Peyronie’s Disease: What Is It and How to Manage

20 Dec

Peyronie’s Disease:  Surgical Treatment and What the Future Holds

Peyronie’s Disease (also known as Chronic Inflammation of the Tunica Albuginea (CITA), is a connective tissue disorder involving the growth of fibrous plaques, or scarring,[2] in the soft tissue of the penis.  It affects up to 10% of all men. Specifically, scar tissue forms in the thick sheath of tissue surrounding the dilatable spaces of the penis which fill with blood and become distended with erection.  The condition causes pain, abnormal curvature, erectile dysfunction, indentation, and shortening of the penis. While among CITA’s symptoms is not bladder control problems, because of its interference with normal sexual intimacy and the dysfunction that accompanies it, at NAFC we are prepared to address it and help to refer callers to further information and clinical experts.

Diabetes, high blood pressure, and cigarette smoking seem to be more common among men with Peyronie’s disease. Invasive procedures, like prostatectomy (removal of the prostate) may also increase the risk of developing Peyronie’s disease. However, studies aiming to draw causal links between such factors and CITA remain inconclusive to date. Doctors do not know why some men develop Peyronie’s disease and others do not. It is generally believed that it is a wound-healing disorder that prevents tissues in the penis from healing properly and that the disease is activated by injury to the penis. The injury can be a significant trauma or the accumulation of minor ones — like those that occur during normal sexual intercourse.

For many, the disease does change over time but it does not go away. It usually occurs in two phases — the acute (or active) phase when the most changes in the penis occur and the pain is most acute and the chronic (or stable) phase when the pain may subside substantially and changes cease to occur.  In rare cases, Peyronie’s disease resolves on its own within 12-18 months without any form of medical treatment.

Recommended Nonsurgical Intervention

A variety of treatments have been used, but none has been especially effective. Reported success rates from invasive surgery tend to average 50-60%, and in about a third of the cases the condition returns after a number of years. Some of the country’s recognized experts in studying and treating CITA include Dr. Tom Lue of UCSF Medical Center, Dr. Lawrence Levine of the University of Chicago, and Dr. Cully Carson at UNC-Chapel Hill.  Dr. Levine, and a member of the Medical Advisory Board of the Association of Peyronie’s Disease Advocates  (APDA),  recommends the following approaches among viable nonsurgical intervention and treatment:

“First is a combination of oral pentoxifylline 400 mg three times a day and L-arginine 1000 mg twice a day. Although these drugs have not been shown in any large-scale multi-center trials to be effective, there is some evidence that they may reduce the likelihood of progression of scarring and may have some beneficial effects on scar remodeling and resolution. These drugs

are relatively inexpensive, non-toxic, and tend to be well tolerated. This combination of drugs should be taken for about 6 months.

The second approach is injection therapy. It is my preference to use verapamil, as it is less expensive and has fewer side effects than interferon. In our experience in over 1700 patients, we found 50%-60% of patients had a reduction in curvature of at least 10 degrees. Verapamil is typically recommended to be injected in the office every 2 weeks for 6 treatments, at which point reassessment is made. If no improvement is noted, then no further therapy is indicated. If there is improvement of curvature, girth, pain, or erection, then it is reasonable to continue with the

standard protocol, which includes 12 injections over 6 months. This approach is typically covered by insurance. Verapamil injection should not be considered as a cure, but has been shown to be beneficial. Verapamil may help stabilize the disease and prevent progression of the deformity. When no treatment is given at all, the deformity gets worse in up to 50% of patients.

The third approach is external traction therapy. I prefer external traction devices, as they provide prolonged forces on the penis which activate the chemical processes that result in scar remodeling, elongation of the penis, and correction of deformity. I have not seen beneficial effects with vacuum therapy.  It is important to use traction therapy carefully, which includes wearing the device for at least 3 hours per day at 2-hour intervals. This means it cannot be worn during extended periods of sleep for fear of injury to the underlying tissue. In over 300 patients treated with traction therapy, I have personally not seen any adverse side effects. Two men have had temporary abrasions of the skin on the edge of the glans penis, but there have been no negative effects on erectile function or sensation.

