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Pam Fernandes
Winning with Diabetes

Pam Fernandes is living an extraordinary life despite her type 1 diabetes and related blindness. Fernandes was diagnosed with diabetes at the age of 4, and has been legally blind since she was 21. In spite of 30 operations, including a kidney transplant in 1987, she has become a bronze-medal-winning Paralympic athlete, a five-time national blind cycling champion, and the first blind cyclist to ride up the intimidating Mt. Washington in New Hampshire. Pam Fernandes visited PlanetRx on May 3, 2000. Learn more about Pam Fernandes. This is an edited transcript of the chat.

	PRx Host :	Welcome to PlanetRx's live events. Today's guest is national cycling champion Pam Fernandes. Despite diabetes-related blindness, she lives a life of extraordinary drive and achievement. Thank you for joining us, Ms. Fernandes!
	Pam Fernandes :	You're welcome. It's great to be a part of PlanetRx's chat room.
	PRx Host :	Let's start with an achievement from the past. Many people aren't familiar with New Hampshire's Mt. Washington, so take my word for it that just the thought of hiking Mt. Washington is frightening for most people. Pam, you were the first blind person to ride up the mountain -- can you tell us a bit about what made you decide to tackle the mountain, and how it felt?
	Pam Fernandes :	I think that I enjoy challenge. And racing a bicycle up Mt. Washington was something that I wasn't quite sure I could do. I took it on as a challenge just to see if I could make it. We actually did make it to the summit: It was exceptionally difficult but very rewarding. I think I'd like to do it again to see if I can decrease my time.
	PRx Host :	How long did the ride take?
	Pam Fernandes :	I was afraid you would ask. It took a little over two hours to make it to the summit, much longer than we anticipated.
	zrica :	You go, girl!
	PRx Host :	A question from the audience:
	kaydo :	I went with our bike club last year on the bike ride across Iowa (RAGBRAI [Register's Annual Great Bicycle Ride Across Iowa]). I am a borderline diabetic and had trouble knowing what to eat, and how often, when riding 65 to 75 miles a day. I've thought of trying Goo this year, but I don't eat very much refined sugar, so I'm hesitant about how I'd respond to that. Are there any resources you can lead me to that would give me diabetic-friendly dietary guidelines for a seven-day ride? I'm signed up to go again this year, so I'm eager to be better prepared.
	Pam Fernandes :	I've heard lots of great things about the ride across Iowa. My experience with long-distance riding is minimal. But I find that decreasing my insulin dramatically on the days when I'm riding the longest, frequent blood glucose monitoring, and lots of simple and complex carbohydrates make the ride easier. I personally use many of the products designed by PowerBar. The gels give you fast sugar, while the bars give you more complex carbohydrates. They also tend to digest easily.
	PRx Host :	Here's another question from a fellow athlete:
	pookie :	Do you have to carry any special equipment with you when you cycle?
	Pam Fernandes :	I always carry a blood glucose monitor, insulin, and plenty of food when I ride. This becomes more difficult while racing, so in races I often only carry glucose, because testing and taking insulin would mean stopping, and stopping would mean losing. I sometimes have to guess at what I think my blood sugar is and take in glucose if I think I need it. With practice, you can learn how your blood sugars respond to various kinds of exercise.
	PRx Host :	How old were you when you got into cycling?
	Pam Fernandes :	I started cycling in 1993. That would make me 32 years old when I started.
	lucylu :	I have a friend who was diagnosed with diabetes. He was told to lose weight and exercise, but he refuses. He has no symptoms and no pain. What can I do?
	Pam Fernandes :	It sounds to me like your friend has type 2 diabetes. For a person with type 2, it's often recommended that diet and exercise will help that person manage the disease effectively. It may be that because he isn't experiencing symptoms, your friend isn't motivated to make the necessary changes. Lifestyle changes need to be made slowly, so maybe encouraging him to do light exercise is the way to go. Meeting other people with diabetes who lead active lifestyles may also show him that there are many of us who exercise to control our diabetes. There is an organization called the International Diabetic Athletes Association that may be helpful.
	PRx Host :	Have you always exercised in order to manage your diabetes?
	Pam Fernandes :	Being a type 1 diabetic, I've always had to take insulin, watch my food intake, and exercise. You can't do just one of these. I was pretty active as a kid, but didn't become competitive until after I received my kidney transplant in 1987. Right now, at 38 years old, I'm in the best shape of my life.
	PRx Host :	Maybe you can clear this up for the audience:
	nonono :	What's the difference between type 1 and type 2 diabetes?
	Pam Fernandes :	Type 1 diabetes is generally diagnosed at a younger age, and these patients must rely on insulin therapy. Type 1 is an autoimmune disease. Ten percent of people with diabetes are type 1. Type 2 generally affects older people, is usually non-insulin-dependent, and is often managed through diet, exercise, and sometimes oral medication or insulin.
	PRx Host :	You lost your sight at age 21, but didn't start biking until age 32. Was there a particular event or person that inspired the move?
	Pam Fernandes :	Yes! I received a phone call at my job from someone who was looking to find a blind person to ride the back of his tandem. I recommended programs to him, but he was eager to get started immediately. I volunteered, and loved cycling the first time I got on the bike. About a year later I signed up for a cycling camp for people with disabilities, held at the U.S. Olympic Training Center. It was then that I got hooked on racing. I love cycling so much that even when I'm no longer competitive, I'll always enjoy riding.
	tifferoo :	Was your first time cycling after you lost your sight scary for you?
	Pam Fernandes :	Actually not. I don't remember being afraid. I remember being exhilarated from being on the back of a bike. It felt like I wasn't blind! I didn't have to think about my cane, bumping into anything, paying attention to what I heard. I simply had to sit, pedal, and enjoy!
	PRx Host :	Here's another question about inspiration:
	jonathan :	Have you ever met any celebrities or incredible people that have diabetes?
