4 Shitty Days…….

The past 4 days have been the worst 4 days with Parkinson’s I have had in several years. Especially since having Deep Brain Stimulation Surgery. It’s been pretty shitty, not that Parkinson’s disease is a walk in the park. What frustrated me the most, is it hit me out of nowhere. I have always had rough days here and there. Anyone with Parkinson’s can tell you that, that happens a lot. Let me tell you all about them. Just so maybe it can help you understand what People with Parkinson’s deal with.

It started with me this past Thursday morning. Every morning I wake up sore but it’s typically just in my neck and shoulders. That morning, I woke up and my entire body was sore. I got up and did my normal ritual of chilling for a bit, having my morning Diet Pepsi and heading to my office to start working. It wasn’t easy getting around that morning. I just felt “off”. I didn’t have any tremors or obvious symptoms like that, but I was physically moving slow and when I sat down to type my password in my computer, I went to type my password and while the password was there in my brain, my brain wasn’t connecting to my fingers. My fingers were moving very slow. Everything was slow. It’s like when your feet are in wet cement, but instead it’s my brain. My body continued to hurt as well. It was painful to get out of my chair. It hurt to walk to the kitchen. This went on all day, until I went to bed. It was a shitty day.

Friday morning I woke up and again, my entire body was sore. I sat up and turned to take my morning meds. When I got to the pill bottle with my Parkinson’s meds in it, I couldn’t get it open. Not the first or second try. My brain was again sending the signals but my hand was not responding. On the third try, I got the bottle open but I had to will my brain and hand to talk to each other and start twisting the lid with a tighter grip and willing my hand to turn to the lid to the left and saying, “Lefty Loosy, Righty Tighty” in my head and got the lid off. The rest of the day Friday was just like Thursday. My brain stuck in mud, my fingers going slowly, I am wearing out the backspace key on my keyboard and I am having to take several breaks through the day just trying to get my brain together. I also continued to be in pain. Friday, it was a shitty day.

Saturday morning started out like Friday morning did. Fortunately, I didn’t have to work. I sat for a while on Saturday in my recliner just to relax. Had my Diet Pepsi and then decided I needed to get up and just move. My office was still a mess, other than my desk, and I still had a couple boxes in there that I had barely touched since we moved to our house last November. I just felt that if I just did things in my office, at my own pace, I knew I would feel somewhat better that I at least gotten some shit done. My body was still sore but not quite as bad as Friday, so I took that as a win! I put up 2 floating shelves that I had made when we still lived in New Braunfels. Then I started putting stuff on those shelves and got my record player set up that I had gotten for Xmas. That felt good to get that done. There was still some wrapping and papers in a corner so I got a trash bag and cleaned all that up. When we bought this house, we bought a day bed that we decided to put in my office so it could also be used as an extra bedroom when our kids and grandkids came to visit, allowing us to have 2 guest bedrooms when needed. I got that day bed all cleared off, folding sheets and so on and then made the day bed up with the sheets and comforter we had bought. I vacuumed my office floor and was beat. I got done around 3 and I could barely move. I struggled through the day with simple tasks such as opening my pill bottle to folding sheets and my t-shirts. It was an accomplished, but shitty Saturday.

Now here we are and Sunday morning comes. I woke up sore this morning but it was mostly like every other day in that I was mostly sore in my neck and shoulders like every morning. My legs weren’t as bad. I took this as a good sign. I had two projects to get done today. I had to get a cat door installed in my shop door, which is made of metal. The big reason for this is because we have a lot of chickens and we also have outdoor cats on our property. Yes, the cats and chickens do get along. I had been leaving the garage door on my shop open a bit because sometimes the cats would sleep in there and we didn’t want them getting stuck in there. Well a few of the chickens took that as their opportunity to start roosting overnight in my shop, thereby shitting all over some tools and my workbench and so on. Now you know the reason for getting the cat door installed. I also needed to put a cat door in a door in our mother-in-law suite that is across the patio from our house. My mother in law needed it so her cat would have a place to go and eat and it would also keep her dogs from getting in the cat food and so on. The shop door, being a metal door, is heavy. I got it off the door frame and on my saw horses. Got my grinder out and cut the opening and installed the cat door. I then hung the door, took a break and then started on the door for my mother in law. At this point I am starting to hurt pretty good. Fortunately, its an interior, hollow core door, so it was pretty easy to get that pet door installed and then hung that door. Now I am hurting pretty much from head to toe. Again, another accomplished, but shitty day.

I don’t know what tomorrow will bring. I don’t know how I will feel in the morning. I can’t worry about that. Thankfully I am going to see my Movement Disorder Specialist this coming Tuesday. I am hopeful he can make some changes to my DBS system as I haven’t felt quite right since my new Generator/Battery was put in last October. Not that I have felt way off or anything, I just know there are some adjustments and fine tuning that are needed. As my mentor, Tommy Dubuque, used to tell me, no one knows our bodies and our Parkinson’s more than we do.

