Living with Multiple Sclerosis
Over 2.3 million people live with Multiple Sclerosis every day. Listen in this week as Consumers’ own, Becky Nap, tells her story about living with MS. Find out how you can get involved in the upcoming MS Walk fundraiser.
00:00 Lynne Jarman-Johnson: Money, I’m Home. Wow, we have got another great episode for you today. You know why, because we are focusing in on something that is very near and dear to the hearts of Consumers Credit Union. I’m Lynne Jarman-Johnson, I’m the Chief Marketing Officer and I’m also your podcast host for the day. Today, we’re going to talk to you about a really awesome charity program. And Consumers focuses on core charities and the reason why they’re core to us is because they are led and run by champions by captains that our employees focus on.
00:43 LJJ: So we are one of those organizations that are feet on the ground when it comes to charitable giving. It isn’t going to be a check. You won’t just receive a check if you ask for a donation and you’re an awesome nonprofit partner. You will instead receive the full backbone, of Consumers team, which is over 300 employees now and any member participation that wants to happen.
01:05 LJJ: So joining us today is a very special guest, it is our captain for the MS Walk, here in Kalamazoo. Her name is Becky Nap. Now, some of you know Becky because she’s a smiling individual that helps run the Mattawan office, and she also is involved in many, many events that we have here at Consumers. But this is the one that is your heart and soul. Becky welcome.
01:29 Becky Nap: Hey, how are you today?
01:31 LJJ: So good, you are a captain of the team, what does that mean?
01:34 BN: That basically means that I kind of help facilitate the event. So getting people to sign up to attend the Walk and helping the offices to raise money for Consumers with the Walk as well.
01:48 LJJ: When is the Walk this year?
01:50 BN: The Kalamazoo Walk is April 27th, it’s at 10 AM and it’s at the Kalamazoo Institute for Arts, downtown Kalamazoo.
01:57 LJJ: It is a blast.
02:00 BN: Yes, it’s so much fun. And Consumers usually has a pretty awesome team there, so we really enjoy it.
02:05 LJJ: I’ll tell you what, one of the things that we want you to do as you’re listening is think about joining us, whether you’re going to walk or you can bike in Holland, or you can walk in Grand Rapids, because we are a partner across West Michigan and we’d love you to join us. So just head to our website, consumerscu.org and you’re going to be able to find out how to register and how to do that. Becky, this is really personal for you. This is something that is really near and dear.
02:35 BN: Yeah absolutely, yup, very very dear to me. I was diagnosed with MS in July of 2009, so it’s been almost 10 years and I live with it every single day. So, it’s a disease of the immune system, and basically what happens is your body attacks itself. So there’s coating around your nerve endings, it’s called myelin and that coating is eaten away by your immune system, which disrupts the flow of the information and it attacks… It’s a disease of the brain, the spinal cord and your optic nerves. Nobody has it the same. Every single person with MS has different symptoms, comes to find they have MS in different ways. So it’s a pretty terrifying diagnosis when you first get it, but you just kinda have to stay positive. That’s been my main thing is to just say, “Hey if I’m going to have 60 bad days I’m still going to have 305 good ones.
03:35 LJJ: That is a great attitude. Take us back to what happened prior to diagnosis. Were you waking up feeling funny?
03:46 BN: Basically, what happened is I woke up to go to work and I was doing marketing at the time, and so I drove a lot.
03:53 LJJ: That’s a great job.
03:54 BN: I know it is right. So I was driving around a lot at that time, marketing and I kinda woke up and I just felt weird. And my arm was numb, my right arm, and I was like, “Oh that’s weird. Maybe I slept on it wrong. But the day kinda went on and I started to feel it go down the whole right side of my body and it was just like that… You know when you fall asleep, and you try to wake your arm up and it hurts, it’s painful, like pins and needles? And the whole right side of my body was that way. And by the end of the night, I was like, “I really don’t feel good. I think there’s something wrong.” I was tired, I just felt off. And so I went to the ER, and the first thing they mentioned was MS.
04:36 LJJ: Really.
04:37 BN: Completely terrified me and I knew a little bit about it but not a lot. Which is what I find for most people, that they have a general idea, but they really don’t know what it is. And about a couple weeks later, some MRIs happened. A spinal tap, there’s something in your spinal fluid that is actually the easiest way to diagnose MS. So that’s not a fun procedure, but you have to do it. And within probably three or four weeks, I had the official diagnosis.
