April Is Parkinson’s Awareness Month!

Parkinson’s Disease Puts Your Life In Perspective

Red Tulip for PD Awareness monthThis month is Parkinson’s Awareness Month!

I will not tell you that having Parkinson’s Disease (PD) is a walk in the park. This disease can dictate your life and clutter your schedule every which way. I have seen it take its’ toll on many a marriage and family. I have also seen PD bring people together and strengthen family bonds.

How you and your friends and family deal with your diagnosis of PD will play a large part in how you deal with this illness. Some friends are going to be your rock and will be there when you need them the most. Sadly, you may see some friends crumble and possibly distance themselves from you. This is the unfortunate reality that some friends can’t go beyond a certain limit of friendship. I think some close friends don’t want to watch you go downhill, an unfortunate but realistic problem. It is my belief that sometimes friends are more unable to cope with PD than the patient. Some people just cannot accept bad news.

Your true friends and family will shine. You’ll have no trouble identifying who is going to stand by you and who will jump ship. You may get a few surprises along the way.  It is my belief that my true friends accept me whether I am healthy or ill, and if they don’t accept me for the state that I am in, then that’s the way it is.

Receiving a diagnosis of Parkinson’s Disease will make you stop and consider your future. It’s a sobering reality to get a grip on. Now is a good time to evaluate what it is you want to accomplish within the next 20 to 50 years of your life. The questions are important and probably obvious, but here are just a few:

  • How am I going to continue to work?
  • Do I tell my employer?
  • What do I do now?
  • How do I tell my spouse, child, relative, friend?
  • What do I do next?
  • Do I begin medicines or wait?
  • Do I need a Neurologist even if I have a fine primary physician?
  • If Parkinson’s is chronic and progressive is there anything that I can I do?

These are just some of the many questions that arise when someone is newly diagnosed, especially for the early onset Parkinson’s patient. I was diagnosed at 23 but saw symptoms as early as age 17. Now at 43 years old, I can’t control the disease but I can accommodate for it and plan around it.

At some point, if your PD progresses, there may come a time when an activity or function that you really enjoy is no longer possible. As disappointing as this may sound, keep in mind that you may just have to make adjustments and substitutions. Keeping active in both mind and body can go a long way to slowing the progression of Parkinson’s Disease. I believe that it is possible that if you take control of your health, early, you can keep PD in check.

It is important to know that there are resources and loads of valuable organizations that can help you answer your questions. There is an amazing network of Parkinson’s patients across the United States and the world. Many of us have been where you’ve been. While PD can be and often is a very individualized illness, sometimes sharing stories and information proves that many of us share a common situation. It is vital to understand that you are not alone with this illness.

I believe a support group is meant for empowering the attendees with information, options, and an to provide an understanding that the Parkinson’s community is just that, a community.  As a unified unit our community can rally for better drugs, new therapies, better dissemination of information, and with hope, a way to stop, and end Parkinson’s Disease completely.

Below is a brief list of some helpful resources to get you involved:

I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-one, he is a Parkinson’s disease advocate, an entrepreneur, an inventor, an author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and care partner, Angela Robb. He has blogged for ten years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net and is a contributor to PatientsLikeMe.com. His blog, ASoftVoice.com, has been recognized four years in a row by Healthline.com as one of The Best Parkinson’s Blogs of 2018, 2017, 2016, and 2015! Healthline.com also listed the book A Soft Voice in a Noisy World in their list of Best Parkinson’s Disease Books of 2017! FeedSpot.com has recognized ASoftVoice.com for 2018 and 2017 as a Top 50 Parkinson’s Disease blog. Karl was a blogger for the 2016 World Parkinson Congress in Portland, Oregon. He is a frequent speaker on Parkinson’s disease issues as well as an experienced advocate for Parkinson’s issues throughout the United States. He is also an advisor and consultant on Parkinson’s disease. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network based in Virginia. He was an active board member (6 years) and an advocate (18 years) with the Parkinson’s Action Network (PAN). In his free time, he is a photographer, constant writer, longtime magician, and a practicing Reiki Jin Kei Do master. Karl received a Bachelor of Arts degree in English from the University of North Carolina at Chapel Hill. He has been featured by The New York Post, BBC Radio, CBS News, National Public Broadcasting (NPR), in The New Republic magazine and NHK World Television, as well as several Washington, D.C., television stations. You may reach Karl via email at asoftvoice@gmail.com, on Facebook, or contact him via Twitter @asoftvoicepd. I’m available for speaking engagements to share my experience living with Parkinson’s disease. Please contact me at asoftvoice@gmail.com if you are interested in having me speak to your group, conference/symposium, or would like me to write an article for your newsletter or blog. I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

Posted on April 15, 2010, in Education & Support, Health, Parkinson's Disease and tagged , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Karl, your words have a way of reaching into the heart and quickening the rate at which it beats. Parkinson’s will indeed change everything and everyone around you. In order to live successfully with this progressive illness, we must adapt and overcome many things. You are not afraid to ask the really tough questions that challenge us all, but you also do not fear the many different answers that will inevitably will follow. I look forward with great anticipation for more posts and will surely be a willing participant in the subsequent replies.

    Michael
    Naples, FL

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