Darryn Wright on Advocacy

An interview with Darryn Wright on Advocacy on September 27, 2023 by George Ackerman, Ph.D, J.D.

This is one of Darryn’s favorite memes!


Please tell me a little about your background.


I started having a slight tremor in my right foot when driving home after work at the age of 43. I thought nothing of them as I could move my foot and get them to stop easily. Not too long after that the tremor began showing up in my right hand, mostly in the evenings and at bedtime. Again, I could move my hand and arm and stop them. One night while watching TV with my wife, we were holding hands, she noticed my hand tremoring. She asked if I was shaking on purpose, I told her no and proceeded to tell her how long everything had been going on. She is a nurse, so she told me that she is getting me an appointment tomorrow with my doctor. The next day I went and saw my primary care doctor and after a short exam, he referred me to a Neurologist. I went and saw that Neurologist and after multiple tests (MRI and DAT Scan) she diagnosed me with Young Onset Parkinson’s on April 22, 2015, at 44 years of age.


At that point I was more relieved than upset because I finally had a confirmed diagnosis of what was wrong with me and I immediately started taking Carbidopa/Levodopa to control my symptoms so I could continue working. Long story short, after about 4 years the medications were wearing off quickly or not working at all and on March 3, 2019, I had DBS Surgery and my MDS (Movement Disorder Specialist) fired it up a month later and I finally had my life back!


Can you tell me more about your advocacy?


The biggest motivation for me to get into advocacy was as I was going through the diagnosis process and doing tons of online research, I was shocked at how little the general public knows about Parkinson’s Disease and was also surprised that Parkinson’s disease was getting so little funding from the government in comparison to diabetes research, various cancer research and so on. What really bothered me the most was the lack of knowledge about Parkinson’s Disease among the general public and in the Parkinson’s community as well!


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


With that lack of knowledge out there regarding Parkinson’s Disease, that really fired me up and inspired me to be a voice and even an educator on Parkinson’s disease. I started to get involved in a local support group and eventually me and my wife led the meetings for the support group for a year. At that time, I thought, how else can I get the work out about what I have learned so I started a blog called Punk Rock Parkinson’s back in 2017.


I will be honest in that I am pessimistic about seeing a cure in my lifetime, but I have no doubt that one day there will be one. We are barely finding out what and where Parkinson’s disease may begin. I feel that research is so far behind and still so underfunded that it will take time to find out the “why”, but when that day comes, there will be major breakthroughs that will change people’s lives.


What type of goals do individuals with Parkinson’s have when working with you?


My biggest goal for anyone living with Parkinson’s Disease is to educate them and help them understand that they must educate themselves on the disease and all the treatment options. They must be diligent about staying up to speed on all the latest drugs that may be on the horizon and also to be bold and share everything with their Neurologist or Movement Disorder Specialist. Doctors cannot help us if we aren’t 100% honest and open with them. My other main goal is to tell people fighting this disease that they need to do all they can to get into see a Movement Disorder Specialist, rather than a standard Neurologist. I recently learned that in the United States, only 10% of Parkinson’s patients see a Movement Disorder Specialist. In other developed countries, that percentage is much higher. That is something that needs to change. I know my standard of care changed for the positive, in a big way, once I started seeing a Movement Disorder Specialist.


What type of training and how long are the programs?


I really don’t have any type of training or programs for people with Parkinson’s.


What effect can your advocacy have on an individual with Parkinson’s?


My hope is that I can educate people within the Parkinson’s community as well as those outside of the community. I want people to have more passion and fight and knowledge in them about Parkinson’s disease. Those of us living with Parkinson’s disease need to feel empowered and the only way that empowerment comes is through knowledge about Parkinson’s disease.


What would you like to see as a future goal for your advocacy?


In the future, I would love to have more speaking engagements with groups. I also would love to see my blog grow and gain more subscriptions so that people can get notifications when I make a new blog post. I also plan on getting my YouTube channel going again and hope to also start doing some videos for TikTok. I am still educating myself on the TikTok platform and how to use it effectively so that is a bit down the road.


What events do you participate in?


As I am growing my platforms, I have not had the opportunity to participate in many events yet. Most recently I did fly up to Plano Texas and do a session with Abbott (the manufacturer of my DBS System) and the FDA and we did a question-and-answer session that I feel went very well and I got some positive feedback from. I have done some other things of that nature for Abbott and I also participate in Abbotts Patient Ambassador Program where people who are considering DBS (Deep Brain Stimulation) Surgery can reach out to Abbott and they pass their phone numbers on to Ambassadors and we reach out and talk about our experiences with DBS Surgery and life before and after surgery as well. I absolutely love being a part of that program.


I do hope to participate in some larger Parkinson’s conferences in the future.


How does your advocacy also assist the caregivers?


I am brutally honest in my blog. It is me, on “paper”. I know that caregivers read my blog as well. When they read it, my hope is they gain some more insight into what all we as People with Parkinson’s disease go through daily. Not just the physical symptoms we deal with but also the mental battles we fight every day. I know some people with Parkinson’s disease that try to hide symptoms or depression and feelings from their caregiver because they don’t want them to get down about the disease themselves. I completely understand this sentiment, but our caregivers/spouses/significant others are like our doctors in that they can’t help us either if we don’t honestly share with them all that we are dealing with.


I also want to have my wife write a guest spot blog entry on my site from the perspective of a caregiver. I hope to have her on my YouTube Channel in the future to maybe to a Q & A session as a caregiver.


How can someone get in touch?  What is your website?


I do not have a formal email address for my blog, however people can send me messages there and I think my regular email address is on the blog site as well. Of course, people can also message me through Facebook as well.


My blog can be found here:


My YouTube channel can be found here:


I will be getting a TikTok channel going sometime in the next few months.



How can others also become advocates for awareness?


I think it’s something you must really want to do. However, if that isn’t your thing, you can still spread awareness by sharing people’s blog posts and memes and any other on-line format that you may read regularly. It is okay to not want to be at the forefront of advocacy. Giving support to those that are out in front is just as important. The positive messages I get mean the world to me and encourage me to keep on going!


 How can we better fundraise to support a cure for Parkinson’s?

This is a tough one. Most people with Parkinson’s disease are already stretched financially with the cost of medications and treatments, along with therapy classes, it can be very difficult for those of us with Parkinson’s to give money. However, we can participate in fundraisers. Donate items to auction off. If you have a particular craft and can sell that work, maybe take 10% of your profits and donate and then try to get other people to match your donations. Donating your time is very valuable. Every little bit helps and there are several great organizations to give to such as the Michael J. Fox Foundation or the Davis Phinney Foundation among others. Don’t forget about the local support groups as well.


In your opinion what is the key to effective advocacy? 


 Being real, being open and honest. Not holding back anything. I always tell people; I am an open book. Ask me about anything and I will do my best to answer you. I have been asked if there were any topics I would rather not discuss, my answer is ALWAYS a firm “No”. The other key is to do your research. If I decide I am going to approach a subject or write about a new drug trial on my blog, I dig in. I try to gather as much information as possible and try to understand the subject I am writing about. I try not to speculate. I might give my opinion on what I may think about the subject, but I never try misrepresenting a topic and I just share what I have learned.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


My motto is “Live your best life NOW!” Carpe diem – Seize the Day!