Is Revealing My Parkinson’s Diagnosis Career Suicide?

Work is extra stressful with Parkinson's

When I was diagnosed with Young-Onset Parkinson’s Disease in 2011 at age 33, I was full-swing into my career as a media studies professor in California. Up until that point, I had been writing for journals, speaking at conferences, and applying for tenure-track positions. That all changed once the symptoms became too much for an ambitious young academic to bear.

I suddenly went from outspoken and involved to being someone who barely had the stamina to make it through an 8am lecture. I thought my career was over. I decided I would need to disclose my diagnosis since it was obvious that something was wrong. To my school’s credit, they sought to accommodate me by switching me to teaching online courses. I knew my dream of becoming a full faculty member was likely over, but at least I could still teach and write.

While I was able to continue working in a more limited capacity, many of my friends in the Parkinson’s community have not been so lucky. My support groups are filled with examples of people diagnosed in their 40s and 50s, and asked to retire or who mysteriously became the only victim of an unplanned layoff. This type of discrimination is illegal but proving it is extremely difficult and often not worth the stress to someone with serious health problems.

By 2015, I had sufficiently grieved the loss that came with learning I had an incurable chronic illness, and I thought it was time I tried to be more of my old self again. For me, this meant fighting back against the illness – staying fit and healthy and trying to live my best life. It might come as no surprise to those who know me that moving forward also meant using my experience in a meaningful way to help others; in other words, advocacy.

In order to be an advocate for people with Parkinson’s – to raise awareness of the illness, support efforts for a cure, help others with the illness, and help develop empathy in those without the illness – I knew I would need to go public with my diagnosis. I’m well aware that anything published on the internet is likely to be up for all time, so this bears the question: Am I sabotaging my own future by so publicly revealing my diagnosis and being so readily defined as someone having a serious illness? Will future employers search my name online and find out I have Parkinson’s? Actually, I certainly hope so. Here’s why.

  • I have Parkinson’s and I can’t hide it. What is the use of keeping my illness private if it is quite literally written on my face? Hiding it could make sense if I lived in a small town, on a farm, by myself, and wanted to be left alone. But I don’t live on a farm. Instead, I live a somewhat public life through my writing, my teaching, my advocacy and political work, and on social media. If we meet in person, the elephant in the room, so to speak, is out of the way, and we can move forward immediately.
  • Future employers can see how hard I work on things I’m passionate about. Everyone seems to want to curate and control their online presence these days, and for good reason. Employers are known to look at social media to see what their applicants and employees are sharing publicly. Searching my name will return results about the book I’m writing, the app I’ve written, the website and news feed I distribute, and interviews I’ve given. Wouldn’t you want someone like me on your team?
  • Instant recognition. Back when I was trying to hide my illness from the public, I had an experience that really affected me negatively and changed my thinking. In 2013, I decided to apply for the MBA program at the University of Washington. Not telling them about my illness, I was invited to their group interviews – essentially, I looked good on paper, and they wanted to know me in person. I hadn’t started taking medications at that time, and after struggling with stiffness and slow movements, I was later rejected from the program because they said I seemed “bored and disinterested.” I tried to explain my illness to the program directors and asked them to reconsider but they would not. The next year I applied again, making my illness clear in every essay and during the group interview. This time I was accepted and eventually was voted by my class as a class representative, won a social entrepreneurship competition and was well respected by my peers and by the program officials. The bottom line: without sharing my illness, I never would have even gotten my foot through the door.
  • Living an authentic life. I am very much into living an authentic life. I consider myself an honest and loyal person, someone who values fairness, and who wears his emotions on his sleeve. I’m not interested in hiding something like a major illness from the world. For better or for worse, Parkinson’s and I are connected, likely for life. Everything I do in life will be viewed in light of the fact that I have Parkinson’s. In many ways, this brings purpose to everything I do. For example, I have run for public office in the past, and if it seems appropriate, I may so again. The people who are my would-be constituents must know that having this illness, I don’t take on obligations or projects willy-nilly. Instead, I ask myself “can I make a difference,” and only commit if I know I can. If I run for public office again, it would be with the fervent desire to work with purpose, or else I would see no point. The same is true for anything I do in my life.

I believe that revealing my illness to the world will do more good than not. While I’m worried that I might be underestimated by someone who doesn’t understand Parkinson’s, I’m not afraid to be labeled as someone with an illness – having Parkinson’s has led me to help inspire thousands of people struggling with this disease, so I wear it as a badge of honor.

