His Diabetes Journey Took Him Farther Than He Ever Expected
You may have heard of Andy Mandell. In 2002 he launched the Wake Up and Walk Tour, a 10,000-plus-mile walk around the perimeter of the United States, which he expects to finish in December 2008. During his 10-mile-a-day walks (with seasonal breaks), he hands out brochures to promote diabetes prevention. But Mandell's personal journey started much earlier—when he was diagnosed with type 2 diabetes at the age of 44 in 1985. Mandell kept his diagnosis a secret from his family for two years, because he feared their nagging, and went through a serious health crisis due to diabetes-related complications. Now the former real estate agent just wants to spread the word to others. Mandell estimates that 69,000 people have heard his message during his walks in the past six years.
Newer types of insulin allowed Andy to reduce his number of daily injections.(ANDY MANDELL)
Diabetes has been in my family for generations. But frankly, by the time I was in my 20s, I was sick of hearing about it. It was always, "Dont do this, youre going to be diabetic; dont do that, youre going to be like your grandparents." So I made a deal with my motherI'd see a doctor about it when I turned 40, but until then she had to stop nagging me.
Well, she held me to the bargain. When I was in my early 40s, I didnt even have a doctor to see, so she sent me to hers. It was 1985 and I felt just fine.
After my appointment, they called me back for a follow-up exam. The doctor said, "Andy, guess what? Youre diabetic." I couldn't believe it. I was a pudgy kid, but in my teens I had thinned out. I wasn't an athlete, but I exercised. I could easily knock off 100 push-ups and barely break a sweat. It just didnt seem real. Did I tell my family? No way. I couldn't bear to hear the "I told you sos," and I kept the diagnosis to myself for two years.
The wrong treatment, then no treatment
My doctor did set me up with a nutritionist, who gave me some suggestions on how to change my diet. But mostly the recommendation seemed to be to look at food labels and avoid them if any of the first three ingredients was sugar in any form. It was easy enough to do, so that's what I did. But it turned out that it wasnt the right thing to do.
About two years after my diagnosis, a woman in my karate class who was a nurse and type 1 diabetic told me she didnt think I was getting the right type of treatment. I started to see her doctor, who was an endocrinologist. The difference was like night and day.
He immediately put me on oral medications, and I had all kinds of tests for my eyes, kidney function, and cholesterol. I went through some highs and lows with my new medication, but I had improved hemoglobin A1c readings, which I had never even heard of before. It was all new to me, but I felt very secure and comfortable.
Then around 1989, I lost my job and my insurance. I was on COBRA, a health-insurance extension that covers you for up to 18 months after you leave a position and before you find another job with health insurance. Anyway, in my world, that [new job] didnt happen. Through some mix-up I did have a two-year supply of Glucotrol tablets, but I wasnt seeing my doctor. And the finger sticks, the glucose monitors all seemed so expensive. I started testing my blood sugar less and less. I thought, Im doing all right, I'm eating well, exercising, and taking Glucotrol. But I was on my own.
Next Page: Starting a foundation
[ pagebreak ]A major health crisis
In 1990, I moved from Boston to Florida to live with my brother, who was diagnosed with diabetes a few years later. I started the Defeat Diabetes Foundation, which is a nonprofit organization dedicated to informing and educating the general public about diabetes and its prevention and management.
I just felt that the current medical-care system wasnt working for people with diabetes. It didnt seem to be addressing any of my problems, so I started the foundation.
By the mid-1990s, the foundation was doing well. I was about 50 and decided to train for an eight-day run across Florida to draw attention to the disease.
I cranked up my workouts, and I was totally focused on the goal. There were a couple of signs during my workoutssuch as rapid weight lossthat I was having diabetes-related problems, but I didnt know how serious they were.
I felt strong; I thought I was doing good, eating right, and just sticking with the exercise. Fortunately, I had health insurance by this time, which had kicked in maybe two or three months before that, but I hadnt gotten to see a doctor at that point.
And then bingoI was coldcocked by complications. One day I woke up and I couldnt move. I was frozen in pain. I didnt know why, but I knew it wasnt good.