Through it all, I try to remain positive but these past 4 days have really worn on me mentally. I know that my Parkinson’s will continue to progress. Eventually I won’t be able to do the things I got done this weekend. That thought terrifies me in that I don’t want to let go of the things I enjoy doing. However, while I can do these things, I will do my best everyday to do all that I am capable of doing. We only get one shot at this life. That’s why my motto is, Live Your Best Life NOW! Live in the moments that each day gives you. Always do what you can and try not to focus on the things you can’t do. It’s easier said than done for sure. Especially when some things are out of your control, like a disease that you cannot stop. Even when you have 4 shitty days…………….

As always, Peace and Love,

~Darryn

Just an update….

Normally I would do my annual Year In review but I am going to skip that this year. If you look back at my 2023 posts you will get the gist of what went down last year. With that said, I am just going to post about some things I am working on in regards to Punk Rock Parkinsons in the beginning months of this new year.

I am going to focus more heavily on my YouTube Channel this year. I feel that putting videos out will reach more people. I believe that watching a video rather than reading a long ass blog entry will be much more beneficial for people and something that people can have on and listening to while working on the car or cleaning the house or whatever you might be doing. And hell, who doesn’t want to look at this beautiful face! In order to accomplish this, I am going to need a few things as I want to do this as professional as I can as far as sound and lighting. Don’t worry, I will still be me as far as the videos go – LOL! Anyway, back to my point, I am going to be raising some money to buy the equipment and software I will need to do this the right way. I am going to need a quality microphone, lighting, and possibly some really good video editing software so that I can get this rolling. If I am able to raise enough money, I will also get a good camera to use, other than what is on my laptop.

You may be wondering why I am doing this. Let me tell you. I started this blog back in June of 2017. My motivation for the blog was to have a place to express myself and also to help educate the general public about Parkinson’s disease and Young Onset Parkinson’s disease and what life is like living with the disease. Here I am 6 1/2 years later, and while I believe the blog has done okay, frankly it has not gained the traction that I hoped it would. A big reason for that is more than likely my abrasiveness, cussing, and blatant honesty in my writings. I just can’t bring myself to put a “pretty face” to Parkinson’s disease and I never will. Guess that’s the punk rock in me. The YouTube Channel will be me, just in video format and I think it will be able to reach a larger audience. I am still going to keep the blog going also, but there will be less blog entries and many more videos.

I have told you the what and the why, now comes the how. As I mentioned earlier, I am planning on raising money to buy the equipment I will need. I plan on having a t-shirt design with my blog logo on it that I will be selling. This is a work that is in progress. The second thing I am looking at is starting a GoFundMe to raise some of the money but I am still tossing that around. If I do the GoFundMe, I will most definitely send out the link. The third thing I am doing is I have had some silicone bracelets made and am going to put them up for sale.

“Punk Rock Parkinson’s Punk”

“Punk Rock Parkinson’s Punk”

“Live your best life Now!”

I am selling these bracelets for $3.75 each. This includes shipping. If 5 or more are ordered we can discuss the price and shipping and go from there. Contact me through this blog, on Facebook Messenger, LinkedIN DM, or at my email address, dwtatt@gmail.com. They will fit most adults, they only come in one size. If you are outside of the continental United States, we can discuss shipping costs as well.

I am really looking forward to what 2024 will bring. I am looking forward to more speaking opportunities and just continuing my Parkinson’s advocacy and education as much as possible. With that said, I had the opportunity to be interviewed by Omar M. Khateeb on his podcast, State Of MedTech. (Click the link to see the interview) That is what I have to start the year off. Omar was at the AdvaMed conference I was interviewed at by Abbott, last year in Anaheim. He attended our session and I met him afterwards. Such a real and genuine person. I hope to work with him again sometime. He has been very helpful and generous with his time to me.

I think I will call it good for my first blog entry of 2024. As you can read, big things coming in 2024. I am hopeful we all have a tremendous 2024 and cheers to all you Punk Rock Parkinson’s Punks out there that have supported me and hopefully will continue to support me. Much love to you all.

~Darryn #fupd

Another F*ck You to Parkinson’s

It’s been almost 2 months since my last post and it has been a CRAZY 2 months! I guess I will start from the beginning of this crazy journey. This is gonna be a long one. Buckle up!

Some point in early September of this year, my wife got a random message on Facebook Messenger from a Realtor asking if the property we had inherited was for sale. My wife responded immediately that it was not for sale. We didn’t even consider selling the land. It has been in my wife’s family for around 100 years. We had moved out there in July of 2022 as it was deeded to us. Our hope was to restore and remodel the house and have our farm animals and make it what it was when my wife was just a little girl. We started with lots of work on the outside making areas for our dogs and our chickens. Then we added a couple Alpacas and several goats. As far as the house went, we were able to catch up the back property taxes owed, thanks to a gift from my mom. We also put a new roof on and replaced the AC and Heat Pump. We put in a good chunk of money out of the gate. As time went on and we hit summer, we were continually spending our time and money just trying to keep up with the place and feeling like we were spinning our wheels. We weren’t losing ground but we weren’t gaining any either. My wife had put aside her hobbies and so had I. As someone with Parkinson’s I could only give so much. If I worked on the property for more than about 4 hours, I was done for the day and useless the next day. I wasn’t enjoying myself or doing any woodworking anymore. I had no time and no energy.