Now that’s something worth revealing.

Join our Parkinson’s Warrior community on Facebook!

Buy the Parkinson’s Warrior book on Amazon!

Parkinson’s LifeKit is available now on the App Store.

Does CBD Really Work for Parkinson’s?

cod oil is sld everywhere, even gas stations

There has been a lot of excitement around the possibility of using CBD – the non-high-inducing other half of marijuana – as a natural treatment for Parkinson’s. People with Parkinson’s online have long celebrated CBD as a way to treat a variety of symptoms related to the disease. And now that CBD is legal in most of the world (read: not everywhere yet), and as more and more people come to realize that CBD is not the high-inducing substance in Reefer Madness, more people are trying it to calm symptoms.

Does it work?

The real question is, you guessed it, does it work? Well – officially – the jury is still out on it. When I say officially, I mean science – real science, backed by real experiments and using the scientific method. Why is this important? Because in my 10 years with Parkinson’s, I’ve seen this before. Someone says, “I’ve tried this and it worked for me,” and then everyone piles onto the XYZ train and all sorts of claims appear, and snake-oil salesmen are quick to sell us what we think we need. I’ve seen it with Low Dose Naltrexone (also known as LDN), supplements like Vitamin D and Fish Oil, and in the end, the effects of these on Parkinson’s were inconclusive at best.

Drugs work, though

When someone is just diagnosed with Parkinson’s, often the tendency is to not take medication at first and explore all non-pharmaceutical options first. This is a great strategy – long term use of Carbidopa/Levodopa leads to severe dyskinesia (think Michael J. Fox). So it is understandable that you would want to delay taking pharmaceuticals for as long as possible. However, it should be made clear: medications DO work. If you’re looking for instant relief from Parkinson’s, there is nothing like a dose of Carbidopa/Levodopa to alleviate symptoms. So there are tradeoffs here, just like with everything in life.

But so many fans can’t be wrong!

People who use CBD to treat everything from dyskinesia to tremor and stiffness tend to swear by it. It works for them. Again, this is one person who has had one experience. We need a lot more research before we definitively say that CBD helps with Parkinson’s. The cynical Parkinson’s patient inside of me says that if CBD really did something to our bodies and minds, we would all know about it and big pharma would be rushing to cash in. Instead, CBD is on the shelves at pharmacies with other supplements that carry the “claims not supported by the FDA” disclaimer. On the other hand, CBD’s cousin THC is outlawed in so many jurisdictions BECAUSE it is a powerful substance that alters body and brain activity.

As with everything, a bit of skepticism goes a long way

This article is not here to say “don’t waste your time and money on CBD.” Actually, quite the opposite; try CBD and see if it works for you. It may work, it may do nothing, or it may cause you to experience the Parkinson’s Placebo Effect – thinking something is working because you want it to work, hence boosting dopamine levels – until you crash back down to earth.

You can’t manage what you don’t track!

The best way to see if CBD is working for you is to track your symptoms over time while using it. I would, of course, recommend using the Parkinson’s LifeKit app to track your central nervous system, cognition, mental health, and tremors and dyskinesia over time to see if CBD is having a real effect. A week would be too little time, thanks to the placebo effect, but a month or even two is the best way to see if CBD is working for you.

The Dread of Diagnosis

a doctor tell a patient that they have parkinson's

Here’s a story you may relate to…

You have been feeling some minor shaking or a little bit of stiffness in your hand or in just a finger for a couple of months now. You initially write it off as stress, getting old, or maybe you pushed yourself too hard at yoga. However, it’s now more than just a mild nuisance; it affects your typing and your significant other has made a comment about it, adding, “maybe you should get it checked out.” You visit your doctor, and after a thorough check-up, your worst fears are confirmed: “we don’t know what it is, but it’s probably stress, or you’re getting old, or maybe you over-worked your hand in yoga. Take some ibuprofen and let’s check it again in six months.”

Sound familiar so far?

This is the experience for many of us with Parkinson’s. Parkinson’s is not a disease like Cancer or Diabetes. It cannot be definitively diagnosed with a scan or with a blood sample. Although there are clues in the blood and a scan can show some reduced activity in the areas that the disease affects, There is no magic bullet diagnosis tool (not even Parkinson’s-sniffing dogs or the so-called “Sinemet Challenge.”)

