Life Changes

April is Parkinson's awareness month.

Parkinson’s Disease is a life-long neurodegenerative disorder that worsens over time. It is categorized as a movement disorder. A Neurologist that has a specialty in movement disorders is usually required to confirm the diagnosis. Most know of the shaking, stiffness, loss of balance. There is a mental component that effects 20 to 40 percent of people with Parkinson's and roughly 80 percent will develop some form of dementia. Around 10% are diagnosed before age 60. Early onset Parkinson's is generally defined as a person effected age 50 or younger. About 90,000 people a year are diagnosed. There are roughly one million people in the United States living with Parkinson's. With only half of that officially diagnosed.

I have been diagnosed with Parkinson's and this is my story.

I’m not looking for sympathy.

I’m hoping to provide some enlightenment and understanding.

Like many, I had signs years before finally being diagnosed. My gate was slowing and stooped. My fine motor skills were getting worse. In early 2021 I asked my doctor if any of the medications I was on would cause hand tremors. As someone who loves working on early computers, being able to solder is very important. I started having difficulty swallowing. It was bad enough that my son noticed at evening meals that I was choking quite a bit. I loved playing computer games, but the lack of accuracy made it impossible to play games I used to enjoy. Again, like many, I blamed it on "getting older." I was in my late 40's, you know, old. Not many saw the signs. I had worked mostly remotely even before the pandemic. I chocked up my walking issues to a bad knee and lower back issues. As others noticed my trembling hands and would ask, I would just say "I shake, no big deal." My wife even commented that she was worried I had Parkinson's and I tried to just laugh it off. Visiting an old friend and having dinner he was shocked by how bad my tremors were. While seeing an orthopedic specialist about my knee he asked at the end of the exam if I had any additional concerns. I told him I was terribly unstable and blamed it on my back and knee. He did a few standard tests, and very frankly, told me to go see a neurologist as soon as possible. Getting an appointment to see a Neurologist with a specialty in movement disorder is a challenge. I was fortunate and only had to wait a few months. After a battery of standard tests, I sat with the doctor and was asked "Has anyone mentioned the 'P' word yet?" Parkinson's isn't a forbidden word, just scary. I had more tests including an MRI that came back clean. I then did a standard trial of Levodopa, a dopamine replacement. It was like flipping a switch. I could walk, my balance improved significantly, and my tremors were greatly reduced. So, now we know. Treatable but forever.

 That's the physical side of this disease.

One of the tests that can be administered is the Montreal Cognitive Assessment (MoCA). I showed signs of mild cognitive impairment. Again, a large part of the Parkinson's population has, or will have, cognitive or other neurological issues. I knew something wasn't right. My memory has gotten poorer, people’s names, people I have known for years, will just elude me. I loved to play poker and could play multiple tables online and calculate the odds quickly in my head. I now struggle with basic math. I get hung up on words, normal simple words, while speaking. I handle stress poorly when I used to eat it for breakfast. Most of this I could compensate for. I took more notes and used reminders. We all carry a calculator in our pockets these days. Use humor to cover stressful situations and bottle it up, only to let it out when no one is around.

The thing no one talks openly about, outside of Parkinson's support groups, are the hallucinations. Mine are mild and easily dismissed. I hear people talking sometimes. Mostly at night and when I'm alone. I also see things in my peripheral vision and feel like someone is behind me, even in an empty room or even house. One person in my support group hears music! Most people who know me outside of my family don't readily see these hidden symptoms. I am still funny and laugh a lot. Admitting to myself that I'm not the old Wes anymore has, and is, a grieving and healing process. Just writing this is incredibly difficult. I still have more testing to come and some treatment alternatives but again Parkinson's is degenerative and for life.

I am fortunate to have an unbelievably loving and supporting wife and son.

If the only person you knew with Parkinson’s was Michael J. Fox now you know me too.

This isn't the end of my story, just another chapter.