Am I Really Going to Do This?

Shaken, Not Stirred. That’s a pretty strange blog name for someone who barely drinks, and has never even had a martini. Especially since as I write this I am only toying with the idea of making this into a blog. I’ve never considered writing a blog before. I am a very private person, and I have never felt like I really had anything to say that would be very compelling to read. Yet here I am, toying with the idea.

Major life changes tend to make one look at the whole world from a renewed perspective. Maybe that is what is happening. The changes began very subtly, a diminished sense of smell after visiting the Marian apparition site in Fatima, Portugal several years ago. When I landed in Lisbon, Portugal, there was a really uniquely spicy aroma in the air. It was exotic and exciting. I rented a car and drove to Fatima, where I had a profoundly moving experience. When I returned home, I could still smell the unique smell of Portugal. The smell slowly diminished over the next several weeks, and at some point I noticed I couldn’t smell the aroma any longer. It was a while later that I noticed that my sense of smell had also dramatically diminished.

Fast forward to a couple of years ago. Just before Christmas 2015 I tore my peroneal tibial tendon (in simple terms, I hurt my foot). This was a humbling experience for a man who had never before experienced a serious injury; had never had a broken bone; had never been hospitalized before. The road to recovery was slow. It was more than six months before I was walking without a boot, and a few more months until I had regained muscle tone. But afterwards, I noticed that I had picked up a gait affect… in plain terms, I limped but had no pain. So I have concentrated on walking “normally”, but somewhere along the way my muscles seem to have lost a little bit of coordination.

I am a volunteer in Boy Scouts. The Scout Sign is something we do at every meeting, every week. Over time it has become increasingly difficult for me to make the Scout Sign with my right hand. The fingers just don’t cooperate. I used to be a very fast typist. In bursts I could type 100 words per minute. But over time my coordination has diminished. Now it’s more like 30 words per minute. My handwriting has become smaller over time. All three of these things I chalked up to arthritis: it runs in my family.

This past fall, my right hand and foot began shaking occasionally. When I noticed, I could make it stop. But over time, the frequency increased. At my last checkup this spring, I mentioned the shaking to my Primary Care Physician. She told me it was probably just stress and likely not something to be concerned about. I mentioned a decreased range of motion in my right arm, so she suggested that an injury might also be causing the tremors. She referred me to Physical Therapy. The physical therapist put me through a battery of tests, and told me that while I did have reduced range of motion in my right shoulder, and that physical therapy could help with that, she thought it was unlikely that this was the cause of my tremors, and suggested I ask my Primary for a Neurology referral.

Three weeks ago, my wife Quincy and I met with a Neurologist, Dr. Rojas. Dr. Rojas had me do all sorts of coordination tests, observed my shaking at rest, then dropped the bomb. It was her opinion that Parkinson’s Disease was indicated, but wanted me to take some blood tests, have an MRI, and visit a co-worker who was a Neurologist and a Movement Specialist.

As we sat in the office waiting to meet Dr. Kale, we read a poster about Parkinson’s indicators. Reduced sense of smell, possibly years before other symptoms appeared. Reduced coordination. Restriction of airflow in the throat. Tremors. It’s all there. Dr. Kale put me through a very similar battery of tests and told us that she concurred with Dr. Rojas’ diagnosis. I did have – I do have Parkinson’s Disease. She told us that every case is different and that there is no normal for rate of progression of the disease, but that I could help slow the rate by changing my diet (this code for eat healthy, not code for start eating more donuts), reduce caffeine intake, and to dramatically increase exercise levels (in other words start exercising).

She also suggested that we check three resources for reputable information. They were:

  1. The U.S. Department of Health & Human Services National Institute of Health’s page on Parkinson’s.
  2. The Michael J. Fox Foundation for Parkinson Research’s website.
  3. The National Parkinson Foundation’s website.

I haven’t looked at them yet. Quincy has. Perhaps I am in denial, but my primary concern is how do I make sure my family is going to be secure and taken care of. What do I need to do to prepare for that? So far, for reasons that are incomprehensible to me, I’m not nervous or afraid. Maybe I am in denial. But I do know that if this is the path that God has chosen for me, then I want to walk no other path. I just want to figure out how to walk this path well. Today, thanks be to God, His yoke is easy, and His burden is light. We’ll see what tomorrow brings.

 

 

One thought on “Am I Really Going to Do This?

  1. You are really doing this, and its beautiful and insightful. Thank you for sharing your story Steve. Since I heard the news, I’m truly at a loss for words. Me, always a babbler, but with nothing useful or helpful to say when it really matters. All I can say is I love you all and am lifting you up.

    Like

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