This leaves us, the soon-to-be-diagnosed person with Parkinson’s a lot of uncertainty, especially when stage one Parkinson’s mimics other illnesses that could be much worse (MS, ALS, Huntington’s). Our doctor finally sends you to a neurologist or a movement disorder specialist, and this person can usually give a likely diagnosis of Parkinson’s (or at least Parkinsonism – the symptoms themselves) within an hour. They have one job – to recognize and treat this disease.

You go home, you cry, you mourn the future you could have had and now you most certainly will not. You tell your family, you tell your friends, you do your best to hide it from people at work. But hey, you’re hip to the new therapies. People online say exercise and diet are critical… you can beat this thing! You sign up for yoga classes and boxing lessons. You adopt the Paleo diet and add fish oil and curcumin to your daily supplements. You think you’ve found something millions of others have missed. You’re going to beat Parkinson’s. You’re doing better already!

This is grief talking; denial, to be exact.

There is no cure for Parkinson’s. Even if you do everything recommended, you’ll still have good days and bad days, new symptoms that seemingly appear and disappear at will. You do not know how you will progress, and no… despite what you may have heard, there is no cure.

Sounds pretty grim, doesn’t it? Well, for most of us with this illness, this is how we started out. We all were scared. We all felt alone. We all mourned the future that would never be.

But something happens along the way…

You realize that Parkinson’s is not MS or ALS – you will not die from it. There are people who were diagnosed in their 60s who lived into their 80s and 90s. I know some of these people, at my support groups in person and online. Most of these people took some time to mourn, and then they picked themselves up and made an active decision to continue living life.

That’s the thing with Parkinson’s. You can continue living life. Travel, work, and be yourself. Yes, you will get tired more quickly, you may need voice dictation software for your computer, and you may need to slow down, but you can live a full and happy life, even with Parkinson’s. You may even find a new life purpose: advocating and raising awareness – sharing what you know with others. Many of us move on to this step in our grief cycle after we have arrived at acceptance.

Ultimately, just like Parkinson’s itself, everyone will experience those first few months of symptoms differently. But find solace in knowing that many have traversed this path before you. You are not alone. Be scared, but don’t let the fear derail your life. Allow yourself to open up to people who want to help you get past this initial jolt. One day, you will pay it forward for someone else.

If you’re in search of a group of very accepting people with Parkinson’s, join us on Facebook and come share your story.

What’s it like to get DBS surgery?

deep brain stimulation for people with Parkinson's

In December 2018, I had Deep Brain Stimulation surgery to alleviate symptoms of Parkinson’s disease. It was quite the experience, and my family and friends were in awe, not only of how I handled it but also of the transformation afterward. I would like to take you through a timeline of my surgery so you can get an idea of the process. This was done at the AMC hospital in Amsterdam, so your experience will vary.

deep brain stimulation

September – three months before the surgery

I went into the hospital to have an evaluation. The questions to be answered were, am I healthy enough for DBS surgery, and will I benefit from the surgery. This was a two-day experience and I had to stay at the DBS Center overnight. I was lucky enough to have my own room, but many people had to share rooms with others. During these two days, I had:

  • A cognitive test, testing my logic, memory, and spatial abilities through a variety of written tests. Some people who go through DBS lose some cognitive ability, so they wanted to make sure my cognition could take the IQ hit.
  • A psychiatric test, testing to see if I was sane enough to go through DBS. The reasoning here is that some people go through behavioral changes after surgery – similar to the effects of dopamine agonists. They wanted to make sure I wasn’t suffering from severe depression, which could also increase after surgery.
  • A physical test, testing my OFF neurological exam to an ON exam. They want to see just how well carbidopa/levodopa worked on me since this would be an indicator of just how well the surgery would improve my symptoms.
  • A visit with the cardiologist to see if my heart was healthy enough for surgery. They took an ECG and reviewed my heart medications. They gave these results to the anesthesiologist for the final test…
  • A visit with the anesthesiologist, to see if I was healthy enough for full anesthesia.

About a week after these evaluations, I got the call that I had been accepted. The next step was to meet with the surgeon.

Late September – about two and half months before surgery

I went back to the hospital to meet with the person who would be performing the actual surgery. This was a meeting in his office, and he explained to me every step of the surgery. I was already aware of the entire procedure since I had read a fantastic book about it. This was also the time to make a decision on the tech and procedures to be used.

The hospital had pioneered a new method of performing the fully asleep DBS, and their own research had shown that it was just as effective in placing the leads as awake DBS. I, of course, opted to be asleep. Next, I had to choose the technology. They could implant all three brands of stimulators (Medtronic, St. Jude, and Boston Scientific), and they recommended the Boston Scientific since this is what they have had the most success with. I agreed and went for the Boston unit (which also has new steering technology to help avoid problem areas in the brain when programming).

