My Parkinson’s Hero……

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

Rebel WITH a Cause (Swearing ahead, You’ve been warned)

(Apologies for how this blog entry showed up. I typed it out in my normal format using paragraphs etc. but when I hit the publish button it placed it into one big paragraph.) I started this blog back on June 26th, 2017. I started writing this blog in the hopes that it would help someone, somehow, somewhere dealing with Parkinson’s disease to get through a day or at least read about someone fighting a similar battle and give them some hope. My other hope was to bring awareness to people not even remotely familiar with Parkinson’s disease other than the standard “oh, that’s the shaky disease” or “oh yeah, the guy from Back to the Future has that disease” response that is most common. My frustration with the awareness about this disease has not lessened over the years since my diagnosis. Frankly it’s gotten worse, to the point of anger. Angry that no one seems to give a fuck, other than the people this disease directly affects. Angry that science can’t seem to figure this disease out in the least. Angry that there is a new article every damn day of some promising new treatment or drug that will slow or stop progression but they have only tested it on mice and it will be 3 or 4 more years before they HOPE to get it to human trials only to never hear about that potential treatment ever again. Angry that they can only keep coming up with one drug after another to treat the side effects of the latest drug they just came out with to treat the other side effects of the other drugs. Angry that there has not been legalization of marijuana across the nation so that people don’t have to live in fear and have access to something NATURAL to help fight the symptoms of this disease (along with SO many diseases) without the side effects of multiple drugs. Angry that many states won’t even consider legalizing it on a “medicinal” level where it can be prescribed. Angry that Big Pharma owns all of our law makers so they won’t do the right thing, only the thing that lines their pockets. Angry that Big Pharma creates customers, not cures. I watch people with this disease fight like hell everyday to spread awareness, with multiple posts on Facebook, doing fundraisers, and walks and runs and bicycle races and countless other things to raise awareness and money to assist people with Parkinson’s by spending their own goddamn money to fund these things and it almost feels like an incredible waste of time and resources. I get asked on occasion, “Why the name, ‘Punk Rock Parkinson’s’?”. I stated in my first blog entry that I chose the title due to my love of Punk music. However, it’s so much more than that. Punk Rock is more than music, it’s an attitude, a way of life. Growing up, I was always the one that pushed the boundaries compared to my 2 brothers. The typical “middle child” as they say. I was a PK (preachers kid) and we all knew or know a PK. Typically they can be some of the biggest troublemakers. I won’t say I was a troublemaker, but I certainly pushed the religious boundaries that I was raised in and I have no doubt I pushed my dad to the brink of wanting to kick my ass more than once. As a matter of fact, I know I did. I latched on to the punk culture as much as I was “allowed” to and never looked back. I have always questioned the standards and norms of who I should be and why just because that was the expectation of society. I hated those restrictions and being forced into stereotypes just to please society or gain advancement in a job and so on. I have always felt my performance and results are what I should be judged on, not how I look. Obviously I have grown up – somewhat – depending on who you ask. While I still carry the attitude towards many things, I am getting too old physically to be too “punk rock”. My punk rock attitude and energy is focused solely toward my Parkinson’s disease. I am angry that I have this shitty disease. I am angry that I have no idea or reason why I got this disease. I am angry when someone has the nerve to say something as stupid as “God gave this disease to you for a reason”. As I have said before, DO NOT SAY THAT TO ME. If you actually believe that garbage then your “god” can take a flying leap. I am sorry if that is not nice to say but that is how I feel. I don’t believe in a god anyway and if there is one and this is the kind of shit that god does to people, then I have ZERO interest in following that god. This blog is me, it’s who I am now, “thanks” to this disease. This blog is my “fuck you” to Parkinson’s disease. It’s my anger in writing. Naturally I carried the name to my  YouTube Vlog (click on the word “Vlog” to get there). Admittedly, my Vlog (cool name for “video blog” I suppose) is WAY nicer than my Blog but I do respect that kids, grand kids and so on may be within earshot while people are watching the videos so I try to respect that. (I know, not very Punk Rock of me at all – LOL!) I do hope this blog truly helps someone, somehow. Even if it’s just reading the words that you want to say but can’t for whatever reason. I am honest here. This is me on “paper”. This is my story, my anger, my frustrations, my victories, my accomplishments, my gratefulness all wrapped up in these words. To summarize, here is a song by one of my favorite punk bands, Bad Religion  – Warning, this song (I do not own the rights to this song or video) is NOT SAFE FOR WORK or the ears of little children. This song summarizes exactly how I feel about Parkinson’s disease. So, please sit back and listen and enjoy what I would consider the theme song to this Blog – Punk Rock Parkinson’s. I am no longer a “Rebel without a cause”. ~ Darryn

Thief of Me

Today, 4/21/2022, I left work for the first time ever, all because of Parkinson’s disease. Yesterday was an incredibly stressful day at work. By 1 PM or so, my tremors were at full force in my right arm and I couldn’t hardly speak without either getting stuck on words or totally stuttering. My entire body was hurting and my brain felt like I was stuck in mud. Fortunately, I was able to turn my DBS up enough to get most of those symptoms to stop, except for the body soreness and stiffness. The only issue I had was I had to turn up my DBS System enough that I maxed myself out on my right side and had no more room to adjust. Usually that is okay and I can wait for my next appointment with my MDS so he can increase my range of adjustments. I thought I would be fine. By the time I got home yesterday, my right arm had started to tremor and the Parkinson’s medicine wasn’t doing much. I was having issues with my speech a bit as well. I went to bed that night with a tremor in my arm and eventually crashed out.

