Tips and Techniques for Polio Survivors by Dr. Richard L. Bruno
Recently I had a fever with muscle and chest pain. The only abnormal blood tests showed high C-reactive protein and high creatine kinase. My blood pressure and cholesterol are normal, I have never smoked, and I'm thin. Because of the chest pain I had an angiogram, which was normal. Could high CRP and high CK be related to PPS?
C-reactive protein is a blood marker for inflammation somewhere in the body. High CRP can be seen with type 2 diabetes, autoimmune diseases and cancers.Could inflammation somewhere in your body, as indicated by your elevated CRP, be related to PPS? Fifty consecutive patients evaluated at The Post-Polio Institute had CRP measured. The patients were on average 59 years old and 55% were women. Thirteen percent had an elevated CRP, 66% of whom were men. CRP was on average nearly three times the normal value. However, there was no significant difference between those with high and normal CRP on self-ratings of daily fatigue, difficulty with self-care or ability to perform activities inside or outside of the home. So, there is no evidence that elevated CRP or inflammation is related to PPS, either to post-polio fatigue or difficulty in functioning.
Recent studies have found that elevated CRP is related to having a heart attack or stroke. The theory is that a bacterial or viral infection (although definitely not a poliovirus infection) somehow inflames arteries and causes them to clog. Our 1985 National Survey found no more heart disease or high blood pressure in polio survivors than in the general population. But two studies found that 5% more male post-polio patients had abnormally elevated cholesterol as compared to the general population. In one of the studies, only 33% of those with high cholesterol had been given a cholesterol screening test by their doctor and not even 25% were on cholesterol-lowering medications, like the statin drugs such as Lipitor, Pravachol and Zocor. This is not good, since reducing cholesterol reduces heart attack risk. What’s more, research has shown that taking statins to reduce cholesterol can also lower CRP and may thereby increase survival even after having a first heart attack.
Statin drugs provide a connection between CRP and CK--in polio survivors. CK is an enzyme released when muscle is damaged. One half of one percent of anyone taking a statin develops muscle breakdown, which causes muscle
pain (especially in the calves), muscle weakness and an increase in CK. Even without muscle breakdown or an elevated CK, some polio survivors report muscle pain or weakness when taking a statin, usually one of the older statins like Lipitor. And polio survivors can have an elevated CK without taking a statin. Two studies found that 40% of polio survivors had abnormally elevated CK, with men having significantly higher CK than did women. In one study, CK increased with the number of steps polio survivors walked in a day. In our fifty Post-Polio Institute patients, 21% had abnormally elevated CK levels (on average about 33% higher than normal) with men also having higher CK than did women. But, as with CRP, there was no significant difference between those with high and normal CK on self-ratings
of daily fatigue, difficulty with self-care or the ability to perform activities inside or outside of the home. However, an elevated CK may mean that polio survivors are making their muscles work too hard and are causing them to break down.
So, neither CRP nor CK is related to fatigue or loss of functional abilities in polio survivors. However, all polio survivors need to have their cholesterol and CRP measured to assess heart disease risk. And since an elevated CK indicates muscle breakdown, either from taking a statin or from muscle overuse, polio survivors should have CK measured before taking a statin. If you are worried about possible muscle weakness or breakdown with the statins, or the newer cholesterol-lowering drugs like Zetia and Vytorin, ask your doctor about using older medications like slow-acting niacin or bile acid sequestrants. Besides medication, polio survivors need to eat high fiber foods, reduce saturated fat, treat high blood pressure and stop smoking to keep their tickers ticking.
MONDAY, Oct. 17, 2016 (HealthDay News) -- Sleep apnea may boost the odds of developing two serious health complications following surgery.
So, finding out if you have the sleep disorder beforehand -- and seeking treatment -- could boost your odds for good recovery from surgery, researchers say.
The two post-op complications are blood clots in the veins and an irregular heartbeat called atrial fibrillation, according to two new studies.
These problems occurred more often among surgical patients who had not yet been diagnosed -- and therefore weren't treated -- with sleep apnea.
Obstructive sleep apnea is characterized by repeated breathing disruptions during sleep. Symptoms include excessive daytime sleepiness, restless sleep and loud snoring -- often with periods of silence followed by gasps.