Finally, the stimulator – would it be the non-rechargeable battery that needed to be changed every couple of years or the rechargeable one with a potential 25-year lifespan. I was used to charging my phone every night, so I knew I would never forget to “charge myself”, so I went with the rechargeable battery pack.

In October, I received a call from the DBS Center.

My surgery would be on December 6th. I was so excited! I would finally have some relief from this relentless illness. I booked flights for my family and bought a couple of blow-up mattresses.

With just a couple of days until surgery, the hospital called me to confirm my surgery and told me what to take and what not to take of my medications. I should not take any Parkinson’s meds, but I should take everything else.

December 5th – the day before surgery

I arrived at the DBS Center in the afternoon with my family, and I was immediately assigned a room. Again, I had the good fortune of not having to share a room with someone else. The next several hours consisted of various checks, essentially checking my vitals to make sure I was on track for surgery. It felt like the countdown to a rocket liftoff! My family stayed until closing time (around 6pm), at which point I had to fight to not have the catheter inserted that night while I was awake. This is what scared me the most, to be perfectly honest, and I convinced the nurses to insert it when I was asleep right before surgery. I had dinner, watched some television, then texted with my wife and went to sleep.

December 6th – the day of surgery.

I was up by 6am, and my family arrived at around 7am. I took my heart medications, and then it was time to roll me into surgery. I said goodbye to my family and several nurses rolled me down a floor to surgery prep. I met the anesthesiologist and surgery nurse, as they prepped me for surgery. I was lying down when I rolled into the operating room. About a dozen people were there, each prepping their respective areas. I saw the surgeon, who asked me to verify my name and what I was there for. I said, “My name is Nick, and I’m here to get some holes in my head!”. Everyone laughed as they continued prepping.

Finally, the anesthesia mask went on my face, and they told me to breathe normally. The mask made breathing a little difficult, maybe I was starting to panic or maybe it really was hard to breathe in the mask. None of that mattered though since a minute later I was out like a light.

December 6th, later that afternoon

I woke up disoriented in the recovery room, where a nurse was doing something similar to what was happening before surgery. I wondered out loud, “where am I?” and “did they do it?” I honestly cannot remember a moment of the actual surgery and wondered if it really happened. After about 30 minutes I was rolled back into the bedroom, where my family was waiting for me. My doubts persisted in a medicated haze, and I asked them all if it was really done. I emphasize this part because the surgery itself is the scariest part for most people, but it was like a blip in my consciousness and I don’t remember a thing.

During surgery, the doctors had implanted a lead in each side of my brain (called a bilateral STN surgery), and a stimulator was implanted in my chest. The wires in my brain were routed down my neck and plugged into the stimulator (which is on the right side, in case I need a pacemaker someday in the future).

December 6th, later that night

My family realized I was completely out of it from anesthesia and from all of the medications they must have given me, so they let me rest and sleep the rest of the day. That night, the painkillers began wearing off, and I could feel the discomfort of the wounds on my head. I could not sleep at all that night, partially because of the discomfort, and partially because I couldn’t get comfortable. I tried to sleep as much as I could, but probably only slept for an hour intermittently. I watched television instead. The nurses would come in every couple of hours to check on me, and at around 6am, someone came to remove the catheter. Surprisingly, it didn’t even hurt… I was probably scared for no reason.

December 7th – the morning after

My family was back by my side and I was fully awake and ready to go home. I ate breakfast and by noon I was discharged from the hospital. The nurse offered me opioid-based painkillers, and I refused and said I would stick to Paracetamol (Europe’s Acetametaphine, Tylenol). As soon as I got home, I could begin feeling the surgery incisions and so I took two Paracetamols and fell asleep. I continued taking two Paracetamols every 4-6 hours and going back to sleep for the next couple of days. I just could not keep my eyes open. I wasn’t in pain, but rather I had discomfort from the under-skin routing of the cables and from the chest implant. Over the following days after surgery, I would develop black, swollen eyes. The painkillers kept the pain at bay, but I looked monstrous.

Mid-December – the honeymoon period

Most patients who go through DBS note a period after surgery of about 7-10 days in which your brain is producing more dopamine and/or healing from the trauma of brain surgery (likely both are true, but no one knows for sure), and you are feeling great – almost Parkinson’s-free. I definitely felt this, and it lasted for about 10 days. I felt like I had taken my Parkinson’s meds, though I hadn’t, and when I would take them, I would get severe dyskinesia, which was a sign that I was overmedicated.

