The word “nutrition” makes me think of third-grade health class when we dutifully drew our food pyramids and colored posters reading, “you are what you eat”–boy was that scary. I vaguely remember the basics–chocolate is not a vegetable, drink lots of milk and water, eat your vegetables and fruit, and a big breakfast is the most important meal of the day.
Now that I’m older I know that when I outgrow my jeans I should drink Slim-Fast –chocolate, of course–and skip a couple of meals a day. To handle my MS symptoms I’ve been told by well-meaning friends to eat bee pollen, take B12 supplements, mix dried algae into my morning coffee and stock up on industrial-size canisters of Metamucil. I drink lots of coffee for my fatigue and when I’m desperate to get rid of a symptom I’ll swallow just about anything.
In other words, over the years I’ve learned nothing about nutrition and I don’t even remember what a food pyramid looks like!
So I questioned the real experts–NM readers and freelancers–along with registered dieticians from five of what U.S. News and World Report says are the nation’s top 10 rehabs. Their answers surprised me–a lot has changed since I’ve been in the third grade. For one thing, we’re now supposed to eat five meals a day. But some things are the same: Chocolate, alas, is still not a vegetable … even though it is made from a bean.
Dan Wilkins says it has only been a few months since he started watching what he eats, “but now I can put my pants on.” It’s been a while since he’s been able to do that. After he became a C5-6 incomplete quad 23 years ago, he immediately went to a size 36. Then up to 36, 38, “and it just got painful,” he says. Neither he nor his wife likes to cook so they eat out a lot. Then he edged into the 40s–“unbuttoning the top, feeling like the old guys,” says Wilkins, 45. “Plus I just got tired of pushing this fat ass around.”
His moment of clarity? Double chin time in the mirror. “I said, Jesus, Dan, why do you keep doing this to yourself?” He’s already cut 10 pounds off by reading labels and paying more attention to how much he drinks. “The wine and the beer, all that stuff adds up,” he says. “Also, my sister-in-law does the Weight Watchers point system and I’m always asking her, ‘How many points is this?'”
Besides being able to button his pants, Wilkins, a graphic designer, says his transfers are now a lot easier. “So is getting dressed and getting out of bed.” He’s still 20 pounds heavier than his goal, but says he already feels a difference in his shoulders. Also, even though he does most of his personal care, his wife helps out a great deal, and only recently has he thought about how his weight affects her and others involved in his personal assistance. “The more we gain, the more we put out their backs and cause other problems. Our nutrition really does affect more people than just us.”
Wilkins, who lives in Luckey, Ohio, is not alone. Like most Americans, weight loss among wheelers is a growing concern. Unlike most Americans, wheelers can’t jog off the extra pounds. But nutritionists agree that it usually takes a combination of better exercise and diet to lose the flab. Wilkins pushes his 4-year-old son around on his lap for exercise, making the rounds in their yard. “And I’m making everything I do take more energy, like I pick up more around the house.”
Small diet changes can easily add up to pounds lost, says Susan Uhl, a registered dietician with the Ohio State University Medical Center. “Let’s say that 2,000 calories is what I need to maintain my weight. So if I eat 1,500 for a week I should lose a pound. If I stay at 1,500 a week I’ll continue to lose a pound a week. For many people that may be cutting out three cans of regular pop a day, or that late night hot fudge sundae.”
Like Wilkins, Uhl suggests checking labels carefully, including the labels of food marked low-fat. “There are different carbohydrate fillers in low-fat products, and that can make up the difference in calories.” So you may cut down on fat intake and still have your scale scream at you.
Herbert Drill, 62, says moving to Jacksonville, Fla., helped him lose 30 pounds. He loves to eat. “We moved to Florida and my best friend from high school and his wife came down to help us get situated,” says Drill, who has muscular dystrophy. “We went out one night, and I’m going at it. My friend literally took the fork out of my hand and said, ‘Take the rest home, that’s a big portion.’ I was so embarrassed that I decided that’s it, I’m going on a diet.”
Not long after he started watching what he ate, Drill discovered he’s a diabetic. Under his doctor’s guidance he started eating more frequent meals, stopped snacking, and discovered his new diet did more than help his diabetes. “The less I ate and the more sense I put into my diet, the less frequent and less pronounced my spasms became,” says the semi-retired newspaper reporter. Also, pushing his manual wheelchair is now a lot easier. “And with less weight it’s easier to get out of the couch and into the wheelchair. And other needed but less pleasant places,” he says.
