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Note: Information provided at this web site is of a general nature and is not intended to take the place of a physician's advice. It is vital that persons diagnosed with, or suspected of having, any disability or medical condition consult with their physician or with the appropriate division at a major teaching hospital, to assure proper evaluation, treatment, and interpretation of information contained on this site.
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Bladder incontinence and impotence.
These problems can be frightening and embarrassing to many men. But, like other disabilities, they need not be alarming or absolute -- and I speak from personal experience here. I have multiple sclerosis, and among the other problems I discussed in the introduction, it has also resulted in bladder incontinence and near impotence since 1980 and total impotence for the past 20 years (which has not kept me from having a great sex life).
But regardless of disability, self-maintenance and self-acceptance are critical. The latter can be especially difficult at times. The subject of this article involves two disabilities which often get relegated to the back burner conversationally because they are too embarrassing to discuss openly. And sometimes this neglect becomes more than verbal or psychological.
I do want to stress that consultation with an urologist is essential for either problem. Your doctor will be able to determine the best possible ways to manage incontinence through urodynamic studies, cultures and physical examinations. For more detailed information on bladder problems, I want to highly recommend Overcoming Bladder Disorders, by Rebecca Chalker and Kristine E. Whitmore, M.D. (Harper Perennial, New York: 1991). This is an easy to understand and comprehensive guide to understanding and managing a wide range of bladder-related problems. This article is only meant as an introduction, and an assurance that options are available. As for advice regarding impotence, this article can't compare to a proper evaluation. Consider this merely as preliminary education to show that there are some options. I also highly recommend SexualHealh.com and the other web sites on my introductory Sexuality and Disabilities page..
I. Incontinence
This is a common problem affecting millions of people to varying degrees -- probably more than statistics alone would show, since it is an embarrassing condition few people want to acknowledge. But according to Chalker and Whitmore, if all incontinent individuals would seek treatment, "...more than one half could be cured, another third could be helped significantly, and most of the rest made more comfortable". Granted, if considering only individuals with disabilities, the cure-rate would not be as high, but most can certainly be helped significantly in managing their problems.
In general, there are several types and degrees of incontinence, and an understanding of the type or types you have is the first step to controlling it.
The first type is known as stress incontinence -- referring to physical, not emotional stress. This is where sudden activities like coughing, sneezing, laughing, or physical exertion cause a leakage of urine because of dysfunctional sphincter (the natural valve between the bladder and the urethra), or weakened pelvic muscles that result in uneven pressure on the bladder.
Another type is urge incontinence, where an over-active bladder causes an involuntary contraction and often results in moderate to significant leakage. A bladder infection can also cause this, as it makes the bladder lining more sensitive. A variation of urge incontinence is reflex incontinence, where the bladder empties involuntarily, without sending a sensation of a need to urinate. This condition often results from spinal injuries or from some neurological disorders which interfere with spinal transmission of signals to and from the bladder and sphincter.
Overflow incontinence is another problem that can result from the lack of sensation from the bladder, causing the bladder to fill beyond its capacity and leak the excess. This condition may also be caused by an urethral blockage from an enlarged prostate or a tumor that interferes with normal voiding.
An additional problem, resulting from some spinal injuries or conditions is bladder-sphincter dyssynergia, where the bladder contractions, voluntary or involuntary, do not coordinate with the relaxation of the sphincter. The bladder is constantly pushing, but the sphincter will not relax. If untreated, the bladder loses its ability to expand and contract normally and gets very highpressured and small, holding only two to four ounces.
For the sake of simplicity, most reasons for incontinence boil down to a combination of four factors: an over-active or an underactive bladder, and an over-active or an under-active sphincter. The causes for these problems can be wide-ranging and fall into two classes: temporary and transient, or longstanding and chronic.
For persons with disabilities, the latter category is likely to be the applicable one, and the question is how to deal with it most effectively. The important thing is to be sure to preserve the kidneys by not letting back pressure build up in the bladder.
There are many solutions for incontinence problems, but the first step is obviously to contact a doctor with experience of treating the condition. Call around to local hospitals to see if they have an incontinence center. Such a center should be equipped to do urodynamic testing. Ask about the availability of bladdertraining and biofeedback programs, drug treatments and surgical intervention. Ideally, there should also be a nurse or trained office person available to discuss these options.
