The balance issues continued. I thought that perhaps I had developed vertigo or an inner ear problem. So I went to see an ENT. The ENT ran a series of tests, and the result was disheartening. They told me that my central nervous system was not communicating with my peripheral nervous system. I asked the question, “What does that mean?” They said, “That means you need to see a neurologist.”
And so began my journey in this current year. We have taken a number of tests and crossed a number of things off the list. It is not neuropathy, not ALS, not myasthenia gravis. What is left?
The latest now seems to be pointing to Atypical Parkinsonism, or what is also referred to as Parkinson-Plus Syndrome (Vertes, et.al, 2023). In my finite mind, I thought that this meant that I had Parkinson’s disease, but just a different kind. Well, I found out that there are several diseases categorized under the Atypical Parkinsonian banner (Johns Hopkins Medicine, 2025). None of them are the type of things that you would want to give to your worst enemy.
Nothing has been confirmed as of right now. And it may never be confirmed. That may be the most wonderful thing about this entire journey – little is known about this set of diseases, and not much can be done in terms of treatment. We must be fully and totally reliant on the Lord!
My wife and I listened to a podcast on the Parkinsons.org website (Parkinsons Foundation, 2019). The interviewer asked a clinical social worker and Senior Parkinson’s Information Specialist this question: “How do you know if a patient has Atypical Parkinsonism?” The answer was quite interesting. The expert said something to the effect that doctors will treat the patient with a medicine called Levodopa, which is a dopamine replacement agent used for the treatment of Parkinson’s disease, since dopamine levels decrease in persons with Parkinsons. If the treatment of the Levodopa does not work after a period of time, then they stop the treatment because the clinicians know that the patient has Atypical Parkinsonism.