More than half of surgery patients who have sleep apnea don't know it, the authors of one new study said. Identifying these patients ahead of time might spare them serious post-op complications, the findings suggest.
Dr. Gregg Fonarow, a professor of cardiology at the University of California, Los Angeles, said the relationship between diagnosed obstructive sleep apnea and post-operative complications is well-documented, with the new research "confirming findings from prior studies."
Sleep apnea appears to expose the heart to "mechanical stress," while also leading to vascular inflammation and an increased risk for blood clots, he explained.
"These physiologic changes could place patients undergoing (open-heart) surgery at higher risk for complications," said Fonarow, who wasn't involved in the study.
Still, this study doesn't establish a direct cause-and-effect relationship between untreated sleep apnea and atrial fibrillation or venous blood clots. And Fonarow isn't sure that treating the sleep disorder would actually prevent these complications.
Both studies are scheduled for presentation Oct. 26 in Los Angeles, at the annual meeting of the American College of Chest Physicians (CHEST). Until the findings are peer-reviewed for publication in a medical journal, they should be considered preliminary.
One study looked at more than 200 patients having open-heart bypass surgery between 2013 and 2015 to see how a high risk for sleep apnea affected the likelihood of developing atrial fibrillation afterward.
Those at high risk of sleep apnea met three of these criteria: being older than 65; snorers; very obese; or having high blood pressure.
Almost 20 percent were considered at high risk for sleep apnea. Two-thirds were at low risk, and nearly 15 percent had already been diagnosed with the sleep disorder, according to the study.
Study senior author Dr. Samir Patel said his team found that high-risk-but-undiagnosed sleep apnea patients do have "more chances of developing [atrial fibrillation] compared to a person who already has sleep apnea, or a person who has a low risk of developing [sleep apnea]."
And when these undiagnosed/untreated sleep apnea patients developed atrial fibrillation after heart surgery, their chances for extended hospitalization and/or death increased as well, added Patel. He's an internal medicine physician with Western Reserve Health Education in Youngstown, Ohio.
Atrial fibrillation occurred among almost 70 percent of high-risk, untreated sleep apnea patients, Patel said. This compared with only about 41 percent of both the low-risk and diagnosed sleep apnea patients.
Patel said patients preparing for open-heart surgery should be tested for sleep apnea in advance, particularly if they seem to be at high risk and/or have telltale symptoms, such as excessive snoring.
The most common treatment for obstructive sleep apnea is called continuous positive airway pressure, or CPAP. CPAP requires wearing a face or nose mask during sleep. The mask is connected to a pump that provides continual airflow in order to keep the airways open.
The second study found greater risk for other post-surgical complications among 40 patients at high risk for the sleep disorder compared to 50 already being treated for sleep apnea.
Researchers led by Dr. Mohammed Aljasmi of the Henry Ford Hospital in Detroit looked at the post-surgery risk for developing breathing complications, heart problems and medical issues that require hospitalization in an intensive care unit. Surgeries were described as elective, rather than exclusively heart-related.
Those undiagnosed but deemed at high risk of sleep apnea faced significantly greater odds for developing venous thromboembolism, a potentially life-threatening blood clot in the vein, they found.
The findings suggest high-risk sleep apnea patients will fare better after surgery if they first get a sleep apnea diagnosis and begin treatment, the researchers said.
Fonarow, however, isn't convinced that early diagnosis and treatment of sleep apnea would actually lower post-op risks.
He pointed to a large, randomized clinical trial of more than 2,700 patients that found CPAP provided no benefit in lowering cardiovascular events or heart-rhythm disorders in patients with established heart disease.
The U.S. National Institute of Neurological Disorders and Stroke has more about sleep apnea.
SOURCES: Samir Patel, M.D., MPH, internal medicine physician, Western Reserve Health Education, affiliated with Northeast Ohio Medical University, Youngstown, Ohio; Gregg Fonarow, M.D., professor, cardiology, and co-director, Preventative Cardiology Program, University of California, Los Angeles; CHEST meeting, Los Angeles, Oct. 22-26, 2016
Harvard Healthcast DocTalk: Leaving the doctor without an antibiotic
The bacteria that cause disease are remarkably resilient and can develop ways to evade the drugs meant to kill or weaken them. This phenomenon is called antibiotic resistance and it is due largely to the growing, and often careless, use of antibiotics.