I figured, I would just let my MDS/Neurologist know that I needed to see them again to increase my settings. Well this morning started out better than expected, and while I have an extremely stressful job, today was possibly going to go the way yesterday did. Fortunately it did not and a big job we had going this morning that continued from yesterday went much smoother. However, by 10 AM I was feeling the tremor come back in my right arm. I immediately sent a message through to my MDS that I needed to get my DBS adjusted ASAP. I knew it was only going to get worse from there. As usual, Parkinson’s proved me right. I began having my usual stuttering and along with other issues. I knew I couldn’t adjust anything and it was only going to get worse from there. I knew I had to leave.

The biggest reason I decided I needed to go home (other than the fact I could hardly talk or type and walking was getting difficult) was I was embarrassed to have my employees see me like this. I just couldn’t do it. Some already had the day before and I hated it. The word that has been going through my head today is ‘dignity’. As I went to go look up the definition of that single word, I came across the definition for Human Dignity and it fit so much better with how I was and am still feeling. I found this definition on The Center for Bioethics & Human Dignity website: Human dignity is the recognition that human beings possess a special value intrinsic to their humanity and as such are worthy of respect simply because they are human beings.

Obviously I am a human being but I am a human being with a degenerative neurological disorder for which there is no cure. I really love that definition above but I also feel like Parkinson’s Disease is slowly stealing that from me. It is stealing that “special value intrinsic to MY humanity”. I have heard the saying a million times in my life, “Don’t let anyone take your dignity from you”. I firmly believe that part but when you change it to “Don’t let Parkinson’s Disease take your dignity from you”, it isn’t so simple anymore. I don’t “let” it. It does it on it;s own. I have little to no control over it. All I can do is hide it with medicine and a brain implant. Eventually those things won’t be able to hide it anymore. I hopefully will be much older then and won’t give a shit at that point. Right now, in my early 50’s I know it’s taking from me and that just hit really hard the last couple of days. I am able to increase my dosage of pills in the meantime but they sometimes work or only partially work or don’t do anything at all. Fortunately I was able to get an appointment with my MDS this Friday afternoon. I will survive until then although I know part of my day is just going to flat out suck. I am okay with that.

I am not looking for anyones sympathy or for you to feel sorry for me. As I am writing this I am pretty sure that tomorrow is my Parkieversary. I was diagnosed 7 years ago, April 22 2015. As we head toward the end of Parkinson’s Awareness month, I am exhausted. I am exhausted with living with it. I will always continue to speak out about Parkinson’s and the lack of awareness and frankly, the disregard that is shown toward this disease that is continuing to be on the rise yet receives little to no funding from government for research etc. as compared to so many other diseases. Frankly, it fucking pisses me off.

This disease is taking my human dignity, I am by no means giving it away. This disease is doing this to many of my close friends who I consider family as well as millions of people all over. This disease is the thief of me. It’s the thief of who I am and who I could have possibly been. Now I will never know. I am at peace with all of that. I live day by day now, in the moment. That’s how I have to live. Sure, Parkinson’s jumps up and kicks me square in the balls at times but I can’t do anything about it. I take the hit and then hit back however I can. Parkinson’s may be the thief of my, physically, but it will never be the definition of who I am and what I can be each and every day.

I am going to leave the definition of human dignity here at the end of this blog entry. I love it. This is how we should treat everyone, regardless of religion, sexual orientation, race, or disability.

Human dignity is the recognition that human beings possess a special value intrinsic to their humanity and as such are worthy of respect simply because they are human beings.

Peace and Love

~ Darryn

Here we go again…..

It’s April 1, 2022. Another start to Parkinson’s Awareness month. I have written fairly consistently about this every April since I started this blog. So, here I am again, doing the same thing again this year. Right now I am in a mode of fatigue about anything to do with Parkinson’s. I have said so much about it up to this point that I almost don’t even know what else I could say. I don’t know what else I can do to push this out there more than I already have. Regardless, I won’t stop. I can’t stop. Like I have said before, everyday is Parkinson’s Awareness for me. I would love if it just visited me every April. Wouldn’t that be pretty cool?

