Multiple Sclerosis and the Importance of Support Partners [Interview][Transcript]

Brian_Moore_Ward_Above_MSGuest: 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 discusses how his support partners play a vital role in helping him overcome challenges living with MS.

Transcription

Health Professional Radio – Multiple Sclerosis

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 Brian Moore-Ward, Boston area man living with MS, working with Biogen and MSWorld helping the launch #MySupportHero. It’s a program that encourages people living with MS to virtually thank and recognize their support partners for their ongoing help, care, support and most of all their love. Although Mr. Ward was diagnosed just before his 30th birthday, he continues to pursue his passions including hiking and even hot air ballooning. And he’s here with us today to talk about this initiative #MySupportHero. Welcome to Health Professional Radio Brian.

Brian Moore-Ward Oh thank you so much for having me.

N: Thank you. You were here in another segment and we talked about your personal journey living with Multiple Sclerosis, how were you diagnosed, changing your life at a time when you were changing your life. Talk about your diagnosis just before you’re about to be admitted.

B: Yeah it was actually about six months before I turned 30, so the that was the time of your life when you are excited, you’re really entering adulthood, I married for six months and then my arm went numb for about a few weeks. I was initially diagnosed with carpal tunnel and from there after some trial and error and having a bad fall and seeing a pain specialist and they reviewed my medical chart we realized that it was actually Multiple Sclerosis after MRIs and numerous, numerous doctor visits.

N: Was there something in the characteristics of the injury that made it more apparent that it was MS as opposed to the misdiagnosed carpal tunnel?

B: Well, I think we know with carpal tunnel there’s like pain and numbness and the posterior and the arm and to think I do work on computers every day, it kind of made sense or background of what it was. The best part that I can describe it is when you hit your funny bone, imagine whacking your funny bone incredibly hard where that sensation’s actually go up and down like at the right side of your body – that’s how it actually was for me. So after I was actually given an anti-inflammatory for the carpal tunnel, the symptoms slowly subsided for a small period of time and then I got a new symptom and then things were kind of, symptoms are getting a little bit more progressive were I had optic neuritis and blind state in my right eye for about 12 weeks. So symptoms would get worst and worst and then the initial diagnosis had come in.

N: How was your husband holding up, I mean many times people have a care giver that is someone that is contracted to come in if their needs are to that extent. Was there any training that your husband Charlie had to take in order to care for you or it’s just a trial and error thing that you guys are learning together?

B: No, it was absolutely trial and error. We just kind of just of jumped in did a bunch of research, contacted a local MS chapter, The National MS Society Chapter, also resources like MSWorld.org and he found different chatrooms, talked to people, support groups in our area but now we actually had kind of jumped into it and learned on our own and I let him be the forefront of that because otherwise it was just making me think about everything wrong that could happen. So I let him jump in (cross-talk)… Right, so it’s incredibly stressful and that time where were just trying to start a life together and it was just everything on top of us. So it’s incredibly an emotional, stressful time. More so I think, even for him because he was trying to determine what his plan or how he would actually alter his life to help me out. But luckily he’s stuck with me and 12 years later he’s still here and he’s still the biggest resource I have.

N: That’s great. Now you’re working with an organization, Biogen and another organization MSWorld and you’ve launched #MySupportHero and I guess your support hero would be Charlie. Do you have others in your network that actually are hands-on or is it more of a support group as you say through social media with Charlie being your pretty much your sole caregiver?

B: Well definitely he’s my primary but I have my family, my immediate family and I have amazing close knit of friends, obviously that are very attentive to me and the multiple sclerosis. So I do have an extended support which is great. But this initiative that was started by Biogen and MSWorld is wonderful because March is MS Awareness Month and because March is MS awareness month, starting with initiative, the #MySupportHero, is a way to thank people like Charlie and even nurses and caregivers that are in the background and I mentioned that this can affect them just as much as the MS patients and they don’t always get the recognition or the thanks. So this initiative is incredibly important especially for this being MS awareness month.

N: Are cognitive skills affected at all with MS? Is there any of that going on?

B: For me? Definitely (laughs). Every patient is different. There will be times, I have a little bit of short term memory and Charlies says is that really short term memory or are you just getting older or the MS, I usually blame MS many times.

N: (Crosstalk)

B: You have to find laughter in it too. There’s times in life where things can be horrible and I’ll joke Charlie…we have to check-up it’s fast and I’ll joke “Oh, I have MS” and he was like “Hey,…”. So you got to find the humor in it as well because it what I have in my life and you gonna deal with it.

