Finding Strength in my Weakness

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I recently received major, life-changing news. I want to share this journey publicly, so I created a new, personal blog. Welcome to my first post! I'll follow-up with more details about who I am (for new readers) and what I do in a future post. This post will cover why I started this blog.

Jeremy and wife Doreen

Here's the scoop: I felt it was important to share this personal story with those of you who are interested. It’s easy to share life’s wins and celebrations. To be transparent, however, you should also know about the challenges. This is mine:

I have a chronic progressive movement disorder called Parkinson’s disease. There is no cure.

Chronic. It won't go away.

Progressive. It gets worse over time.

In some ways, it feels like a dream; in others it is very much my new reality. You may be surprised to hear the news doesn’t mean I’m making major changes to my life. My wife and I adopted a philosophy of not waiting or putting things off. We already aggressively pursue our goals and dreams. I’m in the early stages of the disease and have plenty of road ahead of me. If anything, having the diagnosis is like looking into the future and knowing what to expect. Fortunately, there are a lot of ways to positively influence the progression of Parkinson’s disease, so the diagnosis is empowering.

I will share my ongoing journey with Parkinson's disease in this blog.

First, let's take a step back and look at how I got here.

The Journey Here

I can’t remember the exact moment I realized something was wrong. It started with some random “spasms” of my left hand. I’d have a twitch and drop something, and we’d all have a good laugh at how clumsy I am. Then, at some point in 2018, my left hand began randomly shaking (a tremor). At first it wasn’t very noticeable, and I could easily make it stop. Then it became more frequent, more pronounced, and more difficult to stop.

I still wasn’t very concerned but then I noticed something new: I was losing dexterity. It’s difficult to describe if you haven’t experienced it yourself but think about wiggling all the fingers of your hand. It’s something I took for granted until I realized I couldn’t do it with my left hand without thinking very hard. I’ve always been a fast typist, easily exceeding 100 words per minute. Suddenly I was unable to “feel” the pattern of the keyboard and had to think very intentionally about what I was typing. I took a typing test, and I was down to 60 words per minute. Still not slow, but a huge decrease over what I was used to.

I was also experiencing some muscle soreness and stiffness at the time, but like many people my age wrote it off as exercise and recovery related issues.

My first visit was to a naturopath who gave me a sheet with some stretches on it with a “diagnosis” of a possible issue with the nerve passing through my elbow. I started physical therapy, therapeutic massage and stretching, but the problem continued to progress. My therapists and doctors were baffled why the tremor was occurring. I met with a new doctor to get a second opinion, and she referred me to a carpal tunnel specialist. They scanned my arm and found only very mild carpal tunnel (no surgery needed), no constrictions in my elbow, and determined that wasn’t the cause.

Diagnosis 1: mild left-hand carpal tunnel syndrome

The next visit was to a neurologist who conducted some electromyography (EMG) tests. I was warned it would not be pleasant. They hooked some electrodes to my arm and shocked me with electricity to determine if there is an issue with my nerves conducting signals. That part was fine, and I thought, “I got this!” Then they brought out the needles and probed my muscles. That’s when I started sweating. The worst part was having an electrified needle in my biceps while flexing. The poking and electrocution resulted in pain but also a green light: no issues. Another dead end. Shocking.

During this time, my tremors became more frequent. I started experiencing depression while traveling and I wrote it off as homesickness (I had no idea that emotional changes and depression are symptoms of Parkinson’s disease). I also noticed a pain in my left foot and realized it was contracting on its own while I was sitting or lying down (this is called dystonia). Everything was happening on my left side!

To further troubleshoot, an MRI was ordered on my neck and shoulder. It showed there was some constriction in my neck, but this was not the cause of the tremor. As a side note, I've had hypothyroid for many years now. The MRI showed some concerns with my thyroid and a follow-up ultrasound identified nodules. These were biopsied and determined benign. I was referred to a spine and brain specialist.

Diagnosis 2: cervical radiculopathy at C8

At this point I was doing some research of my own, and I was concerned about the possibility of Parkinson’s. “I don’t know the cause of your tremors, but I highly doubt it’s Parkinson’s disease,” my physician told me. What a relief! He ordered an MRI of my brain to continue the investigation. The result? “A mild amount of white matter disease” that was not considered clinically significant and was ruled out as the cause of my tremors.

Diagnosis 3: mild amount of white matter disease ("clinical significance is doubtful")

(I later learned that Parkinson's disease can cause brain tissue to decay, leading to white matter disease. A few studies are considering whether or not this can be used as a marker for Parkinson's disease.)

I was then referred to another neurologist who determined my symptoms looked like Parkinson’s but assured me it was highly unlikely and ordered a special DaTscan to “rule it out.” I spent a day in the hospital that included drinking radioactive tracers, waiting four hours for them to reach my brain, then sitting still for a 45-minute scan to analyze my dopamine levels. It took a few weeks to get results, then another few weeks to get into the office to learn what was what.

The doctor gave me a 90% chance I had Parkinson's disease and prescribed a dopamine agonist for me to start taking. My wife and I did some more research and got a referral to a specialist.

Where I Am At

The specialist gave me a pretty clear diagnosis: I am in stage II of Parkinson's disease. Stage I is when symptoms are solely located on one side. I was only aware of symptoms on my left, but testing revealed an inability to tap with my right foot in a controlled fashion. Hence, stage II. Because I am 45, and most people develop Parkinson's disease after 60, it is technically considered "young onset Parkinson's disease." Some people have been diagnosed as young as their 20s! There is no rule book for how long people typically stay in one stage before progressing to the next. I'm mostly in the first stage, but some mild issues with my right food means symptoms are presenting themselves on both sides which is what defines the second stage.

