Wednesday, November 27, 2013

76 Things: #2

As of today, my Hyundai Genesis (which I bought new, in early 2009) - courtesy of (my) MS -  has been driven only 16,591 miles.

Comparably, according to the U.S. Department of Transprotation, the average *annual* miles another male, in my age range, would put on their car is 18,858 miles -- 14% higher than I've driven my Genesis in almost five years!

There are many contributing factors as to why I've driven so little, most of which will be covered in future "Things."

I'm blessed to have such a patient and wonderful wife, who doesn't mind being the primary driver in our family.  This has not been an easy transition for me. Back in the day, I took great pride in being the "driver"; whether it was a 1/2 day trek or just a trip to the local grocery store.

I'm not sure how she does it, especially since she doesn't have XM radio.  In fact, I don't know how anyone survives the steady stream of commercials and repetitive play list that hasn't been updated since 1993 (and not the fun kind of repetition, i.e. The Proclaimers from "How I Met Your Mother).

Enjoy the link (in bold, above) and Happy Thanksgiving!!






Monday, November 25, 2013

76 Things: #1


in no particular order
Over the past couple of years…and particularly within the last few months…I’ve become hypersensitive to certain sounds and sensations.  Some examples:
ü  Metal on metal
ü  Chewing certain foods
ü  Textures of fabric on my clothes, even sheets
These sounds and sensations send uncomfortable, almost paralyzing, shivers up and down my body.  Something as innocent as my children’s spoon hitting their bowl as they eat cereal is like a punch in the stomach…I have to grit my teeth just to clean pots and pans…and I’ve lost the appetite for eating things like sugar snap peas, sliced bell peppers or a fresh pickle spears (all of which I used to love).
As my neurologist explained, my brain isn’t communicating correctly with the rest of my body so it’s amplifying and confusing certain senses.  Will this ever go away?  Get better…or worse?  As with most things MS related, he couldn’t really say.
Because of these noise sensitivities, I hadn’t been to the dentist in a long time and I’m paying the price now.  I had a root canal last week and go in this morning for additional fillings. 
I’ve been walking around with agonizing pain in my teeth for weeks so I wasn’t surprised.  Cold drinks were a no-no, even laughing caused discomfort and there was a constant throbbing.
Even though I knew what had to be done, I couldn’t bear the thought of sitting in a chair, hearing those noises….knowing how difficult it would be to listen to the clinking and other sounds of a dental visit. 
I told my wife I probably would need to be heavily sedated or knocked out just for a routine cleaning. We researched what options are available and found a potential solution – laughing gas.  Also called nitrous oxide, this form of sedation dentistry was a much welcomed aid for my cleaning and root canal last week.
For now, adapting to my hypersensitivity of everyday sounds and sensations...my dogs nails on the hardwood floors, my wife innocently eating popcorn, my daughter biting her spoon...these are all examples that (my) MS is like a distinctive box of chocolates, I never know what I'm going to get. 
 

My Momma never mentioned anything about MS being like a box of chocolates...

 



Friday, November 22, 2013

76 Things You Didn't Know About (my) MS


As I continue to share about my life with multiple sclerosis (including updates on my health), I wanted to create another avenue to communicate on a more consistent basis.
Over the past few years, I’ve learned that I have a *very* difficult time cranking out short blurbs or updates.  Because the impacts of MS are so unique, I believe there is tremendous value in providing a story where anyone reading it, can relate to the subject matter.   
I liken this situation to the standard post-game interview (think Super Bowl or World Series).  I always laugh when I hear a sideline reporter ask, “What are you feeling right now?” to a coach or player that just won.  Do you really want to know how they feel?  They want to be celebrating with their friends, coaches, teammates…they want to be sending texts, popping champagne and basking in the glory of their success.  And the last thing they want to be doing is putting all that on pause to fulfill an obligation to the TV network televising their game.
When I try to shorten or change my writing style, I often feel like one of those athletes/coaches, giving the canned response of….”give the other team credit”…”I owe it all to my teammates”….”we’ve worked so hard” and it just doesn’t feel right.
I’m not writing for number of web clicks, or getting paid and I’m pretty sure no Pulitzer Prize is in my future.  I do this to raise awareness for MS….so at least one person understands the disease a little better.  And if I believe what I’m producing doesn’t feel like it is succeeding in that goal, then I’m not posting it (let alone finishing).
In “76 Things That You Didn’t Know About (My) MS?”, I will provide short glimpses into something that you didn’t know about (my) MS.  To borrow from both Arsenio Hall and Johnny Carson (a historic moment in the annals of literature), I’ll be aiming for “Things That Make You Go Hmmm…I Did Not Know That (About MS)”.