Initial evaluation at our medical center using this three-approach protocol demonstrated that approximately 60% of patients had measured improvement of at least 10 degrees, and that in those men who were responders, the average curvature reduction was 24 degrees. In men who used oral and injection therapy without traction therapy, only 50% had measured improvement, with an average curvature improvement of less than 20 degrees (1).

Surgical Treatment

Essentially, there are three types of surgical procedures:  1) Plication, 2) Grafting, and 3) Implants (2).

Plication involves pinching the tissue together on the outer side of the curvature.  It is one of the least invasive procedures, promising long-term results with low rate of recurrence requiring a second surgery.   It is less likely to cause erectile dysfunction than grafting procedures, and has a track record of high patient satisfaction with its cosmetic results.  Many patients achieve near-complete correction of the curvature.  The unfavorable side effects can be a slight penile shortening, loss of elasticity and impotence (the inability to achieve or maintain an erection).

For men with more severe curvature, grafting is often recommended.  The procedure involves replacing or expanding scarred penile tissue with healthy tissue (called grafts).  Scar tissue, or plaques, are not usually removed in the surgery unless they are calcified.  With many patients, some curvature is likely to remain present.  The unfavorable side effects, like plication, involve penile shortening, loss of elasticity, and impotence.  There is also scarring likely in the vicinity of the graft.

The implantation of bendable or inflatable plastic cylinders is still another option but considered by many urologists to be a last resort.  These are typically desired by men for whom erectile dysfunction is a chief concern and where plaque formation is extensive.  Shortening of the penis still occurs and other unfavorable side effects are possible, including infection, damage to penile tissues, decreased penile sensation and the occurrence of numbness, and implant malfunction.

Certainly there is excitement about Xiaflex, a form of injectable collagenase which is currently in phase III clinical trials. It is likely we will not know the results of those trials until late 2011 or early 2012.  XIAFLEX® (collagenase clostridium histolyticum) is a prescription medicine currently on the market to treat adults with Dupuytren’s contracture when a “cord” can be felt. Over time, the thickening of this cord in your hand can cause one or more fingers to bend toward your palm, so that you cannot straighten them. XIAFLEX® helps to break down the cord that is causing the finger to be bent. XIAFLEX® should be injected into the cord by a healthcare provider who is experienced in injection procedures of the hand and treating people with Dupuytren’s contracture. The drug is marketed in the U.S. by Auxilium Pharmaceuticals, Inc. (3)

Still another possible intervention in the future is BOTOX injections. Currently, there is a clinical trial at Baylor College of Medicine in Texas.  Little is known of results in patients enrolled in the trial to date.

The point, as with bladder and bowel control problems, is to seek out an expert and engaged in shared decision-making in choosing a course of treatment.  A man’s sexual partner needs to be involved in the discussion, as appropriate, and be familiar with the benefits and risks of each treatment option.  The APDA can be especially helpful with this process.

(1)   http://www.peyroniesassociation.org/treatment/apda-medical-advisory-board-position-statement-on-treatment/#, retrieved November 28, 2011.

(2)  http://www.peyroniesassociation.org/treatment/treatment-comparison/, retrieved on November 28, 2011.

(3)  http://www.xiaflex.com, retrieved November 28, 2011.

Bedwetting in the Older Child:

5 Oct

Punishable by death?

In August of this year, the Dallas Morning News reported that a 10-year old boy died in late July of dehydration after his parents deprived him of water to discipline him for wetting the bed. The boy’s father, Michael Ray James, 42, and his wife, stepmother Tina Maria Alberson, also 42, were arrested and charged with injury to a child causing serious bodily injury. Depending on the outcome of trial, sentencing and punishment, they could be imprisoned for up to 99 years for the crime.