I see what it’s doing to me, especially every 2 or 3 months or so when I have to take out my DBS (Deep Brain Stimulation) controller and increase the stimulation on the right and left side of my body. Even with that amazing technology, I still deal with shit daily, that DBS will never help with. I have written about these things before but I will mention them again. After all it is Parkinson’s Awareness month. I deal with Parkinson’s medication induced neuropathy in my feet and up my ankles every day. It is painful and every step somewhat hurts as it feels like you are walking on pins and needles at times. I get to take pills (said with heavy sarcasm) that make it manageable but it never completely goes away. I have balance issues. Fortunately they aren’t so bad that I fall over. I can go to take a step sideways and my brain doesn’t connect with my feet in time and it can almost look like I am drunk for that first step or two. I can be talking and the words will run together, making me sound like I could be drunk. Fortunately this doesn’t happen too often but it is slowly getting worse and will continue to progress. I will be talking at times and suddenly can’t recall a word. It will just be gone, even if it is a few seconds, to me it feels like an eternity. It can be the simplest of words too. Part of that is probably due to age also but I am only on the verge of 52. 52 is the new 32, right? When I wake up in the morning, I am sore, stiff, and achy, from head to toe. Some of that is caused by Parkinson’s, part of it is age and I am overweight and out of shape. I know this but I am also fully aware of the toll that Parkinson’s is slowly taking on my body.

I don’t write this looking for sympathy but to once again bring awareness to a disease that is taking from so many. As Michael J. Fox wrote in his most recent book, it’s the gift that keeps on taking. There are things it is not taking from me, mostly because I won’t let it. I give all I have to my job. I enjoy every day I have with my amazing, wife, our kids, and 3 grandchildren. I enjoy getting on my wood lathe and enjoy turning bowls and making pens. That is my “me time”. I turn on my music and just get lost in that world and I don’t even think about Parkinson’s or stresses at work or much else. These things are something those of us with Parkinson’s and without should always be aware of. Enjoy life and make the most of it. I have a good life, a good life that I work hard for everyday.

With all that said, now that I have hopefully made you aware of other issues with Parkinson’s Disease, that I face, it’s time for me to turn the tables on you, my readers. I can post memes and blog posts all through this month of Parkinson’s awareness but now it’s your turn. Help those of us with Parkinson’s make others aware. You spread the word. You share the link to my blog. You find the info about Parkinson’s Disease and share it on Facebook and LinkedIn and Instagram and wherever else you think you can. You never know who you might be helping. You never know who you might be educating. Most importantly, it just feels good to do something for someone else.

So, here we go again with Parkinson’s Disease awareness month. Don’t worry, I will do my part and won’t stop. I am now asking you to do your part and help me spread the awareness. While I get to live this 12 months of every year for the rest of my life, I am asking you to just hit the share button. Yes, I hope I made you feel guilty with that last line – LOL!

As always, Peace and Love,

~ Darryn

Spread the word….

Back in August of last year I wrote a blog post about an opportunity I had to do an interview with Abbott for their internal Town Hall meeting that they do. As I understand it, they are normally done in person but due to COVID firing up again at the time, they held this one virtually. As I stated in the blog post linked above, I was asked to do an interview with my Abbott rep, Beth Erwin, for their town hall meetings. It was to be taped and then broadcast to the entire Abbott company which is spread damn near world wide.

I was very fortunate to be asked to do this, and to get to be interviewed by Beth made it better because of how much she means to me and my wife and being a part of my Parkinson’s journey in addition to being in the operating room during my Deep Brain Stimulation Surgery. As I have stated before, she is not just our Neuromodulation Rep, she is part of our family.

As I have gone on this journey with Abbott, I have found that every person I have interacted with at Abbott has treated me like I am part of the Abbott DBS family rather than just a patient or customer. I don’t say these things because I have to . I don’t get paid for the things I am lucky enough to do for Abbott to promote their Infinity DBS system. I say it because they have shown it to be so true. Not only have they become a part of my family, but I feel like I am a part of their family as well.

The Parkinson’s community is without a doubt one of the best communities I have ever been a part of. Even though I have this damn disease, I meant what I said when I said I wouldn’t trade Parkinson’s away if I also had to give up being a part of this community. Y’all mean the world to me. With what y’all mean to me I felt that I had to share this video with y’all because I wouldn’t be where I am without y’all. Whether I know you in person or on social media in support groups etc. I am one lucky dude to be sure.

Once you watch this video, please share it far and wide. We all have a responsibility to educate ourselves and others. This is a very visual video and I hope has a huge impact on people to see what DBS can do for them. I learned today that the average time frame that a person gets DBS is 12 years AFTER diagnosis. The MDS that was on this Virtual Seminar stated that time frame is too long. People are waiting too long. He stressed that the perfect time to start discussing DBS with your Movement Disorder Specialist is when your medication becomes inconsistent in its effectiveness. If you are starting to have more “Off” than “on” times, it’s time to talk to your MDS. Don’t wait. They can’t help you unless you are honest with them about what you are dealing with. I really liked what this MDS said today about being open and honest with your MDS. He said that when you have an appointment, pick one or two things that you have noticed you can’t do anymore because of the symptoms you are dealing with, but wish you still could, and bring those things up at your appointments. I think that is a great way of going about bringing things up to your MDS and possibly opening the door to discussing Deep Brain Stimulation surgery.

Okay, I will get off of my soapbox now. Click this link To my YouTube channel and watch the video. I hope you get something out of it and please do not hesitate to share this blog post as well as the link to the video. The more we share this info, the bigger impact it can have, along with educating ourselves and others about what options there are out there for us.