The next step is to put together a good picture of your relevant medical history so that when you have your first appointment, your urologist will know what he or she is dealing with. I would advise coming to your appointment with a voiding chart (Chalker & Whitmore, 1991). Fill it out for about a week prior to your appointment. This will enable your urologist to get a better understanding of your problem, and it will make it easier to diagnose you and establish treatment. A food diary of what you ate can also be useful.
Once your doctor has your history, a physical examination and various diagnostic tests will be the next step before deciding on how to manage your incontinence. The purpose of the testing is to determine the capacity of your bladder and your ability to retain urine. Your doctor may also look into your bladder with a cystoscope.
After a proper diagnostic work-up, treatment and management can be worked out, clinical as well as comfort and hygiene. There is a whole range of options for both, but I'll begin with clinical options.
Bladder training for urge, reflex and overflow incontinence:
Using the voiding chart as a basis, a pattern of urination can often be determined. By taking a look at the amount of time between fluid intake and voluntary and involuntary voiding, an average interval can often be discerned. If there is a pattern of voiding about every two hours, do so whether it is needed or not. If you do not feel an urge, stimulate one with a Credét maneuver. Place your thumbs over your hip bones and spread your hands over your lower abdomen. Now, lean forward, and using your fingertips, press over your bladder area with rapid and rhythmic presses, digging in a bit. This will often work to bring on an urge to enable you to urinate. After voiding, pause briefly to fully relax, and then try to void again, repeating the pressing. Doing this will make sure that you empty your bladder as much as possible. Over time, gradually work to increase the interval between voiding by setting up a pattern of emptying as much as possible and trying to hold out. By establishing and sticking to a routine like this, you should be able to gradually increase the time span between urges, and also to reduce the number of incontinent episodes.
For individuals with overflow incontinence, a variation of timed toileting is also effective. Once a pattern of uncontrolled voiding has been determined, use a small alarm as a reminder to always go at regular intervals, timed to fall within the "safe" time periods. Be sure to maintain consistence in the timing of what you drink.
Pelvic muscle exercises for stress incontinence:
Exercises are also useful as a supplemental tool for persons with urge or reflex incontinence. Combine timed toileting with pelvic muscle exercises to strengthen the muscles needed to control your bladder. Very often, the combination can dramatically increase the length of time between voiding urges. To learn more about these exercises, the Pelvic Training Manul, and a tape with detailed information on pelvic muscle exercises, can be obtained from HIP, Inc. (see Organizations at the end of this article).
Drug Treatment:
There are two categories of drugs for incontinence problems. One slows down a hyperactive bladder, and the other either tightens or relaxes the bladder outlet, or sphincter area.
The first class, called anticholinergic, acts to damp the involuntary bladder spasms that lead to urge or reflex incontinence. Some also target certain receptors in the urethra to relax it. These drugs help reduce involuntary voiding and allow the bladder to fill more.
The second, adrenergic class is split into two types. Alpha blockers relax the muscles of the sphincter, which is useful in persons with overflow incontinence. In contrast, alpha agonists tighten the sphincter muscles, which can help those with stress incontinence. However, because of potential side effects and interactions, drug treatment is ultimately not the best long-term treatment for incontinence. It is used primarily for urge incontinence and, on a long-term basis, mainly with individuals with neurological deficits causing urge incontinence -- commonly an interruption in spinal transmission, between the sacrum and the thoracic spine.
Intermittent catheterization:
For individuals who have no bladder contractions at all or who have sphincter dysfunction and/or overflow incontinence, an alternative to alpha-blockers is to regularly self-catheterize. Once you get to know your body and voiding schedule, simply set up a regular schedule to self-catheterize. A kit for this can be discretely carried with you if you have to be out. Sometimes, the bladder is paralyzed (surgically or with medication), and regular self-catheterization becomes the standard way of managing a problem bladder.
Surgical Intervention:
Surgery is a last-resort option, but in certain cases, it is a useful one. Many men suffer severe incontinence following prostate surgery, and if non-surgical measures fail, one option used in some cases is to implant an artificial sphincter. Another group using this solution is made up of men who, due to neurological problems, have an incompetent sphincter. A lot of times, these men have bladder sphincter dysnurgia, and a common solution is to cut the sphincter, and then put in an artificial sphincter around the bulbar urethra so that urine can be released at will to keep the bladder from over-filling.