Hmmmm...


 
An important point.  Use of the parenthetical (my) is intentional.  The symptoms of Multiple Sclerosis are as wide-ranging as the degree in which they might disable you.  The moment I was diagnosed at The Mayo Clinic, the neurologist told me that I could wake up the next day and be mostly symptom-free well into the future…or not, and instead wake up that next morning and need a wheelchair.
Many similarities certainly exist for those of us with MS but the reality remains that no two cases are the same and none follow a projected course.  That’s an important point for me to stress.  As I write about my condition, I’m fully aware how blessed I am compared to many others with this disease.  I also know there are many whose MS is not as aggressive as mine and may never impact them to the degree that it does to me.  But this isn’t a competition….to not have control over your own body, to have something interfering with your brain’s communication…and to not be entirely sure what your future will hold because of this disease (and nobody knows how or why you got it) – it sucks for anyone, period. 
I originally thought “101 reasons” because that seems to be the standard reference but 101 has no significance to me, so it rings hollow.  Why 76?  Well, as I remind my wife every 4.2 days, I was a bicentennial baby….in fact, I was supposed to be born in 1977 but there was no way I was missing out on entering this world on the 200th anniversary of America.  So, 5 days before Christmas in the year 1976, at 11:57 a.m., I greeted this world with a smile, Santa hat and Uncle Sam costume.  Ok, maybe not the final one but I do take great pride in that birth year, so 76 it is.
I’ll start this up on November 25th, and share the 76 things you don’t know about (my) MS on a very regular basis.  I have a dentist appointment first thing that Monday…and as it works, the 1st thing you might not know about my MS has to do with just that, going to the dentist.
I’ll also continue to write longer stories, too (and have nearly completed my post about some of the setbacks I had this summer). 
Please share my page with others that you think might be interested in learning about MS.  Also, if you have any ideas of your own, or questions about (my) MS, please leave me a comment here (or shoot me an email), I’d love to hear from you.

Thursday, November 7, 2013

My Own Penske File


Google “multiple sclerosis” and you are provided almost 41 millions results in .22 seconds.  Further refine your search to “multiple sclerosis symptoms” and you’ll now have about 24 million links to browse – at your leisure  - in a slightly longer response time of .23 seconds.

I’d wager that most of these results include four common themes:
ü  It’s an auto-immune disease.

ü  Over 2.3 million people worldwide are afflicted by multiple sclerosis.

ü  The medical community is generally stumped as to how or why over 2 million people woke up one day and learned they had MS.

ü   A rather extensive list of ailments that are associated with MS, ranging from fatigue to paralysis.

It’s within that list of symptoms that I find one of the many reasons for writing…for telling my story. 

THIS IS LIFE.  THIS IS LIFE ON MS.

I believe that what’s lost in these medical explanations is the human side of this disease.  You can click on these millions of results but at some point, you’d become desensitized to life with MS.  How many different ways can you explain numbness, tingling, pain or impaired vision?  But no Wikipedia entry or medical journal can do justice to explaining what it’s like living each day with MS.

What you won't find in those google results -- 
  • My freezer has an even ratio of ice packs to frozen vegetables.
  • Shall it ever be required; I own enough pairs of socks to outfit an entire NFL roster.
  • Often, unsure if the latest ailment is a new MS symptom or not, the Wentink home can resemble a lab, with me playing the role of mad scientist (sans the white jacket).
  • My fear of heights has been matched by a fear of finding myself in a situation/conversation that requires standing.  Yes, I really do mean that. 
  • “Can you wake Daddy up to let him know dinner is ready?” echoes through our walls a lot more than I’d like.
  • If I have an untimely response to one of my wife’s texts, she’s worried I fell down the stairs.  Again.  
  • A needle goes into my body.  Every day. 
  • Lights are constantly turned off not to save on power bills but to alleviate the discomfort it causes my eyes.

“STRATEGERY”

In corporate speak, I’d classify the above as “tactical” challenges…but for me, the larger “strategic” issue that weighs on me is the reality that someday in the near future I will disclose my illness to my six year old son. 

In my dream world, this conversation would never happen.  Instead, on my tombstone, it would read “Here lies Michael Wentink.  Wait, he had MS?”…but I have to balance this fantasy with the ever evolving and oh so observant mind of my son.

No, I don’t have the pressure of a big presentation nor do I have to work all weekend on the Penske file but I’d welcome back those worries over wondering if my son will still view me in the same rock star, super hero status that he currently does, after learning about my MS.  Maybe I can Google the answer to that?

George, "working" hard on the Penske file...

 

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