The charge stems from the death of the boy after an autopsy revealed the child died from dehydration while being punished. Alberson’s bond is set at $150,000; James is $100,000. According to online reports, both are currently being held at the Lew Sterrett Justice Center. While the two had previously encountered problems with the child custody authorities, nothing had been proven to warrant removal of their children from them, according to reports.

Their son, Johnathan James, died on July 25. He wasn’t tied up or beaten as we often hear in child abuse stories. Instead, it seems the boy was forced to stand still for long periods of time, and not allowed anything to drink—not even a teaspoon of water, for five long days during the intense heat wave gripping Texas and The South throughout the summer. The James’ home does not have central air conditioning. And the child was forced to eat peanut butter, found stuck in his throat because of insufficient beverages upon his death and discovery by health care personnel upon autopsy.

At the time, Alberson told police the boy had complained of being hot and she had tried to cool him by putting him into a tub of cold water. Authorities initially thought the boy had died from heat exhaustion, but his death went unexplained until his autopsy revealed foul play. The boy’s grandmother is very concerned for the twin brother who saw his brother collapse and now wishes he had been able to sneak him a drink.

It’s not the first time we at the National Association For Continence (NAFC) have heard of a grandmother’s concern. In fact, I have personally spoken to grandmothers who telephoned our headquarters expressing serious concern about the physical and emotional abuse their grandchildren were being subjected to because of bedwetting. I have referred them, on occasion, to social services and other local authorities including the police.

It happens to be the #1 search term that brings people to our website, not for babies but for unresolved problems in older children and even young adults. Read what we have to offer in the way of guidance and information. Most parents are ill-informed and react with frustration, anger, or acceptance, none of which are helpful to the child.

Nocturnal enuresis, or bedwetting while sleeping at night, affects over 5 million children in the United States. In population-based cross-sectional studies on children between 6 and 12 years of age, a prevalence of 0.2-9.0% (daytime incontinence), 1.5-2.8% (combined daytime and nighttime incontinence), and 1.5-8.9% nocturnal enuresis, respectively, have been reported in published research. It is well known that nocturnal enuresis resolves over time. Every year 15% of those suffering from bedwetting become dry without treatment. But bedwetting also appears to run in families, and young people who suffer from bedwetting as children are more likely than others to have problems with incontinence later in life as adults.

Before discussing the treatment of nocturnal enuresis, there are two important things to keep in mind. First, children do not wet the bed on purpose. Second, most pediatricians do not consider bedwetting to be a problem until a child is at least six years of age. A recent study showed a significant communication breakdown between parents and doctors on this issue. While 80% of parents want healthcare providers to discuss bedwetting, most feel uncomfortable initiating the discussion themselves. Furthermore, 68% of parents said their children’s doctor has never asked about bedwetting at routine visits. Therefore, parents need to be more proactive by asking for help if they have a child who is wet at night. And they MUST be involved in the remedy. The most successful intervention strategies, with or without sophisticated bed alarms, require the parent’s involvement and positive reinforcement.

Bedwetting by the older child is a common and embarrassing problem that can greatly affect children and families. Life at summer camp, for the camper and the counselors, can be a disaster and is major problem summer camps are forced to address. It is neither the fault of the child nor the parent. Despite the frustrations that families have to endure, many parents do not raise the issue with their health care providers. The most important thing to remember is that with care and perseverance, nocturnal enuresis is a problem that can be successfully treated.

Nancy Muller, Ph.D.
Executive Director,
National Association for Continence

Nighttime Toileting and Osteoporosis

1 Jul

Despite the significant effort in public education messages and pharmaceutical advertising, osteoporosis-linked fractures have risen dramatically over the past decade.  According to the Agency for Healthcare Research and Quality (AHRQ) in the Department of Health and Human Services, the hospitalization rate of patients admitted for treatment of hip, pelvis and other fractures associated with osteoporosis increased by 55% between 1995 and 2006.  An estimated 10 million Americans suffer from osteoporosis, which causes bones to become brittle and subject to easy fracture.  Even worse, osteoporosis slows healing following fracture and can contribute to multiple fractures leading to excessive pain, disability and permanently impaired mobility, and eventually death.  Because osteoporosis is involved mostly in older adults, with 90% of hospitalizations for patients 65 and older, the increasing longevity of our country has only increased the likelihood of higher prevalence, all else being equal.

