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“The Day It All Began”

This is the post excerpt.

“You have a choice to make; which one of the MS medications do you want to start?” asked my MS doctor. Believe it or not, this came as relief to myself.  I knew something was not quite right within me, but my first neurologist said everything was fine and I was normal.  This was the moment that I realized not all doctors were the same.  It was also the moment that I started my journey into the realization that this wacky disease was not the same for everyone!

Driving back from the doctor’s office was numbing.  I was appreciative that I was told bluntly that I had MS, but “I had MS!”  A million things raced through my mind; the first and foremost involved my family.  How would they accept this diagnosis?  Would they look at me and treat me differently?  Would my wife no longer see me as the man she married?  Would I be able to still coach my kids or walk my daughters’ down the aisle at their weddings?  Some may laugh at this, but this is reality.  Just like the movies, everything flashes through your mind.  

After the initial shock wore off, I realized I was a State Trooper with a neurological disease.  I had attained my dream of becoming a trooper approximately 8 years earlier, and was now wondering if my job would be jeapordized.  For the next month I would drive the patrol car aimlessly through my assigned zones logging over 200 miles.  MS took over of mind with the “what if’s, what now, etc…. ”  Looking back, I now view this as a normal reaction to a new diagnosis; but it was anything but normal during that time period.  I am over 11 years into this battle, and the one thing I have learned the most is how one manages and copes with MS. Adapting and overcoming is my mantra in dealing with this disease!  This is the same attitude that the state police instilled in myself. 

Positivity and openness has always been a big part of who I am.  It is these attributes that I lean on in dealing with MS.  Talking about MS has never been a problem, sometimes to the chagrin of my family I’m sure.  That is who I am and how I deal with this journey.  This blog is my way of trying to cope and convey my thoughts and feelings.  Staying positive has been a challenge the past two years, as new symptoms have occurred.  The first nine years after diagnosis was a breeze.  My life was basically the same and nothing changed.  I was coaching soccer and playing on two teams, competing in Tough Mudders, working out on a regular basis, riding my Harley Davidson Fatboy (my baby!) and much more.  I tended to often forget I had MS!  Abruptly this all changed about two years ago with the development of drop foot.  Things taken for granted like walking normally suddenly became a new battle.  Forget about jogging, jumping or having my active lifestyle I was accustomed too.  Running / jogging is never something I enjoyed, but I would kill to run a 5k now that it was taken away from me! 

I have a new normal but strive to get back to my old normal.  This is how I get through each day.  I have a goal and won’t stop until it is achieved.  

Everyday is a battle, and I will continue to fight! 

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“Life Is Good!”

“Life is good!” is the mantra I live by. Multiple sclerosis is responsible for his attitude. Don’t get me wrong, I have always thought this but now it means a little more. I see things through different glasses now! Small things which I may have overlooked in the past aren’t so insignificant now. I try to see a positive in everything. For example, getting ready in the morning is a challenge. Shaving, brushing my teeth and getting dressed are treated like a game. Everyday, I try to get a little faster at accomplishing these simple tasks. Just typing this blog is a challenge! Everytime I am at a keyboard, I try to hit the backspace or delete button less. If I do, this is success for me. If I can’t accomplish this goal, better luck next time!

It is tough to see the good in all things sometimes, as this disease constantly reminds me that it isn’t going away. Every person is different. My way of dealing with it is to make the best of my life. I may not be able to do the things I took for granted in the past but new passions and challenges are welcomed. I have learned to accept my limitations. Now, I try to read more or binge watch new shows. Living my life vicarously through my kids is also more appreciated. I love to watch them in their many sports or activities. Doing things with my family is so important. Recently, we went to Universal Studios and Sea World in Orlando, Florida for a week. We drove from Pennsylvania due to taking my scooter on the back of my truck. The trip was awesome! I was able to do the parks with my wife and kids because of using my scooter. The first day, we did 11 miles of walking (I rode….haha)! This was the first time I really appreciated and wasn’t self conscience of my ride. In fact, I got many compliments on my scooter.

