Jim Dodson: The Florida Bike Guy. I have a guest this morning, Susie Wyss, and Susie is going to talk about is it possible to live an active life with MS? We're gonna talk about three things with Susie this morning. The first is her story, which is an amazing story of overcoming and returning from the effects of MS. Secondly I want to let you know the progress that's being made, amazing and dramatic progress being made particularly with medications and MS and the hope that it's giving to Susie and many other people. And finally, how each of us can get involved in this amazing and wonderfully impactful, I guess it's a fundraiser, the ways we can contribute to enhance the progress being made on MS and its diagnosis and cure. So Susie, welcome to the program.
Susie Wyss: Thank you, Jim.
Jim Dodson: Susie and I met down in Cyclefest earlier this month, and I was frankly sort of captivated by her story, which is an amazing story. Susie has MS, and how it's affected her, and how she had to come back from the onset. And I was really shocked because I did not know how quickly MS often affects people, particularly those that have the plateauing MS, where you have the onset and then a plateau of remission and then another onset. She has another name for it.
Susie Wyss: Relapsing remitting.
Jim Dodson: Relapsing remitting. So Susie, kind of talk about where you were at the time that you were diagnosed, and how quickly your life changed.
Susie Wyss: About eight years ago, I was a fitness instructor and I was teaching a spin class, my normal day for me. And I came home and I started getting severe pain in my back, and I felt like I was coming down with the flu. I was fatigued. So I went to bed, put some ice on my back, and throughout the night I felt tingling down my left leg, numbness. And by morning time, I had a hard time lifting that leg. I needed assistance getting out of bed. So I went undiagnosed for several months because it's not uncommon for a diagnosis with MS to take some time. They thought I had a back injury from my exercise. So I was going from doctor to doctor and continuing to get more MS symptoms. I had vertigo, I was dropping things, I was having electrical shocks down my arms. I needed a full-time caretaker. My husband took off work and helped me around the house. I needed a mobility device to get around. It was scary because I didn't know what was wrong with me. When I finally got my diagnosis, we went to the Mayo Clinic in Jacksonville, I was there ten days, we were praying for it because we wanted to do something about it. We wanted to be able to get on some medications that can help slow the disease down. And when we left the Mayo Clinic in Jacksonville, we had a five hour drive home, and I just felt this urgency inside of me that we needed to do something about this. What can we personally do? So I turned to my husband, who was an avid cyclist at the time, and asked him if he would start a Bike MS team. It was a perfect fit for us because he already cycled, and that way we could start raising funds. So that's what we did eight years ago. And we had five family members on the team. I was at the finish, so proud, as if I'd ridden the thing myself. I was so proud that we were doing something. So that was eight years ago.
Jim Dodson: Well, it's pretty amazing because your life changed really dramatically overnight, and then you had this long period where you weren't sure of the diagnosis, and you finally had the diagnosis. But you had to come around to acknowledging where you were, what your limitations were, and what you were going to do to try to improve what you were capable of doing. Talk to us just a little bit about that, how you overcame and strengthen and get back into active life.
Susie Wyss: The loss I was feeling was the loss of my ability to be mobile, of course, but I also felt the loss of what I did, which was I was a fitness instructor and very active in exercise. So I wanted to figure out how to get back to some sort of exercise, even though I couldn't do the same things I used to. I started in the swimming pool because with MS, it's a great exercise because your body is buoyant, and you're able to move freely. I had a partner that took me to the pool every day for safety reasons and to help me in and out of the pool. And I just did what I could at the time. Over time, with consistency, I got stronger, and was able to go a little farther each time.
Jim Dodson: Well it sounds a little easier than it actually was when you describe it after the fact. I know that you went through a period of depression.
Susie Wyss: Yes I did.
Jim Dodson: You went through a period of woe is me, I guess you would say, for lack of a better word. You actually then took it upon yourself, I'm going to do something about this, and you started really doing the exercise.
Susie Wyss: Yes Jim, I believe that not only was my body paralyzed, my mind was too. I just couldn't think of anything else but what was happening to me. I needed help emotionally because I knew I was in a depression. So I did reach out to a pastor friend of mine and did counseling on a regular basis to get my head on right, to know that I needed to move forward, and I wasn't at the time, so that was a big thing for me.
Jim Dodson: Jennifer's joined us and is talking about how you did what you could at the time and what a difference that makes with you. The determination to do everything you can in that moment, because you can't control what you're gonna be like tomorrow, but you have hope that tomorrow's gonna continue to get better. And I know that when you and I talked before, your progress was very slow, wasn't an overnight progression. You swam but you realized months later you were swimming better, you were stronger. Is that right?
Susie Wyss: My progress, I could only see it in hindsight. I could only see it looking back by seeing that maybe a couple months ago I could only do three or four laps, and now I'm doing six or seven. So the progress was slow, but it was encouraging to be able to see it looking back.
