People who develop diabetes type 2 as adults often don’t know they have it until a blood test discovers it. In my case, prior to 2013, there was no sign of it. In December 2014, my A1C level, which measures the average amount of glucose in your bloodstream over a three-month period, was 5.8 percent, indicative of a pre-diabetic condition. A year later it was 6.9 percent, and four months after that, it measured 7.2 percent. (Two readings of 6.5 or higher means you join the diabetic club, like it or not.) The doctor broke the bad news to me this past April: “You now officially have diabetes.”
I had enough to worry about already: coronary artery disease, peripheral artery disease, SCI, a below-the-knee amputation from skin complications, bowel and bladder problems. Now a disease that slowly causes damage to other bodily organs? So I started researching diabetes in hopes of finding a way to successfully deal with it.
Here’s some of what I found: If you have SCI with resulting paralysis, you are at greater risk for diabetes than the general population. A 2013 Canadian study concluded that the odds of people with SCI having type 2 diabetes are 2.5 times greater than in those without SCI. An American study of veterans, conducted in 2006, found the prevalence of diabetes in those with SCI was three times greater. In the mainstream United States, the rate of diabetes among both males and females has increased dramatically from 1980 until the present.
So what happens to your body when this hidden disease is at work?
The list of potentially serious complications is alarming. Fortunately, the damage doesn’t happen suddenly. All the more reason to ask your doctor to track your blood glucose levels: When diabetes creeps in, glucose levels rise, causing damage to blood vessels (heart disease), nerves (poor circulation), kidneys (kidney disease or failure), eye damage, hearing impairment, non-healing wounds, even Alzheimer’s. Since your blood circulates throughout your entire body, micro-damage in tiny capillaries and cells results over time.
Frightening, isn’t it?
The good news is that strict control of carbohydrate intake combined with any movement at all (the more the better) and medication (if needed) can help reduce the harmful effects of diabetes or even avoid it altogether.
Accepting the Challenge
My doctor sent me to a four-week class to learn about diabetes. I was the only wheelchair user in the class. While the instructor was talking, I couldn’t help wondering if I would even be there had I not become paralyzed more than 50 years earlier. To find answers, I would have to learn everything I could and talk to other wheelers like me, outside the class. My first interview was with Kim Harrison, 57, who contracted transverse myelitis at age 45.
“I woke up one morning, my right foot was tingly, went to ER, and by noon I was paralyzed, T10 incomplete,” says Harrison, of Douglasville, Georgia. Ten years later she was diagnosed with diabetes after blood work alerted her doctor. “The A1C level was 11.9, really high, but there were no complications. I felt fine, normal, would never have known.”
She thinks her diabetes has something to do with paralysis. “I went from size 10-12 to 24-26 after my TM diagnosis. Weight has been a problem since then.” But she has been gradually losing weight, mostly due to being active and making wise food choices, and has returned to size 16-18 in pants. “I swim as much as I can. We built a pool. When I’m in water, I can walk. I can use a walker in the house, but my right leg drags.”
She also has a portable mini-exercise machine that automatically moves her legs or allows her to pedal with her arms. “I can pick it up, carry it around, watch TV, crotchet, whatever. It makes me feel better physically and mentally.”
As for meds, she was taking metformin for the diabetes, but her dosage has been reduced, and her A1C level is now down to 5.7. “Doctor says if I can stay at that level, I can probably come off the metformin.” She thinks exercise is the key, but keeping a strict diet is also very important. “I have made a conscious effort to eat right. I eat grilled chicken, turkey burgers, whole wheat bread, and veggies when I can. It’s not a diet so much as rethinking the choices I make. At restaurants I take one small piece of bread. I used to eat the whole loaf.”
The two main factors in a diabetic diet are limiting carbohydrates and portion control. Since carbs turn to glucose, a form of sugar, in your blood — and diabetes diminishes your ability to convert glucose to energy — you must become an ardent label reader and strictly limit carbs. Processed and starchy foods can drive your blood sugar to dangerous levels. Foods high in protein are beneficial, as are whole foods, especially natural fruits (in moderation) and vegetables. They help your body turn glucose to energy.
