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

Educating the Educated…

On Monday, February 6th 2023, I was given the honor of speaking/being interviewed in front of approximately 200 – 220 people from Abbott about my journey with Parkinson’s Disease and particularly how their Deep Brain Stimulation Implant has changed my life.

I truly enjoyed this opportunity more than most I have had because it was a chance to let people who don’t normally interact with patients, see what impact them and Abbott can have on someone’s life. This was a group of people from all over the world. I met people from the Netherlands, Germany, Columbia, Japan, and so on. It was so great to get to talk to some of these people afterwards. They would come up to thank me but I would tell them that it is me who is thankful for them and what they do. While they may not be involved in the Patients life directly, they are still such an important part of the entire process from manufacturing, to quality control to logistics, that they still have just as important a roll in my life as the doctors, nurses, and so on.

This won’t be a very long post. I was able to take a video of the interview on my iPad and have posted it to my YouTube Channel. Please take the time to watch it (it is about 33 minutes long) and feel free to share with friends and family so they can see what we battle everyday. Educate everyone – Educate the Educated.

Peace and Love,

~Darryn

2022 Year in Review

Sorry for being MIA for a while. Life has been really busy and stressful and down right rough these last few months, and that doesn’t even include anything Parkinson’s related. Anyway, figured I would do somewhat of a “year in review” of some sort. Probably won’t go Month by Month, but might try it to start out. So, here we go!

January 2022 – Nothing real significant that I can think of during this month, other than just a start to another year. We were still living in Arlington at the time and just living our lives as best as we could. I was still recovering from total left knee replacement the month before, but that was going very well.

February 2022 – This was a rough month. Lost my Parkinson’s “Dad”, Tommy Dubuque. I wrote a blog post about his loss and what he meant to me. You can read it here. Tommy was larger than life and a true force to be reckoned with when it came to Parkinson’s Disease. It has almost been a year and I still miss him and think of him on a daily basis.

March 2022 – Another overall uneventful month as far as I can recall. Work was becoming very stressful but I was putting everything I had into it. However it was wearing on me to be totally honest. As we all know, Parkinson’s and stress don’t play nice together.

April 2022 – This month brought on a major shift for me and us regarding my career, because of Parkinson’s. Toward the end of this month, we had to offload and store 4 large Generators and tanks in the yard at the Dallas Shop. Things didn’t go as planned as we weren’t provided all of the information and without going into full detail it became a very stressful situation for me as the Service Manager at the time. Due to the stress, my Parkinson’s disease kicked in full force. I was tremoring badly, could hardly talk or walk. I had increased my DBS as far as I could and it did not help. I went to work the next day with another 2 Generators coming in and while it went a bit smoother, my PD symptoms were still in full force. I shot a message to my Movement Disorder Specialist about what was going on and I needed a virtual appointment as quickly as possible. I then went home for the rest of the day. The next day I stayed home, was able to see my doctor virtually because of the Virtual Clinic that my DBS system by Abbott has available. This allows my doctor in San Antonio to connect to my DBS System via a secure Bluetooth connection and make the necessary adjustments that I needed. During that same appointment my Neurologist made it clear that I needed to step down from my position due to the heavy stress or I would risk increasing the rate at which my PD would progress. That was a tough pill to swallow, as this was a position I had worked so hard for the previous 6 years of my career. However, I knew I had to do it. I had to take care of me.

May 2022 – This was a month of continued transition. Some expected, some not. Toward the end of this month I started my new position working from home with the same company. That took a HUGE load of stress off of me and while we took a hit financially, you can’t put a price on my health. Since January or so, we had been talking about moving out to my wife’s family property in Bellville, Texas, at some point this year. Well due to some unforeseen circumstances, that led us to pushing up our move date to the end of June.

June 2022 – June was an incredibly hectic month. We were packing and coming up to the property every weekend to do work to get it ready for dogs and space for us to live and so on. Hectic almost feels like an understatement but fortunately my wife was able to take a leave of absence from work and she busted her ass and accomplished so much while I basically just worked from home and “held the fort down” as they say. The last week of June was pretty frenzied as far as packing and planning the move and so on.

July 2022 – July started out as June ended – CRAZY! The most brutal part was that me and my wife had to go back to Arlington to finish up the move, clean the house and deal with all that last little bit of stuff that everyone hates to deal with and you just want to throw it all away! On top of that, it was the 4th of July and a solid 100º + outside. Yet another thing that Parkinson’s Disease does not play nice with, heat! It was just the 2 of us and we were completely drained. On July 6th, my 52nd Birthday, we spent the day loading a U-haul and then went to Olive Garden to “celebrate” and have a Birthday dinner. We made the trek the next day to Bellville where we unloaded the the U-haul at our storage facility, again in 100º + heat. By the time we got to the house I was almost in full heat stroke and had to be taken inside and cooled off. It was a rough start to July but we survived the craziness and the stress – heat stroke and PD be damned!!!!

