Episode 11: Your Only is My EverythingGUEST: Carl Deriso, MS Advocatehttps://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E11_Your_Only_is_My_Everything.mp3We celebrate Multiple Sclerosis (MS) Awareness Month for 31-days each year; however, close to one million people in the United States are living with the effects of this chronic and debilitating disease each day, including our host and her husband. This week's episode is a candid conversation between two fellow MS Warriors, who are also married, and there's no topic off-the-table. Although the diagnosis is the same, everyone experiences MS in very different ways, and this week we discuss personal journeys through diagnosis, dating, marriage, pregnancy, self-help groups, advance directives, and much more. Don't miss this special episode! #MSAwarenessMonth2021

QUICK LINKSAs language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

OUR GUEST: Carl Deriso

TRANSCRIPTHi and welcome to Incluse This! I'm your host, Sarah Kirwan, and this is a movement for disability equity.

Today's show is a bit different. We're celebrating MS Awareness Month and I'm here with my husband and fellow MS Warrior, Carl Deriso. Good morning, honey.

Good morning.

We're celebrating MS Awareness Month, which is in March. I'm excited to have you here today. Welcome.

Thank you.

We've been together for a while now. We got married in August of 2020, and you and I recently did an interview for Yahoo media. One of the things that you and I really wanted to go back to was to talk about the fact that we both have experienced MS in a different way. When we met, I was at a point where I pretty much thought that everything I experienced had to do with MS. And you were at a point where you didn't feel like most of the things that you experienced had to do with your MS.

Let's take a listen to a little bit of this interview, an edited down version of the original interview that we did together with Yahoo media group. It definitely highlights our experiences and our journeys.

My name is Carl Deriso and I was diagnosed with MS 1996.

I'm Sarah Kirwan, and I was diagnosed with MS in 2011.

I grew up in Arizona and after several summers of the heat there, I started developing tingliness in my feet and my hands and back in 1996, MRIs were not a common thing that were done. I went through the typical spinal taps, went through all the exercises with a bunch of different doctors. Finally they said, we need to send him for an MRI. That's when I was originally diagnosed with lesions on the spine.

But you also had another issue.

Yeah, actually I didn't get very much treatment at all. From that time I just kinda got used to my symptoms. In 2006, I had a flare or a, an exacerbation of my symptoms and had some blurred vision. I went back to a neurologist and they, at that time said, yeah, it looks like you've had a, you've had an incident, so we need to get you on some medication. That's when I started, actually using a treatment for MS.

And I, actually my initial symptom was my left ear was very full. I got off of a plane in June of 2010 and my left ear just never popped. Or opened. It was just very full. I started going through testing for a vestibular schwannoma, which is a brain tumor that sits on your optic nerve, as well as your ear canal. As they were doing that testing, they found the lesions on my brain. At that time I was actually finishing grad school, which was very stressful. I was ending a long-term relationship at the time, which was also very stressful. I was trying to find a job, after grad school.