Couple this trend with the heightened risk factor for overactive bladder (OAB) accompanied by aging, and we are facing the perfect storm.  Overactive bladder, including symptoms of nocturia or being awakened more than once nightly to urinate, affects an estimated 33 adult Americans, with prevalence increasing with age.  Impaired mobility coupled with middle of the night toileting in the dark is an equation leading to disaster for millions.  And with increasing numbers of the elderly living along, the problem is only exacerbated.

Our country has to get smarter about the convergence of these risk factors and wiser about how to practice practical, preemptive intervention.  Yes, it’s important to have bone density screening and  for patients to be compliant with osteoporosis-prescribed medication.  However, it’s equally important to take steps to strengthen bone, with strength-building exercises, with supervised instruction and in a safe environment.  If OAB is in the equation, then a full-scale intervention with behavioral therapy including pelvic floor muscle exercises, bladder retraining, and dietary changes and possibly medication is called for.   And watch out for medications prescribed for other problems that can cause you to be unsteady on your feet or easily disoriented, as research shows a link between sedatives/narcotics and falls.  Even chronic pain has been found to increase the risk of falls in older adults.

If nighttime toileting and overactive bladder problems persist, there are other remedies including peripheral nerve stimulation and device implants for sacral nerve modulation.

We’ve got to wise up to the combination of factors and preempt the perfect storm before it comes to shore.

Nancy Muller, Ph.D.
Executive Director,
National Association for Continence

Sleepless Nights

23 Jun

Getting up every night to use the toilet?  Often more than once?  Waking once or more during the night to urinate is referred to as nocturia.  As we get older, we seem to get up more frequently.

Some causes are gender specific.  For example, nocturia in men is often linked to an enlarged prostate that blocks the flow of urine from the bladder.  Such men fail to fully empty their bladder during the day, sending themselves to bed with a partially full bladder that soon sends a wake-up call to be emptied. This is helpful to understand because getting the prostate enlargement diagnosed and treated may allow the symptoms of nocturia to all but disappear.  The onset of nocturia in women is generally linked to the consequences from childbirth, menopause, and even pelvic organ prolapse.

It is often difficult to separate the cause of awakening from the tendency to get out of bed, once awakened, to use the toilet.  If the problem is at least partly due to sleep disorders including sleep apnea and restless leg syndrome, these problems need to be investigated and treated separately.  Sometimes nocturia is a symptom of a greater medical problem that alters the way in which the body functions during sleep.  If the problem is excessive nighttime urine production, the first step is to look for the cause.  Targets include:

  • Diabetes
  • High blood pressure
  • Heart disease/Congestive heart failure
  • Vascular disease/Varicose veins/Swelling due to fluid accumulation in lower extremities

There may be steps you can take on your own (to read more, visit http://www.nafc.org/bladder-bowel-health/nocturia/)

  • Eliminating caffeine and alcohol from the diet, especially 3 – 4 hours prior to bedtime
  • Taking prescribed diuretic medications about 6 hours before bedtime
  • Minimizing all fluid intake 2 – 3 hours before bedtime, including foods with high water content
  • Avoiding strenuous exercise within 3 hours of retiring for bed
  • Avoiding engaging mental activity or stressful dialogue within several hours of bedtime
  • Turning off the television
  • Darkening the bedroom and sleeping with blinders
  • Kicking your pet out of the bed!

Of course……fall prevention is of major concern with nocturia.  That’s the next blog just around the corner.

