A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER been diagnosed and not had medical or neurological attention.
The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination. They become isolated which worsens their disability and increases immobility.
Parkinson’s disease has no CURE.
Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.
We must explain that PD is not a curse, your fault or something to be ashamed of.
We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.
We need help!
I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:
– to be understood,
– to stop isolation,
– and to get treatment!
Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles, the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.
I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments. All this without marketing, imagine what we could do if we had a marketing budget.
Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021 but they need to be edited and marketed for maximum exposure.
I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…
Watch the first story which happens to be in English and catch a bit of the essence of this project.
I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.
I dream not for myself but for those who message me in pain in the middle of the night, Sara has no neurologist, no exercise coach, she can’t sleep because of the pain.
For Sara and many more… For Club Dopamine! May this project get the funding or passionate philanthropist it needs.
Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.