Jim Dodson: Yeah because you mentioned to me too that some people have the feeling that you shouldn't push yourself because you get overtired with MS. And some people have this sense that you should not exercise when you have MS because it may overtax your body. You found that not to be true. I mean, you have limits, but you found where you can work within the limits of what you can do and still really continue to get stronger and improve with every day.
Susie Wyss: That's true, Jim. Doctors used to tell patients to not overdo it and to take it easy. And they have new studies out now that prove that exercise actually decreases disability rates in patients with MS.
Jim Dodson: Well, we've done a lot of programs on the benefits of exercise. I've written about it many, many times. There are people who kind of get it, and there are people, unfortunately, that don't get it. And those that get it have such an amazing benefit in their lives from continuing to push and improve and try to do more and more. I wanna touch on one other thing regarding the diagnosis. I know that most people who have the slow progressive MS don't have this overnight change the way you and other people with this form of MS have. You told me about, I think it's the lady who was riding with the Lance Armstrong team.
Susie Wyss: Maureen Manly, yes.
Jim Dodson: What's her name again?
Susie Wyss: Maureen Manly.
Jim Dodson: Tell about her instantaneous coming down with MS.
Susie Wyss: I heard her story at the first Bike MS banquet that I went to, which really encouraged me because at that time, I didn't know that people with MS could ever ride a bike again, or that I would be able to ride a bike. So her story really encouraged me. She was on the Olympic cycling team, ready to go to the Olympics with Lance Armstrong. And as she was training she lost her vision, and went off the road. She worked herself back. She's back cycling again. She's not doing it in the same arena that she did, but she's a strong woman.
Jim Dodson: Yeah, but it's just another example of the kind of instantaneous way in which the disease affected her right in the middle of one of her rides, and she lost her vision and caused to crash. Pretty amazing story and something that I wasn't familiar with.
Susie Wyss: Jim, I'd like to add something for those that don't understand what MS is. It's an auto-immune disease that attacks the brain, the central nervous system, which is the brain, the spinal cord and the optic nerves. So there's many symptoms that patients can get, including vision, cognitive issues, mobility issues, all sorts of things. And if affects people differently.
Jim Dodson: You were not a true cyclist, in the sense of a road cyclist, before your diagnosis. You were a fitness instructor doing fitness classes. Basically you were a spin cyclist, spin instructor. So there was a point in time after your diagnosis when you decided to get back on the road bike. So talk about that a minute, 'cause we have a lot of road bikers that'd be watching this.
Susie Wyss: I saw my teammates ride, and I was there at the finish line with them, and what I didn't expect is I had friends and family members who had never ridden outside before and decided that they wanted to help in the cause and bought bikes, we know they're not cheap, and trained and are now avid cyclists, which was so rewarding to me because one of the things I lost as a fitness instructor is the ability to motivate people to exercise, and my MS was motivating people to exercise now. So it was win win. As I saw people and teammates that were training and riding, I wanted to try to do it myself. So I got a spin bike at my community gym, and started training there. While I ride now, I still have balance issues so I always need help on and off the bike. And I always have somebody pull me because it's easier for me , but I find a way to do it.
Jim Dodson: And what distances are you enjoying these days?
Susie Wyss: Well, let's see, Sunday I rode 25 miles in the cold and the wind. The farthest I've ridden is 50 miles, and that's what I do at Bike MS, I ride 50 on Saturday and I ride 50 on Sunday, two days in a row. And I do that in the way that I can, and I know that if I'm not able to do it, I won't. I listen to my body. I use a camelback to help hydrate and also keep me from falling trying to reach for the bottle. But it's filled with ice because heat is not good for MS patients, and the ice helps keep my body temperature cool.
Jim Dodson: So when you began to road bike again, and getting on the road bike, I think you described for me that your progress again, was incremental.
Susie Wyss: Yes.
Jim Dodson: You didn't notice a dramatic, overnight change. I think it's inspiring to people to know it's this slow progression because your determination that you're going to get better and do the very best that you can.
Susie Wyss: Yes, for the first three years, I could not ride. Maybe the first time I did go out on the road it may have been like six or seven miles. But it was the consistency, just like in any exercise program, that helped me. What I am surprised about, is that each year, again hindsight looking back, I feel like I'm a stronger rider today than I was even last year.
Jim Dodson: Yeah, that's amazing.
Susie Wyss: So I'm real happy with that.
Jim Dodson: So let's talk a minute about the progress that's being made with MS. Now what Susie hasn't mentioned is that there was a drug that was developed that has had a big impact on you. You can talk about that and that you then became a spokesman for MS nationally. So just touch about what's the progress being made and your involvement in that.