As always, Peace & Love – Darryn

The Wrong Direction

In the last 6 months or so, I have been fortunate enough to be able to do some DBS Awareness media type things for Abbott DBS (Deep Brain Simulation) technology. The most recent being this past weekend for their “Linked By Innovation” campaign they are getting ready to release. As we did the photo shoot and filming, of course we were talking about DBS and so many other things in regards to Parkinson’s Disease. One of the Abbott Employees who is Director of Public Affairs was here for the shooting/filming and mentioned that the amount of people with Parkinson’s disease who have DBS is just above 1%. Yet another remarkably low statistic in regards to Parkinson’s Disease.

Since being Diagnosed with Young Onset Parkinson’s Disease back in April of 2015 at the age of 44, I have always been incredibly frustrated with the lack of knowledge about PD. I have been frustrated with the lack of awareness about PD. Even with Foundations like The Michael J Fox Foundation and many others it doesn’t seem like we are gaining any ground on awareness and education. At times it feels like we are going the wrong direction. Then to find out that only 1% of PD Patients have DBS saddens me. Is it the lack of knowledge by Neurologists and Movement Disorder Specialists? I believe that to be true to a certain extent. I have heard some Neurologists refuse to see Medical Reps and that just blows my mind. How are they able to give the best care to their PD Patients if they lack the awareness and knowledge of new technology and medications to help, they are worthless to me. Is it lack of publicity and awareness by the various manufacturers of DBS technology? This is part of it also but is being worked on by them. Is it lack of awareness buy people with Parkinson’s Disease? I believe this to be the majority of the reason. This saddens me.

When I was diagnosed, I dove head first in to research. I did so much research about medications that when I was diagnosed, I knew immediately what I wanted to be on to hopefully help control my PD Symptoms. I continued to do research and educate myself. I joined a support group and got to know people that had been living with this for a few years to several years. I listed to various Drug and DBS Reps as they made presentations. I learned all I could so that as I live with this disease, I can make the best decisions possible for me. Reality is, we cannot just put our heads in the sand and “go along for the PD ride”. We do have some control over this. We have choices but we cannot make those choices without being educated first. We can’t tell our doctors what we want to do or try if we don’t know what we can do!

I am part of several Parkinson’s groups on Facebook. Some are for encouragement and a place to unload our frustrations, others are specific to DBS and others are specific to exercise, medications, education etc. What I have found on many of these is the absolute uneducated questions in some of these groups. People that are living with this disease yet seem to know nothing about it. If they are knew to PD, I get it. We can learn so much from each other. However, some questions are from people that have clearly lived with the disease or have DBS. I don’t mean to come across as insulting at all. I am more in shock. Often times these questions should be asked to their doctor or DBS rep. I read them and think, why are you asking this here? Why are you not talking to your doctor? Why are you not on-line doing research and educating yourself?

We have to take control of our disease in as much as we can in regards to increasing our knowledge on medications and therapies that are out there to help us so we can ask our doctors about these things. While they should be able to help guide you, please remember, you know yourself and your life with PD WAY more than your doctor does. One of the best pieces of advice I got when first diagnosed was that my doctor works for me, not the other way around. If your doctor is not meeting your expectations, look for another one. Get references from others in the PD Community and so on. That is what I did and now have one of the best MDS’s ever in my opinion. I love this doctor so much that even when moving to Dallas a couple of years ago, I asked my employer if I could keep seeing my PD Doctor in San Antonio. They obliged thankfully.

One thing that I decided on from damn near the beginning of my diagnosis is that I would do whatever I could to help promote awareness for Parkinson’s Disease. As I said earlier, I was just astonished at the lack of awareness in and outside of the community. I joined the board of a Parkinson’s Foundation and even served as President for a short time. I always did what I could to promote knowledge and awareness. That is why I started this blog. Since having DBS surgery almost 3 years ago, I have been given some amazing opportunities by Abbot to be part of their campaign to raise awareness about their DBS System and the amazing things they are doing with it! My first opportunity was to do an interview with my DBS Rep for their Town Hall which is an internal meeting that Abbott does within their entire company. I know I still owe all of you the video from that interview. As soon as I can figure out how to put it in this blog, I will post it. The second opportunity I had was to do what is a Satellite Media Tour with my MDS, Dr. Ramirez where we went to a television studio in San Antonio and did 18 short interviews, back to back to back, with various news outlets across the nation promoting DBS and Abbott’s Virtual Clinic technology. That was a very cool experience. I even had to go to ‘make up’ to get ready to be on air. Had an ear piece and the whole works. It was an amazing experience. I will also post some links to some of those interviews in an upcoming blog.

This past weekend was another awesome experience as the Abbott People and Media personnel as well as an awesome camera crew came to my house to do the filming and pictures. That’s about all I will give away at this point as it will be a bit before that is released. They still need to put everything together etc.

I don’t bring these things up to brag. I am beyond grateful for this opportunity. I truly feel it’s exactly what I am supposed to be doing and I will always jump on any and every opportunity to bring awareness and help educate people with Parkinson’s any chance I get. In a day and age where we have so much available to us at our fingertips, we MUST educate ourselves and others as much as we can. I get tired of feeling like those of us with Parkinson’s disease just don’t matter. I am tired of feeling like we have to fight for every bit acknowledgement in the medical research world and the public in general. Maybe there is progress that I am not aware of but when I hear only 1% of Parkinson’s people have DBS that could possibly have it, I feel we are going in the wrong direction,

~ Peace and Love – Darryn

Living my BEST life now….