“I have conditioned myself to think, ‘this is my food, not what I have to eat.’ I eat just enough, it’s self-control, not a diet. I won’t refuse foods, just cut the burger in half or skip the bun. You can still enjoy the same foods as everyone else, but control portions and carbs.”
Her doctor has told her he can’t get over how far she has come. She is winning the battle against diabetes. What motivates her? “I had to give up so much with TM, I don’t need any more problems. No more pills, fewer pills. Not one more problem. No more concessions.”
When Diabetes is Complicated by Subsequent SCI
Evan Sleight, Brigham City, Utah, 44, sustained a C5 SCI in 2010. Sixteen years before that, he had been diagnosed with diabetes. But everything changed after his SCI. Now he uses a sip-and-puff wheelchair full time. “The stuff I used to eat would burn off, but it won’t do that now. Now I just can’t dive into a meal. I have to know in advance what I can eat and how much. I have to know carbs. My eating has changed dramatically.”
Before his SCI, neuropathic pain did not bother him. Now, if he doesn’t watch what he eats, his hands and feet feel like hot needles are poking him. “Dealing with nerve pain hurts more than just watching what I eat. It is a powerful motivator.”
When he left Craig Hospital following rehab in 2010, he weighed 195. Over the next few years he ballooned up to 300. “Now my weight is 275, and we’re working to get it down to the 200 range. It’s slow with no exercise. You have to be vigilant. You have to say no. Thanks but no.”
But he admits to a weakness for chocolate. “My wife has a friend who is Swiss, and she brings over this fantastic Swiss chocolate. Sometimes I get stupid and overdo it.”
Mostly, though, he eats according to plan. For breakfast he usually has a protein shake — fruit, ice, soy milk and protein powder. For lunch he will have a wrap — taco meat or roast beef, maybe some pickles, in a tortilla, and some veggies. “Not a big burrito, just a simple wrap, maybe with a little cheese. Very few carbs.” And for dinner, more protein — fish, shrimp, or meat loaf — with a small baked potato and veggies.
“I have to keep my protein up because I keep getting pressure sores on my feet. With protein they heal faster. Management of your body is absolutely critical with diabetes, especially your feet.” Sleight never had a pressure sore prior to his SCI. “We have learned so much about how to take care of wounds. I could not do this without my wife. I love my wife. You have to have a good partner, someone who is as diligent as you could be, checking your feet everyday for abnormalities. My kids call her the “The Skin Nazi.”
Sleight’s diabetes may have a genetic link. “My mom and dad both had it. But they got it later in life. When I got it I was 28.” He and his wife have more than quadriplegia and diabetes to manage. They have six kids. “We have a 20, two 19s, a 17, and two 9’s. Two sets of twins. Sometimes it can be stressful with the kids, but it’s worth it.”
He says the key to managing diabetes is to get a good doctor and stay on top of your A1C levels. “Keeping up with your diabetes is like changing the oil in your car — continual maintenance, especially if you’re a quad — and you will extend your life and stay alive.”
Living Alone with Diabetes
Steve Pisano finds it difficult to eat right and manage carbs because he lives alone and works. “I have a lot of excuses,” he says. “I’m not disciplined when it comes to eating. I don’t have anyone to cook for me so I eat out often.” Pisano, 50, a T3-4 para, was injured in 2003. At 5 foot, 3 inches tall, he weighs 187. A year ago he was 10 pounds heavier. “Most of it is in my stomach,” he says.
He lists his occupation as photographer but is developing his own business — Device Doctors — repairing communication devices. “I’ll fix anything — cell phones, tablets, Apple computers. I’ve been doing it about two and a half years.“ He lives in Fraser, Colorado, in mountainous snow country.
About two years after being injured, he noticed his urine output had grown tremendously. “Do I have a bladder infection?” he wondered. “Why do I have to cath every two hours?” At the doctor, his blood sugar level tested really high. He found out one of the symptoms of diabetes is increased urine output.
The local doctor tried several meds, but his glucose level played pinball, bouncing high to low and high again. When he found the right combination of two drugs, his insurance company refused to pay for one. His glucose levels went haywire again. Now he is gradually gaining back control, having learned several tricks of eating right as a single man.
