This is the second and final part of a 2 part interview of Professional Snowboarder and T1D Sean Busby.  Click here to read the first part Professional snowboarder Sean Busby accomplishes his dreams as a Type 1 diabetic (T1D)

Riding On Insulin founder, Sean Busby, is a professional backcountry snowboarder with type 1 diabetes who travels the world exploring remote corners of the globe on snowboarding expeditions.

In 2004, while training for the 2010 Olympics, Sean endured a complicated diagnosis of type 1 diabetes. Considering leaving snowboarding all together, Sean was inspired by reading stories he found through JDRF’s Children’s Congress. It was the stories of 5- 7- and 13-year-olds that inspired him to keep living his dreams despite living with diabetes. He founded Riding On Insulin—which is now a nonprofit organization—to honor all the kids who inspired him to keep living. Today, Sean’s wife Mollie runs Riding On Insulin and Sean makes appearances at the organization’s global action sports programs (including ski/snowboard camps) for kids, teens and adults living with T1D, while managing his personal backcountry snowboarding career. In February 2014, Sean became the first person with T1D to backcountry snowboard all seven continents. His expeditions include trips to Morocco, Antarctica (twice!), Patagonia, Iceland, Norway, Japan, Kyrgyzstan, Alaska, Tasmania, and more. Sean graduated from the University of Utah with a degree in Health Promotion and Education, with an emphasis on diabetes.

Sean and his wife, Mollie live just outside Whitefish, Montana in a yurt with their two dogs, Daisy and Glacier.

Sean Busy (photo courtesy Sean Busby Facebook page)

Alissa:      I’d like to talk about your latest diagnosis. When were you diagnosed with Lupus and how are you managing it? 

Sean:        When I was going through that whole complicated diagnosis in Colorado at the age of 19, there were different blood abnormalities. All of the different specialists viewed me as an enigma that they were trying to figure it out.  I was sent to the Mayo Clinic in Rochester, Minnesota where I was tested for every autoimmune anomaly in the book.

Flash forward to August of this year, when I finally got diagnosed with Lupus. One in ten people that have lupus are men, which means it affects about 500,000 males in the world. So, it is actually very rare for a man to be diagnosed.

Alissa:      What were your recent symptoms that led to it?

Sean:        Most recently, I had gotten back from the Arctic Circle in Norway where there’s 24 hours of sunlight. I had suffered from debilitating headaches, which I had never had before.  A doctor detected really high multiple enzymes in my blood. I was immediately referred to a neurologist, who thought I might have some sort of muscular dystrophy. Tests now found a specific antibody that came back four times the normal value – which is only seen in a person who has Lupus. Looking back at everything, it all makes sense.

As a result, I’m on a heavy dose of anti-malarial medication to protect my body’s organs. I’m also on a bunch of different supplements. If the disease attacks my liver and kidneys again, I could have to be treated with chemotherapy and prednisone (steroids). My latest check up revealed that the Lupus is heading toward a “a remission like state” though remission doesn’t occur in Lupus. I know that a flare up can be caused by over-doing exercise. I am also photosensitive – basically allergic to the sun. Knowing that the sun goes down around 11 p.m. and rises before 4 a.m. in Northwest Montana during the summer, I have to really protect myself. Winter, it is always dark, so that is great.

Alissa:               What is a flare up like? Is there pain, side effects?

Sean:        The pain is excruciating. The headaches are debilitating. My body can’t move because everything hurts. I start running fevers and get very ill, depending on what organ it’s attacking.  If it happens to attack my skin, then that is visual because of the rash which is coupled with joint pain. I’m having to really, really tune into my body, but having Type 1 Diabetes, tuning in is something I’m accustomed to.

Alissa:      How does it affect your blood sugar?  

Sean:        It definitely affects my blood sugar. When you get sick with Type 1, your blood sugars start rising. But, right now my rheumatologist and I see Lupus as the big gorilla—not T1. My doctors monitor my health as a team. Right now, I am searching for psychological support. There is a men’s hotline that I call into. It has helped. I realize that there are some who are afflicted with really severe symptoms. Whatever my situation may be, there is someone who is suffering a lot worse. You have to accept that “it is what it is” and stop being consumed with the worst case scenario. If you don’t then you won’t get to live the life that you want to live.