Tomorrow, at 11 AM CST, I go under the knife to have my left knee replaced. This is the result of a long boarding accident 11 years ago. I was 40 when that happened and about 4 years before Parkinson’s decided to invade my brain. You may think that at 40 years old I had no business being on a longboard. I would disagree. I loved every minute of it and have no regrets about that October day when I destroyed my left knee. I was out riding with my middle son and having a blast. I was living life.

Since then, as stated above, Parkinson’s has come into my life, my brain, my body and so on. I have gotten to the point that I am okay with it. Nothing is going to change it. Nothing is going to stop it. So do I spend my days being pissed off and angry and always asking “Why me?”. No! It would be arrogant of me to think that. I mean, why not me? Am I so special that I actually think I don’t deserve this but everyone else that has Parkinson’s disease does? Not anymore. I watch an Atheist on YouTube named Dave Warnock. He was diagnosed with ALS about 3 years ago. As I was watching him tell his story, he said that very thing, “Why not me?”, and went on to say it is not fair for him to live thinking he is so much more special than those that have gotten ALS. That really woke me up and shook me out of that “Why me” phase. Of course he wishes that diagnosis didn’t happen just like I wish my getting Young Onset Parkinson’s disease had never happened but here it is. When I made the decision to have Deep Brain Stimulation Surgery at the age of 49 and 5 years after my diagnosis (which was much sooner than expected), part of my decision was me wanting to live my best life now. That is what I told my MDS/Neurologist and what I told my wife as well. From that day forward, that became my focus and my motto. Everything I do going forward and every decision I make is in regards to just that; I want to LIVE MY BEST LIFE NOW! A saying that Dave Warnock has is ‘Carpe the fucking Diem’, and I love that also! Seize the fucking Day!!!!! Every Day!

Since becoming an Atheist 4 or 5 years ago or so (that story is for another blog post or 2), I have been able to find my purpose in this life, I have also been able to learn to cherish each and every day as much as I can. To cherish the important people in my life that matter to me and I know I matter to them. There is not time to waste on toxic people or relationships that just take from you. Parkinson’s disease is the same way. It is most definitely toxic to me but I am stuck with it, so rather than focus on the bad, I have started choosing to Live My Best Life Now, each and every day, the best I can. Do I get pissed off and complain and sometimes focus on negative things and so on? Of course. We all do but then again, I have to shake myself and refocus and do what I can to give my all to what I have in this life. Family will always be first. I am fortunate enough to to still be able to work and so I always give all that I can to my job and the people that work for me. I fail at that to but I get to start again everyday. Pretty cool eh? I also know that my job isn’t everything. As the saying goes, Nobody says on their death bed that they wished they had worked more. I will not be that guy. Work should always only be a means for me to live my life and life outside of work will always mean more to me, especially when my future and outlook will be different than many of you because of Parkinson’s.

When I went to the surgeon, I didn’t really leave them many options in regards to replacing my knee. Typically, 51 is considered young to get knee replacement surgery, but as I explained to the surgeon, My 70 is going to look very different than the average person’s 70 years old. I told him straight up, I am walking around with a cane and in constant pain every day. I am tired of it. I want to Live my Best Life Now. He agreed and so I go under the knife tomorrow, December 15th 2021. While I am not thrilled about the recovery and so on, I do know it can’t be any worse than when I originally injured my leg and I know that with this surgery I am doing all I can to Live my Best Life Now.

The biggest impact…..

I recently had a great opportunity come my way toward the beginning if this month. I was asked by Abbott’s Neuromodulation Team and my awesome rep, Beth, to be a part of their Town Hall. Normally this town hall is done in person with all the Abbott reps attending but due to the unfortunate ramp up in COVID-19 cases here in Texas, it was determined The Town Hall would be done virtually. I assume these town halls are typically held to provide company updates and to discuss the latest and greatest in what is going on in their world of Deep Brain Stimulation (DBS). Naturally I jumped at the opportunity! I said yes and I wasn’t even sure what was going to take place. I was asked late on a Friday afternoon and was told to watch for an email. Of course I checked my email every 5 minutes, all through that weekend anxiously awaiting the details. I finally got the email that there would be a Zoom meeting to discuss the details.

A slight side note here, when I first had DBS I had agreed to be an ambassador for Abbott, which is to say, I would be willing to speak about my DBS, if asked to, or attend Lunch & Learns to speak about my experiences with DBS with other people that have Parkinson’s disease who are considering DBS surgery. I was not getting paid for this as that was part of the agreement, but I didn’t care, I just wanted the chance to help people with Parkinson’s Disease. The opportunities didn’t come too often, other than lunch and learns and I think my agreement to do this kind of got lost in the shuffle of Abbott changing people in that department that handled these things. Fast forward 7 months and we moved to Dallas, taking a promotion with my company to take over a Service Department up here and be the Service Manager. It’s a very demanding and stressful job and I was taking over a service department that was in pretty bad shape. I had to put 100% focus on the job. I had also moved away from my Parkinson’s community where I was also very active in helping wherever I could. I missed all of that so much and more so missed the people that I considered my family. My Parkinson’s activism had dwindled to nothing, other than writing in this blog, and even that has dwindled down. Which I hate. Anyway, I said all that to say this, I was beyond excited when I was asked to do this! It’s truly where my heart is.