At the end of September, me and my wife were traveling to San Antonio as I had to have my DBS Battery replaced. While we were close to San Antonio and our hotel, my wife got another message from that realtor asking if we would consider selling the property and this time included a Cash offer with quick close and no inspection and so on. This time the message and number caught our attention. We messaged back that we would have to do some thinking about everything and would get back to her. I had my surgery the next day and we continued our discussion about the offer. We had multiple things we had to consider. The main one being, could we qualify for a house and also we had to consider TJ’s mom in the equation as she would be moving with us as well. We began looking online at different houses for sale that would work for us and just seeing what was out there. We had also made a counter offer and were waiting to hear back from the potential buyer on that counter as well. One Sunday toward the beginning of October we decided to go and see some of these houses that we had pinpointed and had driven by also. We made an appointment on Zelle with a Realtor and we met with her and she showed us a couple houses. We liked them but there were little things about each one that just didn’t fit for us as a family. We were getting ready to head home and had stopped to eat. TJ decided to see if we could go look at a house we had found on Zelle, even though we felt it wasn’t within our reach. We were close to it so what the hell. We called the Realtor we had just met with and it turned out she didn’t live very far from the house or where we were eating at. She called the listing agent and they allowed us to come and see it. We pulled into the driveway and waited for the Realtor. She showed up and let us in. We were barely 3 feet in the door and immediately felt that we were home. The house had been remodeled exactly to our tastes. A true Farmhouse feel with an amazing breezeway separating the house from the Mother in law quarters. We fell in love with the place and even after we left we all looked at each other and said how we kind of wished we hadn’t looked at it. Our Realtor asked if she could have a lender reach out to us and we said yes as we knew if we did sell, we would need financing in place and so on. The following week we got the counter offer and while it wasn’t where we thought it should be, it was a solid counter offer. We talked with the individuals realtor and told her we would think about it. We then began the process of getting qualified with a lender, That is another crazy story in itself but as we finally got hooked up with a local lender, we basically started the process over for a 3rd time. This lender was incredible and along with our Realtor, went above and beyond to help us out as this was our first time buying a house! Once we had the counter offer nailed down and knowing what we could afford, we moved forward with making an offer on the home of our dreams. A very long and stressful story short, we got the house and closed on it on November 15th.

Me and TJ in front of our first house ever after closing!

We had already been packing and were more or less ready for the move. The stress had taken a toll on me and TJ. We were so exhausted by the time we had to move. It was rough. I was of little to no help as I was just mentally and physically exhausted but fortunately, we had A LOT of help. We finished moving the Sunday after Thanksgiving at around 4:30 in the afternoon.

One of our biggest reasons for deciding to sell the family property and move was because of me having Parkinson’s disease. As you all know by now, my motto is “Live your best life now!”. While it’s my motto because of Parkinson’s disease, this can and should be anyone’s motto. This applied to my wife as well. She was not living her best life now. We knew we had to make a change. I was exhausted living at the property. My wife was exhausted as well – physically and emotionally. We knew we had to get back to living our best life now and also be able to give her mom her “own place” with the mother in law quarters that were part of the house we bought. The other thing this property has is a HUGE shop! Big enough for me to set up my wood turning equipment etc. with more than enough room, as well as plenty of storage and an added on area for our animals and lawn equipment. The property also has a 10×20 building on it that we are using as a chicken coop. We downsized from 10 acres to just a little over 2 acres. We are finally going to be able to enjoy our home and our land and animals without killing ourselves every weekend and just spinning our wheels.

That is why I titled this entry “Another Fuck You to Parkinson’s”. Sure Parkinson’s, or “Mr. Shaky”, as my brother calls it, may win some battles but I am not letting it win the war! Not yet, Not now. I have more to do in this life and I will be goddamned if I am going to let Parkinson’s keep me from some of these things. I am not in denial, please understand that. I know what it’s going to do to me, but until it renders me to a wheelchair or whatever happens down the line, I am going to live the best I can. I know it’s progressing, even with DBS, I am having balance issues now. I walk into things sometimes. I laugh about it. While it’s sucks, I do find it kind of funny that I can be walking or even standing still and just slightly lose my balance or go to one side or the other for what should be no reason at all.

Another fuck you to Parkinson’s that I did during this process was buy something else. Many of you know my love for VW’s and in particular, VW Buses. My dad had a couple VW Beetles when I was growing up and I love those as well, but I always wanted a bus. They have become such collectors items that even a VW Bus rust bucket with a tree growing through the middle of it is going for more than I can afford. About six or eight months ago, I resolved with myself that I just won’t be able to afford a VW Bus. Especially a rust bucket. I don’t have the skills or money to even restore one and to buy one that is pretty much road ready is way out of my budget! My second love for VW’s has been a VW Beetle. Growing up with them and learning to drive in them with my dad has always been a fond memory, so I began looking for VW Beetle. I knew I wanted a ‘69 or ‘70 Beetle. Anything after 1971 just didn’t do it for me. I began searching Facebook Marketplace for several months and then I came across the one I wanted. It was a 1970 VW Beetle, a little rough around the edges with the patina look that I love. It had front end airbags installed so it can be raised and lowered and I love that lowered look anyway. The engine had been rebuilt, came with an original VW roof rack and so on. I began communicating with the seller and he told me about anything I asked about. It has some things that need some repairs but nothing crazy or nothing I shouldn’t be able to afford. I showed it to my wife and she liked it and told me to go check it out. I told her that if I go look at it, I am taking the money with me because there is a 99.9% chance, I am driving it home. I took TJ’s mom with me to go look at it, just in case I ended up getting it (HA!), and fell even more in love the minute I took it for a test drive. Brought back a flood of great memories along with that wonderful VW Beetle engine sound and the smell of gas! I pulled the trigger and now she is mine.