Drill has two weight loss tips. “There’s a company in the Chicago area called Egg Cream America and they put out Jeff’s Sodas, all sorts of unusual flavors, and they make a chocolate soda that has no carbs. It’s terrific, it fulfills your desire for chocolate and soda.” He orders the soda online at www.getcreamed.com.
His second tip? “In Florida they have pole beans. They’re twice the size and thickness of string beans and have twice the flavor. So I switched from potatoes to tasty things like pole beans.”
Water: The Magic Elixir
As Drill discovered when he was diagnosed with diabetes, having a disability doesn’t exempt wheelers from other conditions. Theo Braddy, 43, learned the same lesson.
“My reality was I got diagnosed with cancer and cancer has a lot to do with diet,” says Braddy, director of the Center for Independent Living of Central Pennsylvania. “I thought about all that I had put in my body over the years, and I started paying attention more to fatty foods and those kinds of things.” He eats more fruits and vegetables now and follows the Slim-Fast diet. “I was going crazy, eating everything,” says the C4-5 quad. “Kentucky Fried Chicken was my best friend. Now I eat a lot of turkey.”
He eats a Slim-Fast bar in the morning and a light lunch such as a salad. For dinner he eats whatever his wife cooks. “She eats healthy right along with me.” For snacks he eats fruits or vegetables. And he drinks lots of water. “I hate water,” he says. “But I drink water now, and cranberry juice, and I haven’t had a bladder infection in I don’t know how long.” He also has more energy and doesn’t feel bloated anymore.
Braddy cautions against getting carried away with Slim-Fast products. “You can’t just eat the bars,” he says. “They stress the importance of lots of fruits and vegetables. And if I do that, I don’t have any problem with my bowel routine. I get that roughage I need.” He also exercises, which he says is as important as his diet.
Besides eating more vegetables and drinking lots of water, Jyni Holland, a registered dietician with The Rusk Institute, gives the following bowel routine advice: “Insoluble fiber will act like Drano in the colon,” she says. “You can find insoluble fiber in whole wheats, brown rice, broccoli and many vegetables.” Holland’s “triple whammy” for combating constipation is brown rice, whole wheats and, of course, prune juice. If this doesn’t work, then you may have to find a stool softener or see your doctor for a prescription.
Surprisingly, a great source of dietary fiber that will not help constipation is oatmeal. “Oatmeal is soluble, which helps lower cholesterol but doesn’t do much for constipation,” says Holland.
Getting enough water can help with more than just staying regular. “Well into my SCI career–15 years–I still had not figured out the drinking water aspect of staying healthy, and every week or so I would have a day or two where I felt really tired and achy,” says Bob Vogel, a T10 complete para and frequent NM contributor. At the time he was researching an article on UTIs and a doctor he interviewed told him that often what looks like a UTI is actually dehydration.
“The light bulb went on, and now whenever I start to feel a little run down I slam a couple glasses of water and more often than not, I feel better within a few hours,” says Vogel, who lives in Auburn, Calif. “If I get even a little dehydrated, I feel like I’m getting a UTI and generally feel like crap.” He keeps a bottle of water stashed in his car and by his desk. Vogel keeps his energy steady by eating snacks throughout the day. “I wake up and start working or playing, and if I forget to snack I will have a big fatigue-induced crash around 3 p.m.” He can’t eat big meals because they make him sleepy. By “snacks” he means a small amount of food such as instant soup or some fruit. “When I remember to grab a banana every couple of hours and perhaps take an early afternoon lunch, I don’t have the desperate need to fall asleep or pass out around 3 p.m., which is very important now that I have a 2-year-old daughter,” he says.
Vogel has stumbled upon an eating formula backed by many nutritionists. “Smaller meals more often gives you better energy maintenance,” says Suzanne Archer, a registered dietician at Kessler Institute for Rehabilitation. “If you eat a large meal you may find yourself full and kind of tired, then you wait six or seven hours for your next meal. … It’s not more food, it’s just more often. It’s taking your three larger meals and splitting them up into smaller meals.”
Another pleasant side effect of the five-a-day plan is it boosts your metabolism, which in turn helps weight loss.