Now, back to my original story. If I remember correctly, the Zoom meeting took place late on Monday afternoon. We discussed what was going to happen. Beth would be interviewing me about my Parkinson’s journey, in particular my DBS journey and the exciting addition of being able to do a telemedicine visit with my MDS who is down in San Antonio and how he can now access my DBS system via Bluetooth, through a secure network, to make adjustments if necessary. (Science still blows my mind when it comes to DBS and the capabilities my Abbott system has.) We discussed what would happen and they even provided a script to kind of go by also. I mentioned to them that I would be willing to turn my DBS off during the interview and they thought that would be a great idea also. After the call, I took the script and started making my notes. Me and Beth set up a call for Tuesday to kind of go over what we would talk about. I also received an email from another Beth at Abbott who set up my travel arrangements. They would fly me down to Austin on that Wednesday and have me taken to a hotel close to their headquarters. On that Thursday I would be picked up from the hotel, taken to their headquarters, do the interview and then have me driven to the airport. Let me just say that Abbott made me feel like a celebrity, from having a driver meet me at the airport with a placard with my name on it (never had that before), to putting me up in a beautiful hotel and then the kindness and hospitality shown to me at Abbott Headquarters in Austin, I was blown away by how they treated me. They made me feel really special.

The day of the interview, I arrived at their offices and the other Beth greeted me and took me upstairs to the area where the interview would take place. I later found out that the other Beth is the Administrative Assistant to Keith, the VP of Neuromodulation at Abbott. Beth S. helped me get onto their guest WiFi so I could print off my notes on my script as me and Beth E. were told there would be a teleprompter to help us out. Beth E. (my Abbott rep) showed up and then we met the production crew and I also met Brent T., Director of Public Affairs for Abbott. He then informed us that due area where we were to do the interview, there would be no room for teleprompters and ultimately they really didn’t want to use them as they wanted this to be more of a discussion rather than an interview. It would have a more natural feel to it. Now on the outside I acted like that was great, but inside, I had an ‘oh shit’ moment where I just knew I wouldn’t be able to remember anything and I was also afraid I would ramble on. Kind of like I’m doing with this blog entry. 😉

When it was our time, we went into the interview area and it was cool. There was a full blown camera crew in there. 2 or 3 cameras, monitors, a sound guy, lights and so on. A guy came up to me to mic me up with the tiniest microphone I had ever seen. In the video you can’t even see it unless you know it’s there. We took our spots on some stools and they proceeded to do some test shots etc. to make sure lighting and sound and so on we’re good. We chatted with who I assume was the Director and found out he had done work on House Hunters and Oprah!

We proceeded to do the interview and hit all the key talking points. Toward the end of the interview, I had the opportunity to turn my DBS off. That was difficult. Beth I. asked me another question and I began to tremor and so on. When I turned it back on and regained control of my mind and body, I realized that Beth was crying. We wrapped it up at that point. They took a few shots of my settings on the App and me turning it off and back on (quickly) and then we were done. I remember one camera man commenting “Wow, I have never seen that before.” as we were getting our mic’s taken off and so on. Everyone said it was great. I felt great about it also and was ultimately glad they didn’t have teleprompters as it was very natural and I don’t think I rambled too much.

We went out of the room and Abbott had brought in lunch for us and the film crew. I sat down with Beth E. and we were able to chat and also talk with some of the crew as they came out to eat or grab some food and go back in to set up for the next session of filming. One of the crew was sitting at the table where the food was and heard Beth make a comment about crying when I turned my DBS off and he stated “there wasn’t a dry eye in the room”.

When we originally discussed the interview and format and so on, I brought up,the fact that I would be willing to turn my DBS off at some point during the process. I told them that I could talk about DBS all day long and the impact it has had on my life but the biggest impact I could have on anyone is to show them what I am without DBS. While it is hard on my body to turn it off, it was worth it. In my opinion, so many Sales Reps that are in that field of Neuromodulation, don’t always get to see how they really do change lives, nor do the scientists and researchers and probably so many others within this particular field. I don’t know the total impact my interview had with the people at Abbott that saw the Town Hall interview, but I know this, the impact they made on my life is immense.

I do plan on putting the interview up when I have permission to do so. I have watched it a couple of times but it’s really hard for me to watch for two reasons. First, I hate the sound of my own voice. Second, it’s hard to watch when I turn my DBS off. I see my progression in the 2 years since I had DBS surgery and I know if I had left it off longer it would have gotten worse. I could feel it. The visual impact it had on me, I didn’t expect but I would continue to do that over and over again if the biggest impact is left on someone else.

Bummer man….

As I pass my “Parkiversary” of being diagnosed with Young Onset Parkinson’s Disease (honestly, I can’t remember if it’s now 6 or 7 years ago) I wanted to blog about something that has hit WAY too close to home lately; Depression and Parkinson’s Disease.

