Stories of people with Parkinson’s making it meaningful everyday

This is Mark. One of the many faces of Parkinson’s. Mark and I are going to be teaming up for some fun collaborations for Parkinson’s Disease Awareness Month in April. And I’m excited to have the opportunity to introduce him to you ahead of those projects.

I first “met” Mark almost exactly one year ago. He interacts on social media platforms as #markinthepark21 and shares really informative and fun content while bringing awareness to Parkinson’s Disease. He commented on one of my Instagram posts and then kindly reshared some of my content. I reached out to him to say thank you and we struck up a conversation. We discovered that we were in very similar stages of Parkinson’s Disease, but our paths to diagnosis looked very different from one another’s.

My diagnosis came seemingly out of nowhere and Parkinson’s Disease, as I shared in the inaugural post of Just Shake It Off, was not even on my radar. I was dealing with an annoying tremor in my right hand and I just figured it was related to my suspected autoimmune disease. Mark’s diagnosis, as you’ll read, came after an initial diagnosis of Essential Tremor following about a year of monitoring and evaluating “Parkinson’s-like” symptoms after he developed a slight tremor in his left hand.

But…there is no reason for me to keep speaking his story when he does it so much better. In his own words. So, continue reading and meet my friend Mark…a fellow Parkinson’s fighter, sarcasm specialist. and awareness advocate.

2020

It started with a pinch.  An involuntary pinch between my left index finger and my left thumb was my first symptom.  That quickly transitioned to a slight tremor in my left hand in February 2020.  At first, I did not know what to think about this.  Had I injured myself and didn’t know it?  Was some type of damage to my arm, shoulder, or neck the reason my hand was shaking?  I wasn’t sure.  But one thing was evident.  It was not going away.  So in March (2020), I made an appointment with my primary care physician for the earliest appointment available. 

In April 2020, I had my first doctor visit related to the tremor in my hand.  After some questions and examination, my doctor concluded that it was most likely a condition known as an “Essential Tremor”.  “Oh, OK.” I thought.  “I have known people with Essential Tremors before.  I can handle this!”  And I went on with my life.  2020 provided me with plenty of distractions, of course, being the crazy year that it was.  But the tremor continued.  Then one day I was walking a short distance with someone I worked with and she asked me, “Is your arm OK?”  “Yeah, it’s fine.  Why are you asking?” I replied.  “Because when you’re walking, your arm isn’t swinging and it looks freaky.  So I thought maybe you hurt it.  Maybe that’s why it’s just hanging when you walk,” she said. 

I was in a complete daze.  What was she talking about?  Focusing now on my extremities while walking, I suddenly realized she was right!  My left arm was completely frozen (like it was attached to my left hip) and was not swinging back and forth as I walked.  My hand was also locked in a very specific position.  “How long has THIS been going on?” I wondered.  So I started to consciously focus on my left hand when I walked any distance.  Sure enough, my left arm was hanging by my side, with my hand locked in that same position over and over again!  “That must be a side effect of an Essential Tremor.  No problem.  I will just make sure I swing my arm more when I walk,” I thought to myself. 

As 2020 went on, things progressed in a good way for my business as a Firearms Instructor.  With so many people purchasing firearms as a result of the pandemic “panic buying”, as well as the riots that occurred in early 2020, my classes were very popular!  If it wasn’t for class size restrictions due to the pandemic, my classes would have been through the roof! 

But in the back of my mind, I was very self-conscious while instructing my students with this newly developing situation involving my tremor.  I didn’t want them to see my hand shaking while I taught them.  So I tried to hide my left hand by keeping it in my pocket, or interlocking it with my right hand while teaching, figuring my right hand could hold my left hand still.  Or by using my left hand to hold the remote “clicker” for advancing the presentation materials on my laptop, my hand seemed to shake a little less.  So I used that as a method to conceal my shaking hand. 

But despite all my efforts, some students did notice.  I could see their eyes quickly stray from the subject at hand like the proper shooting grip with a handgun, and move over to look at my left hand shaking, then dart back to where they were originally focused.  Most said nothing.  But one curious young man asked, “Are you nervous?  Your hand is shaking”.  Nervous?!?!  I stood there thinking to myself “What?!  I have been teaching this material for 10 years!  I know this stuff like the back of my hand”!  The back of my shaking hand that is.  But instead, I replied that I was not nervous at all.  “I just have a ‘thing’ going on with my left hand.  The Doctor tells me it’s an Essential Tremor”.   “Ah”, the student replied, nodding his head.  Inside I felt awkward and moved on to the next subject in the class. 

Meanwhile, as time went on, additional symptoms came to light.  Someone asked me one day if I was limping?  He noticed I was favoring my left foot.  I began to realize that at times, my left foot actually was dragging.  In fact, I was having trouble lifting that foot fully off the ground.  Instead of a smooth motion (from heel to toe), my left foot would scrape along the ground periodically. 