August 2022 – This month was all about somewhat settling in and continuing to work on the house and the outside of the house as much as we could. We stayed incredibly busy building a chicken run and continuing work on the house where we could. Still an ongoing project, but we have plans in place and hope for 2023 to be a real significant change to the house itself. Fingers crossed.

September 2022 – I always love this month in Texas. Typically we start to cool down a bit and get those cooler evenings with the still very warm days but still not so hot that it becomes miserable quickly. However, this September, Summer decided to stick around and over stayed its welcome. We continued working on the house. A great friend of ours and his wife came down and picked up our tractor and took it back to their place so he could give it a complete work through and make all the necessary repairs to it that were long overdue. Friends like these are hard to come by and we are truly so grateful for them both. Later in the month, TJ’s dad was diagnosed with cancer at 81, almost 82 years old. We knew we were in for a battle.

October 2022 – October is a busy Birthday month. Both of our granddaughters have birthdays, TJ’s Dad has a Birthday, My middle son’s birthday, and of course I cannot forget TJ’s birthday on October 31st. Grandkid birthdays are the best. Just getting to see them and how much they have grown and changed over the previous year is so exciting and being a “Papa” really is one of the best feelings in the world. It brings me a lot of happiness. One highlight of the month was me being able to speak at the Lone Star Parkinson’s Society Symposium. It was such an honor to be asked. Looking back, I feel I could have done SO much better but it was still an amazing experience and one I hope to get to do again! TJ’s dad continued with multiple doctor visits and tests and so on.

November 2022 – Let’s just say that this was probably a November to forget. Mid November I got sick with the flu. That was not fun and I will spare you the details. Just as I was on the mend from that, I got COVID! I was mad! I was undefeated against that bastard. Fortunately, due to being vaccinated, it was a “mild” case. I was sick and run down and did lose my sense of taste and smell for about a week but that was the worst of it. The real bummer was it then hit everyone in the house one by one and basically ruined Thanksgiving as we were planning on getting together with some of TJ’s family that we had not seen in a few years. It was very disappointing. We all finally got through COVID and thankfully her dad never tested positive. He was beginning radiation treatment for some tumors in his ribs and back but his health was declining rapidly.

December 2022 – To say that this month was the hardest month ever is an understatement. We were not at all feeling in the “X-Mas Spirit”. All of our normal decorations and so on were still in storage with really no place to put up all the decorations we normally put up. Anyone that knows TJ, knows that Christmas is her favorite holiday (next to Halloween) and normally our house is very decorated, inside and out. I tell people that our house usually looks like Santa puked everywhere! This year was different and due to all of us getting over being sick and Ed’s (TJ’s dad) rapidly declining health, it became almost impossible to even think about Santa or anything else. We did force ourselves to go out one weekend and get a small X-mas tree and ornaments from the Dollar Store and Walmart closeouts and put it up in our living area. It did help some but really paled in comparison to what was going on around us. Ed had been taken to the hospital in mid December and came home on December 16th on hospice care. Within a few days, Ed was gone. It was brutal on all of us but I am so glad he is at permanent rest for his sake. When people say “Fuck Cancer”, I get it. That is the closest I have been to someone that Cancer has beaten. I will miss that man. He was always so good to me and I do have many fond memories with him. The name of our property is Red Bird Ranch. We named it that because of the many cardinals that are out here and also because they say when you see a cardinal, it is a loved one visiting you. While I don’t truly believe thats what it is, it’s still very comforting when I do see a cardinal as it reminds me of my dad and now Ed. We did go on to celebrate X-mas the best we could although it was a rough one this year for sure.

So, that wraps up my 2022 year in review. I guess I did end up going month by month. You’re welcome. We are almost a week into 2023 and it will be interesting to see what life brings all of us this year. I am looking forward to this year and while I don’t make resolutions, I do think about different ways to be a better person and ways to better myself. We will see what the universe has in store I guess. To all of you that read this blog and fight Parkinson’s and to all of you that don’t, I really hope this is a great year for all of you and that we all learn to love and live our best life now.

As always, Peace and Love

~ Darryn

Learning Opportunities

Two weeks ago today, I was given the opportunity to speak at the Lone Star Parkinson’s Society’s annual symposium. It was such a huge honor to me to even be asked to speak and tell my story. It was the first time I was given an opportunity to do something like this and speak in front of a large group of people. I believe the attendance was around 200 plus people. I have had several opportunities to speak about Young Onset Parkinson’s Disease and my journey with the disease, but always in closed environments being videoed for broadcast later or one time at a TV Station doing multiple small interviews with different radio and news people across the country to be aired later on. Initially I was not sure what I would even talk about, as I knew the audience would be mostly older people with Parkinson’s and their caregivers. I didn’t know how I was going to relate my story to them. It seemed pretty daunting to me but not once was I anxious about it, which is a very different feeling for me than when I used have to speak in front of people and just became incredibly nervous to the point that when speaking, my voice would shake, and not because of PD.

