30 years. Yet, despite the attention, new medications, and increase in number in neurologists trained as movement disorder specialist we still face many challenges and hurdles; but as I say this my heart swells at the work that people like Lauren Ruiz and Greg Smiley at Adira Foundation for putting a face to all the neurodegenerative disorders many of which fall under movement disorders as to the M J Fox Foundation for funding to many research projects including the PPMI study. also to the pharma companies that I had a pleasure of working with through the years who are thoroughly invested in learning about PD, meeting and collaborating with patients and caregivers along side clinicians and scientists to help expand the circle of knowledge and target specific laws and salient issues not previously thought of in the care of PD or other movement disorders. I especially applaud Bial Pharmaceutical for bringing the voice of patients, clinicians and researchers all under one room to improve the care at the recent Bial PD Summit held in Lisbon in Nov 2022. Of course can’t leave behind the work that Dr. Ray Dorsey, M. Okun and B. Bloem are championing in the “Ending Parkinson’s” campaign to eliminate environmental factors which can contribute or produce neurodegenerative disease such as PD. As well as the WHO proclaiming PD to be a crisis and a pandemic.

These are but a few of the recent collaborations which have made me proud to be a Movement disorder specialist but also gave me hope for the future as a person living with PD and having family members with both PD and Essential tremors as well as dystonia. so my fight is not close to ending any time soon. However, I do want to admonish all the hundreds of thousands working on solving some aspect of these diseases to 1) think of the patient first – what do they truly need and want ? for starters to make the gold standard treatment for Parkinson’s- Levodopa available to all nations around the world. It is inexcusable to have it available in only 37 countries out of 110 60 years after its inception. If we can do it for AIDS, we can do it for PD. This of course is the bare minimum we should be doing. 2) consider how long it takes patient to come to see you -includes transportation to doctor’s office but also time between appointments. As disease progresses one often requires more visits more issues arise and harder it is to go into doctors office for a multitude of reasons . Thus we need to press government to pay for telehealth even across state lines. 3) doctors need to start making use of social workers as well as home health nurses to draw much needed test when patient’s unable to go physically to get blood work done. 4) finally we need to press government to allow for medication coverage as prescribed by physicians. These also must not only be easily accessible without having to go broke our of country or loose your wits to obtain but also reasonably affordable – not 2,000 for a month supply of azilect without which I cannot drive.

I firmly believe if we put our minds together to fix these four barriers to good sound living and treatment for PD we might begin to see a wave of hope around the country and world but also decrease the economic burden to families and society.

so lets do our part and continue moving forward to end PD #Movedisorders

copyright 2022

All RIGHTS RESERVED Maria L. De Leon MD (Parkinson’s Diva)

the National Plan to End Parkinson’s Act has been introduced in the U.S. House of Representatives

https://www.michaeljfox.org/advocacy-campaign/urge-congress-support-national-plan-end-parkinsons

Email Your Member to Support the National Plan to End Parkinson’s

Representatives Paul Tonko (D-NY) and Gus Bilirakis (R-FL) have introduced legislation in the House to create a national plan to end Parkinson’s disease.

The National Plan to End Parkinson’s Act (H.R. 8585) will, for the first time, unite the federal government in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and reduce government spending over time.  

This is the first legislation of its kind and has monumental potential for accelerating a cure and caring for those living with the disease and their families.

Urge your Representative to support the bipartisan legislation and join as a co-sponsor of the bill today! 

Please note only advocates with a U.S. address are eligible to participate in this campaign at this time.

Click here to send a pre-written email to your Representative to ask for their support of this bill

%d bloggers like this: