Monday, August 14, 2017

Excited to announce....

....my first radio show!!


Please check out the first installment of, "A Life Less Traveled", my online radio show that airs on the MS and Me Radio Network.

https://www.youtube.com/watch?v=-XOd3OQ8zc4&feature=youtu.be



Thursday, August 3, 2017

My "Everyday Health" Interview

I've found that baking and doing jigsaw puzzles are two wonderful ways to bond with the family, stimulate my mind....and it's a great break from the doctor visits, treatments and management of care that accompanies life multiple sclerosis.

http://www.everydayhealth.com/multiple-sclerosis/living-with/how-create-ms-free-zone-home-life/

I was honored to be interviewed for this story and it's the #30 thing you might not know about (my) MS.


The latest puzzle I'm working on, "World of Dogs"


Saturday, July 29, 2017

I finally got hand!


This has been a tough year health-wise.

I’ve remained in great spirits but my brain and body just haven’t been connecting in recent months.

Not being able to tie your shoes, button your shirt or cut your own steak can be frustrating and a bit humiliating ­­­­- but I’m ecstatic to report that it appears I’ve overcome my latest exacerbation.

I’m not sure what I’ll call my latest flare-up: numb left hand?  But, numb just doesn’t accurately describe it.  I can feel things.  When I pet my dog with my left hand, I see he is a dog and know what he should feel like but with my left hand it feels like a rough surface, not soft fur.  And that’s whether I’m petting our pup, washing my hair or holding a glass, they all feel odd.  And, when this sensation was at its worst, I was unable to grip anything with my left hand, too.

It was as if somebody had put a cast over my left hand – it no longer felt part of my body.

But, as of today, I’ve recovered about 90% usage of it.  It’s not perfect, I still feel the constant tingles all over my hand – but I can grip with it, get dressed and even cut my meat.  And thankfully, I can now type with both hands again!

Over the past couple months, my focus has been on:

ü  Physical therapy – performing hand exercises, at least three times a day.  I had to stare at my hand to make sure I was actually doing them, because sometimes I couldn’t even feel if I was opening and closing my hand.

ü  I always tried to use my left hand, even when it wasn’t needed.  I’d use my left hand more to try and pick something up, open a door, etc.  I call this my “use it or lose it” mentality.

ü  Not stressing about my hand.  Meditating.  Or, as I like to joke, I just tried to “will it away”.

Are these the reasons why my hand has improved?  Perhaps.  Or maybe it was always meant to only last two months.  I know I can’t “will” MS away, but I like to think it helps.

I feel ya, George.  I finally got hand again, too...both of them!

Wednesday, July 19, 2017

"The Mask" is now posted on MS Connection

Living with multiple sclerosis, I often feel like I’m wearing a mask. A disguise of sorts for protection. But sometimes, it’s hard to tell whom I’m protecting more–myself or others around me....

Tuesday, July 4, 2017

Declaring Independence from MS


In honor of America's 241st birthday, a haiku about MS.  Hope you enjoy!

Today I declare

Independence from MS

I so wish to say


Alas, no such luck

It’s a bad relationship

That I am stuck in


Dizzy, pain, fatigue

Memory, balance, vision

MS has it all


But wait, there is more

Numbness, tingling, tremors

And no heat for me


The hits keep coming

I even learned a new word

Spasticity…what?


It’s more than symptoms

It changes who you are and

Who you thought you’d be


I want to beat it

But how can you beat yourself?

It is who I am


Today I declare

Independence from the fear

Of living my life


Now that I can do

Just go where the day takes me

Always with a smile


I might stumble and

I will probably fall down

But that is ok


But I want to live

I still need a lot of rest

And finding the shade


Drink lots of water

Listen to my body when

It says slow down, Mike


I can still be me

Just take a different path

A life less traveled

With MS, it does feel like aliens have taken over my body...

Monday, July 3, 2017

Multiple Sclerosis is like a box of chocolates...

...you never know what you're gonna get.

It has been a trying couple of months for my health and my latest story, now posted at The Mighty, covers some of the obstacles I've faced.

https://themighty.com/2017/07/ms-being-like-box-of-chocolate/



Saturday, July 1, 2017

What "Second Wind" Means to Somebody with MS

The dog days of summer (in the USA) are here and I thought it was an appropriate time to re-post a story I did on finding a "second wind" while living with MS.

"...the phrase second wind, describes pretty much every moment of every day for most of us living with multiple sclerosis"

Click below to read the rest:

https://www.msconnection.org/Blog/August-2015/Wind-Quest




Wednesday, June 14, 2017

Jamie-Lynn Sigler Isn't Ashamed of Using a Walking Stick for Her MS

Whenever I use my walking stick (i.e., cane), I do get self-conscious, worrying about what others are thinking. 

I'm concerned that people are staring or wondering why somebody that looks like me needs it. 

I hope my wife and kiddos don't view as me less of a husband or father - I want them to know that I'm always their teacher, comedian and protector - stick or not.

I don't regularly use my cane but when I do, these are just some of the mental and emotional hurdles that follow.

Thank you, Jamie-Lynn for sharing your thoughts on this topic:

http://www.self.com/story/jamie-lynn-sigler-multiple-sclerosis-walking-stick


Wednesday, May 31, 2017

World MS Day 2017

In my previous careers, friends and colleagues often remarked on the perpetual smile I wore each and every day.  Morning or night, Monday or Friday, wherever I went, my smile seemed to follow.

Sometimes, I worried my penchant for smiling might actually work against me…perhaps my grin meant I wasn’t that serious about my job, or worse, I was hiding something behind my Nixonesque smirk.

The truth is, I was just happy.  No ulterior motives.  Even in my final year of active employment, when I instituted what I considered “smoke and mirrors” (i.e., doing whatever was required to survive in Corporate America while managing an aggressively spreading chronic disease), I still couldn’t wipe that smile from my face.  To borrow from Popeye, “I yam what I yam!”

That’s not to say I didn’t have my not-so-sunny moments.  Those usually centered on my daily commute…but I do remember one particular office politics pet peeve that always got the best of my spirits --- the “brainstorming meeting”.

I get irritated even writing about it now.   “Brainstorming” and “meeting” are two words that should NEVER be used in the same sentence.  You don’t schedule ideas.  No.  No.  No, no, no.  If I could avoid those meetings, I would.  Sometimes, I would just do my best Don Draper impersonation and just get up and walk out (and yes, I did it with a smile on my face!).



Having a brainstorming session sounds great, but here’s the reality:  No new ground is covered.  Ever.  Employees say what they think management wants to hear thereby checking the proverbial boxes of “contributing”, “adding value” and “collaborating”.  Added bonus if they achieve all three competencies and create no additional work for themselves.

The best idea will never occur while 10 people are sitting around a table talking about what the best idea should be.  There is no magic in that.  It’s like warming up some store bought “Chips Ahoy” and calling them fresh, out of the oven, home-made cookies.  No!

This brings me to what I’m writing about - “World MS Day”.  That’s today, May 31, 2017. And I’ll be honest, I don’t know how I feel about it.

Do I like that there is a worldwide day dedicated to raising awareness of multiple sclerosis?  I guess so…I certainly appreciate the sentiment. 

On the other hand, May 23rd is “World Turtle Day”, May 25th is “Geek Pride Day” and clear your calendars now because June 21st is “International Yoga Day”.

I have no qualms with geeks or yoga and root for that tortoise every time to take down that obnoxious hare but at what point – when seemingly any and everything has its own “day” - do these 24 hour commemorative periods cease to have any true meaning?

What does “World MS Day” even mean?  I’m pretty sure it’s not a celebration for those of us with MS.  And I had MS yesterday and will still have it tomorrow.  According to the “World MS” website, it is a day to “bring the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.”

As with my riff on “brainstorming meetings”, I just don’t see the magic.  I have a hard time writing a meaningful story about living with MS just because there is a specific day dedicated to that.  I know, I’m being obtuse….a lot of people worked hard to create this day for those of us with MS and for that, I am thankful.

And I’m hopeful that, with the help of today, additional money will go to MS research – every dollar matters – and for that, I’m forever indebted.

But to borrow from another cultural reference, “Nobody puts MS <Baby> in the corner”…and I know it’s not intended to be that way, but it kind of feels like it.

I don’t speak for the MS community, just for myself.  But I don’t want a day, a week or even a month.  A ground-breaking idea doesn’t occur at work because you schedule a meeting to discover one.  And I don’t think somebody’s awareness of multiple sclerosis is increased, just because they are told that today it should be.

Read my previous entries.  Keep following my blog, check out what I’m writing for The National MS Society or TheMighty.com…forward and share with others.  Ask me questions, anything and anytime.  I’ll be happy to answer.

No store bought cookies from me, just the real thing.

Tuesday, May 30, 2017

Law & Order: Multiple Sclerosis Victims Unit

In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups: the brain and the spinal cord. Because of this, often it’s hard to tell the difference between MS and non-MS-related events. These are those stories.

Dun dun!

https://themighty.com/2017/05/multiple-sclerosis-law-and-order-special-victims-unit/

Check out my latest story, posted at The Mighty!


Saturday, May 13, 2017

9 Year Diagnosisversary™

Nine years ago today, I was in beautiful Rochester, Minnesota. 

I'd spent a few days during the previous week undergoing several tests at The Mayo Clinic.  They quickly determined I did not have Crohn's Disease - which I was originally misdiagnosed with in Texas...until my GI doctor, discouraged by the extent of my symptoms, referred me to the Mayo Clinic for a second opinion .

But, if it wasn't Crohn's, what was the answer?

As we waited for test results, my wife and I spent the weekend in nearby Minneapolis. 

We enjoyed the company of my Aunt and Uncle...my wife took in the Mall of America while my Uncle took me fishing in Wisconsin (Fishing, post-spinal tap, probably not one of my wisest decisions...but one I stand proudly behind.  I was not going to sulk in my pain after that invasive procedure, instead I chose to spend it enjoying life.)

So then on the following Tuesday, May 13th, the grand mystery that led us on this medical "vacation" finally came to an end with a clear diagnosis: Multiple Sclerosis.

They also determined some other oddities about my health:  my stomach processes food faster than 99% of the general population (which was probably the red herring that caused my Crohn's misdiagnosis).

Since they viewed my stomach as so unique, The Mayo Clinic doctors requested I stay a few extra days to have more tests done and be part of a study.

We had already been there more than a week...

I politely declined.  I was "tested" out and just wanted to get back home.

I wrote about how and why I recognize my Diagnosisversary™  here, if you'd like to check it out.

Nine years.  Wow.  Carpe diem, because time flies, even more so when you are living with multiple sclerosis!
In all my post-spinal tap glory...





Thursday, May 11, 2017

76 Things #29: Uncomfortably Numb


Over the past few days, the lyrics to “Comfortably Numb” have routinely been playing in my head, particularly this part of the song:
My hands felt just like two balloons
Now I've got that feeling once again
I can't explain you would not understand
This is not how I am


I woke up Sunday morning with a tingling sensation in my left fingertips. 
It’s an irritating sensation, one that has previously traveled up and down my right arm (the feeling still faintly resides in my right forearm).

Unfortunately, when you have MS, waking up with new or odd sensations/symptoms, is a common occurrence.  Life goes on.  And so it did.
It was a beautiful day that our family enjoyed together, tingles or not.

On Monday, I woke up and the feeling had spread beyond my fingertips to encapsulate my entire digits from pinky to thumb.
As of this morning, it’s now my entire left hand, forearm and shoulder.

You know that feeling you get when you wake up and your “arm is asleep”?  That’s probably the best way to describe it.  Except, much to my dismay, my hand and arm continue to hit the snooze button and still haven’t woke up.
Or, to borrow from Pink Floyd, the upper part of my left body is resting (un)comfortably numb.

Trying to open a jar, crack open pistachios or button a shirt is comedy gold.  Holding anything with my left hand is problematic. 

Can I pick up a cup or book with my left hand?  Sure, after just a few seconds of holding it, my hand and arm start to shake – it’s almost as if the MS is saying, “Nope, not going to happen…nice try!”
And much like when your arm or leg “feels asleep”, my left hand and arm feel very heavy to maneuver around.

Adapt.  Adjust.  Abide.
That’s my motto and I’m sticking to it.

When my daughter comes home from school, races over to hug me…and I have to pause and ask her kindly to grab only my right arm – well, I kind of want to take that motto and throw it through a window.
But like any new MS wrinkle, it’s part of my new normal.  Maybe for a few more days, months…who knows. 

It’s also the #29 thing you might not know about my MS.

Friday, April 21, 2017

76 Things #28: Wink, Wink


"Spasticity" is a common symptom of MS and the term covers a lot of ground, including:  annoying twitches, spasms, involuntary movement of limbs or painful tightness in my joints.

I'm frequently visited by this symptom all throughout my body but in particular on my face.  Lately, I feel like the spasms/twitches have upped their game in and around my eyes, cheeks and mouth.

Note:  For clarity sake, I can't really tell the difference between a spasm or a twitch.  I mean, really, it's kind of like a punch vs. a jab in the face.  So for purposes of this writing, I'll be using the terms interchangeably.

Trying to carry on a conversation while they are happening can be frustrating.  Often, the spasms can be so intense they overpower my thought process, leaving this line from Pink Floyd's Comfortably Numb echoing in my ears, "Your lips move but I can't hear what you're saying..."

That's the physical impact.  Then there is the mental/emotional.  I wonder, can you see my lip spasmingIs the twitching of my eye causing you to think I'm winking at youI am not an animal!

