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With the advent of social media and the enormous impact it has on advocacy outreach efforts, we are fortunate to be able to reach people in all corners of the world. This has resulted in connections with people living with Parkinson’s Disease, networking with individuals and groups to share what we’ve done and offer our help in whichever way is needed.

Two most unfortunate situations arise from this great opportunity for outreach-

First, we in the U.S. are fortunate to have the available print resources that can shed some light on what PD is, how it affects us, and ways that we can help improve our quality of life. Unfortunately, there are still countless areas of the world where educational materials cannot be found in their native language. Sure, they can surf the web and find any number of sites but the issue is in finding quality materials. Interestingly enough, the support system through groups, activities, and fellowship is very strong. As one lady from Brazil stated, “many people in my area are misinformed about Parkinson’s Disease and we don’t have what is needed to help them learn.” I, for one, will be working on ways to resolve this issue. If you have any ideas and are willing to help, please feel free to contact me.

Second,and in my opinion, the most pressing need of all, are those people living with PD whom have no one to help them, no financial resources to be able to afford their physician’s fees and medications, and feeling shunned by society. These are the people with PD whom I worry the most about because they suffer in silence.

There are several non-negotiables when it comes to working on finding new therapies and eventually a cure. Awareness, education, quality research, federal research funding, clinical trial participation, involving the person with PD as part of the research process from beginning to end, and fundraising from the general public to donate to national organizations. This last one specifically is one that gets most people excited because of making a difference making direct contributions to finding a cure.

Believe me, I’m all for research and the promise that it holds for all of us living with PD. But those who suffer in silence continue keeping me up at night. Perhaps a paradigm shift is in order for all of us.

Let us continue raising funds for our favorite organizations and making a difference BUT let’s consider earmarking some of those funds to be used locally and working on outreach efforts to help the members of our “PD family” whom have to do without, due to job loss, loss of insurance, family support, and being shunned by the public because of what PD has done to them, and let’s face it, continues to do to them.

“There but for the grace of God, go I“.

As many of us in the PD community know so well, Parkinson’s Disease is the great equalizer. It does not discriminate based on race, national origin, sex, culture, socio-economic status or any other factor.

Let us contnue to help put an end to this disease, but at the same time, let us not forget those among us who need a little help to survive and are the ones who suffer in silence….

Please don’t hesitate to contact me if you can help with our advocacy efforts in any way.

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3 thoughts on “Suffering In Silence – On a Quest to Not Leave Anyone Behind

  1. PRAISE THE LORD THAT SOMEONE FINALLY SAID THIS IN AN OPEN FORUM. Please count me in, Israel. Knowledge is power. If people don’t know this problem exists how can they fix it. You may have just opened the flood gate! We must continue to spread the word. I don’t know about you, but over the years I can’t begin to tell you how many full botttle of PD meds I have thrown away because I couldn’t tolerate the meds after taking a couple of rounds. Not to mention the fact that most PWP (here in the US and Canada) live in a vacuum…not knowing the treatments and meds available today. I am starting here at home in Tennessee. But please know that I am thinking globally. Many thanks. Please let me know how I can help you.

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  2. Thank you for the follow on my blog. I agree with you in the fact of misinformation and lack of it in other languages. That’s why my husband, a PD patient, started a webpage in Puerto Rico only in spanish (www.parkinsonpr.com), so it could be reachable and at hand for this kind of public. It is also the reason will always do my blogs in English and Spanish. Thank you for being open about the troubles some PD patients have with the misinformation.

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