Meet “Betty” (In front of our shop at the new house)

Darryn’s 1970 VW Beetle

This is really a dream come true and I can’t wait to bring Betty to some car shows in the Houston area and also join a local VW Club. Betty was the name given to her by the previous owner and me and my wife just thought it fit so we are keeping her name. I took my wife for a drive this past Sunday, in Betty. It was her first ever ride in a VW of any kind, let alone a classic beetle! On Betty’s glovebox is a sticker the previous owner had made and placed there and it says “getfucked”. I love it and that sticker stays – because Parkinson’s disease can “getfucked”!

Betty rides low to the ground and I love her. I can get in and out of her okay (That’s what she said) and while I can do that, I am going to live my best life now, cruising around in Betty whenever I can!

While we may have to adapt to wherever we are at in our Parkinson’s journey, it doesn’t mean we give up. We continue educating ourselves, pursue the best treatment options we can that will work for us as individuals, keep pushing to live our best life now and raise our middle finger and keep finding a way to give another fuck you to Parkinson’s disease.

~Darryn

Technology and Parkinson’s Collide…

As many of you know, I had the honor of being asked by Abbott to go the AdvaMed Medtech conference in Anaheim, California this past week and share my Parkinson’s story and talk about the amazing technology Abbott has with their Deep Brain Stimulation and how DBS has given me my life back.

Many of you already know my story so I won’t bore you with those details again. We had a 15 minute speaking window, and while that was not a lot of time, Me and Dr. Burton, DVP and Chief Medical Officer of Abbott, were able to make the most of it and highlight a key innovation that only Abbott has with their DBS System. That is there NeuroSphere Virtual Clinic Technology that allows me, as a Parkinson’s Patient, to have a virtual appointment with my MDS, through the app and over the camera on my controller device. My MDS can connect to my DBS through the app and he can make adjustments to my DBS virtually. I have had these appointments several times since Abbott came out with Neurosphere and it’s just the same as if I were right in Dr. Ramirez office. Of course it is very secure and FDA Approved. Abbott recently passed 10,000 NeuroSphere appointments with patients using this technology with their doctors. I am proud to say that I had a hand in them achieving that number!

This technology has allowed me to keep my relationship with my MDS in San Antonio, TX. A few years ago we moved up to Dallas as I had taken a promotion with my job. NeuroSphere Virtual Clinic was not released yet. If I had an appointment with my MDS in San Antonio, I would have to drive 8 1/2 hours (round trip) to get to that appointment, whether it was just a regular check up or I was needing adjustments made to my DBS. Once the NeuroSphere Virtual Clinic came out, I was able to have appointments with Dr. Ramirez while in my office at work or right at home. Since moving to the Houston area a little over a year ago, I have had 4 or 5 virtual appointments with Dr. Ramirez and will continue to have more.

There are a few reasons I love this technology. The number one reason is that it gives Parkinson’s Patients with Abbott’s DBS system the availability of their Neurologist or MDS without having to drive to their office. There are times I have had a few Virtual appointments where I was not in any shape to drive. If it weren’t for the NeuroSphere Virtual Clinic capability, I would have had to have my wife take time off from work and make the long drive to San Antonio to get the adjustments I needed to start functioning “normal” again. Not to mention the cost of the trip and the lost PTO Time that we both work hard to accrue for actual vacations. This technology changes that for so many people with the Abbott DBS System and for so many in the future that choose their system.

Just like the day I first got my DBS turned on and programmed, I am continually blown away by the technological advances that are out there for people with Parkinson’s Disease. We can actually live semi-normal lives and do our best to live our best life now and each day we get. I do like to stress, these are not cures. There is no cure. Parkinson’s disease is continually progressing in my brain and will continually take away from me. I am always hopeful for a cure, but admittedly not very optimistic that I will see that in my life time. However, with technology continually moving forward, I am optimistic that I will be able to have more time than I think before Parkinson’s disease makes me an old punk rocker with a walker! I promise you, when that day comes, my walker will be VERY punk rock though!

One of the best parts of that session at the conference was afterwards. Many people came up and thanked me for sharing my story and bringing awareness to Parkinson’s disease and Young Onset Parkinson’s Disease. It wasn’t because people were thanking me. The best part was feeling like I am making a difference with what I do. I was able to answer multiple questions about DBS and just got to talk to people about living with Parkinson’s in general. That is what means the most to me when it comes to getting these opportunities with Abbott or anyone else. If just that little bit can make a difference to some people then I am happy!