Alissa:      Currently, emotionally and physically, are you handling it fairly well or do you still have your struggles?

Sean:        I still have my struggles.  I’m trying to get ready for winter. This summer was a wash for me. I didn’t go to New Zealand because I started treatment. I was also really weak from lack of exercise. I was able to snowboard the other day for the first time in a long time and it was an amazing feeling. Just being connected to that snowboard again was … I was almost ready to cry.

Alissa:      Do you climb with people so that you have that emergency support too or do you like to go alone?

Sean:        I like to climb with people so I’m sure to have emergency support at all times. This diagnosis is so new to me that I need to have others around. Eventually, I’ll get back to doing some stuff solo—as long as it’s in areas that are avalanche free.  If I’m in avalanche terrain, I have to always have a partner.

Alissa:      What advice would you give for people who are living with Type 1 Diabetes and aspiring to be athletes like yourself?  

Sean:        Be proactive.  Find out what is available to you.   Get involved. Talk to others that have this.  Try to connect with a local organization because they can really provide you with inspirational people to share advice with.  On top of that, if you want to be active with T1D, check your blood sugar.  Check and learn what your body does in activity.  That’s the solid piece of advice that I did that I learned.  It’s just knowing what my blood sugars are doing, I really learn how my body interacts with exercise.  Its check, check, check and check some more.  

Alissa:      Thank you so much, Sean. You’ve given me so much valuable time and I really appreciate you and all that you do and together, I hope that we can help make a difference because you certainly have to me and I can’t thank you enough.  You’re really, truly, a very special person and if you don’t know it, I’m hoping that somebody will tell you so or you could see so because it really is wonderful what you do.  Thanks so much and I appreciate it.

Sean:    No problem — thanks for the interview.

Riding On Insulin founder, Sean Busby, is a professional backcountry snowboarder with type 1 diabetes who travels the world exploring remote corners of the globe on snowboarding expeditions.

In 2004, while training for the 2010 Olympics, Sean endured a complicated diagnosis of type 1 diabetes. Considering leaving snowboarding all together, Sean was inspired by reading stories he found through JDRF’s Children’s Congress. It was the stories of 5- 7- and 13-year-olds that inspired him to keep living his dreams despite living with diabetes. He founded Riding On Insulin—which is now a nonprofit organization—to honor all the kids who inspired him to keep living. Today, Sean’s wife Mollie runs Riding On Insulin and Sean makes appearances at the organization’s global action sports programs (including ski/snowboard camps) for kids, teens and adults living with T1D, while managing his personal backcountry snowboarding career. In February 2014, Sean became the first person with T1D to backcountry snowboard all seven continents. His expeditions include trips to Morocco, Antarctica (twice!), Patagonia, Iceland, Norway, Japan, Kyrgyzstan, Alaska, Tasmania, and more. Sean graduated from the University of Utah with a degree in Health Promotion and Education, with an emphasis on diabetes.

Sean and his wife, Mollie live just outside Whitefish, Montana in a yurt with their two dogs, Daisy and Glacier.

Sean in Norway

Alissa:     How old were you when you started snowboarding and how did you know that this would be your profession?

Sean:        I started snowboarding when I was 12 years old.  Growing up in Southern California, beach sports should have been my thing. But for some reason, I was attracted to the mountains. A friend introduced me to the sport and I instantly loved it, even though the mountains were more than two hours away from my home. After a lot of pleading, my father would let me leave school early so I could practice in the mountains, and I would train until 10 p.m., squeezing in homework during the long drive home, and finally going to sleep after midnight.

By age of 14, my dad challenged me to compete. I excelled in the competition scene and began to pick up my first sponsors. Two years later, I was given the opportunity to go professional with snowboard racing.  I relocated to Whistler, British Columbia to train, compete and ride professionally. I then relocated to Steamboat Springs, Colorado after I graduated high school to train further. It was there that I was diagnosed with T1D.