New CDC Guide to Infection Prevention in Outpatient Settings

14 Jun

The Centers for Disease Control and Prevention (CDC) released in May its Guide to Infection Prevention in Outpatient Settings: Minimum Expectations for Safe Care.  Specific sections of the publication, with links to full guidelines and source documents, are devoted to needed resources including staff education and training as well as standards for the monitoring and reporting of infections.  Existing standard precautions are, of course, included, such as hand hygiene, personal protective equipment, injection safety, and cleaning and disinfection of environment and medical equipment.

Outpatient settings are the CDC’s focus because of the rapid shift from inpatient to ambulatory care settings.  Three-quarters of all surgeries in the U.S. are now performed on an outpatient basis, and more than a million cancer patients receive outpatient chemotherapy, radiation therapy or both.  Kidney dialysis is outpatient and so is a significant portion of all diagnostic procedures across service lines.

One such section is a separate guideline for prevention of catheter-associated urinary tract infections (CAUTI).  The document updates and expands the original CDC Guideline published in 1981.  To evaluate the evidence in the intervening 28 years on preventing CAUTI, the authors examined data addressing three key questions and related sub-questions:

  1. Who should receive urinary catheters?  When is catheterization necessary and who is at risk for CAUTI?
  2. For those who may require urinary catheters, what are the best practices in terms of approaches, types of catheters and collection systems, management techniques, and quality improvement programs?
  3. What are the best practices for preventing CAUTI associated with obstructed urinary catheters?

Providers in the acute care hospital setting are strictly instructed to insert urinary catheters using aseptic technique and sterile equipment.  Routine use of antiseptic lubricants is not necessary.  However, in the non-acute care setting, clean (i.e., non-sterile) technique for intermittent catheterization is considered an acceptable and more practical alternative to sterile technique for patients requiring chronic intermittent catheterization, although the CDC recommendations state that further research is needed on optimal cleaning and storage methods for catheters re-used for clean intermittent catheterization.  This recommendation is based on category level IA evidence (p. 12).  Hydrophilic catheters are considered preferable to standard catheters for patients requiring intermittent catheterization, although this was based on very low level evidence.  Silicone might be preferable to other catheter materials, although this statement is not definitive.

Although there is not a cross reference found in the CDC’s publication to the 2009 policy change announced by the Centers for Medicare and Medicaid (CMS) commencing coverage for single use, sterile catheters, it is this patient advocate’s opinion that those at highest risk of infection and those already witnessing recurrent UTIs (four or more a year) should be provided access with insurance coverage to sterile devices regardless of the CDC’s recommendations.

Practical instructions are included as well.  Unobstructed urine flow is to be maintained by keeping the catheter and collecting tube free from kinking and keeping the collecting bag below the level of the bladder at all times.  The bag should not be rested on the floor to avoid contamination.  The collection bag should be emptied regularly using a separate, clean collecting container for each patient and splashing should be avoided.  The drainage spigot should not be put in contact with the non-sterile collection container.

The CDC publication also attempts to dispel myths and unsupported actions.  For example, routine irrigation of the bladder with antimicrobials is not recommended, nor is routine instillation of antiseptic or antimicrobial solutions into urinary drainage bags (p. 14). Nor should the periurethral area be cleaned with antiseptics with the goal of preventing CAUTI while the catheter is in place.  Routine hygiene during daily bathing or showering, including cleansing of the meatal surface, is appropriate and considered standard care (p. 13).

Particularly for men with serious urine retention resulting from a distended bladder caused by an enlarged prostate gland blocking urine flow through the urethra, these latest guidelines are worthy of study so that advice and product guidance from providers is consistent with these recommendations.  Those facing catheterization while hospitalized should be sure the facility’s practices are compliant with this CDC publication.  Every provider should practice with quality improvement programs that include a system of alerts and reminders to patients assessing the need for continued catheterization, guidelines and protocols for nurses to remove unnecessary urinary catheters, education and performance feedback on hygienic practices, and guidelines in place for catheter management after placement.