Then came the rigidity.  My left hand was seizing up and locking tight (during times of rest).  It was clenched so tightly that my forearm was tired all the time.  As a firearms instructor, I could still shoot accurately.  As a matter of fact, in September (2020), I qualified with ease for another certification as an instructor.  For this particular certification, I was to shoot at a target and meet the required score.  Since I am right-handed, my left (shaky) hand is my support hand for my 2-handed grip.  Luckily for me, the shaking slowed down dramatically when I gripped my firearm. 

So I continued on with my classes while working through these newfound issues. As 2020 drew to a close, the tremor in my left hand became much worse.  By the time the holidays arrived, my hand shook more than it ever had before.  It began to shake uncontrollably, even when I was at rest, that I started to become sleep-deprived. 

2021

In January of 2021, the rigidity in my left arm and hand intensified. The endless fatigue brought on from the rigidity really started to wear on me.  I also began to notice that my balance was just off.  And then out of nowhere….. panic attacks!  Sudden bursts of intense anxiety would hit me at random times.  I had never experienced this type of thing before!  Up to this point, I had always had endless energy.  But now it was all I could do to make it through the day with the severe fatigue I was experiencing. 

For the first time, the “P” word started to come to mind as I searched the internet regarding my symptoms. 

So I made an appointment to go back and see my primary care doctor.  During our visit, I told him that my left hand was consistently tremoring at this point (even while I was resting).  As I was describing my symptoms, I saw a look of worry on his face that I had never seen before.   His concern was that I was exhibiting what he referred to as “some Parkinson’s type symptoms” and he felt that I should see a neurologist. 

A couple of weeks later I went in to see the neurologist who I had been referred to.  He spent a good amount of time having me perform different functions with my right hand, then my left hand.  I also did similar tests with my right foot and then my left foot.  Next up, he had me walk around the office and he watched my pattern.  His conclusion after observing me was that I had classic Parkinson’s symptoms (rigidity, tremor, and bradykinesia (lack of arm swing).  His next comment was “Yes, you have Parkinson’s Disease”.  

Since I am in my mid-50s, he said I wasn’t technically “Young Onset Parkinson’s” (a fancy phrase for those of us who are diagnosed with Parkinson’s before the age of 50), but I wasn’t far removed from it either.  And since my symptoms started in my early 50’s, he was going to consider me as “Young Onset Parkinson’s Disease”.  And for some reason, having that “Young Onset” added to my diagnosis helped me in accepting the situation.  (I guess that way, I didn’t feel too old…)?  He ordered an MRI and some blood work to rule out other factors and we scheduled a follow-up visit to review the results.  Those results came back with a diagnosis of Parkinson’s Disease.  

what next

Oddly enough, I left the neurologist’s office that day feeling a sense of relief. At least now I had an answer for the issues I had been experiencing for nearly a year.  It wasn’t the diagnosis I wanted, for sure.  But the diagnosis put a “face to the enemy”.  Now I knew what I was fighting, and that brought me comfort.  I am a man of faith, so I immediately took the situation to God in prayer and handed it over to Him.  I knew I would need Divine assistance to handle this one! 

The next step was to disclose this information to the ones closest to me.  The outpouring of love and support I have received was (and still is) nothing short of amazing!  The next thing I did was find a way to make a difference.  So right away, I signed up to participate in the annual Pat Tillman Run/Walk here in Phoenix.  I used this event as a platform to raise money for the Michael J Fox Foundation for Parkinson’s research.  I set my original goal at $500, but because of the incredible generosity and support of those around me, I was able to raise over $1700.00 during that event!  I am so thankful for such amazing support!  

Where do I go from here?  Good question?  Parkinson’s Disease is a lifelong progressive disease, which means it slowly gets worse over time.  But that could be a very long time from now, for all I know!  I read a quote from Michael J. Fox that said “Acceptance does not mean resignation”.  I like that a lot.  I can accept that I have PD, but I am not resigning myself to live my life with any less fervor than I have my every day up to this point.  My neurologist pointed out to me early on that Parkinson’s Disease is not a death sentence. PD wants to rob me of my motion and mobility, but my life expectancy isn’t much different now that I have Parkinson’s at my age.  So I am committed to being as strong as I can for as long as I can.  You can be sure of that! 

I have family and loved ones that are supporting me daily and that helps more than anyone can ever imagine.  I am also committed to keep moving every day.  Exercising, hiking, going for walks, or walking the dogs are all things I plan on doing regularly.  And I am keeping my hands busy by doing projects in my garage shop or “tinkering” with things here or there.  Anything to stay in motion.  One thing is for sure though.  I know in God’s hands, I will be OK. 

– reposted with permission of Mark Milow

more to come

I hope you enjoyed meeting Mark. I hope you’ll join us in April for some fun, educational and interactive projects. And I hope you’ll continue following Just Shake It Off and reading “Faces of Parkinson’s” to meet more outstanding Parkinson’s warriors.