Today, bacterial infections in the United States and throughout the world are becoming resistant to the drugs we rely on to treat them. Antibiotic resistance has been called one of the world's most pressing public health problems. The smart use of antibiotics is the key to controlling the spread of antibiotic resistant bacteria and the rise of superbugs—bacteria that cause infections that are difficult if not impossible to treat.
In this podcast Dr. John Ross, assistant professor at Harvard Medical School, talks about how antibiotic resistance occurs, the dangers of superbugs, and what you can do to protect yourself. Dr. Ross is board certified in internal medicine and infectious diseases and is a practicing physician at Harvard affiliated Brigham and Women's Hospital.
Forgoing drugs that slow bone loss to avoid rare side effects can be the wrong decision for your hips and spine.
A front-page article in the June 1, 2016, edition of The New York Times carried this headline: "Fearing drugs' rare side effects, millions take their chances with osteoporosis." The article described a situation all too familiar to doctors. Women are declining prescriptions of bisphosphonates—drugs that slow the rate at which the body breaks down bone—or discontinuing the medications far earlier than recommended. In fact, according to a 2015 report in the Journal of Bone and Mineral Research, the rate of bisphosphonate use fell by half between 2008 and 2012. That article documented a wave of media coverage of scientific studies that reported two rare side effects—osteonecrosis (bone death) of the jaw and atypical fractures near the top of the femur (thigh-bone)—and suggested that the reports had kindled fears that had led women to abandon bisphosphonates.
"The perception of risk is so much greater than the actual risk," says Dr. Meryl LeBoff, director of the skeletal health and osteoporosis center at Harvard-affiliated Brigham and Women's Hospital. Compared with many other common diseases, we are fortunate that we have good therapies to reduce the risk of osteoporotic fractures by 70% at the spine and 40 to 50% at the hip. She points to statistics referenced in the New York Times article: for every 100,000 women taking a bisphosphonate, fewer than three will have osteonecrosis of the jaw and one will have an atypical femur fracture, but 2,000 will have avoided an osteoporotic fracture.
Learn your personal risk of fractures
While statistics like the above are good for making public health assessments, they provide only a rough idea of your personal risk. If you have osteoporosis, taking stock of your individual risk factors—for hip and spine fracture as well as for jaw necrosis—can help you make a more informed decision.
The most direct way to determine your risk of fracture is by having your bone density measured at the hip and spine with dual energy x-ray absorptiometry (DEXA). A DEXA scan is recommended for women ages 65 or older and for women ages 50 or older who have broken a bone recently. (At least 50% of women who have a hip fracture have already broken another bone.) Your doctor may also recommend a DEXA scan if you smoke, consume an average of three or more alcoholic drinks a day, have a low body mass index (BMI), or take a corticosteroid medication—all of which may contribute to bone loss. The result, expressed as a number called a T-score, compares your bone density with that of a healthy younger woman. A T-score of –2.5 or lower—the definition of osteoporosis—is an indication you may need a prescription for a medication to slow or arrest bone loss.
If your DEXA scan indicates you have osteopenia—a T-score between -1.0 and -2.5—your clinician may use the FRAX calculator. The FRAX score incorporates information about your hip bone density and other risk factors to estimate your 10-year fracture risk. In general, if your 10-year fracture risk is at least 3% for hip fractures or at least 20% for other major osteoporotic fractures, you should consider taking medication to prevent bone loss or increase bone density to avert future fractures.
What's your risk of complications?
In response to concern about jaw necrosis, 14 professional organizations of dentists, physicians, and bone scientists formed the International Task Force on Osteonecrosis of the Jaw. The task force reviewed all the research on that condition published from 2003 to 2014. They determined that each year, .001% to .01% of people taking oral bisphosphonates like alendronate (Fosamax), ibandronate (Boniva), or risedronate (Actonel) develop jaw necrosis—a number only slightly higher than among people not taking those medications.
The risk was much higher—15%—for cancer patients whose treatment included intravenous infusions of zoledronate (Zometa), a bisphosphonate, or injections of denosumab (Prolia), a monoclonal antibody that also inhibits bone resorption. The task force also identified other risk factors for jaw necrosis, including poor dental hygiene, wearing ill-fitting dentures, and undergoing oral surgery. Certain conditions, including diabetes and inflammatory diseases like rheumatoid arthritis, and some medications, particularly corticosteroids and drugs that inhibit blood vessel growth, also increase the risk.
