Community Appreciation: Interview with Devin
Here at MultipleSclerosis.net, we recently started a new initiative to celebrate our incredible community. We’re kicking it off with our first set in our series of articles that interview MultipleSclerosis.net members!
Members are chosen based on their submission of the most-read stories. If you’d like the chance to be featured in articles like this in the future, please share your story here!
We are delighted to introduce you to MultipleSclerosis.net community member, Devin! Read below to find out more about him, click here to read his story, and check back soon for the series’ next interview.
What’s one thing you’d want people to know about you?
That having multiple sclerosis has changed my life, but despite the struggles, I am a better person for having gone through this struggle
What’s your favorite quote or saying?
“Success is how high you bounce when you hit the bottom” - George S. Patton. I love this quote for a lot of reasons. Patton was one of America’s all time “tough” guys and you need to be tough to battle MS. That’s why the phrase “MS Warriors” is so popular. Having multiple sclerosis is a lot of falling and getting up, both literally and figuratively. To me, this quote covers both of those angles. We are all going to fall, and that’s ok, life is about how we deal with that, it’s about how you get back up.
What’s one thing you’ve learned as a result of dealing with multiple sclerosis?
Appreciation. When you feel crappy so much, you learn to appreciate all the little important moments in life. All the times with family and friends, nice (cool) weather, a good beer, even the stupidest of jokes. That appreciation is one of those rare gifts that MS gives you that few others in the world can truly understand, and I’m thankful for that.
What’s one thing you’d like everyone to know about multiple sclerosis?
The number one thing I want people to know is the invisible nature of the disease. So many of us afflicted put on our best smile and do our best to look normal. But under that charade, people are suffering. They’re in pain, they’re having trouble standing, thinking, seeing. It’s invisible nature allows it to trivialized and not supported as much as other major diseases. Bottom line, don’t judge a book by it’s cover.
What tools do you use that help with multiple sclerosis?
I have a notepad type app on my phone that I use to constantly take notes because of my memory issues. Also, social media and websites like MultipleSclerosis.net have been very key in sharing information and getting/giving support to others with the disease. Those things are invaluable. Interacting with other who understand what you are going through is so important.
What do you wish someone had told you when you first were diagnosed?
I wish someone had conveyed to me how little they actually know about the disease. You see all these different ideas on treatments, from medications to diets, and while they may help a couple people, they won’t help a vast majority. They have no idea what even causes MS, it’s all just theories. Compared to many major diseases, they still know very little. I’ve had MS for about 16 years and there really isn’t all that much different from a knowledge and treatment perspective now then there was when I was diagnosed. That just seems crazy to me. Most MS patients end up having to see multiple doctors to find a treatment that works for them. That’s something I wish I knew back when I was seeing my first neuro (I think I’m on like my 6th, by the way)
Do you have any favorite pets/hobbies/songs that help you handle life with multiple sclerosis?
I have some dogs, unfortunately, two of my dogs are too big for me to care for in my current condition and I’ve had to give them up to my parents. I recently took in a small dog though that’s easier to care for. She’s been incredibly helpful! She can tell when I’m have a really rough time, then she’ll do her best to comfort me. She’s been a great companion and I can’t imagine not having her with me most of the time. I also collect and sell action figures which sounds way nerdier than I ever would have expected. It a big change from someone who use to play hockey and run as his primary hobbies. But that’s MS, it’s about adapting and it gives me something I can do and focus on. It’s an escape that I would be crazy without. I recommend anyone with the disease to have something, anything, to lose yourself in when you are having really bad days.
What tips do you have for managing cognitive symptoms?
Having something to take notes on is important. Whether it’s an app on your phone or a notepad, it’s a must. A good calendar is also pretty important. You also have to accept it for what it is in order to deal with it. It’s not you getting old or going crazy, it’s a legitimate problem that you need to take steps to fight. I continually try to read, even though it often means starting over and re-reading constantly. My doctor also has me work with legos/mega blocks as a therapy. Following the instructions, searching through the little bricks, and putting it all together really helps work your brain (and my hands which have a lot of numbness). I also have a bad habit of writing notes to myself on myself with sharpies, almost like a less permanent version of the tattoos in the movie Memento.
What conversation topics do you LOVE to talk about?
I’m a pretty big Philadelphia sports fan, so I love talking about the Flyers, Eagles, Phillies, and even the Sixers. I love hockey and football (I grew up playing both) so I’ll talk about them, any team, any game, at any time.
What brings you the most joy (especially when you’re feeling down)?
My wife Aimee. She just has an amazing sense of humor that is so similar to mine. She can always make me laugh and feel happy. She’s my rock and I can’t imagine how miserable I’d be without her.
What’s your fondest memory?
I have so many, my entire childhood, even through high school was amazing! I’ve been blessed with great family and friends and my times with them are my fondest memories.
How many specialists did you see before finding "The One"?