As we are in the final week of April, which is also Parkinson’s Awareness month, I wanted to write about something that isn’t talked about enough as another symptom of Parkinson’s Disease. Depression is not usually something people connect to Parkinson’s as far as a symptom of the disease. Of course it’s totally understandable to associate the two in regards to initially being diagnosed with a progressive neurological disease with no cure and none in sight. I won’t bore you with statistics, instead I will just share my story.

I have said this many times in this blog, I have a pretty good life right now and know how truly fortunate I really am at this stage in life, including with my Parkinson’s Disease and my DBS surgery etc. I won’t go into all of that again. I just have been battling something for the last several months but couldn’t put my finger on it. I have battled apathy in my journey with Parkinson’s, but that’s different than what else I have been dealing with. Apathy is defined as a lack of interest, enthusiasm, or concern and unfortunately is a big part of having PD. That’s something I can typically battle through and have several times. It is something you can push through. This time though, I haven’t been able to just push through. It’s been rough. Depression had crossed my mind but again, if you look at my life, I have a good life. Good job, amazing wife, all of our kids are doing well, 2 beautiful granddaughters, some incredible friends and a woodworking hobby I absolutely love. I am still in the place though that I can’t break through.

I recently had an experience that shook me to my core. I don’t feel comfortable giving full details but will say that while I was laying in bed recently, and dealing with a lot of physical pain, that thought came to me that I could do something and just end it. End my life. Everything came crashing down on me at once and it scared the shit out of me. I pressed it down for a few days, kept it to myself, but knew I needed to tell someone. I reached out to someone close to me and told them. My friend encouraged me to talk to my Neurologist and let him know and that I’m obviously dealing with depression. This person also encouraged me to tell my wife about what happened. I did that as well and have reached out to my Neurologist and am getting the help I need.

I don’t tell this story to scare anyone. I’m not going anywhere. I am fortunate in that I have an awesome support system in my life for not only this, but also for living with this disease. Yes, I said ‘living with this disease’ because that is exactly what I will do. I bring this up because so many people have no clue how big of a part depression plays in people who have Parkinson’s Disease. (I do realize depression plays a large part in many peoples lives and don’t mean to seem dismissive of that fact, but this is a Parkinson’s disease blog – mostly.) Many PWP’s (People with Parkinson’s) get apathy but it is not the same as depression. Depression works in conjunction with Parkinson’s due to lack of dopamine production, which also effects other chemicals in the brain such as serotonin among others, but we don’t want to talk about depression. Well, I am talking about it. I’m putting my story out there. I’m doing it for me and also doing it because it needs to be talked about and this issue, depression, is just one of many things that those of us with PD deal with on top of the disease but don’t get it treated. While it can be a part of having PD, it isn’t treatable with standard PD meds. I am hopeful that the meds my MDS (Movement Disorder Specialist) is talking about prescribing me will possibly improve things for me in the coming weeks.

I truly hope this blog post helps someone else gain the courage to talk to their doctor about depression, whether you have Parkinson’s Disease or not. Please don’t get to the place I was in very recently. Talk to your friend or your significant other and if that’s not an option, please reach out to someone! You can’t go at this alone. I know, I have been trying to do it myself for months. One of the hardest parts has been putting on a happy face and acting like everything is fine, yet not understanding why I have been feeling so down. That takes its toll on a person, then pile the other PD things I deal with on top of that and the weight has become more than I can carry.

Please, if you have Parkinson’s Disease and are feeling down and depressed or have also had thoughts of killing your self or even just wishing you would die, reach out to your neurologist, there is help. Talk to your friend or significant other as well. Don’t go at this alone or try to find your own way through it. It’s more than you think, it’s more than just a bummer man.

51 Years? WTF………

April is Parkinson’s Disease Awareness month, as you know by now. Let me take you on a little history lesson in regards to L-Dopa, the “gold standard” for Parkinson’s treatment, that hasn’t changed hardly at all in 51 years. Yes, you read it right. 51 goddamn years. It is still considered the “gold standard” treatment today.

The first clear medical description of Parkinson’s disease was written by James Parkinson in 1817, when he realized that the symptoms were different than multiple sclerosis. It wasn’t actually called Parkinson’s disease until 1872 when another researcher (Jean-Martin Charcot) suggested it. L-Dopa was not introduced as a possible drug to treat Parkinson’s disease until 1960! So, when Parkinson’s disease was first identified in 1817 there was a 143 year span where there basically was little to no treatment for this disease. In 1960 they discovered that L-Dopa, basically a synthetic dopamine, had the potential to help people with Parkinson’s disease. In 1961 L-Dopa was intravenously injected into people with this disease. Here was the result: ‘Bed-ridden patients who were unable to sit up, patients who could not stand up when seated, and patients who when standing could not start walking performed all these activities with ease after L-dopa [levodopa]. They walked around with normal associated movements and they could even run and jump. The voiceless, aphonic speech, blurred by pallilalia and unclear articulation, became forceful and clear as in a normal person.’ (Source here)

What an incredible moment that must have been to see these people that were bed ridden, suddenly be able to function and function quite well! I have no doubt tears were shed. Hell, I teared up a bit reading that for the first time a little bit ago.