Alissa:      Tell me about your career leading up to the diagnosis of T1D?

Sean:        My discipline was on the racing side of the sport, with a focus on the 2010 Olympics. I trained with prestigious athletes, which included members from the US team. Up until that moment, I had been healthy for my entire life. And then during the 2003-2004 winter seasons, I noticed on and off symptoms of a mystery illness.  I figured I caught some weird bug from my teammates that were returning back from Europe.

After the U.S. National Championships in Breckenridge, Colorado, I became violently ill.  I couldn’t stop vomiting. I was scheduled to fly to Quebec the next day for the Canadian National Championships. Luckily, I woke up feeling much better so I just assumed it was a 24-hour bug. I was able to go to Canada and participated in a great competition.

It wasn’t long until the mystery illness hit me again. I was constantly thirsty. I rationalized that the thirst was caused by the start of spring, combined with warm weather and training hard. I would down gallon-size jugs of grape juice, and feel horrible afterward—causing me to miss morning training sessions. The vomiting started again, too. I clocked it – two hours after I ate anything, I would get sick. I actually became afraid to eat.  Finally, I went to the emergency room. The doctors attributed by illness to some bad bug. They gave me anti-nausea medication and sent me home.  By the next day, I was vomiting again and unable to hold any food down.   

I visited the ER seven times within two weeks. Eventually, I was admitted to the hospital. During my 12-day stay, I lost more than 30 pounds and developed pneumonia. I was discharged to my parent’s care and went home to California to be treated by a general practitioner. The doctor ordered a glucose tolerance test, suspecting diabetes. It was shocking when a nurse called 24 hours later telling me the labs came back fine.

Alissa:    They said you were fine?  

Sean:    Yeah. I have no idea why they told me that. A family friend who is a cardiologist questioned it, too. He told me to get a copy of my labs so he could consult with a few colleagues for a second opinion. I asked a nurse for a copy of records, and noticed red flags all over the place. I questioned the labs and the nurse grabbed the doctor, who apologized to me and explained that I had Type 2 Diabetes.

Alissa: So you were misdiagnosed?

Sean:        Yeah. Big time. Being 19 years old, I grew up watching TV shows like “House” and “ER” where the sick person is diagnosed within 30 minutes. I assumed the doctor was right, and had no reason to question the diagnosis. I was advised to check my blood sugar and take pills daily. But, the vomiting started … again. Knowing my blood sugar was still high, I tried adding another pill to my regimen. When that didn’t work, I tried to eat an all protein diet.  Restricting carbohydrates only led to more immense weight loss. I was wasting away. None of my clothes fit.  Laying on my parent’s couch, doing nothing – I had to face the reality as some of my sponsors cut me from the team.

I became so depressed that I was determined to return to Colorado to get back into the gym. It was on that flight back to Colorado where I almost passed out. I was rushed to a teaching hospital, where I was correctly diagnosed with Type 1 Diabetes on July 3^rd — my mom’s birthday.

Alissa:      What I don’t understand is why they couldn’t detect it in a blood sugar finger stick?

Sean:        When I was hospitalized for the 12 days, they did suspect diabetes but I also had pneumonia.  Back then, Type 1 Diabetes was labeled as juvenile diabetes and Type 2 was adult onset. I think it was the theory that Type 1 only occurred in children and Type 2 was in adults. Being 19, maybe I was in a gray area? They did notice that my blood sugars were high and I had ketones in my urine.

Alissa:       You had mentioned that you became depressed. How did you handle your diagnosis emotionally?  How did your family help you through it?

Sean:        It was a struggle. I was so angry at the doctors for misdiagnosing me. My body was shutting down, heading towards death.  I wasn’t getting any nutrition. It wasn’t until the first insulin shot that I noticed an immediate difference. It was the most amazing feeling I’d ever felt in my life.

So I set out to learn everything I could about T1D. I started going to the gym around 4:30 a.m. because I was really embarrassed by how skinny I was. I had lost so much muscle mass.

I was also doing a lot of research, reading story after story about children as young as two years old living with T1D. Those kids inspired me. I wanted to give back to them what they had given to me. Winter sports are my passion and that is where the idea of founding “Riding On Insulin” came from. I wanted to host a ski/snowboard camp for kids & teens with T1D.

