Support Groups Are What You Make Them

There is no denying that Parkinson’s disease (PD) is an awful and debilitating illness that makes life much more challenging. Sometimes, whether we like to admit it or not, we need help. A support group can be an excellent way of receiving the help that you seek.

As someone who used to shun support groups, I decided that I would develop my own style of group. I wanted a group where patients and care-partners could come and feel empowered and educated. A support group should not leave you feeling helpless, alone, or without hope. Our group shares information about new developments in the world of PD as well as what is working and what isn’t working. Often, group members suggest  something to try or a tweak that maybe those seeking a suggestion hadn’t considered. In my mind, this is the model of the kind of support group that can really benefit both patient and care-partner.

Here are some suggestions to starting a support group that can empower your participants:

  • Educating others and giving alternatives provides an opportunity to change one’s situation for the better.
  • Maintaining a positive and hopeful spin on your meetings not only keeps the meetings upbeat but can make for a more united and cohesive group.
  • Sharing doctor information can be one of the best ways to find the right doctor or neurologist for you.
  • Sometimes, just going to a support group reminds you that you have more options than you thought.
  • A support group is what the members make it. Like any group, the members  keep the group alive and with care and gentle adjustment from group leaders to keep the meetings on track, a support group meeting can be a very healing and beneficial tool to contribute to your healing.

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 October 24, 2011, in Education & Support, Parkinson's Disease, support groups and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. i continue to love your blog, you get it absolutely right every time 🙂

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