Devin Garlit's Story

What were the steps leading up to your diagnosis?

Things happened pretty quickly for me; I woke up one day and fell flat on my face. I played hockey and worked out a bunch back then, but I was also in my early twenties and like most in college, burning the candle at both ends, so I thought I had just overdone it.

I'll never forget skating in warm-ups prior to a hockey game, finding I could no longer stand and being carried to the bench. The next morning I finally gave in and went to a doctor.

The doctor had no idea and literally had to go look up some symptoms in books – you never want to hear a doctor say that. By the end of the appointment, I couldn't stand at all, so they admitted me to a hospital to run tests.

After a week or so, they still had no idea but my ability to walk had returned so I pushed to be released. I got my way and then began to see a number of specialists. Lot's of MRIs and a couple spinal taps later they determined I had multiple sclerosis.

Who has been there for you? How?

One of the good things about battling multiple sclerosis is that you really find out who is there for you and how much. I have some outstanding friends and family! I wouldn't even be alive today if I didn't have such amazing parents and an outstanding wife.

My friends are also super understanding. They understand that knowing someone with MS means that plans can suddenly change, and they also appreciate the effects of temperature changes and stress. Having a support system like I have makes all the difference!

What lifestyle changes have you needed to make?

I've tried all sorts of things, from multiple disease modifying drugs at once to diet. I currently take a monthly infusion of Tysabri, which has stabilized me for the moment – but not before a lot of damage was done over the years.

The biggest lifestyle change has been in my head, just trying to have a better and more positive outlook on things. The mental game that MS plays with you isn't often talked about, but it takes a certain mindset to be able to get up everyday and deal with the pain and the uncertainty that comes along with the disease.

Going to bed each night not knowing if you'll be able to walk, talk, or even see can wear on you if you don't have the right attitude. They say attitude is everything, and they are right!

What accomplishment are you proud of?

I guess my biggest accomplishment is that I just keep going. Even after being forced on disability last year, I still haven't given up. I still lead a good life and I keep on fighting, even though there are a lot of times when giving up would have been much, much easier.

I grew up near Philadelphia, so I make a lot of analogies to Rocky. All of us with MS have to be like Rocky – take that savage beating the disease gives us but just keep getting up.

What's your advice to someone else living with Multiple Sclerosis?

My best advice after 15 years is to not just take the word of one doctor. I've literally had doctors tell me that there was nothing else they can do for me. Had I listened to them, I'd be a mess now. Keep fighting, a doctor is no more then a mechanic for the body, seek second, and third, and fourth, and more opinions. It's YOUR disease and YOUR life, no one else's – so FIGHT for it!

Is there anything else we should know?

I keep trying to do more to spread the word about the disease not just for myself but for all of us affected by it (and that includes our family and friends). Most people don't have a clue about this disease; the NFL doesn't do a month of games with everyone wearing orange. We all have to advocate for ourselves and help people understand this disease.