One more quick story, after I got done, me and my wife went over to the hotel to wait for the car service to take us to the airport to fly home. We had some time to kill so we went in the coffee shop there and met a gentleman who had seen my session at the conference. He told us his partners mother had been recently diagnosed with Parkinson’s disease and she was very down about it and the impression I got is that she was feeling a bit lost. Me and my wife were able to talk to him for a bit, I gave him the web address for my blog and he said he would pass it on to her to read through. We shared some other advice with him and he thanked us. That, for me, was the highlight of the day. I hope she does read through my blog and gets some helpful information or just feels a bit better, knowing she is not alone with this shit disease.

I have posted the video of the session at the conference on my YouTube channel. If you are interested in seeing the video, just click on “YouTube” and it will take you there. The name of my YouTube Channel is also Punk Rock Parkinson’s. I would truly be grateful if you would also subscribe to my YouTube Channel. I have some big things in store for the channel starting in 2024!

Thank you all for reading and I truly hope I am doing good for the Parkinson’s community.

As always, Peace, Love and Punk Rock,

~Darryn

Me, Abbott and the FDA

As many of you know, I had the opportunity to go up to the Abbott headquarters in Plano, Texas this past week to discuss my Parkinson’s story and my experiences before DBS, after DBS, the surgery and my other experiences with the Abbott DBS System. We discussed my experiences with the ambassador program, as well as Abbott’s amazing Virtual Clinic through NeuroSphere Digital Clinic.

This wasn’t a large gathering like some of the other events I have been a part of. I didn’t count but there were approximately 15-20 people from the FDA there and several people from Abbott. I had the honor of being introduced and interviewed by Dr. Binith Cheeran, Head of Brain Therapies at Abbott Neuromodulation. He is also a very experienced Movement Disorder Specialist. During his introduction he stated a very interesting fact that I didn’t know; Only 10% of Parkinson’s patients see a Movement Disorder Specialist (MDS) for their Parkinson’s treatment versus a regular Neurologist here in the United States. While I knew the percentage was somewhat low, I had NO idea it was that low. Once again, another Parkinson’s stat that saddened me and made me angry. To me, it’s another failure of the Parkinson’s community to not get that education and knowledge out there to understand the difference in care that happens when you go see an MDS. I do understand that access to an MDS vs. a Neurologist isn’t readily available to so many people with Parkinson’s Disease. If you do have the opportunity to switch your care to a Movement Disorder Specialist, I implore you to do so, even if it will be 6 to 8 months to get that first appointment with them.

Sorry to get on that tangent, now back to my regularly scheduled blog entry. After a very kind introduction, Dr. Cheeran asked me when I was diagnosed and how I first heard of DBS and who did I hear about it from. I shared when I was diagnosed (4-22-2015) and told my story of hearing about DBS from Parkinson’s Patients and of course from different manufacturer representatives that would come to our support group meetings. We discussed what treatments and medication I had tried before discussing DBS with my Movement Disorder Specialist. We talked about the process of getting approved for DBS, the actual surgery itself and what the benefits of DBS were for me versus what my life was like before DBS.

One of my favorite parts of our discussion that day was talking about Abbott’s Virtual Clinic. This technology allows for me to have an appointment with my MDS, virtually through the programming app, where he can access my battery virtually and adjust my settings as needed, he can take me through all the usual Parkinson’s exams etc., all via the camera, without me having to leave my home or office. Abbott is the only DBS Manufacturer that has this technology. It has literally been a life saver a few times when I was maxed out on my adjustments and my symptoms were kicking in full force. I live 2 hours from my MDS, I cannot make that drive all the time, it also requires taking a day off from work. Now I don’t have to worry about that when I really need to see my MDS.

We also discussed the Abbott DBS Ambassador program. I love being a part of this program. This is a volunteer program (unpaid) that Abbott offers so that people that are considering Deep Brain Simulation surgery can talk to someone that has gone through it and discuss our experiences before and after DBS surgery. To be an Ambassador we go through training in regards to what we can discuss and what we can’t discuss. Ambassadors are not there to give medical advice or even sell the Abbott DBS system. We are simply there to talk about our journey with Parkinson’s disease, what led us to DBS and the benefits we got from having DBS surgery. In my opinion it is so much easier to make a decision on something like DBS when you talk with another PWP (Person with Parkinson’s). We can talk to doctors all day long but when you connect with someone that is living with the same disease and can hear their story and how their life changed, that is where the real impact is. I do discuss why I chose the Abbott system, but I also encourage everyone to please do your research and make a fully informed, educated decision, when it comes to deciding what therapies or medications you are going to choose when it comes to your Parkinson’s care.