Susie Wyss: Yes, 20-25 years ago, there were no drugs for MS to help slow the disease. There was nothing. And that's why the face of MS looks different, and I think people are surprised to see MS patients doing things that they wouldn't have seen them do 25 years ago. That's because of the disease-modifying medications that are available now, which I'm proud to say there are 17 of them that were not available just 25 years ago. Those medications just help slow the disease, the progression, because it is a progressive disease. So it will help your disability rate at the end, the endgame will be less than what it would've been without the medications. I just attended the National MS Society Leadership Conference that was in Atlanta last weekend, and I got to speak with a hundred different scientists, doctors that are working on research projects for MS. And this was a full circle moment for me because we've been raising funds for the last eight years, and I got to see where that money is going. And I am so hopeful that we are going to find a cure for this disease. We are gonna find one, and I think it's gonna be within my lifetime.
Jim Dodson: So people understand, currently you have drugs that will slow the progression and aid in your dealing with the symptoms at the time, currently, but there is no cure, correct?
Susie Wyss: No cure right now, but they're working on it.
Jim Dodson: The endgame is cure, but like every disease it requires research and a lot of money.
Susie Wyss: Yes.
Jim Dodson: Right? So I wanna talk about what people can do to get involved in that and assist, but I just wanna give you a little programming note, a reminder that we really appreciate referrals from those of you who are viewing this. If you know someone who's been involved in a bike crash, really anywhere in Florida, or a motor vehicle accident for that means, we welcome your referrals. Have them call. We will take care of them. Our focus is to make sure that the cyclists' interests are well protected and taken care of. So if we can help you help a friend, let us know 'cause we're there for you. So let's switch Susie for what's going on locally for people who are here in Florida, who want to support MS. Everybody knows somebody with MS, frankly. Quite frankly, I did too. But I didn't realize how many things that really we can do that would help raise money for MS and help us enjoy the event as well. I think you've got three things coming up in the spring of 2020. Why don't you discuss those for us.
Susie Wyss: Well the biggest thing we do is we have a team and our team name is Copaxone, which happens to be the medication that I use personally, one of those 17 medications. And we have a team that rides Bike MS, which is in Orlando, and that ride is March the 7th and 8th, at the Omni ChampionsGate. Each rider raises funds, and it all goes to the National MS Society. There are about 700 riders at the event. So one way to help out is to donate to our efforts which all the funds will go to the National MS Society. Or if you're a rider, we'd love to have you on our team. That's a couple ways that you can help out. We also have a fundraising event, which is in Bradenton at the Motorworks Brewery, and that will be February the 12th from six to nine. We'll have a live band, silent auction and raffles, and the event is free. So just come on by February 12th, Motorworks, six to nine, and bid on some items. They'll be some great items from local businesses. We have, in Tampa, on January the 22nd, we have an event called Give Back Wednesday, and that's at Brew Bus Brewery in Tampa. And from four to nine, anything you purchase there, food or drink, they give us, the National MS Society, 20% of the proceeds.
Jim Dodson: Oh wow, that's great.
Susie Wyss: Which is a great thing.
Jim Dodson: You can have fun in each of these, involved having a little bit of fun, relaxation, getting fed, and exercising, at least in the MS ride in Orlando.
Susie Wyss: I hope you'll be able to join us, Jim.
Jim Dodson: We're gonna join the team. I'm gonna be there. We'll ride and I'll be raising funds for your team, I'm gonna join Susie's team. So we'll be involved and we'll have more information on that as the event gets closer. Kati has got a crawler across the bottom of the screen that gives you an opportunity to go to a link that you can get the information that Susie's talking about through their local team and through the National MS Society. I think that a lot of this is raising awareness. You're an amazing spokesperson for MS. You've got an amazing and compelling story, and I very much appreciate the fact that you've shared it with us here today. Is there anything you have to say that you'd like before we sign off?
Susie Wyss: I think that's it. If there's any other MS patients out there, or you know MS patients, make sure that they are connected to the National MS Society. Website is nationalmssociety.org. They have a navigator system that will help patients with any resources or leads that they have, and that's where part of the money also goes to.
Jim Dodson: Well, one thing too, I didn't mention. These drugs, they're amazing but they're very expensive. I know the drug that Susie is on is extremely expensive. She's fortunate to have health insurance that's paying for that, but many people don't have that ability. And National MS Society does have resources to help people. Do you wanna address that?
Susie Wyss: Yes they do. And that's why it's important. They just found out last year that there are twice as many people in this country living with MS than they previously thought. So we have a million people with MS living in this country. And over 400000 of them have not been connected to the MS Society yet. So I wanna get the word out. If you're a patient, the society can really help you.
Jim Dodson: That's great information. And Susie, I very much appreciate you joining us here this morning. We'll look for everybody joining us at the MS ride and the other events in Tampa and in Bradenton. Look for our information about our team fundraising, and maybe you can join the team as well. Susie, thank you very much. I'm Jim Dodson, The Florida Bike Guy. We'll see ya on the road. Take care, bye.