An artificial sphincter consists of a pump that is placed in the scrotum, with a pressurized cuff placed around the bulbar urethra where it bends. The pump and the cuff are connected to a reservoir placed in the belly cavity next to the bladder.
Normally, the cuff is full to prevent leakage, then every so many hours, the pump will transfer the cuff fluid into the reservoir to release pressure on the urethra to allow voiding. After two to five minutes, the cuff automatically refills. While this does not guarantee total continence, it is usually better than 95% effective in men. If a child or young adult has an artificial sphincter, it will usually have to be replaced at some point, but it can be good for 10-15 years. However, because of erosion risk and non-surgical options, this type of procedure is still something to be very carefully considered.
Another urological surgery procedure, used in cases where the bladder has become too small because of dyssynergia, is a urinary diversion. This procedure involves augmenting the bladder with a piece of bowel, or creating a new reservoir to replace it, and in some cases a new drainage system is created.
For more information on these procedures, see Chalker and Whitmore's book, and discuss them with your urologist.
External Catheter Systems:
Because of convenient anatomy, an external catheter system can be a very effective and discrete way for men to handle incontinence. A number of manufacturers make external catheters which are all similar. These resemble condoms, but are adhesive and have an open tube on the end. With a connector, this hooks up to a tube leading to a collection bag, which is normally worn strapped onto the front of the lower leg. I have used several different types, but after major quality changes in the last type I was using, I have now found and changed to the superb Hollister extended wear external catheters. They are superb for both ease of application and the most secure positioning. More on self-care for individuals using this option follows.
External Catheter Use
Next, I want to focus on an aspect not often dealt with or understood from a user's point of view: self-maintenance for clients using external catheter systems.
In my own case, my M.S. results in a reduction of both capacity and sphincter control. My capacity is down to less than half normal before spasticity sets in, and when the pressure from the spasticity sets in, my control is insufficient to retain fluid for long. Drug therapy is impractical because of the interactions with my antispasmodic medication. Bladder training and timing are ineffective because of my activity level -- I never know if I will be able to find a wheelchair-accessible bathroom when I need it.
I am also against unnecessary surgery, especially since using an external catheter system is so simple, and it keeps me dry and confident.
Despite all the advantages of an external catheter system, there are still several potential problems that require careful monitoring and preventive self-care. One of these problems is of course that there is a risk of a urinary tract infection (UTI).
The risk is not as great as for users of indwelling catheters, but it is still of concern to me because when I have a UTI, my body spasticity increases substantially. And that's not too welcome considering I have a thirty mile expressway drive to work. Another problem is that the antibiotics used to treat infections can kill the good bacteria in the bowels - often causing diarrhea (a real problem for wheelchair users). Thererfore it is a good idea to take to take an over-the-counter supplement such as Acidophilus or to eat yogurt while on antibiotics. Needless to say, consult with your physician first!
Another potential problem is skin breakdown on the outer shaft of the penis due to constant use of the adhesive catheter, and the lesser problem of irritation of the head of the penis from constant exposure to urine. The latter is especially of concern to uncircumcised individuals where the more sensitive foreskin, as well as the glans, are constantly exposed to urine. I am not circumcised and, for the sake of security and peace of mind, I wear the catheter 24 hours a days just as a totally incontinent individual would. This means that both of these potential problems have to be dealt with.
Fortunately, preventive care for these problems and for UTI's are very simple and related.
To begin with, keep in mind that while several catheter manufacturers share the recommendation of changing catheters every two to three days, this isn't always the best idea. It may be fine for bed-ridden nursing home patients, but for active individuals -able-bodied or with disabilities -- daily showering or thorough cleaning is preferable. Also, depending on the catheter, active individuals may wind up dislodging the catheter before two to three days are up, anyway. So change the catheter daily. I'll show you how to save enough money to pay for that.
As I said, change daily. After removing the catheter, thoroughly scrub the penis and, after showering or washing, apply a lotion, rub in and then towel off briskly (use a lotion without petrolatum additives, and I recommend one containing Aloe-Vera -- there are several inexpensive generic brands that are excellent). The point of the latter steps is to stimulate blood flow. Which brings up a delicate point: masturbation.