I was asked to speak at this symposium a good 4 or 5 months before the date of the symposium. As I always do, I told myself, “Eh, I have plenty of time. Don’t sweat it, I will come up with something.” I racked my brain constantly. I had various ideas about how I wanted to tell my story, but I will be square with you, I didn’t start writing my bullet points for my speech until 3 days before the actual speech and wrapped them up the night before. Typical for me in most things I have to do like that.

I was the last speaker of the day. Overall, I felt like my speech went well. I never got nervous at all. I felt confident in what I was going to talk about. Parkinson’s Disease is a subject I know all too well. I have yet to watch the speech back. I need to download it from our camera and check it out. I do plan on putting it up on my rarely used YouTube channel after I can edit it a bit. When I put it up, I will post the link here, Facebook, LinkedIn, and Twitter.

With all that said, I have had time to reflect on my speech. I have had time to think about the good things and of course ALL the things I could have done differently. We are our own worst critics but I now know the things I would have changed.

Mistake #1 – I decided I was going to give my speech and then go through some pictures of my journey, after I was done with my main talking points. I really should have had my slide show match up with my talking points instead of waiting until the end to try and rush through some pictures.

Mistake #2 – not timing my speech. I was told I had around 45 minutes of speaking time. When I was putting my speech together, as I was going through my bullet points, I thought maybe, at best, I had 30 minutes of speech. This led to mistake #1 and me thinking I would show my slideshow of pictures at the end to kill the rest of the time.

Mistake #3 – too much detail about some things that were not necessary. Again, I was so paranoid of not filling that 45 minutes that I just put too much fluff in there. Not that those details aren’t true and part of my story, they just weren’t necessary for what I truly wanted to accomplish in my speech. Again, this also goes back to not practicing my speech and timing the length. I remember being in high school speech class and having to give a 15 minute speech in front of a classroom of 24 other kids and thinking, how the hell am I going to kill 15 minutes talking about whatever subject the teacher gave us. I was also a complete bag of nerves so that didn’t help. I think those past memories got to me a bit in my preparation, or lack there of, in timing.

As the saying goes, hindsight is 20/20 and while I know I will do things differently next time. I am still proud of the speech I was able to give. I am proud that I wasn’t a bag of nerves and I was confident in my topic. I was proud that I felt quite comfortable in that position. Will I always feel that comfortable if more opportunities present themselves? I don’t know but I am not really worried about it either way.

The biggest gain I got from this opportunity was that I want to do this MUCH more. I really enjoyed myself and the interaction with the people. I mostly enjoyed the opportunity to educate and encourage and I really want more opportunities like this. I want more opportunities to speak about my DBS (Deep Brain Stimulation) and my life with Parkinson’s disease. I have no clue how to go about getting these opportunities but I will take them if they come up. I am very fortunate to be able to do things for Abbott (DBS Manufacturer) when they come up but those are few and far between.

PWP’s (People with Parkinson’s) need to hear from their fellow PWP’s at least as much, or more, than doctors and drug reps and so on. Doctors and Drug Reps etc. offer valuable insight into what treatments are out there and we need to hear from them as well,in order to educate ourselves. It is equally important to hear from each other, especially if that person can give encouragement and even a small ray of sunshine. I want to be able to do that, now more than ever. If you know of anyone or any opportunities that may be coming up to speak, and they have a need for a speaker, I am your guy! Message me here on this blog. I will put your contact in contact with my agent and we will get it arranged. Just kidding, I don’t have an agent. Just reach out to me!

We have to take these learning opportunities to not only better ourselves but also find our passion or something we really like. This opportunity I had, showed me even more, that not only should I be doing this, but I absolutely LOVE doing this.

I want to take this learning opportunity, learn from it, build upon it and see where I can go with it. Just need the opportunities now.

Live your best life now! Peace and Love,

~D

Sometimes Parkinson’s Does Dictate Life

We often say, as people with Parkinson’s Disease, “I have Parkinson’s Disease but Parkinson’s Disease doesn’t have me!”. While I completely get the sentiment of that saying, and often times say it to myself still, it just isn’t completely true. Do I fight this disease? Of course I do. Am I going to give up? Hell no! However, the facts are, there are times in life that Parkinson’s disease does have me and there is nothing wrong with admitting that. I have had some very major changes in my life in the last 2 1/2 months and the majority of those changes are because of nothing other than Parkinson’s Disease.