Regular readers of New Mobility by now know the basics of the post-polio protein diet. In his August 2001 article, “The Post-Polio Institute Protein Power ‘Diet'” (available at www.newmobility .com), Richard Bruno writes that the institute does not recommend all protein all the time, or that people with PPS should cut carbs or any other food group out of their diets. Instead, the institute recommends that people with PPS work in about 16 grams of protein at breakfast, which is about a quarter of the protein each person is supposed to take in each day.
“When we ask our post-polio patients to eat protein every day at breakfast and have small, non-carbohydrate snacks throughout the day, they report an almost immediate reduction in nearly all symptoms of PPS, especially fatigue,” writes Bruno. “But the protein power diet is neither a fad nor a miracle; it’s just common sense.”
And it’s common sense for many people with disabilities to eat more protein, not just those with PPS. “There needs to be some protein in each meal. It plays a role in regulating our blood sugar intake–our energy–during the day,” says Gary Karp, a T12 para and author of Life on Wheels. “If we have a high sugared meal–high carb, no protein–we’ll get a big energy boost and then we’ll drop through the floor … falling asleep, nodding out.” Karp says wheelchair users, including those who use power chairs, regularly use muscles differently than they’re supposed to be used, and this drains energy.
“I eat some rice, a little bit of pasta, a little bit of bread, and I eat protein in each meal,” says Karp. He eats brown rice and whole grains. “Look up the actual food values of these foods, compare white rice with brown rice or some whole grain bread with white bread. Processed rice or flour has a lot of the nutrition taken out.”
Karp is extremely diet conscious, but says he wasn’t always. “I had pressure sore problems for the first couple of years after my 1973 accident and I think it had to do with diet,” he says. “I grew up on meat and potatoes. And I ate a lot of sugar. My father owned a drugstore so I just loaded up on that stuff.” He says he had a major dietary conversion when he was 21, and when he discovered healthier foods, “Everything changed, and pressure sores have been much better.”
Good nutrition is crucial to healing pressure sores, especially consuming enough protein. High protein foods are all the foods that come from animals, like milk, cheese and yogurt. “Chicken, fish, pork, red meat and eggs are a good source,” says Archer. “Those are high biological proteins, your body will absorb those best. What’s nice about the dairy is you also get the calcium, which is good for the bones.”
Rehabilitation Institute of Chicago dietician Sarah Gallanis agrees with Archer that protein is critical to healing pressure sores. “When you have an infection, your body is in a hypermetabolic state where it breaks down a lot of protein, and in the process you can deplete your protein stores,” she says. “It could be mild depletion if you have a mild infection, but if you have a severe infection you have to increase your intake that much more.”
In addition to increasing your protein intake when you have a pressure sore, you should also increase your overall calorie intake. “If you’re not eating enough food overall, the wounds won’t heal, or healing won’t be promoted,” says Archer. “So increase your calories and take supplements fortified with vitamins and minerals. I recommend a multivitamin once a day, vitamin C at 500 milligrams twice a day and zinc at 220 milligrams once a day.”
The Scoop on Coffee
Vogel links his spasms to America’s favorite drink. “Caffeine really kicks off my leg spasms, but I’m a caffeine addict so I drink a bunch of coffee in the morning and quit by noon,” he says. “Too much coffee–more than three cups a day–is really bad for your bones, makes them even more weak than para or quad bones are already, so I try and keep it down to that.”
But many people who get fatigued–especially people with MS–swear by the stimulant properties of caffeine, regardless of the possible side effects. There aren’t a lot of effective fatigue medicines, and fatigue is a major symptom of MS, so caffeine seems to be an appealing and cheap quick fix.
“Diet Coke helps with my fatigue,” says Kathryn Spira, who has secondary progressive MS. “I’m not a coffee drinker.” And for the worst of her spasms, Spira, 43, uses another drink. “This may sound odd, but for muscle spasms that aren’t responding properly to prescribed muscle relaxants, especially during my menstrual cycle, I find that a shot of vodka with the flavoring of your choice really helps the muscles relax,” says the upstate New York humor columnist. “I don’t do this often, but it worked when I tried it.” She suggests such flavorings as cranberry juice or V8.
“As for combating fatigue, caffeine does increase alertness,” says Carrie Wheeler, a registered dietician with Craig Hospital. “But it can decrease perception to fatigue. People tend to use caffeine often, then have difficulties falling asleep, then wake up fatigued again. And there you have a cycle of fatigue and the use of stimulants.”