Alissa:      After your initial negative experience with doctors, how did you find an endocrinologist? And, what kind of regimen did they put you on?

Sean:        I wound up staying with Dr. Ping Wang, who happens to be the doctor that correctly diagnosed me. He is the chief of endocrinology at UCI Irvine California.  It was Dr. Ping Wang who helped me recognize and overcome the burnout that comes with chronic illness. He taught me how to deal with the emotions of feeling alone and isolated. I also started seeing a dietitian.  

My insurance didn’t allow me to get on a pump immediately – which is OK because I really didn’t want it. I had read this article about a professional football player who had Type 1.  He had talked about being attached to a pump. It was that word ‘attached’ that hit me hard. I started crying. I couldn’t imagine having something attached to me, reminding me every minute of the illness I have.

It wasn’t until I started volunteering at diabetes camps that I realized if all these kids could handle a pump – so could I. If I wanted to take my performance to the next level and start gaining back muscle mass, then I was going to have to try it.  

Alissa:    Which pump did you go on?

Sean:        At first, I was on a traditional tubed pump, but I have since switched over to the OmniPod tubeless system, and it has been the best compliment to my training as an athlete, especially for winter sports.

Alissa:      Do you feel a huge difference or do you sometimes wish you could take a pump break?

Sean:        I pump has helped me immensely. In the beginning, I was constantly traveling to competitions in varying time zones and I opted to take shots. But, if the forecast was wrong then my blood sugar would fluctuate too much, causing severe lows. The pump stopped about 80 percent of the lows, giving me much better control, and lowering my A1C substantially. I could set different basal rates for different sorts of exercises.  I recognized that for each individual living with T1D, it’s all about finding the technology that works for them.

Alissa:      Do you think you’ll ever take a pump break or are you content with it?

Sean:        I used to do that when I was on a tubed pump. I would go on pump vacations. The reason I switched to the OmniPod is because it’s tubeless and can attach directly to my body. With all of my remote snowboarding expeditions around the world, I have to worry about insulin freezing. The Pod is connected to me and my body heat keeps it warm so I can focus on my performance without fear of it freezing up. I don’t have to have anything else hanging on me.  I also just recently within the last two years, started using a Dexcom CGM.

Alissa:      What do you think is the positive impact Dexcom can have on training and competing or even non competing?

Sean:        I say if you’re an athlete, you should get on it. Even if you’re on shots, a CGM can benefit your training. When you check your blood sugar with a meter, that’s like one data point. Then another two hours, you get another data point. A CGM like the Dexcom provides a data point every five minutes, so it really fills in the blanks for me.  I’ve learned so much more about my ideal basal rates at different times of the day and night. It’s just been a game changer.

Alissa:       Do you have a specific diet that you follow? Where do you like to see your blood sugars before and after training in your competitions?

Sean:        I’m a big fan of oatmeal in the morning especially when I’m going out to exercise. It enables me to maintain a nice, stable blood sugar.

Alissa:       Lets go back to your snowboarding career. When did you move away from the competition scene?

Sean:        After the correct diagnosis, I turned my focus to the Olympics. However, I was getting burnt out on snowboarding.  I wasn’t having fun anymore. After I graduated from the University of Utah and was training with the Park City snowboard team, I was invited by some pro riders to join them on a backcountry

Matt Allen with his family

Matt Allen is a 15 year old stock car racer, snowboarder, football player, straight A student and diabetic. He was diagnosed with type 1 diabetes in July 2006, but he hasn’t let that slow him down.

Alissa:           Tell me about your early years, before you were diagnosed with diabetes at the age of six?

Matt:             I was snowboarding at age five and right before I was diagnosed I started racing. I was actually diagnosed while on vacation with my family. The doctors told me that having diabetes would not stop me from doing anything I wanted to do. I totally believed them!

Alissa:           What kind of sports do you enjoy? How did you decide which ones to pursue?