It would be another 9 years until the FDA officially approved L-Dopa as a Parkinson’s Treatment in 1970. Ever since then, for 51 years now, it has been and still is the primary medication or “gold standard” treatment for Parkinson disease today. L-Dopa by itself did have to be combined with Carbidopa to assist in getting the synthetic dopamine past the blood-brain barrier to be truly effective for longer periods of time. L-Dopa has several variations with different results these days. They all can be very helpful but also come with side effects from long term use that can be equally annoying and disruptive as Parkinson’s disease itself, called dyskinesia. Dyskinesia is defined as abnormality or impairment of voluntary movements. When you see interviews with Michael J. Fox on TV, the movements he has are dyskinesia, a result of long term use of L-Dopa, or carbidopa/levodopa.

My main point of this writing is not to necessarily to give you a total history of PD and other side effects etc. My main point is there has been little to no movement in 51 fucking years! Sure there have been advancements and improvements to the medications. Even medical procedures like DBS Surgery (Deep Brain Stimulation Surgery). There are all these treatments and improvements to the treatments but no movement toward a cure. Parkinson’s disease is approximately 204 years old (since identified), it took another 153 years to even come up with a truly effective medication.

Parkinson’s disease is one of the fastest growing diseases in the United States and across the world. 60,000 people across America are diagnosed yearly, and the numbers are growing. I understand there are many diseases with no cure and we all know there is no money in a cure, as far as Big Pharma is concerned. But you would think that a disease that has been around for 200+ years, there would be more than 2 real significant treatments (L-Dopa and DBS) for this disease.

People with Parkinson’s, and I have no doubt other people living with chronic diseases, are told to learn to ‘live with the disease’. We get dangled the occasional carrot of a new drug or treatment that shows signs of promise of either stopping progression or maybe even a cure only to suddenly never hear about this new hope ever again. That seems to happen way too often for a disease that has had little to no major advancements in a long ass time. 51 years and counting?? How much longer? WTF???

I ‘wear’ a mask…….

As we roll into April, and Parkinson’s Disease Awareness Month, I just wanted to take this opportunity (kinda like I do every year) to share a little Parkinson’s disease info. Forgive me if I have talked about some of this stuff before, but frankly some of it, if not all of it, bares repeating.

Parkinson’s disease is an incurable, progressive, neurological disease. A small amount of money, compared to many other diseases, is spent on Parkinson’s research. Most research is funded by people like me and our families. Maybe the occasional grant here and there. The main way those of us with Parkinson’s live with this disease is with the medications we take and Deep Brain Stimulation surgery for many of us that are lucky enough to have that work. It’s cool, I guess, but here’s the kicker, those things stop nothing. They only mask it. The progression train is still cruising down the tracks, out of control and unstoppable. These ‘therapies’ allow us to keep living. To keep functioning. For some of us to keep working. Mind you, we are not what we were before this disease decided to show up. While we wear the mask of the medicines and surgical procedures, they only help is to hide what’s still happening to us. Don’t get me wrong, I am very thankful for the science and to the scientist that have come up with these masks for us, but I want people to fully understand that while I may look fine on the outside, I’m not. I’m just masked up.

I fight things every day that you can’t see. I deal with neuropathy in my feet and legs. I deal with balance issues constantly. My body hurts when I go to stand up from a chair. (In fairness, that last one could be partly due to age as well – LOL) I mumble sometimes and slur my speech. When I am speaking, I speak softly but I think I am speaking with plenty of volume. I call this speaking in “parkinese”. I get pooped easily and can’t poop easily. (TMI? Sorry) Some days I feel like my brain is in the clouds. I have days this disease scares the shit out of me. I have days where I barely think about this disease. They are rare, but dammit I love those days. I worry about my future and what’s to come. I worry about my amazing wife and if I will be a burden to her. I fret about how long I will be able to work. I worry about how long my awesome employer will put up with me down the road. I fight apathy (very common in people with Parkinson’s). I don’t sleep well at all. (Again, very common in people with Parkinson’s) Sometimes I have to choose between having tremors or dealing with dyskinesia. These thing will never be masked by meds or surgical procedures. These things are there everyday and while you can’t see them, they aren’t hidden by science, they are masked by me.

So many people know I have this disease but people don’t ask me about it. They don’t ask me how I’m doing. It’s funny and frustrating all at the same time. I’m not sure why. I’m an open book. When people are sick with other illnesses, people ask them how they are doing or ask them how they can help. It’s like Parkinson’s disease is this taboo subject that must not be approached. It really boils down to lack of knowledge in my opinion. People fear what they don’t know I think. Hell, I know I can be that way at times. Just remember, just because someone with Parkinson’s disease looks okay, it doesn’t mean they are. They just have a good mask working for them that day.

I’m not writing this for your sympathy. I’m writing this so you will learn about this disease. I’m writing this so maybe you will have some empathy. I’m writing this so you might consider donating to different organizations that focus on fighting this disease. Two organizations that I fully endorse are The Michael J. Fox Foundation and The Davis Phinney Foundation . I have no doubt both of these organizations have been eagerly awaiting the full endorsement from me, so there it is. You are welcome.

I hope you have enjoyed this peak behind the mask. My mask. Our mask. #fupd