Parkinson's Warrior

I’m proud to announce the release of my new book, Parkinson’s Warrior: Fighting Back and Taking Control. Here is the description!

Nick Pernisco was busy with a promising academic career when a Young Onset Parkinson’s diagnosis at age 33 upended his carefully laid plans and almost derailed his life. This is the story of how he learned to cope and thrive – through education, self-care, and the power of adopting a warrior mentality.

PARKINSON’S WARRIOR provides information and inspiration for all People with Parkinson’s to live a better, happier, and healthier life. Through the lens of his experiences and learnings, Nick shows you how to move past grief to fight back and take control, so you too can become a Parkinson’s Warrior.

From the introduction:

There are at least one million people diagnosed with Parkinson’s disease in the United States and up to 10 million around the world. This means that, including loved ones, there are more or less 100 million people affected by this disease worldwide. You may be one of these people.

Perhaps you have just received a diagnosis, or perhaps you have known for years. Perhaps your husband or wife has been diagnosed with Parkinson’s, or perhaps it was your father, grandfather, mother, grandmother, son, or daughter. Perhaps you are a friend of someone who has just been diagnosed. This is a disease in which the more you know, the better you’ll live your life. Understanding how those of us with Parkinson’s should take care of ourselves, how to fight the daily battles, and how to develop a long-term plan for living well will help us lead better lives. This book will provide those of us affected with the tools we need to take control of the illness and improve our lives.

When I was first diagnosed, I went through a long spell of depression and uncertainty. Before Parkinson’s, I thought I had my life figured out, but everything I was working toward went out the window after receiving the diagnosis bombshell. I felt like my life was over and I was emotionally lost. Faced with the prospect of having a shorter amount of time to work in my career, to do everything on my “bucket list,”, or even worse, of becoming disabled before I could do anything more with my life, I frantically jumped into every new thing at which I thought I could succeed. I thought I had to have new experiences and check off all of the items on my bucket list before it was too late. I tried going back to school several times, I started a new company, I ran for public office, and I did many more zany things. I overwhelmed myself, and I eventually burned out. That was when I decided I needed to change how I approached the treatment of my disease, but more importantly, how I approached life. I wasn’t the same person before being diagnosed, and things needed to change if I wanted to be happy and as healthy as possible.

I learned everything I could about Parkinson’s, and became an expert patient. I read all of the books about Parkinson’s, both for patients and for professionals in the field. I read all of the latest research and began keeping track of all of the new treatment options. After a few months, I knew more than enough to have an intelligent and productive discussion with my medical team. I could work with them, for example when they would suggest a new medication, and we would be able to have a lively debate during our appointments. I learned all about medications, supplements, exercise, nutrition, and everything else related to the disease and its progression. I developed my own system for tracking the various aspects of the disease, and eventually developed a mobile app that made it easy for me to keep track of the various aspects of the illness.

In addition to information, I believe all PWPs need some inspiration in their lives. Life with Parkinson’s doesn’t need to be about living life with negative feelings. There are ways to live a happy life while also living with Parkinson’s. My hope is that my story will serve as an inspiration to you and that my experiences can help guide you and make life a little easier.

“a journey of a thousand miles begins with a single step” – Laozi

As I begin my journey to have Deep Brain Stimulation surgery to help alleviate my Parkinson’s symptoms, I thought it would be good to keep a journal of all the ups and downs along the way.

I’ve been battling Parkinson’s Disease since I was about 30 years old, and I am currently at stage 3 progression of the disease. At this stage, medications don’t work as expected and side effects like dyskinesia and dystonia have become more painful and intense.

While Deep Brain Stimulation is risky and highly-invasive brain surgery, I’m at the point where Parkinson’s is seriously affecting my quality of life. Walking has become difficult, and I have severe on-off phases throughout the day, leaving me exhausted and unproductive. In the past few years, I’ve had to quit several beloved activities, and my worldview has become smaller as a result. I’ve weighed the risks and benefits, and I’ve decided it’s worth it for the chance at a much better 40-50 years I may have ahead of me; Parkinson’s isn’t fatal, and there is still a lot I want to do!

The story thus far

I had been contemplating Deep Brain Stimulation for quite some time, but it was only in the past couple of years that I became serious about it. The severe side effects of my medications have already lead me to leave business school, stop my community activities, and think smaller about life in general. The surgery used to be considered a last-ditch effort to alleviate symptoms (but not cure the disease), but for people under 40 it’s seen as a good option early on so that I could continue working, going to school, traveling, being involved in hobbies, and maybe even jumping back into community activism.

In November 2017, I had a consultation at my clinic, the Swedish Neurology Institute in Seattle. I was told that, yes, I did qualify for DBS and that I was physically and mentally (cognitively and emotionally) fit for surgery. However, there were a couple of hurdles that stopped me from booking a surgery date in February of this year.

A bit of background

There are two targets in the brain for DBS, the subthalamic nucleus (STN) and the globus pallidus internus (GPi). Because of my severe dyskinesias, my neurologists recommended the GPi target. Great, let’s do it. But wait… the DBS device being used right now is the same that’s been used for 25 years. Thanks to patent laws and tough FDA regulations, Medtronic has had a complete monopoly over the technique in the US. There is new tech now available from companies Abbott and Boston Scientific, both of which use a thinner multi-directional lead (causing less brain damage during surgery and fewer side effects), and with a longer battery life. But… this technology is only approved for the STN target in the US.

Bevause of the health system in the United States, if I wanted to have the newer devices used for GPi, it would be an off-label procedure and my insurance wouldn’t cover as much of the surgery. The surgery with the old device would cost $500,000, and I would pay about $12,500 out of pocket. The off-label surgery could cost me tens of thousands more.

There’s another option

Through my research, I discovered that the new device from Abbott is pretty popular in Europe and surgeons have been performing the GPi-targeted surgery with it for about five years. Ok, this is great. Is this an option for me? Well, it so happens that my wife, Rosaline, works for a major Dutch company. At around the time I began considering DBS, a perfectly-timed job offer came from the company’s headquarters in Amsterdam. They would sponsor her, and as her spouse, I would also get full health coverage under her policy. Under her health plan, which would cost about €200 per month, my total out of pocket for the DBS surgery would be €300!

A slow pace of life with consistency and low stress are musts for people with Parkinson’s. Instead, I chose to throw my life into the chaos of living in a new country, with lots of unknowns, the stresses of learning my way around, and without knowing anyone but Ros, all for the possibility of having a better outcome than in my home county. Because, you know, #yolo.

This is the story of how I try to get my life back. I promise it will contain drama and thrills, and from time to time, hilarity will ensue. Sign up for my e-mail newsletter to follow my journey.