Depending on the degree of neurological impairment, a certain amount of blood flow can often be stimulated through masturbation. Even if no full erection or orgasm can be achieved, any regular increased blood flow to the stimulated penis promotes healing and tissue maintenance. The combination of scrupulous hygiene, lotion application and occasional masturbation (even if useless as intended :-) it can stimulate some blood flow, and any increase in penis size will make catheter application easier). Any increased penile blood flow will also help prevent skin breakdown on the shaft of penis, which would make continued use of an external catheter impossible. As for the irritation of the glans and foreskin I mentioned, there is a simple way of preventing this. Before putting on the catheter, apply a thin coat of petroleum jelly to the glans and foreskin where the adhesive portion of the catheter will not reach, but be careful not to get it where adhesive part of catheter needs dry, clean skin.
I have personally been using an external catheter constantly since 1981, following this maintenance regimen, and when my new urologist checked me in 1998, she was surprised to learn that I had not had any problems with skin breakdown -- or UTI's (except a couple minor ones).
Fortunately, the above regimen also helps minimize the risk of bladder infections. Another way is to change appliances properly and disinfect them scrupulously. I use a 2,000 cc bedside bag when I go to bed, and a regular leg bag when dressed and up.
Thie following italicized part was added 1-8-04 after an e-mail from someone who wanted more details on bag maintenance. So:
Re the solution and sterilizing the bags:. What I do is keep (or get) one empty gallon bottle of bleach, label it "sterilizing solution", buy a full gallon bleach and to empty labeled one, add 1/4 fresh bleach. Fill it with water the rest of the way adding about 1/4 cup baking soda and shake well (needs to be shaken periodically) then I pour some of the solution (called Dakin's Solution) into an empty liter (or so - I use a large shampoo bottle that's empty and washed out). That makes it easier to handle to fill bags. When the pre-mixed gallon jug is empty, add another 1/4 jug fresh bleach, add water and baking soda as before. One gallon will make 4 batches of solution. It needs no refrigeration and doesn't spoil (just shake once in a while so baking soda doesn't settle). I use Hoillister Texas catheters (condom-like adhesive external catheters), and use one as a funnel (cutting off the excess catheter) to pour the solution in my bed and leg bags. If you use straight cath, just buy one Texas cath to use as funnel. I use about a cup's worth of solution each time I sterilize a bag. After emptying the one bag and adding cup of solution (when switching from bed bag too leg bag and vice versa), shake the bag so all of it is sterilized, empty it, and then rinse with water (use the same funnel to put in tap water), shake bag again and empty and then be sure the bag is sealed with the original cap. Be careful when changing bags as bleach can spot clothes. Be sure cap at end of bag is dry. This technique is a lot cheaper than using commercial urinary appliance sterilizing solutions, but as effective as the best of them. A word of caution: don't leave the solution in the appliance overnight or all day. Some discoloration and weakening of the plastic may result from chemical action. I usually change leg bags and night bags every months, or more often (my new insurance pays for the bags so I usually change every few weeks. The Dakin's solution keeps them sterile enough that there is no worry or bad smell from using them that long.
As I mentioned, longer appliance life and a much cheaper solution will pay for the cost of extra catheters. And following this regimen has the side benefit of a reduced risk of other problems.
II. Impotence
Impotence, both partial and complete, is a more delicate problem, with many causes and often associated with more advanced M.S. and several types of spinal injuries. This is something that many men are unwilling to talk about -- which is a shame because there are a number of effective ways of dealing with the physical problems of impotence. I will discuss the psychological ones later. Again, I can't stress enough the importance of consultation with your doctor if this is a problem, but I want address this from a personal vantage-point as well.
Four of the techniques presently used to deal with erectile dysfunctions include Viagra taken orally, penile injections with papavarine or prostoglandin, vacuum pumps, and prosthetic implants -- with different types of the latter. A combination of this and the Ferticare male vibrator (see separate discussion below) may also be practical. But each needs to be thoroughly discussed with your doctor.
Viagra's advantage is that it requires no invasive surgical procedure, no needles, and no bulky apparatus or complicated maneuvers. The disadvantages come from sensitivities and reactions. It is vital to consult with your physician!
The next method is where a drug is injected directly into the base of the penis which stimulates blood flow to yield a normal erection, sufficient for sustained intercourse. However, disadvantages include potential scarring from repeated self-injections, the time delay until sufficient erection is attained, and the problem of prolonged erection when no longer desired. Timing and dosage are critical.
