With Parkinson’s, Outcomes Vary. Right the Ship, Captain. (5 Year Crystal Ball)

With Parkinson’s, Outcomes Vary. Right the Ship, Captain.

“Where do you see me in five years?”

I had been waiting a long time to ask that question.  At the top hospitals you don’t just get in next week, next month either.

And when your day comes, there are lots of people waiting for their turn to ask important questions.  Doctors have little allotted time.

My doctor had already turned toward the door.  My most pressing concern was still untreated.

“I know you don’t have a crystal ball, but just some sense of what to plan for? My kids haven’t even started school.”

To the doctor’s credit, the response was considered.

MD: Five years…You’ll probably need to use a cane.

Me:  Will I still be able to work?

 MD: What kind of work do you do?

 Me:  Generic businessman, desk-jockey stuff.

 MD: …I’d say 50-50.

Me:  Okay, thank you.  A lot of doctors would’ve been less candid.  I appreciate that. 

As I left the building, though, I wished my response had gone further.  Like,

“I appreciate that. Now allow me to return the favor. 

 Go round up all your liquid assets.  Every one you can.  Convert them to cash.

Someone, somewhere is dying to make a market for an over/under wager.  And when you find the book that will take it, place the briefcase on the table between the two of you, pop it open facing him (that part is important, you might want to practice that because it’s not a natural thing, facing it opposite you), and very deliberately tell him, “LAY THE WHOLE DAMN CASE ON THE OVER 5 YEARS!”

Of course, those responses only happen in the movies.

I went to the doctor’s office that day determined as hell to hold off Parkinson’s. Hold it off with that same level of intensity that the Texas Rangers try to hold off wins in October.

But I left the doctor’s office that day with a drive in me that I had never in life known before.  Five years put my daughter going into 1st grade!

So, here we are now 5 years and about 8 months later.  I actually haven’t thought much about those projections recently.

But hey, let’s just see how we would have done on our bets!

Turns out the doctor is a doctor for a pretty good reason.  The 5-year outlook…not that bad.

I don’t use a cane, but there are times  when I think “Dang, I could use a cane.”

As for working, I did in fact just recently quit my job.   Didn’t pay anything anyway.  I took a shot on my own business and it didn’t work.  It had nothing to do with any diseases, though, or from not working enough.

Who wants a job anyway, when you can have a passion?  I created and am leading an initiative within the Parkinson’s community.  My goal is to empower with knowledge and drive to exceed predefined limitations.  I’m passionate about it because I know the subject and the subjects.  I may be a little subjective, but I think I know their biggest need.

I told you what should have said on that day more than five years ago.

Let me tell you what I think patients should hear, be it from their doctor or from someone else, when they have a question along the lines of “When the grandchildren come visit in five years, will I still care for them or will they have to care for me?” or “Will I still be working in five years?”

MD:   Well, do you want to still be working in five years?  Yea? Okay, I’ll show you exactly what you have to do to get there.  And we will be pushing you to get there.  Pushing you to go past there.  It won’t be easy.  But giving up, or being unwilling to adapt, that’s gonna’ feel a hell of a lot worse.

The doctor’s walk-off could even be something like,

“You like alternative medicine? How do you like these alternatives?”

That’d be kinda’ bad ass.

So, my goal for the next 5 years, 10 years… but one day at a time, is to inform as many of you as possible that:

  •  You hold the biggest say in your fate.
  •  Your perspective on life can actually become healthier.
  •  There are still infinite ways to find fulfillment.

I’ve always liked the analytics of odds and projections. What I have grown to love is the creativity to beat the odds, and the art of navigating uncertainty.

Patient, don’t ask, “Where will I be in five years?”

Say with conviction,

“Here is where I want to be in five years. Help me create the route to get there!”

 Choosing your doctor is meaningful.  Choosing yourself…that’s critical.

[Editor’s Note: This post is a time capsule, actually written 5 years ago, when the author was looking back 5 years earlier to a Neurologist appointment, and the questions he had at that time about the next 5 years.]

