An interview with Adam Locke on PD Advocacy through Social Media on August 4, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background. What was your journey and discovery when you were diagnosed?
February 2022 just after turning 40, I went to my local GP for what I thought was some sort of muscle Injury done through lifting weights in the gym causing my arm to tremor occasionally and feel stiff. Little did I know life was about to change. The Dr said we needed to get me in front of a Neurologist asap to get this investigated. I asked why a Neurologist? He said it was because of the tremor and I think I see some slight muscle issues. I’ll never forget the words “your big-ticket items are MS, motor neurons or Parkinson’s, but because of my age doubts it’s Parkinson’s!”
I left the appointment, went home to my fiancé who asked how it went, I said ohhh not good…not good at all. Going by his diagnosis, I have a very rough road ahead and possibly not long to live in the worst-case scenario!
I immediately booked a private consultation with a Neurologist as NHS wait would be couple yrs. The earliest appointment was at the end of July.
After making the appointment I did like most and went on a Google spree of the diseases he had mentioned and well basically wrote myself off and went downhill fast. I remember the next morning going to drop our 2-year-old off at Nursery with my partner. It was snowing, the image of watching them walk up the steps in the snow and me thinking I’ll not get too much longer to see moments like these. Sounds dramatic I know, but from the doctors’ comments and reading information online, I was convinced I was done for it.
What followed for the next few weeks was breaking down into tears at the slightest thing, usually playing with Freddie thinking I’m not going to get to see my boy grow up, or kicking a ball about in the park, and my Fiancé. My appointment came around, I was nervous leading up to it. I told the neurologist how I was scared, and I just wanted to live as long as possible. The neurologist gave me a full examination. Sat me down, and said right, I strongly disagree with its MS or motor neurons as you have lost no strength and you’re aware of the tremors. The worst-case scenario was we are looking at early stages of young onset Parkinson’s disease (YOPD). He said “so you better get used to the fact you’re not going anywhere for a long time” to which I said, oh you mean I can’t travel or go on holiday? He laughed and said no, “I mean you’re not dying, and you still have a long life ahead of you.” I remember feeling so relieved which is so strange after getting told you have an incurable disease.
The results of my MRI came back clear but was told by the neurologist I still believe we are looking at a Parkinson’s so ordered a DAT scan where they scan you brain to see if dopamine is missing and then an appointment with what they call a movement disorder specialist MDS. The DAT scan confirmed dopamine was missing in the brain confirming what they thought and the appointment with the MDS said yes this is Parkinson’s and here are some leaflets to read.
Can you tell me more about your Advocacy?
I went home and properly started to Google what is Parkinson’s. I was immediately greeted with images and articles of people doing badly and mostly a lot older. The words incurable disease progressively gets worse kept popping up too. I thought I’m in trouble here.
I thought but if people get this disease a lot younger, immediately thinking of Michael J Fox one of my heroes, then surely it affects us in a slightly different way. If we have longer to live with it? So, I was determined to find younger people living with the disease doing well and doing everything in their power to live a good fully healthy as possible life.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Through the power of social media, I was able to find some amazing people straight away who have offered me fantastic advice and support and said they are here if I need them. You know who you are and I’m truly thankful for you. I quickly realized there’s a lot of amazing YOPD warriors who kick ass, and all have each other’s back out there. It’s a strong community despite the obstacles that lie ahead. Positiveness is crucial for this!
This gave me hope. Yes, there were of course younger people also not doing so well, and I quickly realized too this disease affects everyone differently.
So, asking advice from people living with the disease and doing more research on the subject, I discovered as well as the medication, the best thing to help slow the progression is Exercise! Those that know me will straight away think well that’s great you already do this, and whilst true, the advice is you must train harder than you ever thought you could, and for longer and where possible every day as even missing couple days in a row can see symptoms sneak back.
But I’m determined to do all I can to help myself live as well as I can with this disease and have a chance to show Freddie no matter what life throws at you face it head on and do everything in your power that’s needed! Be a great dad to him and be a supporting loving partner to Debbie.
What effect can your advocacy have on an individual with Parkinson’s?
Motivation. I had stopped going the gym around Aug/Sept last year as I felt my tremor was showing and felt almost embarrassed. So quit any type of commercial gym a just purely trained at home behind closed doors. I’ve always had gym confidence, but I literally feel like I’ve forgotten everything I know about training and starting from scratch!
What would you like to see as a future goal?
Being involved more with awareness and sharing my stories to motivate others through social media.
What events do you participate in (for awareness)?
TikTok, Instagram and others social media sites. Discussions with others who were diagnosed with YOPD.
How can someone get in touch? What is your website?
adamjlocke35 @ Instagram and Parkthedear41 @ TicTok
How can others also become advocates for awareness?
Social media, reach out to others. I began posting to social media to one raise awareness and I really didn’t know how else to tell everyone.
People with Parkinson’s are the toughest group of people I’ve ever met. We all have each other’s back. I’ve met so many amazing people and although we are all living with this incurable (now) disease. Everyone stays upbeat and positive and fights daily so that they can be a good partner, mum, dad, brother, and sister etc.
I didn’t want to have Parkinson’s, but I’m glad to have met these wonderful people because of it. Together we fight side by side!
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I had the choice to keep this quiet and only let a select few know or speak up and speak out about this disease. I chose to be an advocate!