The Gift of Grace in Suffering: A Journey Through Atypical Parkinsonism

I have not written in this space for some time. It’s not for lack of trying. I have started and stopped several articles, and all of them had good themes. There was some good content that I was creating, but it wasn’t what the Lord would have me to write.

I am not able to write anything anymore that is not inspired by the Holy Spirit. Today, after meeting with my boss and telling him this story, I sat down and had to write what the Lord was saying to me.

I have received a gift. It’s not a gift I would ever have requested, nor something I desired to have. But it is a gift so precious that I wish I could give it to everyone whom I loved. It is the gift of knowing that there’s nothing you or anyone else can do to change the trajectory of your life that God has not allowed or set in motion. He has done this for you and for me to experience more of His goodness and grace.

I have become what I never wanted to be. I’ve become an unsteady old man who needs to use a cane to walk around. I never thought that this would happen to me. Even as recently as 18 months ago, I was running 2-3 miles a day and walking miles every day with my beautiful wife. The vision I had for myself was of a lean, somewhat athletic older man enjoying life and never set to retire to a rocking chair. That was just a short while ago.

But God has given me a precious gift. The doctors really don’t know what to call it yet. My neurologist has called it Atypical Parkinsonism (Johns Hopkins Medicine, 2025). She’s not quite sure this is it, but she has crossed off a lot of other things from the list.

It started about 18 months ago, when I felt like my balance was not right. I had a heart procedure and shortly after recovery was running well again and experiencing more energy than I could recall. I ran my third fastest time for a 5K race and it felt great. But then I began having some balance issues. There were random falls, but they were increasing in number. My left foot kept dropping and I would tumble while running. It scared me; and I wasn’t sure if there was some linkage to my heart procedure and the medication that I was taking. So, I contacted the cardiologist, and they conducted some tests; but there was no evidence to validate what was happening from their perspective.

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 several tests and crossed several 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, then they stop the treatment because the clinicians know that the patient has Atypical Parkinsonism.

The interviewer continued: “So then what do you do (or something to that effect)?” That’s when the expert wasn’t so helpful. They don’t really know what to do. The expert said that a definitive diagnosis for Atypical Parkinsonism may never be made while the person is alive. Wow!

So that is where I am right now. I am in the arms of my loving Heavenly Father, on a journey that I did not choose, and that I know I will complete… someday. It may be less time on this side of our ‘Terra Firma’ than I had planned. But if I believe all those things that I’ve written and taught over the course of my life in pastoral ministry and Christian Higher Education, then there is a greater and better reward waiting for me on the other side of this than I could have ever hoped for or imagined.

This will obviously necessitate some changes in my employment status as well as in other areas. One of the biggest obstacles for me is asking for help. I am still pretty stubborn about trying to do things for myself. I’m not going to be able to keep that up and will need to humble myself and receive help when offered. In this I am reminded of the prediction that Jesus had for Peter in John 21, although under different circumstances (John 21:18-19 ESV). It seemed like when I was younger, I could take care of myself and walk and run wherever I wanted. But as I traverse this new path, I will have to depend on others to carry me along. In my case, it’s to a place that I really want to go, to meet my Heavenly Father and the Savior who loved me and gave Himself for me (Galatians 2:20 ESV). 

Lately I have been struggling to keep my composure when I talk about it. I break down sobbing too often for a person who has now booked an earlier departure to a wondrous eternal reward. I am already dreading the thought of leaving my beautiful wife to take care of all these trinkets and toys we have collected over the years. I want to spend as much time with my kids and grandkids as I can, until they are sick of me. I long to pour into my students and my readers truths that can endure though the darkest circumstances – and God has given so many promises to us, to keep us from giving up!

But right now, I am so grateful for this gift that God has given to me! I would not trade it for anything, and I really mean that. There is nothing the doctors nor I can do about all of this except to press in and seek more of God, like the woman with the issue of blood (Mark 5:25-34). I may find a healing touch like she received; but if I can touch my Savior (or be touched by Him) that will be good enough for me!

Sources:

Johns Hopkins Medicine (2025). Atypical Parkinsonian Disorders. Retrieved from https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/atypical-parkinsonian-disorders.

Parkinsons Foundation (2019, February 26). Episode 49: Parkinson’s Disease vs. Parkinsonism: What’s the Difference? Retrieved from https://www.parkinson.org/library/podcast/49.

Vertes, A.C.; Beato, M.R.; Sonne, J.; and Khan Suheb, M.Z. (2023). Parkinson-Plus Syndrome. NIH: National Library of Medicine. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK585113/.