[The listing ship image was sourced from Wikipedia: https://commons.wikimedia.org/wiki/File:Ivory_Tirupati_with_heavy_list_3.jpg]

More by Gavin Mogan

  • Progression of PD or Progression of Me?
    Progression of PD or Progression of Me?

    I used to worry about how much the exercise I did slowed the progression of PD. Not any more. I mostly just want to be the best I can possibly be. I’m more interested in the progression of me. What do I want to do? What can I achieve? And…

  • Every Day is Opening Day
    Every Day is Opening Day

    I decide how I will live life to the fullest despite Parkinson’s disease. I control my thoughts, which in turn control my emotions, which in turn control my actions. Video transcript: This is not a Parkinson’s dance class. There’s not even music. It’s a makeshift medical clinic in Uganda. Many…

  • My God, That’s a Lot of Basketball (3,000 3-pointers for Parkinson’s Si Buko Uganda)
    My God, That’s a Lot of Basketball (3,000 3-pointers for Parkinson’s Si Buko Uganda)

    On June, 18, 2019, I spent 21 hours making 3000 3-point baskets to raise money for Parkinson’s Si Buko Uganda, a non-profit creating awareness and serving local community needs. This video provides highlights of the effort.   Basketball Therapy & Self-Discovery The words below convey how it feels when I’m playin’…

  • Buried Treasure (What Parkinson’s Gave Me)
    Buried Treasure (What Parkinson’s Gave Me)

    How Parkinson’s gave me a better long-range jumper, a better baseball throwing arm, and a better outlook on life! I was diagnosed with Parkinson’s disease over a decade ago. I was 38. Parkinson’s is chronic, degenerative, and without a cure. Yet, over the last several years I’ve steadily improved my…

  • My Last 5% Are Giving Me 110%
    My Last 5% Are Giving Me 110%

    Conventional wisdom holds that far more than half of my dopamine-producing neurons were dead by the time of my Parkinson’s diagnosis in 2008. I’m guessing that death toll has risen to about 95% now. The remaining 5% (+/-) of my dopamine neurons probably don’t like me much. I’m not sure…

  • Control You, Control Your Parkinson’s
    Control You, Control Your Parkinson’s

    What if there’s a way to ensure Parkinson’s never has control over us again? Is this possible? The mind is often our biggest enemy. Alternatively, it can be trained to serve… The thing with Parkinson’s is the loss of control – the slow, constant erosion of execution of our will,…

  • Reconnecting Through Rhythm
    Reconnecting Through Rhythm

    Parkinson’s disease disrupts rhythm. And sometimes PD obliterates rhythm, battering it beyond recognition. But, we don’t have to accept it this way. Working to maintain mind-body connections is well worth the effort … if you call music, dance, sports, games, or the like, effort. I’m learning every day, but I’m…

  • Oddities and Opportunities in Movement During Parkinson’s Off Periods
    Oddities and Opportunities in Movement During Parkinson’s Off Periods

    When my PD medication wears off, I struggle. But there are times that I actually enjoy the challenge of moving that I face after 11 years of living with PD. There’s a reason they recommend exercising when your medication is working and you are on. But, I also find satisfaction…

  • Carbidopa/Laughadopa: One Pill to Rule Them All
    Carbidopa/Laughadopa: One Pill to Rule Them All

    Someone once told me that laughter was the best medicine. I think it was the claims reviewer at my health insurance provider. Thanks to carbidopa/laughadopa therapy, I can repurpose so many of my Parkinson's symptoms to treat other symptoms, that the worse my PD gets, the better I feel. ‘Off’…

  • Gavin Mogan – Parkinson’s Si Buko
    Gavin Mogan – Parkinson’s Si Buko

    Gavin Mogan has lived with Parkinson’s for 11 years, and finds exercise and a positive attitude essential to maintaining a good quality of life. He is also a certified personal trainer in Richardson, Texas, offering personal and group training, with a particular focus on helping others battling Parkinson’s or other health…

Leave a Comment