Atypical femoral fractures are rare—about three to 50 in 100,000 people taking bisphosphonates annually. Researchers are searching for factors that place some women at increased risk. In a review of the studies through 2014, the International Task Force on Atypical Femoral Fractures determined that people who had such fractures had taken bisphosphonates an average of seven years. Being of Asian descent and taking corticosteroids were also linked to a higher risk in some studies.
Points to ponder
If you have low bone density and are debating whether to take a bisphosphonate, you may consider the following:
Osteoporotic fractures can be debilitating. If you accumulate several vertebral fractures, you may lose height, develop a hump, and have less room for your abdominal organs. It will become more difficult to breathe, and you may develop digestive problems and incontinence. A hip fracture can necessitate months of rehabilitation therapy and can render you unable to walk unassisted, even after the bone has mended. Hip fracture is also linked with an increased likelihood of being admitted to a nursing home and an elevated risk of premature death.
Medications can markedly reduce fracture risk. For example, taking zoledronate or denosumab can decrease the risk of hip fractures by 40% and spine fractures by about 70%. For women with low bone density, alendronate is associated with a reduction of about 50% for hip and spine fractures and 23% for wrist, ankle, and other bone fractures. (See "Effectiveness of common osteoporosis medications.")
Effectiveness of common osteoporosis medications
Reduced risk of fractures?
Annual intravenous infusion
Source: Adapted from Adler RA et al. "Managing osteoporosis patients after long-term bisphosphonate treatment." Journal of Bone and Mineral Research (Jan. 2016), Vol. 31, No. 1, pp. 16–35.
Risk of jaw necrosis and atypical thigh fracture is lower when use of bisphosphonates is limited. For most women, bisphosphonate treatment ends after five years of oral therapy or after three annual intra-venous infusions of zolendronate. However, the drugs' effects remain for several years after therapy is discontinued.
Your risk of developing jaw necrosis is negligible if you are healthy. The American Dental Association has decided against recommending that dental patients discontinue bisphosphonate therapy before having an extraction or dental implant.
You can further reduce your risk through vigilant dental care. Brush twice a day, floss daily, and have regular dental cleanings. To further minimize risk, choose the least invasive dental procedures possible—a root canal instead of an extraction, or a bridge instead of an implant.
The optimal duration of treatment varies among individuals. Talk to your doctor about how long your osteoporosis therapy should be continued.
The take-away message
Osteoporosis is a common disease and fragility fractures increase dramatically with age. "The occurrence of a fracture can be devastating, and women can benefit from the effective therapies that markedly reduce their risk of osteoporotic fractures. The current situation— in which women who have had fragility fractures or are at high risk of fractures are discontinuing therapy or are not even being treated—is considered a crisis," Dr. LeBoff says.
The 'conscious uncoupling' of Gwyneth Paltrow and Chris Martin, the Apple watch, the ice-bucket challenge, John Travolta's inability to say a name correctly - these are all events that occurred two years ago - in 2014.
If you think back, you may also remember that a mysterious illness made headlines that summer - a previously unknown disease that looked a lot like polio left children paralyzed. And, as the case numbers grew (there were 120 cases between August and December that year) and people became more frightened - scientists grew more baffled.
Now, we know a bit more about what happened in 2014 - although still not much. The illness that was making headlines is called acute flaccid myelitis (AFM.) The US Centers for Disease Control and Prevention (CDC) has been actively tracking it since August of 2014 and has reported an increase in the number of cases seen thus far this year.
The terrifying aspects of AFM are that the cause is unknown, anyone can get it, and it affects the nervous system. Even worse, most of the cases are in children. The only silver lining is that it is rare. In the first eight months of this year, 50 cases have been confirmed in 24 states in the US.
The CDC reports that multiple different viruses are linked to the cause of AFM including, but not limited to enteroviruses, West Nile virus (WNV) and other viruses in the same family as WNV (Japanese encephalitis virus and Saint Louis encephalitis virus,) and adenoviruses.
AFM has a list of terrifying signs associated with it. The hallmark of the disease is how quickly the effects take hold with a sudden onset of weakness of limbs, loss of muscle tone and reflexes. Some people also have facial droop/weakness, difficulty moving the eyes, drooping eyelids, or difficulty with swallowing or slurred speech.