N: In your information you mentioned that some of your passions and hobbies include hiking and hot air ballooning. I don’t know any personally that lives with MS. Did you have any relationship or know of anyone that was living with MS prior to your diagnosis that you could, I guess fall back on their experiences and knowledge before? Did you have any of that before you were diagnosed?

B: No. I didn’t know personally I didn’t know anyone and then after I found out later that a great of mine who died years before I was born actually had it but at the time that they really don’t know what it was. But now I knew no one that, personally then but then obviously 12 years into the disease I know numerous people and friends that I made along the way but at the beginning, purely it was us trying to figure out what it was and educate ourselves on the disease.

N: How did you get Biogen on board?

B: Biogen is a sponsor as well as MSWorld for the initiative, MySupportHero, for MS Awareness Month and I actually do a climb in Boston every year that is we just have it in March it’s the MS Climb to the Top and they sponsor that, they’re amazing sponsors of the MS community.

N: Are they involved in any research and development or simply in raising awareness and sponsoring certain awareness raising events?

B: Oh absolutely, I think they do all of that. If you’ll look at their website, there’s a lot of stuff on the MS side. I know I follow them on Tweeter which is BiogenMS and there’s a lot of good resources on their Tweeter and their Facebook pages about the research and awareness that they are raising for Multiple Sclerosis. They make some of the best medications I think for Multiple Sclerosis as well to be …forefront in the fight against MS.

N: What type of numbers, we’re not looking for specifics or anything but a general number of people that are living with MS who know that they have MS and possibly if you’re knowledgeable enough maybe some of the folks that are displaying symptoms and wondering like you were – “What is this?” and you don’t want to wait for years.

B: I only know in the New England there are probably about 21-25 thousand people that are diagnosed but I can’t really give you exact numbers I think that would be something I have to take a look at. Another site for probably get those exact numbers but I do know it affects primarily females more than it does affect males, again usually people are diagnosed from the age of 20 to 50.

N: Is it something that very easy to misdiagnose or just pass over as an adolescent if you’re involved in sports or hiking, camping you’re not really gonna notice some of the illness or maybe some of the…

B: Exactly. Well, like what you just said the symptoms can be consistent with numerous diseases and numerous auto immune diseases so what happens is the disease can like I said I have symptoms at the beginning but we thought it was Carpal Tunnel. If you’re getting numbness or tingling you could equate that to kind of anything, Lyme disease has a very similar symptoms. So it’s kind of a difficult, you need the right team of providers doing the MRIs and the Neurologist who knows the disease to really identify it.

N: Now as we wrap up this segment, let’s talk a bit about the progression. Once you’re diagnosed, is it a guarantee that it will get worst or are there levels? As you said every patient is different, some displaying no cognitive loss, skill loss at all, others are small bit, some as you say in one specific or dominant part of the body, does it always gonna get worst or can it stay the same?

B: Well as you mentioned the disease is very unpredictable. The 4 stages, I’m at the 1st stage which is relapse-remitting so I can progress – you can always progress, you hope not and that’s why it’s recommended that people go on and modifying medication and talk to their healthcare providers to find the right option for them. The disease-modifying medications, there’s no cure so it’s just trying to slow down the progression of. The medication I take, I have been taking for past few years, it’s just medication to help slow down progression of the disease. Any symptoms I’ve had can come back, I had Optic Neuritis in my right eye where I lose sight and the tingling and numbness or loss of sensation or feeling can come back at any time. I’ve been lucky because if you look at me, I go to the gym, I’m not overweight, I’m pretty healthy for the most part and so if you looked at me I don’t look like someone that has this disease. But you got to remember on the inside, my nerves are a different story. So in the outside you will see me you probably wouldn’t think anything was wrong with me, I’d like to stay active like I said I’m a hot air balloon pilot, I like to hike as well that stuff. So I don’t like to limit me coz anytime it could get worst, it’s super unpredictable but every patient is different.

N: Well it sounds like you’re on a really good path to get the word out and raise even more awareness than, I mean it seems like in the last I guess 20 years or so there’s been an upturn in the effort to get the word out about MS. You’ve been listening to Health Professional Radio, I’m your host Neal Howard. And we’ve been in studio this afternoon speaking with Brian Moore-Ward, Boston area man living and loving life with MS right now, he’s working with Biogen and MSWorld and has launched #MySupportHero program that encourages people living with MS to thank and recognize their support partners for their ongoing help, care, strength during March which is MS Awareness Month. 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.

Liked it? Take a second to support healthprofessionalradio on Patreon!