We then had time for some questions from people with the FDA. We had one question about the Ambassador program and whether or not it was a paid position. It is not. Dr. Cheeran did explain that when I come to do things like this for Abbott that they do pay for my plane ticket, hotel, and meals. Another question focused on insurance and if they explained the out of pocket costs to me. I stated that I was fortunate to have good insurance through my employer but also added that healthcare in America sucks. My DBS surgery was just shy of $300,000. My out of pocket costs not much considering the cost of the surgery. Dr. Cheeran did state that DBS Surgeries typically range from $150,000 to close to the $300,000 range but when you look at the cost of the medications over a long period of time versus the cost of DBS Surgery, DBS is cheaper in the long run. The next question I recall, was about how do we do a better job of promoting DBS therapy and other therapies that are out there. I explained that is the exact reason I do what I do with my blog and so on. My greatest frustration, when I got diagnosed, and still is, was the lack of knowledge the general public has about Parkinson’s disease, let alone people that have Parkinson’s Disease, the minute amount of funding for Parkinson’s Research that is available from the Government (compared to other diseases). I told them that it seems like it is up to us, as a Parkinson’s community, to do our research, talk about our experiences and share our knowledge with each other. Doctors can explain to us all the technical terms, which we need to hear, but support groups and companies coming to meetings to share about their equipment or medicines. Social Media is huge also.

There were a few other questions but those were the questions that stood out to me the most. It was a tremendous experience for me and as always I am so grateful for the opportunity. I did run into one lady from the FDA in the hallway and she thanked me for sharing part of my story with them today. She stated that is was refreshing to hear from the patient perspective since they basically sit behind desks reading about medicines and therapies and so on but don’t ever get to hear from the patients. That was the best compliment I could have gotten. For so many people, we need to be made real to them, if that makes sense. They just see results of studies and trials, over and over again, but to be able to be a representative of PWP’s and make us “real” and speak about our struggles and frustrations is such an honor for me. My hope is to be able to continue to bring my story, our story, to the forefront so we can see progress and make it more personal to these companies and government agency’s.

On a final note, I am planning on getting even more active on social media. I am going to get more active here on my blog for sure. I am also planning on doing more videos on my YouTube Channel and, brace yourself, I am going to start a TikToc Channel also. That one may be a little further down the road as I am very TikToc ignorant, with the exception of watching videos. I have that down! I want to do TikToc but I want to do it right so I plan on educating myself a bit before diving into that platform also. Exciting things ahead for sure! Please be on the lookout for those things happening in the near future. Please be sure and share this and please consider subscribing. It would mean a lot to me.

Peace and Love,

~Darryn

Why not us?

The second week in October I am going to go the AdvaMed Conference in Anaheim for Abbott. I will be interviewed by a doctor in regards to Parkinson’s patients advocating for themselves to their MDS or Neurologist. While I am extremely excited about this opportunity, it really got me wondering why more of these conferences don’t have us speaking at these types of medical conferences.

Sure these conferences are geared toward the doctors and so on that treat people living with Parkinson’s disease. I understand that aspect of things. They get the opportunity to learn and hear what treatments are coming out and what new technology is on the horizon that may help people us. I am sure they share about treatments that other doctors are trying or have experimented with and those results. I love that all that happens – sharing of information from doctors to doctors or medical companies to doctors. This is all so vital and necessary in order for doctors and medical device companies to continue finding ways to treat people with Parkinson’s Disease or whatever other incurable disease these doctors are treating and focused on.

I have not attended this type of conference before. That is one of the many reasons I am looking forward to attending this conference, to see what it’s all about. I have been to a few conferences FOR people with Parkinson’s and those are always tremendous. I have been able to speak to different groups within Abbott (my DBS manufacturer) and that has been very fulfilling. I have been able to share my story with people considering DBS through Abbott’s Ambassador Program as well as to some support groups and of course, here on my blog and my YouTube channel. I still hope this Blog and my YouTube channel will gain more traction, but then again maybe my brutal honesty about living with disease isn’t for everyone. I will continue being me.

Sorry for getting off track. The point of this blog entry is this, Why are WE as patients, living every damn day with Parkinson’s Disease, not speaking or invited to speak at these conferences? After all, we are the ones significantly impacted by the various treatments that these Doctors are prescribing. We are the ones that know what we are living with and how it is impacting our daily lives. That is why I am so excited to be interviewed at this conference, by a doctor , in front of other doctors.

This needs to happen more often, in my opinion. This needs to happen at the World Parkinson’s Conference and other Medical Conferences that are typically just for doctors and Medical Device manufacturers and so on. Sure, they understand the science of the disease and the inner workings of our brains and all the medical information that is out there for them. However, they don’t know what it’s like living with Parkinson’s on a daily basis. They can only know so far as we tell them. Some Neurologists and MDS’s are great at truly listening and others are not. I know this from personal experience and from listening to stories from other PWP’s in regards to their experiences with various doctors.

There should be room at the table for us as patients at so many more of these conferences. Where groups of Neurologists and MDS’s get to hear from us as patients in a setting where they should be listening to us. They get to hear a different perspective from other patients they aren’t treating.

I hope I get more opportunities like this one coming up in October. I hope I can do well enough to open the doors for more opportunities like this, to get in front of a large group of doctors and have them truly hear me. I am not saying I can speak for all of us but if I get another opportunity where I can just speak directly to doctors, then you can be damn sure I will give it all I can.

After all, Why not us?