The degree to which someone is affected is extremely variable. A child may be rendered usable to breathe on their own, or, on the other spectrum, left with muscle loss in an arm or leg.
The outbreak of AFM in 2014 was thought to be linked to an uptick in infections of enterovirus D68 (EV-D68) - a close relative of poliovirus. However, it could not be proven because every person with AFM did not have evidence of an EV-D68 infection, meaning that no virus or even antibodies (immune proteins made to a virus that is infecting the body) were present in their system. In addition, there were no cases of EV-D68 in 2015 (and 21 cases of AFM) and only a few cases of EV-D68 have been reported this year. Since June of this year, there has been a significant increase in EV-D68 cases in the Netherlands making that an area to watch for AFM cases.
The author contemplates options for controlling his blood sugar.
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.
Kim Harrison is winning the battle against diabetes with exercise and portion control.
“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
As a C5 quad, Evan Sleight finds it hard to lose weight, but he’s making progress with a low-carb diet.
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!”
McKenzie Anderson, before and after she came down with a mysterious disease called acute flaccid myelitis, which is a lot like polio. (Family photos)
Before dinner on July 29, 3-year-old Carter Roberts of Chesterfield, Va., seemed perfectly healthy. That evening, he vomited. When he woke up the next morning with a slight fever of 99 degrees, his mother, Robin Roberts, figured that he was coming down with a cold. The next morning, she found him collapsed on his bedroom floor.
“Mommy,” she recalls him saying. “Help me, help me.”
Carter could barely stand when she picked him up, and his neck was arched backward. “What was most alarming,” she said, “is he had no control over his right arm whatsoever.”
In the hospital, Carter lost control of his right arm, then over his legs and other muscles within a few days. He now can only wiggle a toe and move the left side of his face. He has been diagnosed with a mysterious, polio-like illness called acute flaccid myelitis, a condition that seems to be surging this year.
Through July, 32 new cases of AFM have been confirmed across the United States this year by the Centers for Disease Control and Prevention, a sharp rise compared with last year, when just seven cases had been confirmed by that month. The numbers have risen steadily since April. In past years, most cases have occurred between August and December, with a peak in October.
Source: Centers for Disease Control and Prevention
Among the many unanswered questions about the condition are what causes it, how best to treat it and how long the paralysis lasts. Although most cases occur in children, AFM occasionally affects adults.
The CDC official who leads the surveillance efforts said that confirmed numbers for August will not be available until the end of this month, but the number of reports she is receiving from doctors around the country continues to rise.
“CDC is looking at these trends very carefully,” Manisha Patel said. “We have sent out several health alerts to states to let them know we are seeing an increase in reporting and to encourage them to communicate with doctors to report these cases in a timely fashion.” The CDC began tracking AFM in 2014, when 121 cases were confirmed. That year, the CDC counted only children affected by the disease. Their average age was 7. Most had a fever or a respiratory illness a few days before developing paralysis. Many had to be placed on respirators. Although 85 percent of the children recovered partially, only three of them recovered fully.
Five-year-old Braden Scott sits up unassisted at a rehab facility two months after he was struck with acute flaccid myelitis. It's a major improvement for someone with this polio-like illness. (Facebook/Team Braden Luke)
Health officials and physicians around the country said they are concerned that the rising number of cases through July could foretell a repeat of 2014.
“You hate to be an alarmist, but there’s reason to have some concern,” said Avindra Nath, chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke. “What we don't know is where are these cases. Are they clustered? Do they all look alike? Getting more information on these cases would be helpful.”
Beyond saying that confirmed cases have been reported in 17 states through July, Patel declined to reveal which states have been involved. But conversations and emails with physicians around the country indicate that at least four cases have occurred in California and at least three in Massachusetts, and that others have been seen in Florida, Texas, Pennsylvania and New York, as well as Virginia.
“We are definitely hearing of cases from our colleagues across the country,” said Teri Schreiner, a neurologist at the University of Colorado and Children's Hospital Colorado. “It’s a trend that’s worrisome … what I'm hearing from others seems to be coming at a tempo similar to what happened in 2014.”
