Multiple Sclerosis and #MySupportHero [Interview][Transcript]

Brian_Moore_Ward_MS_World_BiogenGuest: Brian Moore – Ward
Presenter: Neal Howard
Guest Bio: Brian Moore-Ward, a Boston-area man living with MS, is proud to be working with Biogen and MSWorld to help launch #MySupportHero, a program that encourages people living with MS to virtually thanks and recognize their support partners for their ongoing help, care and strength during MS Awareness Month.

Segment overview: Brian Moore-Ward talks about a new social media program called #MySupportHero, created by patient advocacy group MSWorld and Biogen.

Transcription

Health Professional Radio – Multiple Sclerosis World

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you so much for joining us today. Our guest in studio is returning to have another conversation with us Mr. Brian Moore-Ward, a Boston area man living with MS, as I say living with not suffering from, living with MS and still enjoying and pursuing his passions that include hiking and even hot air ballooning. He’s launched an initiative called #MySupportHero in conjunction with Biogen and MSWorld. He’s in studio with us returning to talk about Multiple Sclerosis and some of the misconceptions that have been built around this disease. Good afternoon Brian.

Brian Moore-Ward Hey, good afternoon. Thank you so much for having me.

N: Thanks for returning to Health Professional Radio with us. In other segments when you were here we talked about your diagnosis of MS at a very, very crucial time in your life, you were just got married, you’re about to turn the big 30 and you’re hit with this diagnosis after thinking that you had carpal tunnel syndrome which is by far a little, it’s not that big a deal in comparison. Many people didn’t take a second look until some maybe one of their favorite celebrities was diagnosed or an athlete or something like that. How do you get carpal tunnel syndrome from MS? How did that happen?

B: Well the symptoms of MS can be so common to other things that when I initially was diagnosed with carpal tunnel and made sense at the time because of the issues that I was having, it was only really the first thing… experience at the time. When they gave me an anti-inflammatory for the carpal tunnel, it actually helped and it slowly helps regain feeling in the arm. So, well I do hear a lot of times that it can be missed some other MS people at times that they can be misdiagnosis are common just due to the symptoms can be so similar to other ones as well.

N: When you went in for the problem and obviously not knowing what you had and you think “Well, it’s not killing me or anything, but if I had my…I’d rather not have it”. Were you relieved that it wasn’t something worst? You find out you’ve got cancer it’s like “Oh my God”, you found out you’d got Gout it’s like “Okay, I can deal with that”. You know what I mean?

B: So when I got the diagnosis of Multiple Sclerosis, my initial reaction was, I actually broke down and cried because it was somewhat of a relief to finally know what it was because I have such strange issues that were going on, the numbness in the legs, in the arms and then I lost sight in my right eye. So it was good to actually have a concrete name to what was going on but it was incredibly, incredibly overwhelming. Very emotional, overwhelming, I didn’t know what to expect though definitely I was glad to know what it was and I knew it wasn’t something that was going to kill me, it could definitely…for the rest of my life but it was like you said it was somewhat of a relief but then there was an overwhelming “Oh my God, I was scared and what’s next?”

N: Sometimes diseases carry a stigma with them. Is there anything like that, that you’ve found in your experience that is attached with Multiple sclerosis?

B: Well I think like you said, after finding out a little bit more about the disease, I can say there more relief, cancer had so many…that suffer horribly. So again with MS…I hate to say you’re happy with the diagnosis like this. But I knew after a certain moment in time it was something that I could control and be positive about and try to… but that’s life. I definitely was glad it was something I knew I could control to a certain aspect. But yeah, there’s definitely, you get scared about any and type of that stuff when you initially get sick and trying to fix it yourself.

N: Have you noticed people, I guess walking on eggshells when they are around you not struggling for things to say because nobody wants “Oh, bless your heart”. Some people have a hard time.

B: Absolutely. I get it even living with it almost 10 years, I get it every day. “You look great, how are you feeling?” Even if I’m in a bad mood or something, people immediately think it’s the MS. But sometimes it can be but sometimes it’s not but I get constantly, it’s constant and constant, “Oh, you look great. You look good”. Though I look good as I mentioned in previously on another segment, even though I might look good on the outside, it doesn’t mean my nerves on the inside are going crazy and that’s the thing you kind of have to educate people and let them know, “I might look okay but there’s times that I’m not so okay on the inside”. It’s one of those disease that, the number one thing I get from the majority of the time is, “You look great” and that just because I look good, doesn’t mean on the outside doesn’t mean, obviously MS has caused some havoc in the inside.