JAPAN RELIEF: CONTINENCE IN SIGHT

5 Apr

Just weeks have passed since the March 11th earthquake and tsunami in northeast Japan – the fifth worst recorded in world history. Today, the official death toll exceeded 11,000, with numbers of the still missing and unaccounted for exceeding 16,000. Those missing were likely swept out to sea, so American military forces are assisting in the search for bodies offshore. Not only is the ensuing disaster surrounding local nuclear power plants uncontained and ill-defined, its impact on the future lives of Japanese remains totally undetermined. Those who haven’t already had their homes destroyed have been temporarily relocated with the others as far away as 50 miles from where they had been living. Farmers are being instructed to throw out crops and not replant until further notified, for fear of food being contaminated by radioactive elements released from the power plants. Photos and videos of the physical devastation are unbelievable. While there is virtually no limit to the list of losses and therefore needs of the Japanese people directly affected in this region – beginning with uncontaminated water, power, and warm shelter – the immediate list extends to medical supplies for those with a variety of conditions and illnesses. The obvious is access to medications or emergency surgery especially for injuries sustained during the earthquake or flood waters. The less obvious is medical products and devices for those with chronic diseases or circumstances, such as people with multiple sclerosis or spinal cord injuries or SCI disorders.
Specifically, the National Association For Continence (NAFC) has been alerted to an emergency relief effort being organized by the Japan Continence Society (JCAS) because the following kinds of supplies are needed urgently: urinary catheters for daily self-catheterization, urine drainage bags for indwelling catheters, indwelling urinary catheters, prepackaged disposable enema solutions, laxatives, portable toilets, and disposable nonwoven adult absorbents. Should supplies internal to the country run short, NAFC has pledged to contact U.S. manufacturers of these products to secure donated supplies for the stricken areas of Japan through their distributors. In early April, JCAS will be in northeast Japan setting up relief centers to get such supplies to individuals so desperate for help in their personal, daily bladder and bowel management at a time when the normal outlets are destroyed or non-functioning.
Additionally, we are working at NAFC to help JCAS connect with CNN to be identified as a legitimate relief outpost in need of donations to underwrite their outreach to earthquake and tsunami victims, many uprooted from their homes and from their local outposts for supplies. We have advised them to established a PayPal account to receive donations from individuals online by credit card, NAFC will post this information on our web site home page latest news.
Regardless of your religious faith or personal, moral code in life, all of us as citizens of the world are called to lovingly minister to the needy. This calling is without borders. Stay in touch via nafc.org or send any questions or comments you have to us in this international appeal.
Thanks for caring about continence. Thanks for connecting the globe over with those facing the very same, daily concerns as you. Thanks for your consideration and generosity.

Nancy Muller, Executive Director
National Association For Continence
http://www.nafc.org

Involved in Respite Care? Or Just a Daily Caregiver?