Jean-Baptiste Le Pichon of Children’s Mercy Hospital in Kansas City, Mo., said that doctors on a U.S. email list for pediatric neurologists reported five new cases of AFM in just the past few days. “There is definitely an explosion of cases,” Le Pichon said.
No treatment other than physical therapy has yet been shown to markedly improve outcomes, although some doctors have reported that treatment with intravenous immunoglobulin (IVIG), used to treat some other viral infectious diseases afflicting the nervous system, might help. It’s also been suggested that Prozac could prove beneficial. The degree of paralysis in the first month has generally improved only slightly over the course of a year.
“After about a year or so, what you’ve got is what you’ve got,” said Max Wiznitzer, a pediatric neurologist at Case Western Reverse University in Cleveland.
Most perplexing is what causes the disease. The 2014 outbreak of AFM occurred at the same time as a far larger outbreak of enterovirus D68 across the United States. The vast majority of patients infected with the virus developed only a respiratory illness. Some physicians were convinced that EV-D68 was the cause, not only because both outbreaks occurred at the same time but also because of a study that identified a particular strain of EV-D68 in the airways of children with AFM. But officials at the CDC and some doctors, including Wiznitzer, insist that the cause remains unproved.
So far this year, no similarly widespread outbreak of EV-D68 respiratory infections has been reported, although cases of it and other enteroviruses have been seen in some areas.
On Friday, Le Pichon, in Kansas City, said, “I just got confirmation that we have an epidemic of enterovirus breaking out here and at least a few cases [of enterovirus] have typed positive for EV-D68.”
Carol Glaser, a pediatric infectious-disease specialist at Kaiser Permanente in Oakland, Calif., said: “If the theory is right that it’s caused by EV-D68, which some of us believe more than others, this would be the time of year we start seeing it. It’s an enterovirus, and they tend to peak in late summer and early fall.”
Because the CDC’s surveillance of AFM is less than two years old, it remains unclear if some of this year’s apparent rise in confirmed cases is due simply to more doctors sending in case reports, Patel said. And Wiznitzer emphasized that with just 32 confirmed cases across the United States so far, AFM remains extremely rare
Glaser, however, said she is convinced that the condition is new. She worked at the California Department of Public Health when, in 2012, some of the first reports of AFM anywhere in the country came in from physicians there.
“I was there for 15 years and talked to neurologists every single day,” she said. “It wasn’t until the fall of 2012 when the first physician called in and wanted a test for polio on one of his patients. One of my colleagues in the office chuckled and said to me, ‘We don't have polio in the United States.’ But in the next two weeks, I got two very similar phone calls. We had never had a report like that. I do think there was something new going on.Fortunately, it’s still rare.”If EV-D68 does somehow cause AFM, studying the virus may lead to prevention or treatment. One glimmer of good news came from Kenneth Tyler, chair of neurology at the University of Colorado School of Medicine. He and his colleagues have been conducting experiments to infect mice with EV-D68 and have them develop loss of muscle control like that seen in AFM. He says he has submitted a paper to a peer-reviewed medical journal describing his success in doing so.
The goal, he said, is to use mice to study how EV-D68 causes harm to the spinal cord and muscles, and to test potential therapies, such as IVIG.
“It looks like we’re seeing protection with IVIG in the mouse model,” he said.
Robin Roberts said she wishes more was known about the condition that has harmed her son. “In this day and age to not have information about something like this is very frustrating. There needs to be more done about it, and for more parents and doctors to know about it,” she said.
Angie Andersen said that her daughter McKenzie was sent home from the hospital twice in the first two weeks of her illness because doctors did not understand the severity of what was happening. Finally her pediatrician told Andersen to bring McKenzie to another hospital.
McKenzie was 6 years old when she developed sniffles in December 2014. “Within 12 days,” Andersen said, “she was paralyzed from the neck down, on a ventilator to breathe for her. She was left with her left hand and her feet and toes that move.”
“You know you could understand the bad that comes from a car wreck, or if she got cancer,” Andersen said. “How do you ever wrap your brain around the fact that she got a cold, and now she’s a quadriplegic on a ventilator? It’s a nightmare you never wake up from.”
Still, she said, McKenzie can now speak and even sing softly despite having a tracheotomy. “She has a lot of spunk, and that is helping her through,” Andersen said.
Correction: This article originally misnamed Robin Roberts as Robin Carter. The case files: Medical mysteries
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