05:06 LJJ: So what happens next? Now I am honored to follow you on Facebook. So I have seen when there are episodes that happen. Is it an up and down and you just don’t know every day?
05:18 BN: Yeah, you pretty much honestly wake up every day and have no idea what is going to happen and you just… That’s why the positive attitude is so important. Because it’s the only way that’s going to get you through it, you just have to remember that there are things that can help. So when you have an episode you call your doctor, they’re usually going to send you for an MRI. In the MRI they inject a dye and that dye lights up if you have an active lesion. So an active area where the myelin has been attacked, and then they’ll usually will send you for steroid infusions. It’s really unpleasant because injecting yourself with a whole bunch of steroids is… Leads to whole bunch of other problems, then you feel pretty horrible. But it’s the only way to make the episode hopefully stop, if you catch it soon enough. So sometimes your symptoms will go completely away. That had happened to me for the first probably six years I never had any symptoms stay. I would go get the steroids… I even lost my eyesight for about three weeks at one point and that was pretty terrifying. But you get the medicine and give it a few weeks and it does get better.
06:32 BN: About two-and-a-half years ago, I had the worst episode ever, and I was hospitalized for that. And I have never regained the feeling in my hands.
06:39 LJJ: Both hands?
06:40 BN: Both hands. So, clasping a necklace is incredibly difficult because all the feeling, the sensations in my hand, I don’t have them at all, anymore. And it just never came back, so. It happens and you just have to deal with it.
06:57 LJJ: You’re a mom.
06:58 BN: Yeah. I got a beautiful little six-year-old. She is beautiful.
07:03 LJJ: How do you, every day, go through the day and how are you helping her understand, “Hey, mom is kind of having a bad day today.”?
07:15 BN: Yeah, that’s definitely a difficult thing. It was a lot harder when she was young, just ’cause she really didn’t understand she was just like… “Why is mommy gone? Why does mommy have an IV in her arm?” ‘Cause I would take the IVs home if they would let me do outpatient steroids and… But now that she’s older, she understands a little bit better because one of the main symptoms of MS, is fatigue. Almost everybody with MS has it and it’s chronic, and it’s really tough to just wake up some days and get going.
07:50 LJJ: Explain that for a moment, because when you are healthy, and you get tired, you can make what take a 10-minute power nap you’re up and hey, I can get rocking. This is totally different.
08:02 BN: Yeah, it just takes every ounce of energy that you have to get up and focus on the day. You really could sleep… Some days, I can feel like I could sleep for just days on end and it still wouldn’t be enough. And it’s hard with… I’m a single mom, so she is very understanding and she just says, “You don’t feel good today do you?” And I just talk to her about the MS and I say, “You know, Mom’s just having a bad day. Can you help me out extra today?” And she’s really good about doing that.
08:32 LJJ: That’s amazing. That really is.
08:35 BN: Yeah.
08:35 LJJ: So, the Walk.
08:37 BN: The Walk.
08:38 LJJ: You get all of these individuals who literally… I can see Jim McKee, he’s one of our employees there.
08:44 BN: He’s always there, yup.
08:44 LJJ: He’s always there, number one, but he always does triple the amount of steps he needs to take.
08:50 BN: Yes, he does. He’s amazing. We are so grateful for him at all of our events.
08:55 LJJ: So when you… When you’re there as the captain and I know you get to speak and you get… Are you kind of in awe because it truly is an amazing day?
09:05 BN: It’s a really fun day. It’s kind of a day where a lot of us will have our… There’s more than just me at Consumers that has MS, there’s at least three of us that have it and… Which is kind of cool, that we can…
09:19 LJJ: You have a group.
09:20 BN: …be friends and talk about things together. But it’s a fun day for your family to come out and support you too. So a lot of us have our families out there and so many of our friends at Consumers and members and it’s just a fun day to kind of… It’s not really a celebration, but it just feels so supportive and it’s so great to create that awareness for people that don’t know about MS and don’t understand it and it’s… They encourage people to walk, instead of run or anything. Because, with MS, there are a lot of people that physically can not walk anymore. And so it is a walk. And you can do one mile or three miles. So if you’re not as able there are different options.
10:00 LJJ: And it’s right in downtown Kalamazoo.
10:01 BN: Yeah.
10:03 LJJ: The Kalamazoo Walk. It’s a beautiful spot.
10:03 BN: It’s a fun walk and they’ve got music playing and DJs and all that good stuff, so it’s a fun time.