This bad boy let’s me keep up with my active and crazy family! No more missing things because of MS!

A positive attitude is a must. Sure, there are alot of times where I get depressed, but that is natural. Not dwelling on these moments is critical too me. I have to make the best of what life has dealt me and concentrate on what I can do. If that means looking at my world with different glasses, so be it. People constantly tell me that they can’t believe I am so positive about this condition and can joke about it. I have too…..this is how I deal with MS! If I don’t, it will eat me alive. I am too young to let this happen. I will never give in and hopeful that a cure will be found in the near future.

“NEVER STOP THE FIGHT!”

“Giving Up Things”

I won’t lie, living with MS sucks! The worst part of this journey is physically not being able to do things I want too. My life has changed, and it hasn’t changed for the better. I adapt and try new things but this doesn’t fill the void of doing activities that I once took for granted. As I said in my first entry, I used to be a very active person that enjoyed working out, riding my Harley, snowboarding, golfing and so much more. What I miss the most is doing stuff with my wife and kids! Our family is a very active one that participates in multiple sports and physical activities. I was generally able to partake in everything that my two older kids did as my MS didn’t progress to what it is now. My oldest (daughter) is 22 and my son is 20. They at least had there dad in the prime of his life to participate in all facets of their lives. My youngest daughter, who just turned 14 is a different story. I think about her everyday and the stuff I have missed and can’t give her because of this disease. It is not fair to her or me for that matter. The hardest part is knowing that she doesn’t fully understand that I just can’t flick a switch and be normal.

“So, what do I miss the most?”

1. I miss being the husband I once was. This cruel disease affects everyone in my family but I know it is especially hard on my wife. Like everyone else, she has her own life and job issues to deal with which are compounded with a husband that is not who she married. I love her so much that it scares me! What scares me the most is what the future may bring. My mind constantly goes to that place where eventually she can’t deal with it anymore and gives up on us. There is no reason to think this, but it is natural and can’t be stopped.

2. I miss looking towards the future. Ever since I was a child, I always looked forward to the future. NOT ANYMORE! The future scares me. What will I be like next year let alone 10 years from now? Will I be able to walk my daughters down the aisle or dance with them at their weddings? How much longer of intimacy will I have with my wife? Will I be able to hang out and do fun things with my son? Several times throughout the day I ponder these questions with no concrete answers that I can accept. This is my reality that I find most difficult to deal with. Talk about mind games!

3. I miss walking normally. It’s a wierd feeling when you see other people walking effortlessly and envy them and their gait. Walking is probably the biggest activity I took for granted. I have to use a cane or walking stick for the majority of my excursions and if I go to an amusement park, zoo or any other large venue I have to use a scooter. Mentally….this sucks! I am only 47 years old. I still can’t get over the stares and looks given by other people. It’s easy to ignore if you are not the person in the chair nor the person that walks like a drunk on a normal basis. I have dreamed several times that I could walk normally and have woken up feeling my MS got better only to realize it was a tease. A nightmare if you ask me!

4. I miss riding my Harley. Besides getting married and having a family, my biggest dream as a kid was to someday own a Harley Fatboy. In 2004, my wife made this a reality by buying one for my birthday. Man, what a rush it was to ride that iron horse! Everytime I got off after a ride, my mind was clear and I was in good spirits. Due to the deteriation of my right side, I can no longer ride her safely. Instead of selling it, my wife got her license and rides it. I now ride vicarously through her…..even if I get a little jealous, haha.

Overcoming and dealing with these new thoughts and challenges in my life is my new game! Life isn’t all bad, my next post will deal with the positives of MS. Yes, believe it or not, there are positives associated with this disease! My life is not doom and gloom……sometimes it just becomes a little depressing.

“NEVER STOP THE FIGHT!”