Matt:              I snowboard, competing at a National level, as well as race stock cars and play football for my high school. My dad tried to introduce me to skiing when I was young, but it was not exciting enough for me. So, we learned to snowboard together instead. Now my whole family snowboards, often going on vacation together. As for football, all my friends started to play and I wanted to be a part of a team sport.

Alissa:           I admire you for being able to involve yourself and your family in snowboarding. Once you were diagnosed, how did you feel about continuing in sports?

Matt:              I was so young that I didn’t grasp that it could change anything about me. I never really thought about changing my lifestyle. My parents also helped me deal with my diabetes.

Alissa:           How did you manage your diabetes at the same time handling sports and school?

Matt:              I had a lot of help in the early years from the nurses at school. As I've grown older, I manage it myself. While participating in sports I’m very diligent, checking my blood sugar, making sure I'm in range - not too low, not too high.  My CGM monitor actually makes it a lot easier.

Alissa:           I also noticed that you're a straight A student and you have a very high GPA. How are you able to pursue you academic studies and such an advanced level in addition to managing your sports and school with your diabetes?

Matt:              My dad has always assured that school was a priority. I wasn’t allowed to do anything unless I did well academically.

Alissa:           Is it hard to manage school and sports all at once? What would you say your biggest challenges are?

Matt:              Sometimes assignments are missed when I travel around the country to race or snowboard. That is the most difficult part. However, I always catch up by the end of the semester.

Alissa:           You mentioned that you were diagnosed at six years old. Because I'm trying to provide helpful advice to other diabetics, can you tell me more about your symptoms and how were you diagnosed?

Matt:              I was very thirsty and had to go to the bathroom often. I was easily aggravated and tired all the time plus I lost a lot of weight. At one point, I drank a whole gallon of orange juice in less than one hour – and then went to the bathroom three or four times after. While we are on vacation in Cape Code my symptoms worsened. My parents took me to a doctor who advised that I was probably diabetic. From there we went to the Cape Cod Hospital, where my diagnosis was confirmed. Unfortunately, that hospital couldn’t treat me so I was transferred and admitted to another for two or three nights.

Alissa:           How did your parents and family handle it emotionally? Did you have any emotional struggles at that young age?

Matt:              It was definitely hard on my mom. My dad didn't struggle visibly, but I'm sure it was hard for him. I was so young that I didn't really know what diabetes meant. I just knew that I felt sick and that I felt better when I went to the hospital.

Alissa:           Does diabetes run in your family?      "

Matt:              Not on my mom's side. I am not sure of the medical history on my dad's side, but I don't think so.

Alissa:           How often do you see your endocrinologist and what kind of diabetic regimen are you currently on?

Matt:              I am on the pump, which helps a lot. I see my doctor every three months to go over my A1C levels – the graph of where my blood sugar and the changes required for my pump settings.

Alissa:           Who is your endocrinologist, where is he/she located and does he/she have experience working with other athletes?

Matt:              My endocrinologist is Dr. Criego in St. Louis Park , Minnesota. She has definitely helped us manage my diabetes and my sports.

Alissa:           How did you find an endocrinologist that you felt comfortable seeing?

Matt:              My mom’s friend whose son is also diabetic recommended Dr. Criego. The doctor helps me so much so I can manage my diabetes while being active in sports and traveling.

Alissa:           You mentioned that you were on a CGM. Are you also on a pump? How long have you been on a CGM and which one do you use?

Matt:              I'm on the electronic pump and the Dexcom CGM, which I started to use about four months ago. I need to know what my blood sugar is every 20 minutes so the CGM is very helpful.  Ryan (Reed) used it in his racecars so he could know his blood sugar at all times as well.

Alissa:           As a fitness competitor, I agree. I’ve ordered the Dexcom, am going through training and will be starting it soon. Every athlete I've spoken with has said how beneficial a CGM is for managing diabetes while doing a sport. Even my doctors have been encouraging me to go on it, so it’s great to hear about your experience with it. My next question is, how did you adjust your diet? What is your diet like?

Matt:              I've never really changed my diet or thought I needed to stay away from something because I am diabetic. I've tried to eat the way I always have, but I admit that diabetes definitely brings awareness to what you're eating.