10:11 LJJ: So let’s go back to you a little bit and tell me about medications.
10:16 BN: Medications.
10:17 LJJ: So is there anything on the horizon? And do you mind if I ask you how expensive are medications?
10:26 BN: They’re pretty out of control. So when I first got diagnosed, there were only about four choices so that was almost 10 years ago and they were all shots. So you had to mix the shot and inject it. It was every other day, it was a pretty painful shot, no matter what you did. And the MS medications, they just kind of help to hopefully decrease the symptoms. It’s not a cure, it doesn’t keep you from getting episodes. And then… Now there are a lot more medications. So I actually take a pill now and I just take it every day, once in the morning, once at night. They have side effects of their own and some of them are not pleasant, but you kinda just have to pick, pick which one you think is the best side effect to go with. I guess. They’re about $5,000 a month. But that’s why Walk MS is so important because that helps not only raise money for research, but it’s raising money to help people that are living with MS that might not be able to afford their medications or medical supplies. I actually don’t pay a dime. We have awesome insurance here at Consumers, so I’m super grateful for that. And then the drug company actually picks up the co-pay. So I pay nothing, which is really nice, but a lot of people are not that fortunate.
11:46 LJJ: Well, and then what do you do if you don’t? The MS Society can help up to a point.
11:50 BN: That’s right.
11:51 LJJ: Right?
11:52 BN: Yup.
11:52 LJJ: So when you look on the horizon are you… You see, all of a sudden, that there’s in the news an actress who is diagnosed and you watch, are you… Is there hope on the horizon in the sense of what the medications and the pharmaceutical companies are doing?
12:11 BN: Yeah, I believe that there will be a cure in my lifetime. I do believe that.
12:16 LJJ: In your lifetime?
12:16 BN: Mm-hmm.
12:16 LJJ: That’s awesome.
12:17 BN: They’re coming up with so much new research every day and there are a couple of people that I’ve seen that seem to be headed in the right direction for finding the cause, because right now, nobody knows the cause, so finding the cause helps find the cure. So it is pretty exciting to see all the research that’s been done. Again why The Walk is so crucial because that’s their main fundraiser for helping research.
12:45 LJJ: So how about your friends and your family and the day-to-day? Is it… The thing that really makes my head kind of turn is the waking up and not knowing what the day is going to bring.
12:58 BN: Yeah. It’s a tough… I think when you first get diagnosed, that’s the hardest thing for you to get over. I have a friend that was recently diagnosed and that was the hardest part for her. She asked me… There was just so much fear. There’s fear in the beginning ’cause you don’t know. And you really just have to be positive and you have to rely on your friends and family too, because sometimes you really just need their help and you need their support and you’re having a bad day and you need them to say like, “Hey, you’ve done this before, you can do it again.” And it’s really… It’s crucial to have the support of your friends, and your family, and your co-workers and…
13:35 LJJ: Well number one, thank you.
13:37 BN: Yeah absolutely.
13:38 LJJ: Because you are an awesome captain…
13:40 BN: Thank you.
13:41 LJJ: For the Consumers team.
13:42 BN: I enjoy doing it.
13:43 LJJ: And anybody who wants to be on the Consumers team, can.
13:46 BN: Absolutely.
13:47 LJJ: And don’t forget that you can go to the website consumerscu.org. What else would you like to tell us?
13:55 BN: I think that I would just say that it’s okay to ask people questions. I am an open book, so if you ever see me around, and you have a question, I’m more than happy to answer it. So many people just, they don’t realize what MS is, or what the side effects are, or really what to expect. So, just ask, feel free to ask questions. And I truly believe that there will be a cure in our lifetime, so we really appreciate any support that is given to this ’cause. We’d love to have you come out and walk with us. It’s a fun day, and even just walking makes those of us with MS feel great to have that support around us.
14:32 LJJ: Well, thank you for answering my questions.
14:35 BN: Absolutely, thanks so much Lynne.
14:36 LJJ: Hey, I’m Lynne Jarman-Johnson. Don’t forget, consumerscu.org has all the information that you’re going to need for the Grand Rapids, the Holland and the Kalamazoo Walk, Walk, Run. No Walk, Walk, Bike.
14:49 BN: Yup.
14:50 LJJ: Thank you, so much. Hey everybody keep on listening in, Money, I’m Home. I’ll tell you, from finance to fitness, we’ve got you covered.