On Thursday, February 3rd at 7:45 PM the world lost a true Parkinson’s Warrior. My friend, Tommy Dubuque passed away. He was more than a Parkinson’s warrior to me. He was my friend first and foremost, he was also my Parkinson’s Disease Mentor. I also referred to him as my Parkinson’s Dad.
In April of 2015 when I was first diagnosed with Parkinson’s Disease, me and my wife weren’t exactly sure where to turn. In some of my research on certain Parkinson’s websites they recommend finding a local support group to get into. I Googled “Parkinson’s Support Group – New Braunfels Texas” and it pulled up Comal County Parkinson’s Support Group. I went to the website and of course there was a “contact us” button so naturally I clicked it. I sent an email stating my recent diagnosis and was looking for more information or help. I received an email back fairly quickly from a guy named Tommy. He let me know about the support group and when they meet etc. I thanked him for the reply and said I would think about it, or something along those lines. It took me a solid month to decide that I would attend. My biggest hesitation being I knew it was as group with mostly “older people” and I was actually quite fearful of going there and seeing these people who had Parkinson’s for a while and seeing my potential future staring back at me. Tommy didn’t give up on me, sending me an email reminding me of the upcoming meeting. I finally decided it was time to go as I knew we couldn’t go at this alone. I walked in that Saturday morning and one of the first people to greet us was Tommy and Peggy (his beautiful bride) as he ALWAYS referred to her as. Little did I know, that opportunity to meet Tommy would change my life in an incredibly amazing way.
As I have shared multiple times in this blog, my frustration with how little people know about Parkinson’s Disease, both those with the disease and those who don’t have the disease truly shocked me. I know Tommy shared that same frustration. That is why he started the Comal County Parkinson’s Support Group. He felt that need also, so he got after it! Go here to check out the website.
Over the next few months I got to know Tommy very well and we grew close. As I said, he quickly became my Parkinson’s mentor in a few ways. First and foremost was his advice. He told me out of the gate that it was imperative that I take my Parkinson’s meds at the same time everyday – ALWAYS. The second piece of advice he gave me was to remember that our doctors work for us. Be honest with them always and if I don’t like that doctor or don’t feel like they are truly listening to me, then fire them and move on to another one. Tommy was a no bullshit person. He always said it like it was but also had the biggest heart in the world and would give you the shirt off his back if he thought you needed it. The second way he was my Parkinson’s Mentor was helping teach me and guide me in speaking my voice for Parkinson’s Disease advocacy. He would tell me we can’t sit back and wait for someone else to do it or it won’t happen. We are the only ones that know what we are going through. We have to fight for ourselves.
Over the next few years I worked with Tommy and got heavily involved in not only helping with the Comal County Support Group Meetings but also become a board member with Lone Star Parkinson’s Society and had the honor of serving as President also. This was all accomplished solely because of Tommy and him sharing his passion and knowledge with me. Both of these things meant the world to Tommy. While he would say he was stepping aside to let people learn and run these organizations, he could never truly let go. I totally understand it. These two things were his passion, his baby. Other than his Wife, kids and grandkids, these organizations meant everything to him, including the people. He gave of himself more than one man should’ve had to. His passion really drove me to find my passion and that was advocating and education and spreading awareness for Parkinson’s Disease.
Tommy taught me to find my own voice as well. He taught me to reach out and not be afraid. He taught me to speak or write how I am feeling and be honest and open about Parkinson’s disease, because that is where people learn. That is what has the most impact. Tommy is the reason I started this blog. Tommy is the reason I do the work I do with Abbott to spread awareness about Deep Brain Stimulation (plus they are an amazing company that is a big part of why I have the life I have now). The people at Abbott don’t just sell a product, they truly care about the people they helping and I have seen that up close and personal so I know it’s true. Hell, Tommy inspired me to start talking to my MDS about getting DBS Surgery in the first place. Without him, I am not sure I would be where I am today.
Tommy was a Texas size giant in the world of Parkinson’s advocacy. I could easily write a 2 or 3 page blog just about all of his accomplishments in the world of Parkinson’s disease and thats just in the almost 7 years that I knew him. I would have to say though, his greatest accomplishment is bringing a community of people together with a shitty disease and making us all feel like family. The various Parkinson’s communities that I am a part of, whether it be on social media or support groups or whatever the case may be, are the best and most uplifting people in the world. If people were to ask me if I was able to be cured from Parkinson’s but I would not know any of the people I have met because of this disease, I would tell them No thank you without hesitation. This community of people are the best people that I have ever had in my life. Religious beliefs, political beliefs or whatever just don’t matter. What matters is we are all sharing in a fight with Parkinson’s Disease that we won’t win. At least not in my lifetime. If I am wrong about that, then I will never be so happy to be so wrong about something in my life. Tommy used to tell me he would not see a cure for Parkinson’s disease in his life time. I knew he was right when he would say that. It didn’t stop him from fighting this disease every day, right until the end. So because of him, I am determined to do the same. While I can’t devote myself full time to it at this stage in my life, I still have this voice, my blog. I will take every opportunity that Abbott gives me to promote their Deep Brain Stimulation system and all that it has to offer people. When the day comes when I can’t work anymore, I will just work harder fighting Parkinson’s disease, Advocating and Educating as much as I possibly can. Helping where I can and supporting when I can. While it hurts so much that he is gone, and this will take some time to process through, I can think of no better way to honor him than to keep on fighting. Keep on educating and advocating. Keep on living.
I tried desperately to get down to see him in time but he was moved to ICU before I could get to him and he wasn’t allowed visitors anymore. I was hoping he would get moved back to his regular room but he never made it back. I never got to see him again. I didn’t get a chance to tell him how much he meant to me. How much he helped me in my fight with Parkinson’s disease. How much I learned from him and how much he inspired me to be an advocate and fighter. How much he taught me on using my own voice. How much I appreciated that he accepted me for who I am. How much I really enjoyed the ride with him when helping with the support group and Lone Star Parkinson’s Society. How much he pissed me off sometimes because he really was a stubborn ass. I know he would have got a good laugh about that last one and then would have agreed. One of the last text conversations I had with him back on January 19th, he told me how much he hated doing nothing because of his difficulty breathing. I told him I was sorry and I know it’s hard to just sit around but it is okay to rest. He texted back, “Thanks, but truth be known, I kinda like Peggy fussing over me.” That’s the Tommy I know and love. I know he loved Peggy, or as he would say it “My beautiful bride”, with all he had. While I am typing this through the tears I am smiling at the same time because I can hear him saying those words in that text.
Those of us with Parkinson’s disease, we will pick up the torch that Tommy lit many years back and carry it on in one way or the other. I know I will do what I can to continue his legacy, his generosity and his passion for fighting this disease in whatever ways I can,
Tommy, I love you and will miss you. I will think of you everyday. Just please know, you are my Parkinson’s hero.
Peace and Love,
~ Heartbroken Darryn