In 1985, just before my 40th birthday, I was diagnosed with Type 2 diabetes. To say that this was a life changing event is an understatement. Though, at the time, the full impact of that diagnosis was still years away.
I didn’t understand how diabetes happened to me – I was fit, exercised and ate the right foods. I later learned that I was at-risk from birth – a ticking time bomb! This is because of a family history of diabetes (genetics), as well as weighing over 9 lbs. at birth, which is a risk factor for both baby and mother.
My treatment began with diet control. I was simply told to read nutrition labels and avoid foods that listed sugar as one of the first 3 ingredients – certainly an over-simplistic approach. I then went into denial about having this disease, typical of many diabetics upon diagnosis. Not surprisingly, two years later, I progressed to requiring oral medication.
Still, I didn’t take my diabetes management very seriously. Within ten years of my diagnosis, I began to understand and experience the consequences of my poor self-management of the disease.
In the meantime, in 1990, I co-founded the not-for-profit Defeat Diabetes Foundation with my brother, Jerry, at the time an undiagnosed diabetic. In 1990 there was little reporting about Type 2 diabetes, yet the numbers of people with the disease was a staggering 12 million Americans, and growing exponentially.
In 1995, I decided to do a major diabetes awareness event and began training to run a marathon (26.2 miles) each day for eight consecutive days, across the state of Florida. Running was my “exercise of choice” and I had run single marathon distances several times. And, although I was 50 years old and diabetic, I felt that with proper training I could accomplish this feat.
I began losing weight, but attributed it to my ramped up workout schedule. I had lost about 30 pounds when I woke up one day in excruciating pain and my life was changed forever. It was severe diabetic neuropathy. Coupled with the weight loss I was on a rapid downhill slide – with my diabetes totally out of control.
The severe pain and continued weight loss (ultimately 75-80 pounds) seemed endless. And, although under the care of several doctors and other health professionals, my life was at risk. I was bedridden for two years and there were many days that I thought would be my last. I faced a clear and certain sense of my own mortality.
Then, I started to understand the “bigger” role that I could play in the treatment of my own disease and learned everything I could about diabetes. I worked diligently with a team of dedicated diabetes professionals to understand how food and exercise affected my glucose levels. That and the daily use of insulin injections finally got it under control.
My recovery wasn’t without complications, though. Severe peripheral neuropathy in my feet and legs resulted in constant pain, balance problems and an inability to run. I, also, continue to suffer from the other neuropathies common to many diabetics: proximal, truncal and autonomic. Retinopathy also threatened my vision, requiring surgery on both eyes to stave off blindness.
And still the problem of diabetes remained under reported while the numbers reached epidemic levels (currently, 24 million Americans, and rising!). I decided to undertake the Mr. Diabetes® Wake Up and Walk® Tour, a 10,000+ mile perimeter walk of the United States to, literally, take the message to the streets and raise awareness about diabetes.
My journey began December 1, 2000 and concluded on December 21, 2008. I walked through all of the 34 perimeter states, through big cities like Los Angeles and Boston and towns that barely register on a map. I crossed hundreds of major rivers and waterways, deserts, coastal rain forests, the continental divide and 4 time zones – twice! I walked through blistering heat, rain, high winds, freezing cold and snow; wearing out 25 pairs of walking shoes and logging a total of 10,030.3 miles.
While on my journey I met with 78,000 individuals, one-on-one, thousands of whom shared their own diabetes concerns and experiences. I lived in their communities for weeks, or months, at a time. Sometimes it was challenging to maintain good glucose control when there were limited healthy choices for restaurants, few grocery stores, or only served by truck stops or convenience stores. Often, communities were lacking appropriate medical professionals or facilities to help treat and manage their disease. Many individuals lacked even the most basic information about ways to reduce their risk of diabetic complications.
I spoke to many thousands of people in groups, at churches and synagogues, schools, senior centers and civic organizations and I met with hundreds of elected officials and government administrators to discuss ways to create awareness about and prevent diabetes with low cost programs that foster a healthier community.
I was the subject of almost 1,000 media interviews resulting in outreach to over 70 million Americans. Now, you can scarcely listen to the news without hearing about the issues of diabetes, obesity and nutrition.
I had extensive meetings with dozens of healthcare administrators and diabetes researchers to learn about the latest treatments, tips on self-management and to participate in diabetes education programs as a guest speaker. Many top researchers reported that a cure for diabetes is unlikely in the next 20-30 years. Our best option to quell the Type 2 diabetes epidemic, which represents 90% of all cases, is to contain it through prevention efforts.
So, while there is still plenty of work left to do, it is something I believe we can accomplish if we work together to create awareness and local prevention projects that create healthier communities.
Toward that end, Defeat Diabetes Foundation (DDF) offers a number of innovative programs. One such program I am currently championing is our MADDCAP™ program (Martial Arts Defeat Diabetes® Community Action Project). MADDCAP™ was created by DDF in cooperation with martial arts Master Teacher Tom Callos and the New Way Network. MADDCAP™ is a community-based program designed to utilize the efforts of martial arts citizen-teachers all across America to educate children and communities about diabetes, and to undertake community based awareness and prevention projects to foster a healthier local community.
Our website, www.defeatdiabetes.org, offers over 3,500 pages of valuable information on diabetes, nutrition, self-management and latest news about the disease to assist diabetics to take control of their condition and live a healthier life.
I know from the supportive response I receive from people wherever I go that my message is needed and appreciated. My message is one of HOPE. When people learn of my own experiences and they see how I am able to deal with my own diabetes they take heart that they, too, can fight back.
“What’s worse than finding out you have diabetes? NOT finding out!!!”
AWARENESS + ACTION = PREVENTION®
By Andy Mandell