Your Story Matters

Parkinson’s disease is a bit ambiguous. While scientists know problems of Parkinson’s disease quite well, there is little information about what causes it. Yes, it is known that it is neurological damage causing motor and cognitive dysfunction, but as to the why factor, it remains a mystery. Those who have been diagnosed with Parkinson’s sometimes feel that their struggles are not important. Why should you share your experiences if there does not seem to be a reason for doing so? The answer is that your story matters. Here are a few reasons why you should share your experience with others.

The medical side of things

Science and medicine are based upon hypothesis and data. For knowledge to increase, however, there has to be interest in research. One can see how this works within medical science. Consider Autism research over the last decade and how much we have learned, or ADHD. When looking back at what we knew in the 80s and what we now know today, it is rather awe inspiring how fast we are better understanding neurological issues. This drive for research is often correlated with the loudest voices. When it comes to the Parkinson’s story, Michael J. Fox is perhaps the most well known speaker and advocate for research. Interestingly, one of his passions is constantly encouraging others to tell their story and to increase awareness. By sharing your story, you increase attention to your particular case study, which could spark an area of research that has not been previously explored.

Encouragement for others

There are over a million people who suffer from Parkinson’s disease globally. Research in the UK has estimated that this number will rise 28% by 2020. You are not alone. There are others which have similar struggles and difficulties. It is important that people with Parkinson’s share their experiences with other people who have the disease. By sharing these struggles, trials, and triumphs, you give hope to those who are in different stages and different walks.

Additionally, for those who are newly diagnosed and have fears and concerns about certain things that you have been through, you provide a means of information as well as encouragement.

Apart from the PD community, sharing your stories with others without Parkinson’s is a way to encourage others to seek a cure. Young minds of today need to have a reason to peruse a dream, goal, or career. If you can add a face to the cause it goes a long way to motivate a person to act.

Reality for others

Though there is an abundance of information on the various symptoms of PD, many people still remain in the dark about the disease. Sharing your story gives the general population something that makes PD easier to understand, though you may not fully understand it yourself. It enables others to personify the disease, see the effects of Parkinson’s, and get a reality check for any misconceptions or generalizations that they may have about the disease.

Support and relief for yourself

At the end of the day it is you who will need the most encouragement. Sure, you can be an inspiration to others, but you will need to tell your story. There is something therapeutic about showing yourself to be vulnerable. It is not that you are seeking pity, looking for a favor, or anything along those lines. It is more about you letting go of holding in the frustrations, speaking out your fears and concerns, and reminding yourself that there have been successes and triumphs in your life.

Many times people, not just those who have Parkinson’s, have a tendency to focus on the negative aspects of their lives. It is quite easy to fall victim to being a victim. When we share our story with others we move away from being the victim of circumstance into being the narrator of how we wish others to see us. Consider these two quotes.

The first is from Aldous Huxley who states “Experience is not what happens to you; it is what you do with what happens.”

The second quote is from Richard Bach who states “What the caterpillar calls the end of the world, the master calls a butterfly.”

If you have a story about Parkinson’s that you would like to share with the world, send the story and relevant pictures to We Have Parkinson’s at 




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August 11, 2019 Parkinson's Blog ,
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