Disability can be a bully. And it's so in-your-face with bladder infections and bowel accidents and pressure sores that you may not be aware of subtler damage that paralysis visits on your lungs, heart, metabolism and other underlying structures. Think you know it all? Recent research is creating options in treatment and prevention that may offer new ways to keep the bully at bay.
Note: The basic frame for this article comes from "Maintaining Health Long-Term with Spinal Cord Injury", written by Craig Hospital's medical director, Dr. Daniel Lammertse, and published in the Winter 2001 Topics in Spinal Cord Injury Rehabilitation. Most of the 10 ways to stay healthy also apply to MSers, with exceptions and additions noted below. Polio survivors: You'll also find helpful info here, but for a polio-specific Top-10 list, see "The 10 Commandments of PPS" from June 1999.
John Fields loves his Magic Bullet (see "Love Your Bowels" below).
Respiratory illness is the number one cause of death among people with SCI and advanced progressive MS, and the risk increases with age. Doctors' advice? Quit smoking, get flu shots, get pneumonia vaccinations, stretch your chest and exercise. MSers should check with their physicians, since sometimes flu shots can cause fever and exercise can cause overheating. Usually the shots and exercising in cool water are still recommended.
Although respiratory issues are significant for all sedentary people, you are more susceptible to infections and breathing obstruction if you can't cough on your own to clear your lungs. Traditionally, quads have had aides help them cough, and service dogs have even been trained to help with this task. Functional electrical stimulation has also been used successfully, but it requires extensive preparation and isn't well tolerated by some users.
New research on functional magnetic stimulation supports an interesting alternative that's not invasive and even helps condition muscles to work more effectively on their own. Dr. Vernon Lin and colleagues reported in February that magnetic stimulators applied to the thoracic spine improved voluntary muscle strength in eight men with spinal cord injury.
"This is very significant," says Lin, chief of SCI services at the Long Beach VA in California. "We have demonstrated efficacy not only to produce the cough" when FMS is applied. "We have also found that by doing the conditioning you can improve their baseline cough capabilities that they do voluntarily without the magnetic stimulator being there. So there is some lingering effect of FMS, but they need to continue to use this just like exercise to continue to build up the muscles."
Interested? Have your doctor call Lin at 562/494-2611.
Listen to Your Heart
The good news is that people with SCI are living longer. The bad news is that chances of getting diseases associated with aging are increasing. Heart disease is the number one killer in America, so while it may sound hopeful that it's number two for SCI survivors, it's still a huge problem. "You shouldn't say, 'Gosh, we dodged a bullet and we don't have to worry about heart disease anymore,'" says Dr. Lammertse. "It's still a very prominent cause of death," accounting for about 20 percent of deaths among people with SCI.
The general public has a 1-in-20 lifetime chance of getting the colon cancer, but people with disabilities don't receive access to cancer screening that's routinely provided to the nondisabled population.
- Dr. Daniel Lammertse
A study of 545 people who have survived at least 20 years with SCI--reported in the June 2001 Spinal Cord--showed that the rates of cardiovascular disease increased with age in all neurological groups. When broken down by type of disability, researchers found that people with quadriplegia and complete injuries were more at risk than those with paraplegia or incomplete injuries. Complete quads, for example, showed a 3.5 percent risk, while incomplete paras showed a 2.1 percent risk.
One problem is that people with SCI tend to have low HDL, the "good" cholesterol that protects against heart disease. This relates to degree of disability--quads and people with complete injuries have even lower HDL counts. Exercise can help raise HDL levels, but studies show that even Paralympic athletes can't achieve levels common in nondisabled people. That doesn't mean blow off exercise--it means look at other factors, too. Moderate alcohol intake--no more than one daily drink for women and two for men--can have a positive effect on HDL, but it can also cause weight gain and may interact with your meds, so check with your doctor before stocking up on the vino.
Drugs can be used to increase HDL, though this hasn't been studied specifically in people with disabilities.
Diet is the factor in heart disease over which you have the most control. First rule--keep your weight down: Quads should weigh 10 to 15 percent less than the weight found in ideal-height-and-weight charts; paras should weigh 5 to 10 percent less. If you're at a good weight now, quads need about 10.3 calories per pound per day to maintain a constant weight; paras need about 12.7.
Equally important is eating a low-fat, high-fiber diet. There is no difference between recommendations for the general public and people with disabilities, so it's easy to find more info on this topic. Likewise, smoking cessation programs are recommended for people with SCI just as they are for everyone.
More specific to SCI survivors is an increased incidence of diabetes and insulin resistance, which result in metabolic and blood pressure abnormalities that increase risk of heart disease. See "Screen for Diabetes" below.
