Dan Glass on DBS and Advocacy

An interview with Dan Glass on Deep Brain Stimulation (DBS) and Advocacy on December 15, 2023 by George Ackerman, Ph.D, J.D.

Please tell me a little about your background.


In looking back on my life, as I think about who I am and how Parkinson’s disease changed me, I have come to look at my current state in a different way. Here, life is a series of dates. For instance, I was born on August 26, 1971, but I was told that the tremors that I had been dealing with since autumn of 2011 were most likely (90%) Parkinson’s on September 27, 2016. On November 1st, this was confirmed. I refer to that day in September as my “Avalanche Day,” in that it was the moment of realization that a person gets hit by life and has to choose what to do next. This term is derived from a mix of the experiences that Cory Richards survived during a mountain-climbing expedition and the concept of Alive Day, which is when soldiers in war are injured and then healed in a way that allows them to have a second chance of life as someone new.

After something like this happens, nothing is ever going to be the same again. The key is to find something meaningful to do with the situation we are handed. For me, I made a couple of choices after this that brought me 180° away from where I was.

  1. I realized that empathy is essential to all that we as a people need to be. When I cancelled the class that I was set to teach that night, my students were really understanding of my situation. This made me realize that I needed to be that way for them, too.
  2. After coming to understand more about what Parkinson’s was, something I didn’t know when I was told what was about to be my new life definition, I was scared and wanted to be miserable. Instead, I went home and watched the movie Dodgeball with my wife Heather. Life was too short for that.
  3. The next day that I woke up, I told Heather that I would be an advocate for Parkinson’s. In the beginning this meant expressing my journey as it happened. As it evolved, it became a journey into mental health, survival stories, and Parkinson’s experiences. For some people, PD advocacy is finding a cure. I’d really like to believe that something is out there that can fix this, but in much of my 7 years with this condition named as something more than tremors, my outlook has involved to finding inner strength and life’s meaning. Here, I see that if all Parkinson’s is for me is tremors, dystonia, dyskinesia, anxiety, knee problems (a Baker’s cyst that dyskinesia brutalizes), bradykinesia, and all the rest of the symptoms that try to kick my butt on a daily basis, then this is terrible. However, if I can help normalize the abnormal situation that I and someone else share, then I have made a difference.


How can others also become advocates for awareness?


Join groups and express yourself! Only you can decide how open you want to be with what you have going on in your life with where you’re working and your own personal need for privacy. Nobody can tell you how to do this, much less someone who doesn’t know you.

In the end, you know what time, money, and effort you have to stay active and loose physically. It would be great if we could all join a gym or go to support groups. However, we have families, commitments, work, and finances that get in the way of the idea. Just remember to never stop being you and staying in motion. An object at rest remains at rest. Fortunately, I am able to work and I am able to walk my dog Sparky, though not as much or as far as I want. Nevertheless, I am still in motion. Hopefully, you can still walk your walk, and you have a support system to encourage you to do this.

Here, you can be your own support system, and you can be there for someone else, too. Never discount anyone else’s struggle or talk smack on them for expressing their success in the face of this or any other condition. Sometimes, letting the world know we can still do things is all we have when the crap sandwich of Parkinson’s seeks to take it away. Thus, to Jimmy Choi and all of the other PD athletes out there, keep pushing yourselves and inspiring us to do whatever we can, however we can.


Can you tell me more about your journey?


For the early part of my time with Parkinson’s, I created a personal blog to express my story and to advocate, whatever that would mean. (last updated in 2019 when I ran out of time


After doing this for over a year, I was picked up to write for which is run by Health Union. They are an online collective of people who experience many different conditions, either as patients of caregivers. I have been lucky to share my experiences with the world because of them. They still publish some new articles, but budget cuts forced the company to make changes to some of their subsites.  Here, they have a ton of information in articles that are written by many talented writers, but they are not publishing new stuff as regularly. That said, new to you is still new. Even if you’ve read the old stuff, it becomes more valuable as you find yourself in a situation that needs to address this concern.


For example, on day 1 of PD, you might find that you don’t need to know about aspiration pneumonia, deep brain stimulation, advanced healthcare concerns, or dementia. Your main worry might be just learning about dopamine and starter meds. Like any good reference book, you can always  go back for that other stuff later (and more!), (a history of my articles there).


While sitting down to this discussion, I went through “my back pages.” Here is an interview that I did with them. I thought there was another 1, but I guess it’s not there anymore. To be honest, I think this sums up pretty much of where I came from, as opposed to rewriting it from scratch or making you read through a book size history. 