Alissa:           My daughter is a diabetic in middle school and I know there must be many challenges as a high school student who has diabetes. There are so many parties, events and holidays revolving around food. Do you follow a strict regimen or do pretty much eat what any non-diabetic eats? If so, what would be a typical meal for you at a party?

Matt:              I don't follow a strict regimen and tend to eat like a non-diabetic. However, at parties and events I try to not eat sweets because even if I give my correct insulin dosage, my blood sugar can still be high. When my blood sugar is high, I don’t enjoy the party. I usually eat pizza and drink diet soda, but not much else.

Alissa:           I know when my daughter goes to parties, she is used to, like you, not having sweets and has been really good about it. But any time we have a party or take her some place, we always know what she is going to eat and carb count in advance. Do you do that also?

Matt:              I have an app on my phone that tells me carbs for pizza and different types of food. For the most part, I have a very good idea of how many carbs are in a pizza per say.

Alissa:           Which carb-counting app do you use?

Matt:              It's called Carb Control or Carb Count. It works really well.

Alissa:           What do you do when you have low blood sugar while racing? How can you prevent low blood sugar? Do you have a special racecar that is equipped for it? I know with your CGM it's helpful, but how is your racecar equipped?

Matt:              I carry a sports drink, like a Gatorade or something sugary in my car with a long tube, which I can drink if I go low. Fortunately, I've been very careful about watching it and have never gone low in a race.

Alissa:           Was Ryan (Reed) helpful with the design of your race car?

Matt:              I feel like I wouldn't be on CGM right now if it weren’t for Ryan. He also told me about carrying a sports drink.

Alissa:           Has he been a good mentor to you?

Matt:              Yes!, Absolutely!

Alissa:           I’ve heard that you're fundraising for Ryan Reed’s charity ‘Drive to Stop Diabetes’.   How did you get involved?

Matt:              My dad and I were watching a race and we saw Ryan Reed in a car that said ‘Drive to Stop Diabetes’. We couldn’t get over how awesome that was. My dad reached out to Ryan’s charity offering to help fundraise at a local level where I race. Now my car looks just like Ryan's – Number 16. . It is red and everything!

Alissa:           When you are racing, who do you work with medically to care for your diabetes?

Matt:              For the most part, it is just my parents, my brother and my family. There are other people in the picture who know I'm diabetic and know what to do, but my main support is my family.

Alissa:           How many races do you do a year?

Matt:              I'll do a little over 20 at the local track and then go south and do some races in the winter. I did winter nationals last year in Las Vegas and Florida, so that equals about six races in the off season. In total, I would say about 30 races per year.

Alissa:           Are you also a part of NASCAR racing?

Matt:              I am not a part of NASCAR racing but Legends cars have a division, which is supposed to be a size down, cost effective model. That was the idea behind Legends.

Alissa:           Do you plan on competing in the Olympics or becoming a professional racer? Which is your favorite sport?

Matt:              Being in the Olympics would be very cool, but I don't think it is likely. It's hard being from Minnesota where we have hills and it’s hard to compete against states like Colorado where you can live on a mountain and snowboard and train every day. I definitely love snowboarding – it’s like racing in a lot of aspects. But I would probably say that racing is my favorite. I would love to become a professional racecar driver. I'm going to go as far as I can in racing, but if I don't make it to a professional level, that's okay too.

Alissa:           Do you have different types of athletic plans in your future?

Matt:              I want to keep pursuing racing and do both sports as much as possible. At the same time, I plan on going to college and getting an education. That definitely plays a factor in it as well.

Alissa:           What advice would you give people with diabetes who want to compete in racing or any other kind of sport?

Matt:              You can really do anything you want with diabetes, as long as you’re willing to take the time to manage your blood sugar. It's not always easy to do that; especially while snowboarding when it's cold out. You don't want to take your gloves off and do your tests on a hill, but that's what you have to do with these types of sports when you’re diabetic.

Matt Allen with car race car

You can keep up with Matt at http://www.greatnorthlegends.com

Please consider donating to Ryan Reed's charity DriveToStopDiabetes