Love Your Bowels
One recent SCI study highlighted three major complaints about the bowel: constipation, reported by 42 percent (more quads); pain, reported by 35 percent; and incontinence, reported by 27 percent (more paras).
Constipation worsens with age, so you may have noticed a gradual appearance of the symptoms: bloating, pain, leakage of mucus, dysreflexia, a greater than 30-minute wait after inserting a suppository, hard bowel movements, pain or bleeding from hemorrhoids, and bowel incontinence. The problem can often be addressed by increasing exercise, drinking more water and eating foods that soften the stool. Most of these foods are intuitive--most fruits and veggies--but there are a few exceptions. Apple sauce and strained fruit juices, for instance, harden the stool. For a more complete list of hardening and softening foods, click here.
Lots of meds cause constipation, including several painkillers, antidepressants, antacids, bladder drugs and treatments for high blood pressure. Ask your doctor about changing or discontinuing drugs.
If you've tried all of the above, consider your choice of suppositories. Some users swear by the Magic Bullet from Concepts in Confidence. John Fields, 61 and a C5-6-7 quad from Kingston Springs, Tenn., says he's one of those people. "In rehab, they used what you get off the shelf--Dulcolax," he says. "After I got back into my home, it didn't work well with me. I could use the Dulcolax and be on the stool for two and three and four hours." He kept seeing ads for the Magic Bullet and finally called the owner of Concepts in Confidence, Mike Ginsberg, whose injury is C8-T1. "Mike said you used it like the other suppository, but he said be ready and be close to the toilet when you do it. With my experience, I thought he doesn't know what he's talking about. But let me tell you, my wife put it in me in the bed, and I barely made it to the bathroom." Now, Fields takes Magic Cleanse--a stool softener that helps bring the stool to the lower bowel--12 hours before his program and inserts the Magic Bullet just before it. "Sometimes," he says, "my bowel program can be just as fast as a [nondisabled] person's."
Another aspect to consider is bowel program technique: Are you getting the suppository high into the rectum? Is it resting against the wall of the rectum, as it should be?
If the works are still blocked, you've probably entered the realm of impaction and may want to try PIE, or pulsed irrigated evacuation. PIE, invented in 1988 by polio quad Roy Abell to solve his own bowel problems, is a high-tech enema that opens the rectum with an inflatable cuff and then gently pumps warm water into the colon. This stimulates the natural peristaltic action of the bowels, and waste follows gravity's course into a disposable bag.
The system has been used by people with all kinds of neurological conditions and has prevented several from needing surgery, according to the company. Darla Franklin, 51, of Lincoln, Ill., says PIE saved her from a colostomy. "I was in a Catch 22," she says. "I have a neurogenic bowel due to multiple sclerosis, and my bowels would not move unless I took laxatives, but when I took laxatives, I couldn't control when they would move." The result? Nine years of accidents, three to six hours a day in the bathroom, stomach damage from the laxatives, a rectal prolapse and a doctor who said surgery was the last recourse. Anxious to avoid a colostomy, Franklin fought with her insurance company for a PIE trial. When they stalled, she paid her own way to a rehab hospital to try the PIE procedure.
"It helped me tremendously," she says. "I didn't have the pain, I didn't have any accidents. It just made all the world of difference, and at that point I knew that I was going to fight to the bitter end to get this thing."
Franklin did finally convince the insurance company to spring for the device. "It has completely changed my life," she says. "No more accidents--none. I'm much more awake and actually more coherent--I think it was affecting my brain because of the toxins in my body."
Several studies have proven the system's safety and efficacy, with one even demonstrating that the colon tissue of long-time PIE users was healthier than a typical SCI survivor's colon tissue. To learn more about PIE and whether it's right for you, contact the company at 888/878-8222 or www.piemed.com.
While fecal incontinence is often caused by impaction higher in the bowels, it can also be due to diet, drugs such as antibiotics and antacids, or irregular bowel programs. If you've ruled out impaction, Lammertse recommends getting back to basics. "A lot of people drift into bad habits," he says. "Since doing a bowel program is a hassle, they may stretch it out to every three days or twice a week. They may shortchange their digital stimulation, or they may allow their diet to deteriorate to one that doesn't have as much fiber and bulk in it." The University of Washington has two useful brochures on the subject at www.depts.washington.edu/rehab/sci or 206/543-3600.
If you do need a colostomy, you'll want to read Barry Corbet's "The Joy of Colostomy" from the July 1998 issue.
There is no indication to date that colon cancer occurs at a higher rate among people with a neurogenic bowel but, says Lammertse, "there's no reason to think that it's less." The general public has a 1-in-20 lifetime chance of getting the disease, and Lammertse says his concern is that people with disabilities don't receive access to cancer screening that's routinely provided to the nondisabled population. "It's very difficult to do a sigmoidoscopy or colonoscopy in a quadriplegic," he says. "We essentially have to admit them to the hospital, and the insurance companies don't pay for it because it's admitting someone for a test."
