Saturday, January 28, 2017

76 Things #23: Slippin' Away


Walk into your kitchen and pour yourself a glass of water to drink.

As you quench your thirst, hold that glass up high and consider how many different physical actions you just performed.

Walking, opening a cupboard, grabbing the glass, filling it with water and holding the glass as you drank it.  In each case, your brain was communicating by sending signals throughout your body.  It happens within a split second:  Right foot move, left foot move, arm raise up, hand grab glass, etc.

Since I have MS, sometimes those signals don't go through.  Scar tissue, known as "lesions", have formed on certain areas of my brain and spinal cord and these prevent my brain from communicating smoothly with various areas of my body.

Which brings us back to that glass of water you are holding. 

Sometimes, I'm having a rather normal day, holding a cup of water and the next moment I'm surrounded by broken pieces of glass. 

It happens incredibly fast.  One moment I have total control of my functions, the next moment the signals from my brain to my body hits a road block, my hand loses it grip and the drink falls to the ground.


It's frustrating and embarrassing but part of life with multiple sclerosis.  The #23 thing you might not know about (my) MS.







Friday, January 27, 2017

Well Known People With MS

I'd also add Neil Cavuto, Jack Osbourne, Richard Cohen and Ann Romney to the list...

http://www.medicalnewstoday.com/articles/315451.php

Click above to check out the list.

My favorite quote from Richard Pryor about multiple sclerosis is what MS just means More Sh*t.  #truth




Wednesday, January 11, 2017

(Not) The Sound of Music

Today is MRI Day for me...for those not familiar with it - in my world - it's kind of like the opposite of Christmas morning.

In honor of the day, I'm sharing my Ode to the MRI.  I hope you enjoy...feel free to comment or share with others!

https://www.msconnection.org/Blog/June-2015/(Not)-The-Sound-Of-Music


Saturday, January 7, 2017

76 Things #22: Self-Reflection

Have you ever gotten lost in a moment, staring off into the distance…?

If not, you should try it.  Block out sounds or worries and let time stand still.  I do this often as a way to relax and reflect.

It doesn’t have to be a formal setting – for me, maybe it’s sitting on my couch as I watch the tree blowing in front of our house. 

It’s not scheduled, I do it when the mood strikes.  I stare off and just let myself go.  Maybe I think of something new I want to write, a funny memory from childhood or I'm inspired for a new family adventure.

I haven’t always been this way.  Growing up, sitting still wasn’t exactly on my list of things to do. 

As I got older, life happened…career, marriage, starting a family – it’s hard to find time for self-reflection in the midst of such beautiful chaos.

But, then something came along and slowed everything down for me – MS.

Multiple sclerosis didn’t open my eyes to finding inner peace; rather, it’s my fear of needles that spurred my introduction to this form of relaxation.

Back in 2010, I started a new treatment for MS called IVIG.  I would go to an infusion suite and be stuck with a needle and hooked up to an IV.  Over the next 4-5 hours, the medicine would drip, drip, drip.  Each month, I would do this for two consecutive days.

And every time, I was terrified of getting stuck, so I developed a coping mechanism.  As the nurse worked the needle into my unforgiving veins, I would stare off…out the window and just escape the moment.  I was no.  longer.   there.

I wasn’t traveling away to a beach or some other exotic locale – I was instead floating away, to a different world where needles didn’t exist and the motto is a brownie sundae a day keeps MS away.

Over the years, I’ve grown quite fond of this form of meditation and can do it anywhere while staring at anything.  In fact, I’ve probably done it several times while writing this story.  My wife and kiddos know it’s a regular part of my day.

Ironically, even though its genesis was out of my fear of needles, I believe its brought a certain amount of inner peace into my 24 hour, 7 day a week struggle of living with a chronic disease.

It’s another silver lining I’ve found while living with multiple sclerosis and the #22 thing you might not know about (my) MS.



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