My brother took me to the Diagnostic Clinic in Largo, Fla.
I thought I was dying
At the clinic, a team of doctors, including a neurosurgeon and a general practitioner, tried to figure out what was going on. Finally, the endocrinologist told me that my diabetes was out of control. My hemoglobin A1c was 14.7%; it was the second highest theyd ever seen.
It turned out I had severe neuropathy, which is diabetes-related nerve damage. I also had diabetic retinopathy, a sight-robbing condition, and rapid weight loss, due to uncontrolled blood-sugar levels.
I was in so much pain due to the neuropathyit was just a whole new dimension of painthat I was nearly bedridden for the next two years. The skin sensitivity was absolutely excruciating; I could only sleep at the point of exhaustion. When I tossed and turned, the pain would wake me up. I was living at home with my parents, and I had a small disability policy.
I had to have laser therapy on both eyes and then I had to learn how to walk with feet and legs that were completely numb due to the nerve damage.
My situation just kept getting worse; I thought I was dying. The fact is, I expected to die from diabetes, and I accepted it.
Next Page: Wake up and walk
[ pagebreak ]Walking the walk
As time went by, I knew I was going to live. My sister set up an appointment at the Joslin Diabetes Center in Boston, and the doctor up there put me on insulin. Im very grateful to him for literally saving my life.
I couldnt run anymore because of the numbness in my legs. However, I still wanted to draw attention to diabetesmaybe even more than in the past. I decided to resume my project, but on a larger scale. In 2002 I began the Wake Up and Walk Tour and vowed to make the 10,000-plus-mile walk around the perimeter of the United States.
My goal is to get out into the communities, make as much noise as I can, and draw attention to this epidemic.
When I started in 2002, I walked from Florida to San Diego and then up the West Coast and around to Montana, where I had to stop at the Idaho-Montana border in November 2003 because of the winter weather. I spent the winter in Las Vegas, continuing my training and meeting with various officials, like Oscar Goodman, who is the mayor of Las Vegas.
I started again in April 2004, and walked as far as the Illinois-Wisconsin border before I had to stop due to the weather. I spent the winter in Florida, working for the foundation. The next year, I walked to Seneca Falls, N.Y., then stopped and spent the winter in Buffalo. I resumed the walk in April 2006 in Seneca Falls, and Ive been walking continuously ever since.
The Defeat Diabetes Foundation is a nonprofit foundation, and we accept donations. During the course of this walk, I never ask for donations. I dont want to mix the message. A lot of this walk has been self-funded. Loans from officers to the foundation—Im an officerhave been about $400,000. I may never get that money back, but its important to me to spread the message, and its worth it.
I hand out brochures as I go, say hello, and people just walk with me, anywhere from 25–50 people a day. When Im in a rural area, it could be 10-15 people; in a city, it can be up to 150 a day.
We can do anything
If you have diabetes, it can be easy to feel sorry for yourself and say, "Why me? Why not somebody else?" But I dont feel angry at all. Everybodys got something that will seem like an insurmountable challenge. If you dont now, you will down the road.
Diabetes is a challenge. So is this walk. But I enjoy challenges. I dont want to avoid diabetes, but to deal with it and understand it and either work around it, through it, or over it.
Im 63 now and still standing. What's more, feeling is slowly coming back to my legs. I can now feel rocks that get in my shoes, which I couldn't before.
I'm going to finish my walk on December 21, 2008, in Madeira Beach, Fla., where I started. There is no cure yet, but at the same time, we can prevent or delay type 2 diabetes much of the timeand thats what the foundation aims to do.
Weve launched our next program, the Martial Arts Defeat Diabetes Community Action Project (MADDCAP), a community project incorporating diabetes education into youth martial arts study.
One really good thing came out of my health crisis; Im comfortable with my own mortality. That fear is gone. My health crisis didn't kill me, and gave me license to extend myself in a whole lot of ways.
I learned never to hold back because of a fear of doing something. Just go ahead and do it.