John Lonberg, 63, a T4-5 para from Riverside, Calif., says his Kaiser facility tried to do an outpatient colonoscopy, but the result was a big mess and a screening that missed most of his colon. Afterward, he overheard the staff talking about it. "They said if they ever saw my name on the list coming up for that procedure they were going to take the day off." Lonberg doesn't blame them--he blames administrators for not thinking outside the box to acquire the equipment and procedures to do the test right. "They admitted that [with current outpatient equipment] the only way it would actually work would be if they would bring me in and do it as an inpatient procedure," he says. "It's a shame because then we're left out of a health care procedure that they consider important--I guess for everyone else except those of us with spinal cord injuries."
The consequence, Lammertse says, is that people with disabilities may not be diagnosed early and thus may have a higher death rate.
Linda Priest, a polio survivor--and now cancer survivor--from Atlanta, had a narrow escape because health care providers avoided giving her the difficult test when she was in her early 50s. "It could have cost me my life--and it almost did," she says. Click here for her story.
The American Cancer Society recommends that everyone have a sigmoidoscopic exam--the insertion of a fiber-optic tube into the rectum for directly examining the bowel wall--every three to five years beginning at age 50. There is an easier but less accurate screening, the fecal occult blood test, that should be done yearly beginning at age 50.
NM hasn't seen any lawsuits claiming discrimination in colon cancer screening, but they may be inevitable.
Know Your Bladder
What you don't know about your bladder can definitely hurt you: Bladder cancer is more common in people with SCI and MS than in the general population. How much more? That depends. For the general population under 65, the incidence is about 0.1 per 1,000. For white men over 65, it's about 2 per 1,000. Both are far less than 1 percent, while SCI studies show an incidence ranging from 0.2 percent to as high as 9 percent under some circumstances. The figure used most often is 3 percent. The range for people with MS is from 0.29 percent to 5.7 percent, depending on factors below.
So what affects the risk? Gender, age and length of injury play a significant role. You're more likely to get it if you're a man, older and have been disabled a long time. In a survey of 6,527 veterans (average age 57), the Paralyzed Veterans of America found that 4.2 percent had bladder cancer or polyps--4.9 percent of respondents with SCI, 2 percent of those with MS, and 4 percent of those with other spinal diseases.
Beyond the immutable risk factors, there are three over which you have a little more control: number of UTIs, catheterization method and smoking. For people with MS, there is a fourth factor that increases risk: use of cyclophosphamide, an immunosuppressant ironically designed to treat cancer but often used off-label for autoimmune diseases like MS and rheumatoid arthritis.
UTIs NM has covered UTI prevention extensively over the years, most recently with "Of Bladders and Bugs" (April 2001), which looked at antibiotic overuse and the benefits of closed-system catheters for intermittent users.
Another relatively recent development in catheters is impregnating them with antimicrobial substances or coating them with silver alloy hydrogel. According to a report published this spring, "Engineering the Risk of Infection out of Urinary Catheters," indwelling catheters containing these broad-spectrum antibiotics significantly reduce infection in short-term use in hospital settings. According to several studies, the controlled-release nitrofurazone Foley catheter from Rochester Medical www.rocm.com can greatly reduce infection, at rates that depend on the length of use. Unfortunately, there haven't yet been studies of people for whom catheterization is a way of life. Rochester nonetheless believes its antibacterial catheters make sense for long-term users and has begun marketing its intermittent version, the Antibacterial Personal Catheter, in New Mobility. Intuitively, the product makes sense: Nitrofurazone has been shown to inhibit a wide variety of bugs and has not encouraged resistant strains in studies to date.
Beverly Hibdon, an L1 para who has struggled with infections since her injury seven years ago, had bladder augmentation surgery and started cathing from a stoma, but still had to take oral antibiotics continually. She began using the antibacterial caths two months ago and so far sees an improvement. "I'm not taking any medicine now and I'm feeling much better," she says.
Indwelling silver alloy hydrogel catheters also have solid scientific support in short-term use, with one large double-blind trial showing a 26 percent reduction in infection in a hospital setting. Without studies of long-term users at home, Bard Medical, www.bardmedical.com maker of silver coated catheters, has had limited success marketing the product to NM readers.
"There has been one study of our silver catheter in a chronic disease and rehab hospital that achieved a 30 percent reduction in UTIs. However, we do not have experience with home-based users, so there shouldn't be an expectation of the same UTI reduction as in the hospital population," says Tim Kelly, senior marketing manager for Bard. "I think you'd still see the effect on the extraluminal route--bacteria migrating up the outside of the catheter--but affording protection via the intraluminal route will be more challenging with home-based users. This is due to urine sloshing around, switching between different [collection bags], opening the system. Using good clean technique--but by no means sterile technique--you're still going to get UTIs every once in a while."