5 Apr

In mid-March, USA Today reported that the number of unpaid caregivers for loved ones with Alzheimer’s disease (AD) is 37% more than last year1. This translates into nearly 15 million unpaid caregivers who are providing routine care in a private home environment to someone with Alzheimer’s and other forms of dementia. That’s because there are now an estimated 5.4 million people living with such diseases and conditions in the U.S. alone. In fact, AD is the sixth leading cause of death in the U.S. and the only one among the top ten that has no prevention or cure, according to the Alzheimer’s Association.
It’s easy to talk big picture when we hear about the estimated 17 billion hours of unpaid care time valued at over $200 billion annually. But the sad reality is that each and every hour – each and every individual – represents a single, unique burden of untold stress, pain, and sorrow.
We must be there to shoulder the load. It is our legacy as Americans and it is our human responsibility. Supporting respite care in a local church or other not for profit with our financial donations and gifts of time is but one pathway. There are many other, indirect forms of help that can be provided because there are so many realms of need. There is physical maintenance and repairs to the person’s home, gardening and lawn maintenance around the house, cooking, shopping, and even providing hands on care such as feeding, entertaining, and just escorting on walks.
If we are involved in full-time, part-time, or simply intermittent time as a family friend or relative, it is likely we will be involved with toileting and even encounter “accidents” a person with AD experiences. How do we react? It’s important to respect the dignity of the AD person. We need to watch for nonverbal cues that a person with AD is sensing the need to urinate or have a bowel movement, as they may begin tugging at a zipper or unbuckling a belt. Learn to look for facial cues sending such messages. There may not be much warning. Get them in simple clothing, looking for elastic waistbands instead of belts and Velcro fasteners instead of buttons or even zippers. Even those with severe dementia and impairment often do care when an accident occurs. Reassure them quietly that they shouldn’t worry and that everything will be fine. Remember to speak in simple, short sentences, such as “sit here” once reaching the toilet. Agitated or suddenly raised voices can be unsettling and even alarming to them. And if clothing is soiled, change it and carefully cleanse the skin and pat it dry afterwards. Use the special soaps and moisturizers that condition the skin and help prevent rashes. Remember that older skin is always drier and more subject to chafing, irritation, and even tears. If absorbent products are needed, carefully select them to find the right size and the best fit. Look for high absorbency to draw the urine away from the skin until the product can be changed. NAFC can direct you to resources to help you with the selection of high quality, high performance, affordable options. Cheap, inferior product only raises the risk of skin damage and leakage that soils and stains upholstery and outer garments. Above all, be patient – with the person who has AD and yourself!
Nancy Muller, PhD
Executive Director – National Association For Continence

Marcus MB, March 15, 2011, Burden climbs with Alzheimer’s cases, USA Today,7A.

Price’s Passing for HC

22 Feb

In January 2011, Reynolds Price, distinguished James B. Duke Professor of English at Duke University and longtime member of the American Academy of Arts and Letters, passed away at age 77. He had authored dozens of books, inspired thousands of students as well as colleagues and others on and beyond the Duke campus, and was revered as a highly skilled novelist, memorable Southern storyteller, and unmatched creative writer. A North Carolina native, Price graduated summa cum laude from Duke in 1955 and returned in 1958 after studying in Oxford as a Rhodes Scholar, with peers as notable as W. H. Auden, as a Duke University faculty member for the next 53 years.
Duke President Richard H. Brodhead commented upon his passing, “Reynolds was a part of the soul of Duke; he loved this university and always wanted to make it better. We can scarcely imagine Duke without Reynolds Price.”1
Price became confined to a wheelchair in 1984 when a cancerous tumor in his spinal cord left him paralyzed from the waist down. “The fact that my legs were subsequently paralyzed by 25 X-ray treatments … was a mere complexity in the ongoing narrative which God intended me to make of my life,” he was quoted as saying in an interview with a local newspaper reporter years later. Price’s account of cancer survival is captured poignantly in his 2003 book, “A Whole New Life: An Illness and a Healing.” Having read this book shortly after it was published, I retrieved it from my bookshelf when I heard the announcement of his death on NPR morning news because I wanted to reread Price’s account of his “mid-life collision with cancer and paralysis”. It is one man’s record – through a ten-year recollection – of how a person confronts a life-altering trial of unimaginable proportions and comes out of the experience transformed, with a new but very different life. He offers the book to those facing their own trials, those caring for someone who is undergoing such turmoil and stress, and those of us awaiting our own, yet unknown “devastation”. I highly recommend it to anyone.
Some people who lose control over their bladder or bowels may have found themselves in such circumstances because of a single event, such as in the immediate aftermath from surgical removal of a cancerous prostate. One day, you feel fairly normal as you’re getting along with life, and the next day you’re soiling your clothes because of the surgical trauma inflicted upon tissue, vessels, and nerves. For many others, it is not so sudden. The symptoms come on gradually, almost invisibly, until one day you realize that the symptoms of urgency or leakage are taking over your life instead of you controlling it. Knowing how others have maneuvered the road to wellness and mastery over symptoms, even if it’s just to be able to manage the symptoms rather than eliminate them, requires patience and perseverance. But it also takes the coaching and encouragement of others. In this book, Price writes of his friendships tenderly because they comfort him, they energize him, and they uplift him.
Online forums do that too. Find one that works for you. Let NAFC connect you. On the NAFC web site, there is a group just for men and another one for women. There’s even one just for those concerned with bowel control issues. It’s a private meeting place where you can get and give advice to comfort, energize, and uplift others. Working together, you can discover a whole new life, just as Reynolds Price did.
Nancy Muller, PhD

