Living Well with Parkinson’s: Building Your Network

A network? Really? I’m just about managing to hold myself together, never mind build a network. This is what I would have said to anyone who asked me about this topic 9 years ago. I was newly diagnosed, aged 38, had 2 young kids and my own business to run. I had just about got through the difficult task of telling people close to me that I had Parkinson’s disease. There was no way I was ready to share it with the rest of the world, never mind engage in networking.

When I was invited to speak on this topic at the WPC Virtual Conference this year, I realized how far I had come. I attended my first World Parkinson Congress in 2016 in Portland. From that moment, I knew that not only did I need to network for myself, but that I wanted to actively create and shape a wider network. Today, this network has become the backbone of both my own support system, as well as giving me purpose in helping others and advancing knowledge on Parkinson’s disease worldwide.

As I outline in my talk at the virtual conference, it is important to take the time you need to build your network. Baby steps. Look around. See what appeals to you. Choose places to connect that resonate with you. Focus on your own needs first. Look for answers to your questions. That’s the glory of today’s interconnected world; there is a forum out there for almost everything. Parkinson’s is a snowflake disease – no two people have exactly the same experience. So what matters for me does not necessarily matter for the next person. I chose to focus on the topics of young onset Parkinson’s, parenting and Parkinson’s, and sport for Parkinson’s. For others, it might be topics like speech therapy, disability benefits, or dealing with relationships. (My fellow networker Rune Vethe speaks about maintaining relationships at the WPC Virtual Congress). A good network becomes a go to place for all the questions that arise in the course of your Parkinson’s journey. And believe me, there are a lot of questions!

So after building the network I needed, my next step was to take my networking from the personal to the public. In other words, first I focused on myself. Then I realised that I wanted to add my voice to the many voices already raised. I realised that my story could make a difference to others. So I started to expand my network and to contribute, not only to consume. By sharing my story, I hope to empower others and enable them to take control of their fates.

Last year was an incredibly momentous year in my Parkinson’s journey. A year where my network took centre stage. There were two reasons for this.

Firstly, I had successful deep brain stimulation surgery in May 2020. My Parkinson’s network was incredibly important to me at this time. I was able to ask questions about the surgery, questions that doctors couldn’t answer. What’s it like to have your skull drilled open? How much do you remember of the operation? Were you scared? I was able to gather information about which hospitals have a good reputation. I was able to read reports and talk to people about the time after the operation and what to expect. My network was invaluable.

Secondly, in October 2020, I was able to step away from my long-standing position as a proud board member of my company to concentrate on Parkinson’s advocacy. I know that I am extremely lucky to be in a position to do this, and hope that I can give something to the community by dedicating my working time to advocacy. I have strengthened my network further, and now speak on living with Parkinson’s frequently. I have met such wonderful people who have enriched my life. We are determined to take on big topics. Determined for example to find out, together with the project Women for Parkinsons, why hormones and PD is a topic hardly ever addressed by neurologists. Determined to grow the worldwide network of people dedicated to ending Parkinson’s disease –  the PD Avengers. Determined, like my fellow avenger Omotola Thomas, to improve the lives of people with Parkinson’s in Africa.

These are just some initiatives that have grown out of the powerful networks created in and around the World Parkinson Congress. I am proud to be part of many of these initiatives. And I’m excited to think what we can achieve when we truly network and dedicate ourselves to changing the Parkinson’s world.


Cathy Molohan, PhD is the Director of International Relations at Yuvedo Foundation. She attended as an Ambassador the World Parkinson Congress in Kyoto, 2019 and has lived with Parkinson's disease since 2011. She will be presenting Building your Parkinson’s network: Why and How? in May at the WPC Virtual Congress.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®