That said, Kelly says silver is worth a look if you're having a lot of problems. It's a broad-spectrum antimicrobial, doesn't encourage resistant strains and has not been reported to cause any allergic reactions. "It's a simple, noble metal," he says. Meanwhile, Kelly says stay tuned for two big things on the horizon: new products from Bard that may be even more effective at addressing concerns of the long-term catheter user, and an imminent vaccine for UTIs. The vaccine, made by MedImmune, is in Phase II clinical trials, meaning it could hit the market next year.
Until then, the above-mentioned "Engineering" report offers a few other tips on reducing infections:
Maintain a closed drainage system. A poor connector between the catheter and tubing or contamination of the collection bag lets the bugs in.
Keep collection tubing and bag below the bladder, and never let the tubing sag lower than the bag.
Screen for diabetes, which increases infections (see below).
Consider alternatives to urethral catheterization--suprapubics and condom catheters have a lower rate of infection.
By all accounts, indwelling urethral catheters are the biggest culprits in bladder cancer, increasing the risk threefold in some cases. But the length of use is also key: A study by Craig Hospital found only a 0.2 percent risk after 10 years, but a 9 percent risk after 30 years.
In a study of MSers reported in the Journal of Urology, the rate of cancer among indwelling catheter users was 0.7 percent, compared to 0.29 percent for a general MS sample. When chronic catheterization was combined with use of cyclophosphamide, the number jumped to 5.7 percent.
In the PVA survey, condom and intermittent catheter users did not show an increased risk. Suprapubic catheter users reported about the same rate of bladder cancer as indwelling urethral catheter users.
So what can you do if you use an indwelling catheter? "Choose to be seen for more regular follow-up," Lammertse says. "Then you have a chance of catching the cancer very early."
There are alternatives to indwelling catheters, he points out, but they are generally perceived as too limiting. "If you're a woman who's a quadriplegic who doesn't have good hand function, there aren't any really good options that will leave you as independent in terms of having a career, going to school or lessening your reliance on personal care attendants to do your catheterization," he says. "Their urologists may have tried to convince them to do intermittent catheterization, but it becomes apparent to many of those women that this is not a practical way to go in terms of lifestyle."
One option that may be appropriate for some people with a neurogenic bladder is NeuroControl's Vocare implant, which uses electrical stimulation to void the bladder without a catheter. NeuroControl reports that the device has been used successfully by people with injuries as high as C5-6.
If you can't change the system, doctors recommend the following:
If anticholinergic drugs were prescribed, take them. They reduce bladder irritation.
Switch the leg you use for your drainage bag daily. This should move the catheter so that it doesn't rub the same place in the bladder all the time.
Use the best catheters you can afford.
Get screened regularly for bladder stones, another irritant.
Have blood in the urine checked immediately.
If you've had an indwelling catheter for more than 10 years, get a cytoscopy every one or two years to ensure early detection of cancerous cells.
Screen for Diabetes
You may have diabetes or impaired glucose metabolism and not even know it. One study of male SCI veterans found that 22 percent were diabetic, compared to 6 percent of nondisabled controls. Not only that, but 50 percent of the paras and 62 percent of the quads had abnormal glucose tolerance, compared to 18 percent of the controls. What does this mean? "If you have abnormal glucose tolerance but you're not a frank diabetic," Lammertse says, "you're heading down the path and you could ultimately become diabetic, especially if you don't pay attention to it and try to maintain a healthy weight."
Like most things, diabetes gets worse with age. Some researchers have pointed out that disability accelerates aging, so it may also summon diabetes sooner. That, in combination with inactivity and changes in muscle and fat mass, makes people with SCI prime targets. Most doctors say that having MS doesn't increase the risk of getting another immune disorder, but it could be a sign that the person is prone to autoimmune disorders in general.
You probably know that diabetes can damage all organs of the body, and sometimes results in amputation or even diabetic comas and death. You may not know that it also increases risk of heart disease, skin breakdown, UTIs and yeast infections.
Look for these early warning signs: Dehydration, extreme thirst, excessive urination, increased appetite and weight loss. You may, however, have no symptoms at all. If you are already managing diabetes, watch for skin breakdown that won't heal, changes in the color and texture of your toes, and swelling in the ankles. Don't stick your head in the sand on this one.
Usually this disease can be controlled with diet and exercise, but you may also need oral meds or insulin injections. The earlier you're diagnosed the better, so if you suspect diabetes, see your doctor for a simple urine or blood test.
To read the remaining five ways to improve your health, order the print edition of the November 2001 issue. Order the November issue.