Caffeine increases cell nerve activity, including neuron firing in the brain. It also increases blood flow to the heart and kidneys, and thus can increase blood pressure. It’s thought to help breathing by relaxing air passages, but it also can bind with such necessary minerals as iron and calcium–which is not so good. “Not to mention it can also bind to medications, prohibiting their absorption,” says Wheeler.
“Soda is a big deal,” says Karp. “It’s sugar and caffeine, which depletes energy and is constipating. People drink Cokes all day and they’re binding themselves up and they’re making their blood sugars freak. I don’t preach being a purist about this stuff, it’s about moderation and what works for you.”
Karp is skeptical about caffeine’s possible fatigue-fighting properties. “One theory is anything that amps you up–basically any drug, caffeine, speed, whatever–the body has to pay it back somewhere. Using caffeine to get your energy back up puts you on a cycle.” Yet he confesses that he’s addicted to cafe mocha, but doesn’t drink them every day. If I drink too many, I gain weight and get lightheaded.”
The Final Skinny
In summary, Uhl recommends eating a well-balanced diet that includes all the food groups. “This can help prevent weight issues, skin breakdown and other complications in the future. Diets with generous amounts of fruits, vegetables and whole grains will provide fiber, control calories and supply ample vitamins and minerals to promote health. This along with high quality, low fat protein sources is beneficial to overall good health.”
And remember, “no one ever said you have to eat three square meals a day,” says Holland. Try the five-a-day plan, “especially if you have a hard time taking in adequate calories. You don’t get hungry, and it’s when you get too hungry that you overeat.”
“The goal of your eating plan is to make sure you get those good nutrients in and stay hydrated,” says Wheeler. “All of this will increase your quality of life. And I don’t think everybody eats perfectly all the time–it’s what you do on a regular basis that counts. Yeah, you’re going to go out for pizza and have holidays. But after the celebration make sure you get right back on your eating plan.”
And find a way to exercise regularly.
Depending on your medical history, you may want to work one-on-one with your doctor or a dietician to create an individualized diet, advises Archer. But overall, she says, “There is no specific diet for wheelchair users. Healthy eating is something you have to do all the time, not just because something happened to you. Nutrition is preventative, not treatment.”
Does Cranberry Juice Really Reduce UTIs?
By Tim Gilmer
Immediately following my spinal cord injury in 1965, nurses told me to drink lots of juices. So I tanked up on my favorites–orange juice and grapefruit juice. When they moved me to a rehab hospital two weeks later, the hospital urologist stripped me of my favorites. Water, cranberry juice and apple juice were the only approved liquids.
I soon discovered through trial and error that cranberry juice seemed to lessen the incidence of UTIs but can also cause heartburn. So I changed to cranapple, got sick of it after 30 years and finally switched to cranberry capsules. I also found that Coca-Cola and other carbonated, sugary soft drinks are a no-no (studies have since corroborated this). Perhaps the most important discovery I made is that the practice of taking antibiotics as a preventative to UTIs can and should be avoided if at all possible. This can be done if clean technique is followed closely–rinsing leg bags, catheters and tubing with dilute Lysol at night and washing hands before cathing. It’s also important to drink water throughout the day, take vitamin C to acidify urine, and of course drink cranberry juice or take cranberry capsules. Many NM readers follow this regime, but is there any scientific basis for using cranberry juice or cranberry capsules as a preventative to UTIs?
For an in-depth answer, read Dr. Wise Young’s summary of pertinent clinical trials– summary of pertinent clinical trials. Here’s the short version: Results are mixed, but the most thorough studies indicate that cranberry juice does reduce concentrations of bacteria in urine. Blueberry juice may also be effective, but studies are not as conclusive. It used to be thought that ascorbic acid (vitamin C) was what made cranberries effective in controlling bacteria. While it makes sense to maintain an acid pH in the bladder (and to avoid foods and juices which create an alkaline condition, especially just prior to going to bed at night if water is not used to flush the bladder), recent studies indicate that cranberry juice achieves its antibacterial effect by preventing bacteria from sticking to the walls of the bladder. As for using cranberry capsules, more trials are needed to establish their efficacy. In the meantime, if using capsules, moderation is the rule–don’t exceed the recommended dosage on the label.