At McDonald’s he will get a cheeseburger or double cheeseburger and throw away the top bun. “Or I’ll take it to my office and throw away both buns and eat off a plate. I cut out soda, but I’ll drink Mexican Coke, which is made with cane syrup instead of high fructose corn syrup. Or I’ll drink half lemonade and half unsweetened ice tea. I’ll also drink green tea with honey.”
Instead of plain water, which he dislikes, he buys packets of True Lemon or True Citrus. “It is fantastic. It’s crystallized lemon, cold-pressed. One packet equals one lemon. No artificial sweeteners. Really tastes like lemon. I will fill a bottle of water with ice and put a packet in it, and voila! I buy cartons with 500 packets and it lasts forever.”
He thinks his bouts with autonomic dysreflexia may be related to his diabetes. He gets busy, forgets to eat, and his blood sugar drops. This triggers AD, he says, and then his blood pressure spikes. “I was in the ER for hours trying to figure it out. Because of my T3 SCI level, I don’t feel hunger. My blood sugar gets low, sneaks up on me. Then my body overcompensates.”
Pisano says he had an uncle who was really heavy and had diabetes. “He had it bad.” But no one else in his immediate family. “With diabetes,” he says, “you have to be aware of what can happen, so you know what is happening. It’s an invisible disease. One day, boom, it’s there!”
Eat Your Veggies
Valerie Alexander, Fayetteville, Georgia, thinks she had diabetes at the time of her injury but didn’t know it. Now 45, she was injured at C5 in a car accident 11 years ago. “They told me to watch my weight and my diet, but didn’t mention any A1C level. When I was released, I went to an internal medicine doctor for diabetes, but my biggest problem was quadriplegia. They put me in an assisted living home and I went into a diabetic coma. My blood sugar level was so high I had to go to ICU.”
Part of her problem was extreme stress. Blood sugar levels go up under stress. Her husband died in the accident, leaving her with two children, 9 and 11. “I was more worried about them than myself. Not even thinking about diabetes. I didn’t realize it was that serious. Really, really, really serious.”
Alexander, who is African-American, knows that people of her race are more susceptible to diabetes, but says it is “more of a diet thing. We do corn bread, sweet potato pie, mac and cheese, cakes. The carb part is what’s bad. My mom loves to cook and her specialty is sweets and cakes.” Now that she uses a power chair, she knows she has an even bigger challenge than her mom had. “How are you going to burn off the corn bread and donuts if you’re not moving?”
It took two or three years to get her diabetes under control. The key, once again, is strict carb control. She eats veggies as much as she can. “And I’ll drink pickle juice or vinegar and it will keep my blood sugar down. If I eat a sandwich, I take off the top bun. I drink three or four quarts of water a day.”
Now living independently, she asked her daughter to come live with her. Her home health caregivers, she says, were unreliable. The new living arrangement had an unexpected benefit: “She put in a Wii game and now I can exercise. You can dance to good music. I went back to the ’70s and ’80s — Michael Jackson, Whitney Houston, Madonna, Boy George. Wii music has it all. I feel exhausted after doing it. Fatigued, but good for having done it.”
On August 22, four months after being diagnosed with diabetes, I had blood drawn for an A1C test to see if I would have to start on medication. By then I had made an attempt to be more active and radically change my eating habits. Like a lot of kids, I grew up disliking veggies. When I finally ate an entire helping of them in the third grade, my older brother, a seventh grader, made a medal for me that announced: “Timmy ate all his peas.”
On the day after my blood draw, my doc called. “Good news! Your A1C level went down to 6.4, back at the pre-diabetic level. If you can keep it there, you won’t have to be on any meds. Good job.”
I’ve been a good boy these last four months, finally putting into practice what my mom tried to pound into my head: “Eat your vegetables!”
• Spinal Cord Injury and Type II Diabetes, www.ncbi.nlm.nih.gov/pmc/articles/PMC3821709/
• Diabetes Mellitus in Individuals With Spinal Cord Injury or Disorder, www.ncbi.nlm.nih.gov/pmc/articles/PMC1864854/
• Diabetes and Spinal Cord Injury: Prevention and Treatment, craighospital.org/resources/diabetes-and-spinal-cord-injury-prevention-and-treatment