	Pam Fernandes :	Oh, my! I've met a number of celebrities who either have diabetes themselves or have it in their family. I've met Nicole Johnson, a former Miss America, on several occasions. I've had the honor of testifying in Washington, D.C., with John Ratzenberger and Alan Silvestri. When I testified with those two in Washington, I needed someone to bail me out in case I forgot my testimony, since I'd memorized it. I didn't know who was sitting on either side of me. I simply leaned to my right and introduced myself, told that person I was blind, and asked if he would bail me out if I lost my place. He leaned over and said, "Hi. I'm John Ratzenberger (from 'Cheers'), and I'd be glad to help you." He was terrific! I didn't blow my testimony, but I could feel John lean over, adjust my microphone, and turn the pages as he followed my testimony.
	PRx Host :	That's so cool. How do you feel about the state of diabetes awareness and research funding?
	Pam Fernandes :	In regard to funding, there simply isn't enough to support all the researchers and all the projects that are out there. I imagine all diseases can make this same claim. I've been involved in testifying on behalf of medical research in diabetes, and I also serve on a public committee at the National Institutes of Health. And I can tell you that funding is better today than it has been in the past. As for diabetes, I think this is a really exciting time in regard to what we know and what's on the horizon. There always seems to be a gap between what we know about diabetes in the research arena, and what the general population of diabetics seems to know. We've got to do more to educate people about how to take better care of themselves.
	PRx Host :	How did you become involved as a spokesperson for diabetes awareness?
	Pam Fernandes :	I think the first time I was asked to take on a formal role as an advocate was when the president of the Joslin Diabetes Center in Boston asked me to testify in Washington, D.C. I also became involved with the Juvenile Diabetes Foundation and the American Diabetes Association. For the most part they've come to me, and I'm certainly glad they did. I feel it's my life's work to help educate people about diabetes, whether they're children, adults, Congress, or healthcare providers.
	PRx Host :	Here's a technical one from the audience:
	mona007 :	What are your average glycosylated hemoglobin A1c values?
	Pam Fernandes :	My last glycosylated A1c was 7.3, which is pretty good, from what I understand. Speaking of education, we need to make sure that all people with diabetes understand the importance of knowing their A1c values. For those of you unfamiliar with what an A1c is, it's a blood test that's done in the lab that will tell you your average blood sugar over the last three months. This is actually more important, or at least as important, as knowing what your hour-to-hour or day-to-day blood sugars are. It's suggested that having a good A1c can help minimize the complications of diabetes.
	katydid :	Have you had any experience using the insulin pump?
	Pam Fernandes :	I haven't used an insulin pump yet. I have a very good friend who thinks I should use one, and those who do use them actually like them very much. Because I'm training for the Sydney Paralympic Games in October, I don't think now would be a good time to change my insulin regimen to use a pump. Perhaps after Sydney …
	PRx Host :	Here's another technical one:
	Pbcomstock :	What sort of control did you have during your first 15 or 20 years with diabetes? What sort of control do you have now? (Specifically hemoglobin A1c and glucose readings.) Thanks!
	Pam Fernandes :	I was diagnosed with diabetes in 1965. Back then we didn't have home blood glucose monitoring. Nor did we have today's effective insulin regimen, including the insulin pump and Lispro. Without these modern treatments, control of diabetes was much more difficult. We also didn't have A1c tests. What we used back then were urine tests, which were certainly not accurate. So I would say my control was certainly nowhere near as good as it is today. Now I test six times a day on average, and during days of competition, anywhere from 12 to 20 blood tests a day. I now take four shots a day using a combination of Lispro and NPH. The other difference is that today most of us count carbohydrates, which makes insulin therapy more effective because we have a better understanding of what affects our blood sugar.
	topsy :	What have you found to be the most difficult aspect of your diabetes care?
	Pam Fernandes :	I think the most difficult part, unfortunately, is the guilt we all carry. I would like to think that we've come so far in healthcare management that people don't feel guilty. For example, I did a race last week, and I tried very hard to ensure my blood sugar was perfect at race time, and it wasn't. The race didn't go as well as my partner and I had hoped, and part of me felt responsible for not having made a better decision about my insulin and food intake. The most difficult thing for me, I think, is to not feel that it's my fault when things don't go right with my blood sugars.
	PRx Host :	You have said, "People tell me I shouldn't have to work, that I should stay home and rest. They want to cut my steak for me. The public has low expectations for people with any kind of disability. We all must raise our expectations of what can be done, and we have to stretch to reach those expectations."
	Pam Fernandes :	I think that people who are sensitive are generally sensitive about all things. I think what sometimes happens is that people want to protect me in an effort to help me. They don't always understand that teaching me to do it for myself is, in fact, helping me. We often find parents doing the same thing with children. It's pretty hard to sit by and watch someone struggle, so rather than watch them struggle, we all want to do it for that person. I would prefer that you take the time to teach me how to do something, and then the next time I can do it independently.
	kate :	Your parents must be very proud of you. Did they offer you any special kinds of encouragement? Do you have any advice for parents of diabetic children?
	Pam Fernandes :	My parents were wonderfully supportive. I guess we have to go back to guilt again. I think parents -- and my parents were no exception -- feel guilty for giving birth to a child who has a disease. I certainly don't feel that my mom and dad were responsible for giving me my disease. Diseases unfortunately happen. They happen to wonderful people. There's never a good reason, we just have to live the best we can with what we have. And even though I'm a person who has diabetes, is blind, and has had a kidney transplant, I certainly don't feel that my life has been shortchanged at all. The best you can do as a parent is to treat your child as you would any other child. Treat them normally, and they'll feel normal! Be understanding of their frustration, especially as children, because this disease takes a lot of work, and sometimes we just need supportive people to make our lives easier.