Within the first week of May of this year, I had to step down from my position as Service Manager for the branch I was managing in the Dallas – Fort Worth area. It was because of Parkinson’s Disease that I stepped down. It was an extremely stressful job with lots of hours and trying to meet high numbers etc. It finally got to a point where I had 2 days of major Parkinson’s symptoms coming through, I had adjusted my DBS as high as I could, I was taking Rytary and nothing was stopping the symptoms. I was able to get a fairly quick appointment with my Movement Disorder Specialist and they were able to make some adjustments to my DBS System and then also increase my ranges of adjustments I could make on my own. One thing I was told toward the end of that appointment was I need to find a less stressful job as soon as possible. Stress is extremely hard on people with Parkinson’s Disease and my doctor said the high levels of stress I was under can also lead to faster progression. I knew I needed to make a changes as well and honestly I got my resume redone and was starting to look for a job with other companies as I knew at the time, there was probably no where for me to go with my current company. It broke my heart to think of leaving a company that I have almost 10 years invested in. A company that has been so great to me and understanding due to my Parkinson’s Disease. At about that same time, the company I was working for started a new Estimating Department for Service. While I knew it would be a pretty big pay cut, I knew it was the right move for me at this time due to some other changes that were coming. So I took the job, I now get to work from home, in a fairly stress free environment and it has been a great decision and I really enjoy the job.

The other change that were now in motion due to some other circumstances was me and my wife moving to Bellville Texas, which is about an hour west of Houston. My wife’s family has some property that has been in her family for over 100 years. Her parents had it at the time. It was going to my wife when they passed on. Initially, several years back, we really had no interest in moving here. In the early part of 2022 however, her mom asked us about considering still moving here. Me and my wife talked it over and after having a taste of farm life when we lived in New Braunfels Texas, we really missed that life and made the decision to move to Bellville with her parents and help them out as they are getting up there in years. It’s 10 acres of land with an old ranch style house on it that needs a ton of work but we love fixer uppers so that didn’t scare us. How Parkinson’s dictated this decision was I honestly don’t know how many more years I will be able to work. I could have 8 more years of being able to work or I could have even more. We both started 401K’s much too late in life and so retirement wasn’t going to be so easy either. With moving here, it lessens the financial burden down the road tremendously and we are also now home owners. With all that said, we moved from Arlington Texas to Bellville Texas over the 4th of July weekend and during that week as well. It was exhausting and completely wiped me and my wife out. On Friday, July 8th I was in full blown heat exhaustion and probably on the verge of a heat stroke. It was brutal and when you have Parkinson’s disease, you get tired quicker and more easily. My entire body was aching for a solid 4 days straight and I also had to deal with the guilt of not helping my wife as much as I wanted to or could. We are currently building a chicken run to let our chickens out of the coop and I can’t do as much as I want to or need to on the weekends. I hate that. This crazy heat isn’t helping either!

In so many situations in my life, Parkinson’s does have me. It does dictate my life in a lot of ways now. It’s reality but it doesn’t mean I am quitting. I am just adjusting. Finding another way to do things or work around things. I don’t have a choice. Most days I am okay with that and I do what I can do. Some days, it pisses me off to no end and I hate that it does have me and I have it. My main point is, it get’s exhausting always putting on a brave face and almost living in a state of denial about certain things that Parkinson’s is doing to me. I don’t type nearly as quickly or as accurately as I used to even just 2 or 3 years ago and I am, or was, a fairly fast typer. I find myself hitting the backspace button a lot more than I used to. I know my brain has slowed down in some ways. I don’t process some things as fast as I used to and have to work a little harder thinking through certain things that used to give me no trouble at all. Part of that could be age as well as I did just turn 52. Regardless, it is a reality of having Parkinson’s disease. I am not forgetful or feel like I am mentally slow, I just know that some things feel like they take a little longer to process than they used to. Again, even as recently as 1 or 2 years ago. When the neurons aren’t firing like they should and dopamine production is getting less and less as this disease progresses, I can just “feel it”, if that makes sense. I am sure a lot of my fellow PWP’s would agree. I am also starting to notice a few other physical symptoms I didn’t have before. They don’t necessarily happen daily but still something I will bring up to my Movement Disorder Specialist at my next appointment.

My main point in saying all of this is to say that some days it is okay to let Parkinson’s Disease have you. It is okay to make life adjustments because of what Parkinson’s disease is doing to you. It’s okay to let it dictate at times. It doesn’t mean we are giving up or giving in to the disease, it just means that is the reality we have at the time and so we make the best of it. While I absolutely HATED stepping down as Service Manager, I knew I had no choice. My quality of life means more to me than a title or a bigger paycheck. As I have said many times in this blog, I am choosing to live my best life now! That is a daily decision that I make and that is what I try to live out. I hope everyone does the same whether you have an incurable disease or not. Sometimes the way Parkinson’s can dictate my life, turn out to be good changes.

Peace and Love – 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.