Real Life Stories of MS

Where it all began!

Contribution by Derek McIntyre


Before I get into my journey and life with MS, please allow me to introduce myself. My name is Derek and I’m 32 years old – 33 in 2 short months – man I’m getting old! I’m the youngest of six, and I have a lot of nieces and nephews, as you could imagine.

As far as my youth, it was pretty much the same as any other guy who shakes his head and cringes when he talks about his youth. I, just like any other young boy, was a mess. I did all kinds of stupid and usually dangerous things that looking back on weren’t smart. I can think of 100’s of things I did that, looking back on carried so much risk and that I somehow escaped unscathed and no worse off except for one time that changed everything for me. At the time it wasn’t as catastrophic as I see it to be now, but it changed me and every part of my life.


It all goes back almost 20 years, when I was only thirteen. I was playing hockey, which I did a ton of as a kid, every sport was life to me at that time, but I threw a temper tantrum and slammed my hockey stick on the ground. And, like every parent warns their kids about, it came back up and smacked me in the eye. A few days in the hospital and a goofy looking eye later, life changed. After that, life was different. Life as I knew it changed. I shied away from things, I avoided things that were too difficult, and I grew wider by the day.

Fast forward to my 20’s. I failed out of community college after barely finishing high school. I smoked; I worked in a bar, and I had grown to over 300lbs. I was huge, I was lazy, and I was unhealthy. Just like that though something changed in me. I started making more healthy decisions, I stopped working in bars, and I even went back to school. This time, I was doing really well. I started to see myself differently, started to welcome challenges and, more importantly, progress. As much time as I had wasted, I was making up for it and catching up on life. Then MS came calling.

For as well as life was going, there were always little episodes of unexplained balance issues, or vision problems. I would dismiss these as nothing or blame them on something else like because I was drinking at the time. It had gotten so bad that one night I fell over a small cliff and was clinging to small branches until my friend was able to jump down and pull me up. Other times my legs would just stop working or I wouldn’t be able to speak. I’d slur my words without a single drink. I let this stuff go on for a few years, and then like a ton of bricks it hit me. My legs just completely stopped working in the middle of the day. No alcohol, no fatigue, just useless immovable legs. Well, that day led to a few day visit to the hospital involving a lumbar puncture. Then I got the news. Still one of the scariest moments of my life, I can still feel being there and getting that news. I had no idea what MS would mean for me. I thought life was over, I thought I was going to be wheelchair bound in less than a year!

Well, that was six years ago. I can confidently say that, without changing things in my life, I’d probably be in that wheelchair. Here I am today, having removed all of the things in my life that were making this worse – the weight, the smoking, the complacency and the laziness. I still have my issues with MS – mostly my legs completely quitting on me – but I’m still going to do whatever I can to make it less severe. And I still have a long way to go.

Since I was diagnosed, I was able to put a reason behind my little “episodes”. I now knew why I was having these little issues and, more importantly, I knew I had to change a lot of parts of my life. I still have a ton of issues with MS and with my body not cooperating to this day. Every day comes with some degree of difficulty, – in most cases I can grunt through them, but there are other times where sitting and resting are my only options to get through these episodes. Luckily these more severe experiences only pop up a few times a year. As much as this is awful, and I hate it more than anything, it’s become part of me. It has become my reason, my motivation, and my drive to be better and to never quit or give up. As much as MS has taken from me, and I will share in future posts, it has given me a part of me that I never had.

The friends, the family, the support I’ve received since I’ve been diagnosed are the reason I’m able to do everything I still can. My family has been incredible and supportive of my struggle with MS. My friends have time and time again shown me that they will do whatever they can to help, whether it’s digging me out of a pile of brush on the side of a cliff, or just being there to listen to my whining about MS. My friends have treated me exactly the way they did since we were kids, plus some jokes about my balance and coordination that keep us all laughing.

A few months and eventual years after diagnosis, I’ve been able to meet some incredible and inspirational people who are standing right along side of me fighting this battle. The people who I’ve been able to meet and to eventually call friends have shown me exactly what it means to be strong. With Change MS, I am able to see and hear exactly how everyone’s struggles differ. We all may be dealing with the same disease by name but the struggles differ greatly between all of us.

Through my last six years with MS there are a few things I’ve learned that have been keys to life. The first – the people around you are paramount to life with MS, and every chronic illness I’d imagine. The second – listen to your body, but also keep pushing yourself. Within reason of course, do it safely. And third – understand that in no way are you alone. If you don’t have family or they’re not as supportive or understanding of your MS journey as you need them to be, contact Change MS or the National MS Society, or if you have to contact me. I don’t want anyone to add being alone to their fear and confusion of being diagnosed. We might not cure this tomorrow, or next year, or maybe not in my life, but at no point will I ever give up or stop trying.

We all have our battles to fight, this is ours and it sucks, bad! At least we have a name for it and at least we have each other. I wish you the best and I look forward to sharing more about my journey with MS.