Peace and Love,

~Darryn

Comfortably Numb……

About a week or so ago, when traveling back from Corpus Christi Texas, to pick up our 3 Alpacas, we were listening to a classic rock channel on Sirius XM. The song, Comfortably Numb by Pink Floyd came on, and for whatever reason, these lyrics from the song really hit me:

“Now I’ve got that feeling once again
I can’t explain you would not understand
This is not how I am
I have become comfortably numb”

Then I realized, this is how I have become in regards to me having Parkinson’s. Disease. I have become, in a strange way, comfortably numb with having this disease. Honestly, I wasn’t sure how to feel about that initially.

It hit me after a few days. I am comfortably numb with my Parkinson’s Disease. It is what it is, as they say, and I have become resolved to that I guess. I have become numb to it. Most people can’t even tell I have Parkinson’s Disease, most of the time. Thankfully my DBS System has worked great for me and continues to do so. However, for me it is at the forefront everyday. There are so many non visible things I deal with on a daily basis that no one sees. Yet again, I have become pretty numb to these things. It is just part of my life now. It’s who I am without anyone knowing what I truly deal with on a daily basis. I go back to the lyrics, “I can’t explain you would not understand”. Frankly only those of us living with the disease do understand. When I look “okay” or look like I don’t have Parkinson’s Disease, I often think to myself, “This is not how I am”. I am not okay. I have not been cured. I only live behind this mask of being okay, of looking okay, of being strong and not afraid. I feel as if I have to put on this strong front. That wears on me. I grow tired of being “strong” in the face of Parkinson’s. I grow frustrated educating those who will not take the time to educate themselves about Parkinson’s Disease. Yet, I have to press on and keep pushing, because I feel like, if I don’t, who will? I embrace that, for the most part, but sometimes it wears me out. A lot of times, it wears me out.

However, when the opportunity comes to educate, or speak, or encourage, or advocate for Parkinson’s disease and the various treatments, I will be there. I will talk about my experience, my struggles, my knowledge, my encouragement or whatever else I can regarding this disease. I am okay with being “comfortably numb” to Parkinson’s. I am okay with pressing on and doing what I can each day and making the most of each day, living my best life now.

Parkinson’s disease isn’t just Michael J. Fox or any other number of celebrities who have this damn disease. It could be your neighbor, or grandma or mom or dad or cousin or uncle. Parkinson’s disease is ME! I wish I could scream that from the rooftops. Not for pity or ego or recognition, but just to say that, goddamnit, regular everyday people live and navigate Parkinson’s disease every damn day. We navigate the doctors appointments, the medications, the treatments, the insurance, keeping our jobs, the cost and many other things that no one has a clue about.

Don’t get me wrong, Michael J. Fox is my hero and always will be. He has done more for Parkinson’s research than anyone, including our pathetic government. (If you haven’t watched STILL: A Michael J. Fox Movie, available on Apple TV, please do! It is incredible.) I will always be so grateful for the work his foundation does and continues to do, to find a cure for Parkinson’s Disease.

I truly doubt that a cure will be found in my lifetime. There have been so many promising studies and so called breakthrough’s that look promising only to see them go nowhere. I have gotten to the point that I hesitate to get excited about possible cures. I get more excited about treatments and medical devices and medicine that helps us live with this disease at this point. I really am okay with not seeing a cure in my lifetime, at this point. It doesn’t bother me. I am okay.

“Now I’ve got that feeling once again
I can’t explain you would not understand
This is not how I am
I have become comfortably numb”

As always, Peace and Love

~ Darryn

Struggling……………..

As you should know by now. April is Parkinsons’s Disease Awareness Month. If you don’t, shame on you. That means you aren’t reading my blog, thats for damn sure. Anyway, I have been posting fairly regularly on Facebook regarding certain facts and information about Parkinson’s Disease in order to hopefully educate people more and more about this disease. Typically I will post something daily but have just not been feeling it this month in that regard. I honestly wonder if people give a shit. Parkinson’s disease is not breast cancer where the entire nation wears pink for a month (which it absolutely deserves). Parkinson’s disease is not in the realm of other cancers to even some other movement disorders such as MS and so on. I feel like it is what it is at this point and I will just continue doing my best to educate people that actually want to learn. I have always dedicated my April blog post to educating people about this disease and include some personal experience as well. This time it’s different. This time it is very personal.

As I have talked about in the past, Parkinson’s causes many of us to speak much softer than we think we are, thereby causing most people around us to ask that we repeat ourselves. I do this quite often without realizing it, and my wife constantly asks me to speak up! We joke and say I am speaking “parkinese”. However, in the past 6 months my voice has gotten even worse. I sound like I am constantly hoarse, or have a sore throat. My throat feels very strained if I have to talk a lot or when I sing. Sometimes I flat out lose my voice but that is rare. I reached out to the Parkinson’s community to seek some advice and as always I got some great advice. Two things I was told, do research on the vagus nerve and make an appointment with an ENT. I started looking into the vagus nerve and how much it controls our body from the brain to the stomach. It has various off shoots that effect other things such as vocal cords. Of course people with Parkinson’s already deal with the lack of dopamine in our brains which in turn causes our brains to “misfire” and communication between the brain and our muscles are interrupted causing tremors and slow gate and so on. It also disrupts nerve communication. The ENT numbed up my nose and stuck a scope up my nose and looked at my vocal cords. She didn’t see any damage but did notice some acid reflux which could cause the hoarseness but I don’t experience a lot of acid reflux so I am leaning toward a vagus nerve issue due to Parkinsons’s disease. In this case, it is causing me serious speaking issues. Do yourself a favor and research the vagus nerve and Parkinson’s. There is so much more I could write about on the subject of the vagus nerve, but thats for another time. I go back to the ENT in about 5 weeks to get checked again. The ENT told me to let my MDS know, which I will do this week. Then I will see what is next. More than likely some speech therapy and voice exercises. I will do whatever I need to do in order to at least be able to continue to talk. Even if I lose my voice, I assure you, I will always find my voice for myself and the Parkinson’s community.