You know that feeling when you are having an important conversation...maybe at work with your boss, an old friend you haven't seen in awhile, or perhaps while on an interview...and you worry they are staring at the newly formed pimple you'd just discovered that morning?  Or maybe they linger too long looking at your mouth so you become concerned that you have something in your teeth?  Like a big piece of spinach?

Similar thoughts and concerns are cycling through my mind as the spasms wreak havoc on my face; I know I shouldn't be embarrassed by them, but that is easier said than done.

And these facial twitches and spasms are the #28 thing you might not know about (my) MS.




Tuesday, April 18, 2017

76 Things #24: Update

My sensation of having wet feet remains...but has now spread to my back and left shoulder.

It's as if somebody has taken a drink and splashed it against my back.  Nothing feels like it is dripping off of me, but half of my back and most of my left shoulder feel drenched.

I've had this new sensation for about a week now.  It's not constant but it is pretty regular.  Maybe it will disappear tomorrow, or perhaps even spread somewhere new.

Round and round it goes, where the MS stops, nobody knows...


Thursday, March 30, 2017

When You Have MS, You Can't Live Without...?

"...Adjust, adapt, and abide — that's my motto. It's not easy, and it's not without quite a few bruises, some tears, and a whole lot of needles (ha). Living with MS, I have no idea what tomorrow might bring, let alone 30 seconds from now, and I can't imagine riding this crazy roller coaster of MS without my family by my side.”

Read more of my answer here - and see what many other's with MS said as well.

And many thanks to Healthline for all the help they provide the MS community; I'm flattered they asked to hear my thoughts!


Tuesday, March 28, 2017

Pop Culture & MS #ChatMS

This information was gathered from our most recent #ChatMS.  If you haven't checked it out, yet, I hope you join us next Monday at 7 p.m. EST.

Below are responses, in random order, from just some of the questions discussed.

Favorite blogs:


@MSandMeRadio Online radio show every Thursday

Magazines related to MS:


Celebrities followed (on Twitter) specifically because they have MS:



If I missed anyone or anything and would like me to add it to the list above, please let me know.  Thanks to everyone for attending and I look forward to next Monday's #ChatMS!

P.S.  If you have any questions about how to join a #ChatMS, just let me know.



Monday, March 27, 2017

Drinking Coffee Prevents MS?

Interesting results from this study...although, with the amount of coffee/caffeine I drink, you'd think I'd already be cured of MS...let alone never develop it! :)

To read about the study, click here.



Sunday, March 12, 2017

76 Things #27: Getting Carded

Slurred words. Stumbling around from loss of balance or coordination. Impaired vision. Falling down.

Sounds like a night where you've had a little bit too much to drink?

Perhaps.  But these are also some very common symptoms of multiple sclerosis.

Over 100 years ago, these similarities led to MS sometimes being misdiagnosed as chronic alcoholism.  As I ponder that thought, it's both amusing and terrifying.  I also wonder, what will folks say in the year 2117 about our current knowledge and understanding of multiple sclerosis?

As I wrote in the #17 thing you might not know about my MS, waking up with bruises from my stumbles and bumbles is a common, almost daily event in my life.  Forgetting, slurring words and other cognitive confusion can happen with nary a drink in me.

Because of this, I carry around a laminated card in my wallet, courtesy of the National MS Society, that states I have multiple sclerosis and highlights some of the more common symptoms of MS that might give somebody - perhaps an alert police officer - the wrong idea about my current state.

Just sharing this seems silly and a bit surreal...but it's true, and the #27 thing you might not know about (my) MS.






Thursday, March 9, 2017

Don't Sweat the MS: MS Connection

My latest story is now posted at the National MS Society.  Please check out the link below and feel free to comment or share with others!

Don't Sweat the MS: MS Connection: Don’t sweat the small stuff. That’s how the saying goes, right?
But what if the seemingly smaller aspects of your life are actually the ones that drive your engine and spirit?



Wednesday, March 1, 2017

76 Things #26: In a Pickle

You know that awful sensation you get when you hear (or perhaps just think about) nails on a chalkboard?

I discussed in the #21 thing how touching certain items sends these uncomfortable shivers throughout my body.

But it's not just through touching - that spine-tingling, hair raising reaction also happens when I eat certain foods.  And unfortunately for me, it covers just about every vegetable I like! 

Here's the current list of foods that are on my no-no list:
  • Bell peppers
  • Broccoli
  • Green Beans
  • Snap Peas
  • Cucumbers 
  • Pickles
There is something about the texture of these veggies that is a catalyst for the dread felt throughout my body.

As I eat these foods, you can actually see the hair standing up on my arms!