December 18th – time to get turned on

Just 12 days after surgery, I was scheduled to have my stimulator turned on (insert inappropriate innuendos here). I’ve read stories online that talk about having to wait a month or month and a half to get turned on, but things are more efficient in the Netherlands, I suppose. The swelling was gone, but my head still felt raw and numb in certain areas. None-the-less, I met with the DBS nurse (along with my wife, and my mom, who wanted to stay in town for the lighting ceremony), and she connected me to a device that itself was connected to a Windows Surface. For the next three hours, we tried different leads at different settings to determine our initial configuration. Things would likely change later, but we needed a starting point.

After three hours, we had determined the initial configuration, and I was given the stimulator remote. I was allowed a certain range to turn up the voltage on my unit at the current program. I have since noticed having to “turn myself up” every few weeks or so. I’ve been told that this is normal, and I could continue going up until I’m at a stable current and don’t get dyskinesia.

Overall, the DBS experience has been a great one, and I would do it again in a heartbeat. I can turn in bed, walk quickly (and even run briefly), and type quickly and for a long time (with an average of about 30-wpm, my top was 100-wpm, but I’ll take it!). It isn’t all roses and puppy dogs, however. Surgery only worked on physical symptoms, so things like on-going fatigue (my most significant current symptom) and feeling cloudy are still there. Getting holes in your brain also doesn’t come without a cost – my short term memory and recall have been affected and remembering something my wife just told me can be difficult (or is it just an excuse? Just kidding).

With all of the downsides, I would still do it again and again. If I had to have surgery every six months for the rest of my life in order to feel how I do compared to how I did, sign me up! Luckily, I don’t have to have surgery again until a cure is found for Parkinson’s, at which point I can have the unit and cables removed.

Until then, I will keep moving forward. I hope you have found this article useful and that you will decide to go forward with surgery if you are a candidate. I’m a believer, and you will likely be one as well.

Are you a Parkinson’s Warrior?

people with parkinson's doing yoga

Ever since I developed this website, people have asked me: “what is a Parkinson’s Warrior,” and “How do I know if I am one?” I’m here to dispel any myths about what it takes to be a Parkinson’s Warrior and lay out the truth about not only surviving but thriving with Parkinson’s.

What are some myths about being a Parkinson’s Warrior?

Myth #1: “You must lift weights, be buff, and be in amazing shape to be a Parkinson’s Warrior.”

This is absolutely not true! Being a Parkinson’s Warrior is all mental, and not at all physical. While it’s true that Parkinson’s Warriors are likely to be in better shape than non-Warriors, but that’s not a requirement. It’s all about approaching life with the right attitude.

Myth #2: “You must have a very discerning diet, eat lots of plant-based foods, and drink lots of juices to be in your best shape.”

Again, this is not true! While diet is important for People With Parkinson’s, everyone has their own requirements and you should not go overboard with your diet. Extremes are bad, especially if you can’t maintain consistency over a long period of time. The occasional (even daily) juice is fine, but make sure you are meeting all of your dietary needs for personal health.

Myth #3: “I had a bad day, and feel like giving up. I guess I’m not a Parkinson’s Warrior.”

Stop putting yourself down! We all have those days that we just want to stay in bed and shut out the world. It’s ok. This is a part of the disease and each day will be different. Having a bad day, a bad week, a bad month… is all normal. The important thing is staying strong, and convincing yourself that this too shall pass and you are willing to move forward when the opportunity presents itself.

So what ARE the traits of a Parkinson’s Warrior?

  • Parkinson’s Warriors accept that their bodies are no longer capable of doing what they used to, and they adapt to the new reality – use special eating and walking devices, take their time and don’t feel rushed by the world around them, and yes, ask for help when they need it!
  • Parkinson’s Warriors do their best to stay positive and don’t let the disease take over. Parkinson’s is tough, and having to deal with it day in and day out is tough. But you know what’s tougher? YOU! You may not be able to control your body, but you can control your mind.

  • Parkinson’s Warriors always move forward. Even when life gets them down, they’re willing to put the bad things aside and keep living, for themselves, for those who love them, for the world, which needs them and their brilliant energy.

So are you a Parkinson’s Warrior? If you’ve read this far, I would guess YES!

Join us for discussions and inspiration on Facebook.