	PRx Host :	Has your attitude towards your diabetes changed over the years?
	Pam Fernandes :	Tremendously. I used to think that diabetes ran my life, and now I think of diabetes as something that just comes along for the ride. I'm not afraid anymore. I still recognize that the disease takes work, and sometimes I get tired -- but that's when I turn to my friends and ask for a little support. Diabetes is much easier to manage today, and we have the possibility of living very long, very happy, and very productive lives if we simply learn to take care of ourselves.
	Jon_TS :	I have been type 1 for 48 years and have found stress and illness to be the major challenges to insulin control. What have been your experiences that affect your control the most?
	Pam Fernandes :	I haven't really noticed that stress affects my blood sugar too dramatically. Although I have noticed small rises with certain types of stress. For me, of course, exercise is the biggest challenge in regard to blood sugar monitoring. This is because my exercise is different every day. Races occur morning, afternoon, or evening, and the lengths of races differ. So exercise is my biggest challenge. I guess my second biggest challenge is eating out. Although I learned recently that restaurants are much more willing now to accommodate special requests for low-fat and low-salt foods.
	jenny :	How many hours a day do you train for cycling?
	Pam Fernandes :	You must understand that I am currently training for the 2000 Sydney Paralympic Games.
	PRx Host :	Tell us about it!
	Pam Fernandes :	In fact, my training is probably going to increase, since my partner and I just earned a spot on the U.S. Paralympics Cycling Team. People tell us that we are America's best chance at a gold medal for cycling in Sydney. That puts a lot of pressure on us, but we're happy to rise to the challenge. So I train in the gym two to three days a week, for two to two and a half hours each session. I ride five or six days a week, and the distances depend on what day of training I'm in. For the next six weeks, my coach has me focusing on endurance training. He wants me on my bike at least two hours a day, and three to four on weekends.
	PRx Host :	First of all, congratulations on making the team! I am sure you'll do well by us all!
	Pam Fernandes :	You guys are so cool! Thanks for being interested! I hope to bring you home at least one and possibly two gold medals! The places where you can probably find results will be on the website at the United States Association of Blind Athletes and the United States Cycling Federation. I also know that We Communications bought the rights to cover the Paralympics and they're looking to market the coverage of the Games in the United States.
	Shannon :	I was wondering if you have ever tried Spinning classes as a work out and what you thought of them.
	Pam Fernandes :	Yes, I have tried Spinning. They're difficult classes. The intensity is high, but I rather enjoy them. I mostly rely on Spinning classes when I'm traveling and unable to get on my real bike. I use a single bike in my basement, which is on a stationary trainer. In fact, I just got off it before we started chatting tonight. I ride a tandem bike outside, either on the track or on the road, and this must be done with a sighted partner.
	jenny :	I saw an article in the paper about you in regard to a heart rate monitor that talks to you. How did you get involved with that?
	Pam Fernandes :	I met the people from New Life Technologies, who make a talking heart rate monitor called the HeartTalker. I met them through a friend who saw a display at a running race. This device is truly a wonderful asset for people who are blind, to let them train by heart rate. I understand they are also used by people who run at night, children in school, and for others who may find it difficult to use a traditional visual heart rate monitor.
	PRx Host :	Interesting!
	sman :	How do you handle diabetes in terms of close relationships, say a significant other? Do you find they understand when you're high or low and moody as a result?
	Pam Fernandes :	Yes. I believe that most people will handle your diabetes in the way that you present it to them. Sometimes this isn't the case, but for the most part I find people very supportive. Let me give you an example of support. Last week was an important week for me to have good control of my diabetes. If my sugars fluctuated too high and/or too low, my glycogen stores might have been depleted and this would affect my performance. By day three I'd decided the best way to know where my blood sugars were going was to test about every 15 minutes during the time of competition. My race partner and my coach bent over backward to make sure these tests were done in a way that didn't make me feel like I was being a burden. You see, I need assistance doing blood sugars if I'm to ensure that they're accurate. For the first time ever, my blood sugars were almost perfect during my last two races, with a sugar of 105 for my kilo, and blood sugars ranging from 89 to 124 during my match sprints. This would never have been possible without Al and Bill, my coach and my partner.
	PRx Host :	This question pertains more to your life before training for the 2000 Games:
	TWIG :	What other hobbies do you have?
	Pam Fernandes :	I enjoy reading, listening to music, taking walks, shopping, and spending time with friends.
	PRx Host :	We're almost out of time, so let's take one more question from the audience.
	jumpinjack :	When you were first diagnosed with diabetes, what prominent figure stood out to you most, whom you could associate most with this condition?
	Pam Fernandes :	I was diagnosed at the age of 4, in 1965. Throughout my childhood, I didn't actually really know anyone with diabetes. I did attend a camp through the Joslin Diabetes Center, but these were kids I spent only two weeks with. I didn't actually meet another diabetic whom I was friendly with until I became an adult. One of my closest friends with diabetes is a guy I met through the International Diabetic Athletes Association.
	PRx Host :	Your life is an inspiring one for people with and without diabetes and blindness. We wish you all the best for the Sydney Games! Would you like to give us any websites?
	Pam Fernandes :	Thanks for your interest. I'd love to have you follow my results this year.
	PRx Host :	We will!
	Pam Fernandes :	You can find me at The American Diabetes Association and at The Hartford's Break Away. That is my race team and they'll be posting results.
	PRx Host :	Thank you so much for joining us, Ms. Fernandes!
	Pam Fernandes :	Also contact the United States Association of Blind Athletes. Check us out October 18 to October 29.
	PRx Host :	Thank you all for joining us! Have a great evening!