Another technique is the use of a cylinder which is placed around the penis, pressed snugly against the body and from which air is extracted via pumping action. The reduced pressure inside the cylinder draws in blood to stimulate an erection. At that point, a stretchable rubber ring (held in place at the bottom of the cylinder) is rolled off and snapped in place around the base of the penis to prevent blood return so that the erection is maintained after the cylinder is removed. The disadvantage is obvious. Even if you make a game out of it, the kind of contortions necessary to use this device can really destroy any romantic or erotic mood. Just as with the injections. Also, it does not always provide a sufficient erection for intercourse.
The last solution -- a surgical implant -- while more radical, has an obvious advantage in that an erection is unobtrusively and immediately (or quickly) available to allow for spontaneity. Also, the surgery can be covered by insurance such as Blue Cross and Blue Shield.
To assure that it will be covered and that the condition is medical in origin, the urologist will first require a test to check that the impotence is not psychological. This is begun by means of a Snap Gauge test. The Snap Gauge is a small plastic device wrapped around the penis and fastened with a velcro strap before going to bed. Normally, when sleeping, the penis will go through a number of nocturnal erections, even if someone suffers from psychogenic impotence. To test this, the Snap Gauge has three thin plastic bands with different breaking points on it, and depending on the degree of the nocturnal tumescence, one or more of these bands will break as the device is stretched by the erection. The number of bands that break give an indication of the extent of the erection. If this does not happen, a diagnosis of organic, neurogenic or vascular impotence is supported. In some cases, sleep study testing is added to substantiate this, but if there is already a degenerative neurological condition present, such testing is often waived.
At this point, a choice has to be made. There are several types of penile prosthetic implants available, and each has different properties to consider. There are two primary types, malleable and inflatable, with two different types of the latter.
In the case of the former, there are two cylinders (the size depends on the patient's anatomy) that are implanted into chambers within the penile shaft that normally engorge with blood. These cylinders are solid and can be bent, so that once they are implanted, one need only bend one's penis up into an erect position. The penis is perpetually semi-erect, and positioned wherever most convenient.
This is the simplest and most reliable solution. One disadvantage of this implant is a psychological one -- which was my opinion when I opted for an inflatable prosthesis. My feeling was that even in a good emotional relationship, there can be lingering insecurities and some women might feel a bit uncomfortable with a perpetual erection. A case of "If he really finds me desirable -- even if he is impotent -- I should have an effect on him". I also wanted to be able to involve the woman in my life with my erection. To be very crude, as I put it to my urologist: "If she can't get me up one way, I want her to be able get me up another."
To sidetrack for a moment, I want to stress one thing: whatever method is selected, one element is crucial: one's partner must be fully aware that the impotence is not the fault of one or the other, but it is something unavoidable. Instead, focus on each other, have fun and let your feelings have a field day.
Frankly, a lot of relationships could benefit from taking that advice! (note: see my third article: For Couples: Sex and Disability for more on this)
As for inflatable penile prosthetic implants, there are two types: the self-contained and the multi-part devices. The former consist of two cylinders resembling the solid rods, but with a fluid reservoir and a pump built into each. Implanted in the penile chambers just like the solid rods, they are limp when deflated and only add a bit to the penile size. However, by squeezing precisely on a valve on the sides of the tips, fluid is drawn up and into the soft-sided cylinders to simulate normal erection. They are deflated by bending in the right place.
The second type of inflatable prosthesis also consists of two cylinders, implanted as before, a pumping device in the scrotum, and a reservoir implanted in the area above the pubic bone. By squeezing on the pump, fluid is transferred into the cylinders to yield the most solid erection of the implants. The disadvantage of this type is the additional surgery required, and the slightly higher potential for problems. As with anything, the more complex something is, the greater the chance that something might go wrong.
A note of caution is called for in terms of the first type of inflatable implant. As I discovered, once implanted, they are not as easy to operate as I had thought they would be, and migration (the cylinders move out of place when deflated) is possible. This happened to me, and therefore my implant is not functional at the moment.
Again, these are things that need to be discussed with your urologist. All I can do here is to make you aware of some of the issues involved.