Final Diagnosis: Stage 2 Parkinson's Disease

No one knows exactly what causes Parkinson’s disease, but there is a good understanding of how it impacts the body, or more specifically, the central nervous system. The scan showed that my dopamine levels were abnormally low, especially in the right side of my brain (hence affecting the left side of my body). This, along with my physical symptoms, pointed to Parkinson’s. A few fun facts:

• There is no cure

• It is a progressive disease, meaning it gets worse over time

• It is caused by neurons dying, including ones that produce dopamine and are responsible for other brain functions

• Dopamine is responsible for transmitting messages, and low dopamine means abnormal brain activity

Parkinson’s is not considered a terminal illness: no one dies directly from Parkinson’s. However, it does come with complications and some can be life-threatening. I’m in the earlier stages and it was diagnosed at a time that research has come far. Right now, the main impact is slowing my typing a bit (but I’m taking some medication that is improving that) and making other people uncomfortable when I tremor in their presence. Things that could happen down the road include impairment of gait/increased risk of falling, problems with chewing, swallowing, and processing food, and emotional and mental changes (including dementia).

After the diagnosis I was immediately prescribed a dopamine agonist (a drug that induces the body to produce more dopamine). The first day I was in pain and felt miserable, followed by a few days of just feeling strange (almost like I was jet-lagged). I eventually overcame the side effects and immediately received benefits. I noticed my dexterity returning and am back up to typing 80 words per minute!

The Road Ahead

I’ve always been a fan of exercise. I was even a finalist in a body transformation contest, ran my own fitness business for several years and the first book I wrote was about healthy living. Therefore, it was exciting for me to learn that there is only one thing that has been proven beyond a doubt to slow the progression of Parkinson’s disease: regular, intense exercise. I’ve never stopped exercising and now I have a reason to focus and new motivation to push harder.

I am thankful for a diagnosis that will enable me to address the symptoms and plan an appropriate path forward. I’ve never been one to get stuck in routine and ignore my dreams, so this hasn’t shifted my perspective in a major way. There are some goals I previously set aside, such as running a marathon and climbing to the summit of Mt. Rainier, that I’ll reconsider now because if I decide to go forward, the sooner I pursue them the less likely my condition will interfere. I plan to speak, write, host the Channel 9 On .NET show and do everything else I enjoy for as long as I possibly can. Right now, the symptoms are mild and don’t interfere with work at all. Sometimes it’s easy to forget I have it.

I already contributed to two trials by providing blood for analysis and filling out surveys. I'm also considering joining an immunotherapy trial that is about to start in my local area. There are many options to consider!

When I mentioned going public with my illness, one (very valid) concern was whether it would endanger my career to reveal it “to soon.” For me, there is no question. Honesty and integrity are personal, core values of mine that I will not compromise by hiding this. Fortunately, I am blessed to work at a company that is known for not only supporting employees with various conditions, but proactively hires people with disabilities. I am confident that Microsoft will support me in this. In fact, Microsoft recently inspired many of us with a project designed to address tremors without drugs. Have you heard Emma’s story? She was diagnosed at 29.

A goal of mine is to reach out to the team behind this and find out how I can get involved.

I am a follower of Christ. This isn’t just a religious preference I was raised with. I was atheist most of my life. As an adult, I realized how my worldview had been shaped by blindly following popular tenants and beliefs but that if I really looked closely, God was always present in my life and events happened that simply could not be written off as coincidence. Accepting Christ as my personal savior was life transforming and continues to be the most important decision I made. I don’t practice a shallow or empty faith but enjoy an active relationship with my creator. I share this so you know I live and walk in faith and comfort and do not see death as a final ultimatum. My faith and fellowship with other believers give me strength and confidence. My faith is what led me to name this blog.

And he said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. – II Corinthians 12

I will rather boast in my infirmities!

I’m doing great. That doesn’t mean I’m so arrogant to think I don’t need help. I’m seeing a Parkinson’s specialist and will pursue joining Parkinson’s support groups. Not just for me! This journey not my own, but also impacts my best friend and wife of over 20 years.

My wife, Doreen, is my greatest inspiration. She suffered from debilitating scoliosis that left her in so much pain, she was bedridden for years. She underwent a major surgery that resulted in several pounds of titanium rods surgically implanted in her back and fusion of her spine from neck to sacrum. A few years later, two rods broke and fractured her vertebrae. The incident was misdiagnosed at an emergency room visit and she went on to summit a 14,000’ peak (Mt. Sherman) with a broken back (only realizing it afterwards because she wasn’t recovering well).

She’s since had corrective surgery and is doing fantastic, but will never be able to bend, lift, or twist. I’ve been her caretaker through this, now we are swapping roles as she watches over and helps take care of me. You can read about her amazing journey here:

https://thebionicachronicles.blogspot.com/2011/08/welcome-my-goal-for-this-blog-is-to.html

As I mentioned, research into Parkinson’s has come far and there are many treatments available and being developed. I am excited about the opportunity to slow the progression during a time when new breakthroughs will be accomplished. I want to share this because it is now part of who I am, and if you notice outward changes in the future, you know why. I have a wonderful, loving family from my parents to my grown children and an amazing group of friends and supporters around the world.

What can you do?

The best way you can support me is by helping donate to a cause. I started a fundraiser to raise $15,000 for Parkinson's Disease research. Lofty goal? Maybe. Achievable? Absolutely. Every dollar makes a difference, so please consider donating today.

I have Parkinson’s disease, and it’s not going to stop me from pursuing my dreams. I will find strength in my weakness.

Thank you for listening, and for your continued support. I appreciate you.

Regards,

Jeremy Likness