As some of you may or may not know, people with Parkinson’s disease are much more susceptible to skin cancer. I know I have briefly mentioned that before. I had a very small mole removed from my nose about 4 to 5 years ago. It was cancerous, they got it in one shot. I really didn’t think much of it as it was a small bump/mole on my nose that had been there many years. About 2 years ago, I had two other moles removed from my head and neck area but they had been there for many years and they were just a nuisance more than anything and turned out to be nothing. In the last 4 or 5 months I had what I thought was a mole pop up near my right temple. This one was different, it would itch and if I picked at it, which I would do, it would not heal up. Even if I left it alone, I just felt something wasn’t right about it. Of course I had it checked out by my Primary Doctor and was immediately referred to a dermatologist. I went to see the dermatologist about a week ago, they removed the mole, along with another one on my left ear and sent them both off for biopsies. She also did an entire body check of all my moles. I was happy to know that she understood that me having Parkinson’s disease put me at a higher risk of skin cancer. I am always impressed when doctors outside of neurology know about Parkinson’s disease and it’s effects on us. This past Thursday, the dermatologist called me on her day off from her cell phone to tell me that the biopsy came back and it was positive for squamous cell carcinoma and that they wanted to see me as soon as possible to have surgery and remove the remainder of the mole. She stated that the sample they took had some abnormalities and wanted to take care of it. Of course I was on board 100%. She then told me they would refer me to an Oncologist to get a scan to ensure it has not spread anywhere else. Of course that freaked me out a bit. Even though the mole I got removed from my nose years back was the same, it was very small compared to this one so once they took it out, I was done and moved on with my life. Naturally I will follow the doctors and everything they recommend. They are the experts and while this is very treatable, it still freaks me out a bit. People with Parkinson’s Disease are almost twice as likely to get skin cancer on the head or neck area. This is where both of my cancerous moles have developed. This second one seems so much more serious. I asked the dermatologist how worried I should be. She put me somewhat at ease as she said that worried might be a bit strong, but I should definitely be concerned. She was concerned due to the abnormalities the biopsy showed and that is why they were taking all these precautions by referring me to an oncologist and that I would be seeing her (the dermatologist) once every 3 months to continue routine checks. I go in this coming Monday morning at 8 AM to have the remainder of the mole removed. The doctor will remove layers and check each layer until he is 100% sure it is completely removed and then sew me back up. The dermatologist did not seem concerned that it has spread beyond this one spot but mentioned that it can wrap itself around nerves, depending on how deep it goes. I will update everyone once I get the oncologist referral and deal with the scan and so on.

I titled this blog entry “Struggling” because the fact is, I am struggling with this fucking disease. I shouldn’t be, I know exactly what it is, I know exactly what I am up against, and I have a pretty solid idea of what my future will be. On April 22, 2023, I will hit my 9 year “parkiversary” of when I was diagnosed. When I was diagnosed and about a year in, my hope was that I wouldn’t need DBS Surgery until at least year 8 to10. I made it 4 1/2 years and new it was what I needed. While it has obviously been life changing, I can’t help but wonder and worry about my progression. What if I can’t speak in 2 or 3 years? I have read about people with Parkinson’s in their later years not being able to speak and how lonely their world becomes even when surrounded by loved ones because they can’t take part in conversation. I don’t know that will happen but it’s a real possibility. Do I even worry about that? What if I continue to have to keep battling skin cancer?

I really try not to dwell on the future, but this past week had been a double whammy because of Parkinson’s disease. It has been a struggle. I just haven’t been able to not worry about the future for a few days now. What I would give to have one goddamn day where I didn’t have to think about Parkinson’s disease but that is just not my reality. As this disease progresses and more symptoms pop up as time moves forward, Parkinson’s disease just continues to spit in my face. It does that to all of us fighting this. I feel pretty good about getting through what is facing me now. I know the skin cancer can be removed and I know I will have to take some voice therapy classes for my speaking. I am still going to live my best life each day and do my best to make the most of those days. This past week has been a bit of a gut punch, It has set me back some in trying to live my best life each day, and it has been one hell of a struggle. I think I am allowed to struggle some days. I am allowed to acknowledge that I am struggling. I am not looking for a pity party or useless prayers. I just have to get it off my chest. I have to express it and while I am doing that, hell I might as well do it here where other people can continue to learn about Parkinson’s disease and what we go through. I guess what better time to have these two struggles hit me than in April – Parkinson’s Disease Awareness month.

Rest in peace John Humphries. Your Positivity and Determination will be missed. The PD community lost a giant.

~Peace and Love

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