One additional note on the first two implant types: the surgery is simple, and recovery is not bad at all. I have no personal experience with the latter type. Speak to your doctor about that. The only thing to be aware of is that if you are not circumcised, the edema, or swelling, which is natural, will be a little more uncomfortable and might mean that you will have to have an indwelling catheter a little longer than otherwise.
Finally, I want to mention the Ferticare. This is essentially a male vibrator, but designed with a variable rate to provide stimulation leadiang to orgasm - to allow sperm collection from spinal injured men desiring their own children. I intend buying one to determine its pleasure efficacy for M.S. client like myself, and to seek responses from spinal cord injured men also to see if this can be equally effective as an additional way of enhancing relationships. For details go to the Ferticare site.
Some Final Notes
Finally, I want to talk about another aspect of impotence: the psychological one. I discuss this in more depth in "Sexuality and Disabilities", but some of this can't be said often enough.
Do not look at these devices as a cure or a way to have great sex. They are a means of enabling more normal intercourse or to enable couples to have their own children, but the former is not the be-all, end-all of sex. Neither is orgasm, which won't be enabled by the implant if that was a problem before, and it's not guaranteed with the Ferticare (though that is covered by a money back warranty).
To illustrate my point, I'll use myself as an example here.
A couple of years ago, I had the self-contained inflatable kind of prosthesis implanted. Because of the small size of the woman I was later involved with, and the difficulty in activating the implant, the cylinders migrated and were of no use for intercourse. However, that did not prevent us from enjoying a satisfying sex-life as part of our relationship.
The keys are in two of my home page mottos: ""Focus on what you do have and are able to do -- not on what you don't have or can't do!", and "If what you got don't work, work with what you've got!". It took several years for me to learn those, but - perhaps because I integrated that philosophy in my life before I had the implant - it was easier not to let the inability to use the implant stop me from having and enjoying that relationship.
If you have a problem with impotence, the most important thing to learn and accept is that the impotence does not mean that there is something wrong with you. It's just another disability that you circumvent in whatever way you can. There is more than one way to give pleasure, or to feel it. I have learned to focus on the multitude of other sensory and sensual pleasures of being with a woman, and I don't worry about one particular deficit. That may be difficult for some men to accept, but it is possible. Just as it is possible to deal with incontinence.
The best advice is what I already gave and I'll give it again:
Focus on what you have and are able to do, and accept that there is nothing wrong with you; you just have a few more challenges to make life interesting. It works for me.
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Recommended Reading (more resources coming)
Overcoming Bladder Disorders by Rebecca Chalker and Kristine E. Whitmore, M.D., New York: HarperPerennial, 1991.
Staying Dry: A Practical Guide to Bladder Control, Kathryn L. Burgio, K. Lynette Pearce, and Angelo J. Lucco, M.D., Baltimore: The Johns Hopkins University Press, 1989.
Urinary Incontinence In Adults. This free 32-page pamphlet is available from The Office of Medical Applications of Research, Building 1, Room 260, Bethesda, MS 20892.
Organizations
10-11-2004
'Dry Life' website, provided by the American Urological Association,The site is designed as a step-by-step guide to treating incontinence and is entitled "You are not alone". This guide provides an overview of the different types of incontinence, their causes, symptoms, and treatments.
National Association For Continence. P.O. Box 8310, Spartanburg, SC 29305-8310. Phone: 800-BLADDER and 864-579-7900, FAX: 864-579-7902. Web Site: http://www.nafc.org. This organization offers a range of reasources including a quarterly newsletter Quality Care.
The Simon Foundation for Continence. P.O. Box 835, Wilmette, IL 60091. 1-800-23-SIMON and 708-864-3913. This organization distributes Managing Incontinence: A Guide to Living with the Loss of Bladder Control, edited by Cheryle B. Gartley; and a quarterly newsletter called The Informer.
Continence Restored, Inc. Contact co-directors Anne Smith-Young, C.U.T., and E. Douglas Whitehead, M.D., at the Association forUrinary Continence Control, 785 Park Ave., New York, NY 10021. This organization was formed to provide support for incontinent individuals, and to provide information on how to form local support groups.
Acknowledgement: I would like the thank Dr. Kristene E. Whitmore, Director of the Incontinence Center at Philadelphia's Graduate hospital for proofing this manuscript to assure no errors or false advice slipped in.
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