I feel compelled to set an example of eating my vegetables for my children, so even when they are served at home, I labor through eating them.  Plus, I really enjoy these veggies and don't want to miss out on their health benefits.

As I do my best to eat my veggies, the wincing and expressions on my face as I try to ward off the impending chill can be theatrical to watch.

Life with MS:  It's a constant game of adjust, adapt and abide.  As a result, there is rarely a dull moment.  Even when you are just trying to enjoy a pickle with your sandwich.

And that is the #26 Thing You Might Not Know About (My) MS.

 





Thursday, February 23, 2017

76 Things #25: Hanging with Trash

What's one of your pet peeves?

Somebody that drives too slow in the fast lane?  Chews with their mouth open?  Cuts in line?

We all have them, nobody in this world is immune to being irritated by small and seemingly innocuous situations.

As for myself, one of my biggest pet peeves is one that started to get under my skin only 6 or 7 years ago. 

I had accepted the reality that standing for an extended period of time was too painful.  If I tried "toughing it out", I'd only make the next couple hours (or even days) unbearable.


So I started sitting.  Out shopping with the family?  Time to go find a bench.  Out for a walk with the family in a park?  Good idea to find a nice resting place to rest and re-charge.

What I quickly learned, though was whether at a mall or park, most benches are situated next to....the trash.

Why?  Is this taught on the first day of City/Park Planning 101?  Remember students, wherever you put a bench is also great place to put the trash can!  Nothing says, "comfort" like the smell of 3 day old Taco Bell!

My complaint is a bit tongue-in-cheek because, let's be honest, there are more important things to worry about.

But, the next time I'm sitting on a bench resting my leg, I'd love it if the odor of garbage wasn't in the air....or I wasn't constantly waving away the flies and bees that usually find their way to the smelly and sticky receptacle.

The next time you are at a public place with benches, observe for yourself...most of them are right next to a trash can.  A pungent lesson I learned and the #25 thing you might not know about (my) MS.

Yum, the sweet smell of....trash






Thursday, February 16, 2017

An Exciting Honor!

The best part of writing about living with MS has been the connections I've made with others across the country and world.

I love hearing from other folks that have MS, know a loved one with it or are just curious about the disease.

That's why I write.  To raise awareness and understanding of Multiple Sclerosis.

It's been a "slow boil", as I tell my wife.  My energy isn't always there and I generally dislike 90% of the stories that I start...the other 10% get posted.

I'm working on producing more; my dream is to have a steady stream of content on my website to help spread the word about being a spouse, parent, friend and person with MS.

In the near future, I hope to start podcasting my stories or just about life in general.

So it was with much excitement that I learned today that my blog was featured in Stairliftreviews.co.uk Top 100 Blogs - wow, what a honor!

Check it out here, if you'd like - http://www.stairliftsreviews.co.uk/100-best-disability-blogs/ - and please share my blog/stories about MS with others.

Saturday, February 4, 2017

76 Things #24: Wet Feet

Have you ever stepped in a puddle while walking through your house?

Maybe one of your pets left a “present”, or your kiddo spilled water – whatever the reason, it’s an unpleasant feeling.  If you are barefoot, you dry yourself…and if you were wearing socks, then you put on a new pair.

It’s a great feeling to put on a fresh, dry pair of socks.  I probably do it at least 3-4 times a day.  But it’s not because I keep stepping in water; rather, the feeling of “wet feet” is another unfortunate symptom of my multiple sclerosis.

So, for me, that feeling of warmth and comfort after putting on a new pair of socks is a fleeting one and within hours, or even minutes, my feet start to feel like they are wet, as if I was standing in a big puddle.
Going barefoot isn’t an option; I previously wrote about my need for socks – without them, my feet feel like two ice blocks.

When this symptom first started, I thought I was losing my mind.  I blamed the dog, my kids, my clumsiness – something had to be the cause of my feet constantly getting wet!  

I’d sit there and fruitlessly attempt to dry my feet – even now, I still have to double-check with my wife from time to time, just to make sure my feet truly aren’t wet.

The sensation of “wet feet” – it’s the #24 thing you might not know about (my) MS.


Friday, February 3, 2017

MS Fatigue - a Theory

Thought this was an interesting video that might explain why so many of us with MS suffer from awful (and constant) fatigue.

You know how when you get the flu, you are usually incredibly tired and can't get out of bed? Your body is telling you to rest, so you can get better and overcome whatever sickness you have. For those with MS, unfortunately, that's how we are always feeling.

Our brain, led by the mitochondria, has almost convinced our body that we are sick and need that rest.
Just one theory - thought it was worth sharing!
  
Click here to see video!



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