More About Pam Fernandes

"People tell me I shouldn't have to work, that I should stay home and rest. They want to cut my steak for me. The public has low expectations for people with any kind of disability. We all must raise our expectations of what can be done, and we have to stretch to reach those expectations." -- Pam Fernandes

Throughout her 38 years, Pam Fernandes has done exactly that. Diagnosed with diabetes when she was 4 years old and declared legally blind when she was 21, Fernandes views her health challenges as motivation to succeed. Despite 30 operations including a kidney transplant in 1987, she is a five-time national blind cycling champion. In 1994 she won a silver medal at the World Championships for the Disabled and was named the Olympic Committee Athlete of the Year. At the 1996 Atlanta Paralympic Games, she was awarded a bronze medal. Last she year broke the world record for mixed tandem cycling with her racing partner Al Whaley.

"The only thing standing between me and a diabetes cure is more research funding," Fernandes says. In pursuit of that funding, she has been active as a spokesperson for diabetes awareness. In May of 1996, she spoke before Congress and the media at the Diabetes Summit; she was recently she was named to the National Institutes of Health's first Council of Public Representatives, an organization founded to increase public awareness of the NIH's work. Currently, Fernandes is the honorary spokesperson for the 2000 Tour de Cure, a nationwide series of cycling events promoting the sport and diabetes awareness.

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