N: With like any other disease, I guess the first thing that you want to be able to do is identify the person as they’re walking towards you. It’s a defense mechanism, what’s going on, this person has horns coming out their head, that’s not right. I need to step back a few feet but still people look at you and think “Well, you don’t look disfigured at all, how is that possible, you have Multiple Sclerosis, you’re supposed to be this way or that way or I heard this.” How do you go about dispelling some of the misconceptions about MS?

B: Absolutely. Yeah, that’s a huge thing, it’s difficult at times and know how to address it and how to, because like you said with cancer, I think sometimes people has a defense mechanism or a way to make someone to feel better, they might try to diminish it a little bit so you don’t feel as bad about it. I found that like “Oh, but you look great, your arm’s…” So I think the best way to try and educate them and I give them resources, “Oh, why won’t you go and read a little bit more about it or get more information about what I’m going through”. And again education is the best way or even give them some examples of like, “I have a friend who has MS that usually came and visibly something’s wrong with them because…You see me walking by, I run, I fly hot air balloon, I hike, so when you see me you don’t really see that. So it’s something that, you kind of especially to the close friends and family perhaps …they understand. But it’s something that comes all the time and educating people and trying to get not aggravated by them. It’s easier than getting upset about it but you said I think at times people don’t mean to diminish it but they do it to make you feel better that like I said “Oh you don’t the look.” Because they’re trying to make you feel better, I don’t think anyone is intentionally trying to make me or you feel bad about it.

N: You living with the MS and your husband living with the MS within you not within him. When he observes someone drowning in this misconception or stereotypical MS thing that they’re about to make. Is he more apt to as you are to try and educate or, I guess for lack of a better term, punish for an infraction when it comes to his spouse?

B: Well I think he’s the one that probably knows a lot more about MS than I do because he’s at the forefront and doing all the research and the thing about him, he’s reached out to other care givers, and other MS patients and he has a good network of users that he had worked in the… too and he goes to chatrooms and he’ll help dispel those bad rumors about the disease and how people can come up to conclusions without really knowing or researched about it. He definitely gather his own little group of MS folks that he will refer to and talk to about it. So he’s really good about knowing the ins and outs and a lot of the information about the disease which is wonderful because with someone living with it, it’s a little bit more overwhelming for me to read all about it all the time. So I’ll throw it to him and let him handle that and help him get people the right information or give them the correct information they need about it.

N: As we wrap up, you are in the Boston area, your husband’s there with you. What about your immediate family, are they close by or are we talking about long distance support? Is that part of the reason why you launched this social media based initiative?

B: I’m actually very lucky because my immediate family is right here in Boston and I’m the youngest among five children so they’re all right here. My brothers and sisters are very supportive, my in-laws are right here as well too and then my close friends. So I’m actually very lucky, they’re right here. I think the initiative #MySupportHero, Biogen and MSWorld really wanted to because of MS awareness month, get these caregivers and people that help MS patients the thanks and the support they need. I think a lot of MS patients they have their people to actually help them and this is a way for them to thank those people. I think I, like I said I’m lucky there’s all my immediate support is right here but it can be difficult for someone that is not living close by to family or friends and it’s a way for them to also thank those people that they may be calling them and helping them to eat meals or however, but the initiative is a way for those MS people to actually thank their support heroes as well.

N: Great. And living with MS and enjoying life, doing all the things that you love, the support and quality of life no matter what. Yeah?

B: Yeah. (Laughs)

N: You’ve been listening to Health Professional Radio, I’m your host Neal Howard. Thank you so much for joining us today. We’ve been in studio talking with Brian Moore-Ward, diagnosed with MS just before his 30th birthday and just 6 months into a brand new marriage and talk about life changing but he continues to pursue his passions: hiking, hot air ballooning and all of these with the support of his husband, Charlie as well as his support, his health care team. It’s been great having you here with us today Brian.

B: Thank you so much for having me.

N: Thank you. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe through our podcast on iTunes.

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