Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Your help will make the difference


Halfway through Parkinson’s awareness month, it occurs to me that we are doing the same things we’ve always done and expecting different outcomes. This is as effective as banging our heads against the wall. It is time to wake people up, to deliver our message beyond the PD community, and to involve everyone in our cause. These are my thoughts…

We are the faces of Parkinson’s disease. We are not strangers. We are your husbands and wives, your adult daughters and sons, your fathers and mothers, your grandmothers and grandfathers, and your friends and neighbors.

We know a secret that you don’t: We are all “temporarily healthy,” until a doctor tells us we are not. Without a cure, many of you will one day look in the mirror and see our faces looking back at you.

Finding a cure must be a priority for all of us. We can’t sit back and expect celebrities with PD to buy us a cure. Nor is it enough for only a small percentage of people to participate in clinical trials. Nothing in life is free. We each must bear some responsibility for bringing about the cure. Polio was defeated by ordinary people who donated their spare change over the course of 17 years. We’ve already been fighting PD in earnest for three times as long.

What will you commit to do this week to further the cause? I challenge each of us, myself included, to do something a little novel, let us know your plan, and report on your results. What works in one area can be expanded to others. Think BIG!

2 comments on “Your help will make the difference

  1. 100wickedwords
    April 14, 2014

    May the power of your words resonate loudly throughout the land!

  2. Claudia Revilla
    April 14, 2014

    You have said it: “Nor is it enough for a small percentage of people to participate in clinical trials”. The many options and possibilities that research can bring will never become a reality if that small percentage of people participating in clinical trials does not increase. Let’s suppose we put together billions of dollars for research and development: Still we will not have the cure if there are no volunteers needed to step in and try those options. It is like a bottleneck, where we reach a point where we follow every step in the rules, but when we get to the testing, no one or very few volunteer. It is a long and winding road ahead of us, and we will never reach our destination without getting directly involved.

    It is very easy to get discouraged and to think that nothing is getting done, that pharma should step in, that the government should step in, that the many PD foundations step in, but in reality, if the patient does not step in – that’s when nothing will be accomplished. It is hard but true because the brain is the ultimate frontier, we were able to take the man to the moon, but the brain surprises us every day with its secrets.

    We need to understand the process of the cures and educate ourselves as much as we can to see that the clue is right there, in each of us.

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This entry was posted on April 14, 2014 by in Advocacy, Family Life, Friends, Politics of PD.

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