What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


Prior to Parkinson’s, I was a teacher. I also always loved to write. After Parkinson’s, I eventually left the classroom to become an advisor in 2018. Despite having felt drawn to teaching and being in the classroom since 2001, I am much happier as an advisor than I ever was a teacher. Grading homework, classroom management, and constantly having to be “on” in general education classes isn’t near as inspiring as sitting 1 on 1 with someone you can give everything to.

Prior to diagnosis, I had published a couple of paranormal books. I still have ambitions of finishing follow up works I started on, but life is about time, energy, and priorities. As a result, when I currently write, it tends to be about Parkinson’s or life.


I love to travel and hike, but time, money, and effort get in the way, especially after going through deep brain stimulation surgery September 5th, 2023. I still love baseball and card collecting, reading, listening to music, and cheesesteaks all too much. I wish I was able to spend more time with family and friends, but lately, post-surgery, I’ve been very blah. I know t hat’s not a technical term, but it describes the nasty side of all of this.


I know that this surgery was the right procedure at the right time by the right people, but between reprogramming and eliminating dyskinesia to reduce the effects on my knee (the baker’s cyst), I feel very frustrated and impatient. Prior to deciding to do the surgery, I never expected any relief, and then when the surgery came, I thought I would get more sooner, but alas, getting used to the device takes time. This has been very emotional for me. I still do my best to run on stoicism, but since the cyst began in July, I’ve been more mentally and emotionally exhausted than I have in my entire time with Parkinson’s.


I know the best is yet to come, and I still feel Parkinson’s made me a better person when it made me confront the negative things I needed to remove from my life. Now, I just need to push me through this part of the ordeal to get back the years of physical opportunities I want to take back from its clutches.


What events do you participate in?


I present to people where and when possible. I’ve done 1 presentation for Tower Health in Reading. I’ll do another in the new year. I’ve also presented to students at Open BioPharama on several occasions by video. These tend to be on what it’s like to live with Young Onset Parkinson’s Disease.


I would love to participate in more of these.


How does this also assist the caregivers?


I try, where possible, to express my wife’s experiences in all of this or encourage Parkies to be thankful for what we have been given by them or let them know where we need them.


How can someone get in touch?


How can others also become advocates for awareness?


Join groups and express yourself! Only you can decide how open you want to be with what you have going on in your life with where you’re working and your own personal need for privacy. Nobody can tell you how to do this, much less someone who doesn’t know you.


In your opinion what is the key to effective advocacy? 


Being open and honest. Keeping it real. This is a personal choice on how much we can and are willing to share. Be true to you and protective of your need for privacy. Keep in mind, I might seem like I share a lot, but I have my limits. Right material in the right place for the right audience.


How can we better fundraise to support a cure for Parkinson’s?


Reputable organizations like Michael J Fox Foundation. Direct donations is what I do. As with any other money, you know what you can afford. If you aren’t comfortable telling people to give money, then advocate in other ways. Friendship, attention, and a listening ear can be just as good as money.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?


Dog walking, reading philosophy, living my life. As I said earlier, I have had a baker’s cyst on my left knee since July, and that, as mixed with dyskinesia, has made it tough to hike like i want to, let alone what I used to do, even with Parkinsons. Working limits my ability to do organized activities, but I advocate them where possible to whoever can do them.


Why should people who don’t have Parkinson’s care about this? 


Empathy and community. It sounds simple, but we’re all a team with the possibility to positively affect one another. You may not realize this, but there are many Parkies out there. Being kind to the struggles of others makes a difference. Everyone is going through something. Be kinder than necessary. We’ve all needed and not gotten attention when we needed it. We’ve also all failed to give this when other people needed us. It’s time to reverse ourselves and be the example we need to be and we need from other people.


Have you had any family members or relatives affected by Parkinson’s disease?


My great grandfather on my mom’s side had paralysis agitans (the early name). I have other neuro issues in the family on both sides, like Alzheimer’s and dementia as well.


If you had one song that would tell us more about you or represent your life, which song would it be?


5 Years by David Bowie. “I never thought I’d need so many people.”


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


Something by Michael J. Fox… everything he says is right on. You can’t go wrong with him. That said, if you want something heavier, I’d go with Viktor Frankel’s Man’s Search for Meaning, Harold Kushner’s When Bad Things Happen to Good People, Laurence Gonzales’ “Deep Survival” & “Surviving Survival,” Albert Camus’ “The Myth of Sisyphus,” any of Ryan Holiday’s stoicism books, and James Stockdale’s paradox (You must never confuse faith that you will prevail in the end – which you can never afford to lose – with the discipline to confront the most brutal facts of your current reality, whatever they might be). If you want really intense self-motivation, then I’d go with Mark Twight (extreme mountain climber).