Hello, I have Young Onset Parkinson's Disease
Updated: Feb 7
I was diagnosed with Young Onset Parkinson's Disease (YOPD) in February of 2020. I immediately decided to publicly disclose my diagnosis and advocate to raise awareness and support others who either have Parkinson's Disease (PD) or care for someone who does. This is my "self-disclosure." The purpose of this post is to help friends, team members, and peers understand more about my condition and how to effectively collaborate with me.
In this post:
What is Parkinson's Disease?
Parkinson's Disease is a chronic (there is no cure and it doesn't go away) and progressive (symptoms get worse over time) movement disorder.
There is no cure, and we do not know definitively what causes the disease. The latest research suggests there may be a genetic disposition that can be triggered by environmental factors (such as exposure to chemicals). We do know that the disease results in the death of cells that produce dopamine. This short-circuits the ability of cells to communicate with each other and leads to symptoms that include tremor/shaking, difficulty speaking, loss of balance, slowness of movement, and muscle cramping. We also know that the progression of the disease correlates to the spread of alpha-synuclein. This protein forms abnormal clumps called Lewy Bodies that interfere with cellular functions.
What is Young Onset Parkinson's Disease?
Historically, over 95% of people are diagnosed with PD over the age of 50. Recently, there has been a surge of diagnoses in younger individuals. YOPD is simply PD diagnosed under the age of 50. That diagnosis remains regardless of your age (i.e., when I turn 55, I'll still be considered a person with YOPD).
How did I receive my diagnosis?
Read "Finding Strength in my Weakness" for a detailed account of my journey to diagnosis.
How does YOPD impact me today?
The main symptom I have is a consistent tremor in my left arm, which happens to be my dominant arm. I can control the tremor if I focus. Stress makes it more severe. I also have stiffness in my arms and hands, experience occasional severe cramping in my left foot, and find it harder to move the muscles on the left side of my face. To control my symptoms, I follow a strict schedule of medication designed to replace the dopamine my body no longer produces.
What accommodations do I use?
The stiffness in my hands and tremor both make it difficult to type and use the mouse. Typing on a regular keyboard is usually fine for me, but it has become almost impossible for me to use the keypad on mobile devices. There are currently three accommodations I use:
A foot pedal allows me to click, right-click, and double-click without using the buttons on the mouse. This keeps me from accidentally clicking or dragging items.
A head tracker allows me to position the mouse using my head to avoid issues with moving it during a tremor.
I use voice dictation on my phone and am exploring it on my PC to ease typing and navigation.
Thankfully, these accommodations have allowed me to remain 100% productive in both my work and hobbies like astrophotography.
What should others be aware of when interacting with me?
My tremor is the most visible symptom. If you see my hand or arm shaking, understand this is a "normal" symptom and there is no need for concern. What may be less obvious is the impact PD has on my facial expressions. The symptoms sometimes pull my face into a frown, so please don't think I'm scowling, angry, or upset. I noticed that it's harder to work the muscles on the left side of my face, so you may notice what looks an arched eyebrow or half-grin. This is probably me expressing astonishment or just trying to smile. PD also causes me to speak more softly, and often I'm not aware. It's perfectly fine to let me know you are having trouble hearing me because I can speak louder if I focus.
Due to challenges with typing, I always prefer a voice chat over a text-based one.
The head tracker that I use requires me to wear a silver dot on my forehead or glasses.
What am I doing about PD?
In addition to this blog, I actively raise funds to support research for a cure. My wife and I produce a podcast for people with PD and their dependents called You, Me, and PD. I am a board member for the Young Onset Parkinson's Network (YOPN). At work, I am a member of our disability Employee Resource Group (ERG) and lead communications including producing our monthly newsletter.
What can you do to help?
You are already taking an important step in understanding what PD is and how it affects me. Thank you! The best way to help me and the millions of others who have PD is to support research for a cure. I chose the Michael J. Fox Foundation for my cause and you can use that link to donate.
I appreciate you,