1 http://news.duke.edu/reynoldsprice/, accessed online 27 January 2010

Tomorrow’s Wellness Professional

22 Feb

A most extraordinary effort is afoot aimed at establishing a whole new category and kind of professional: a “Wellness Professional.” The effort represents an initiative, still very much in the concept creation stage, of the International Council on Active Aging (ICAA), on whose 2020 Visioning Board I serve. The Canadian-based organization is one of the most exciting, “out there” groups on the map. It represents an eclectic, interdisciplinary team of fitness coaches, physiologists, doctors, teachers, public health educators, patient advocacy organizations, community leaders and others, all with the same mission to help give all people the tools they need to age with good health.
On a teleconference call today, we brainstormed how to define the qualifications and role of a Wellness Professional. It is definitely that of a coordinator well-versed in multiple dimensions of aging, including social, spiritual, physical, and other realms. It is viewed as a central player in a hub and spoke system. But over time, it is conceivable that the role may pass from a single individual who works as a resource manager and communicator to that of a process or an electronic algorithm that directs, guides, and even drives intervention to insure an older person’s optimal wellness. It is also viewed as being community-based, as opposed to being institutionally based. In a retirement community, such a player may even be considered the CEO!
Under leadership of the Obama Administration, last year’s healthcare reform legislation clearly spotlighted a role for preventive services. But they were cast in the context of a medical model, namely doing such things as routine blood tests as checks for keeping diabetes under control or regular blood pressure checks for managing hypertension and thus preventing strokes. And they require the services of a medically trained healthcare provider. What ICAA’s Visioning Board is conceptualizing is a professional who interfaces with healthcare providers and links with information in the medical record but who may not necessarily be a trained provider of healthcare services. The thinking is that this individual will know much more about fitness, nutrition, and spiritual healing than the large majority of healthcare providers. The Wellness Professional will also be sensitive to cultural issues and concerns that affect the myths, health-seeking behaviors, and priorities of certain individuals, as well as be knowledgeable about gender differences that affect a person’s wellness, as do their economic status and personal health literacy.
In an era that is focusing increasingly on patient centeredness and moving away from hospital-based healthcare and physician centeredness as our healthcare delivery system has traditionally been structured, it’s time for each of us individuals to own our wellness, especially as we grow older and begin experiencing the effects of the aging process. Rather than waiting for our primary care physician to instruct us in how to control our cholesterol through diet and exercise, it’s time to seize the challenge and step into it, avoiding overreliance on medications whose costs and side effects may sap one’s energy and resources. It’s about exercising smartly as we age and on age-appropriate exercise equipment. It’s about always wearing sun block and a hat and sunglasses, to protect our skin from cancer and our eyes from cataracts.
Taking ownership means taking control. It means discovering that you have choices and claiming access to them. It means maintaining your freedom and your independence. And until there are credentialed Wellness Professionals to assist you, all of this may require you to tackle this on your own. You can start by going to Oregon State University’s extended online campus to master aging well.
The mastery of aging well also means that you don’t just accept your symptoms as a natural consequence of aging, like one third of Americans do. If bladder and bowel control problems are robbing you of your quality of life as you age, look for tips on safe toileting, fall prevention in the night, and related topics among NAFC’s articles. Or just visit http://www.nafc.org and search with the single word “aging” in the search toolbox on the home page. And then seek interventions towards wellness.
Yes, one day there will be Wellness Professionals to inspire and coach us. Until then, take ownership and take heart.

Nancy Muller, PhD

Signs of Prolapse? Are You At Risk?

2 Jul

Prolapse in women has been associated with many factors. Studies have implicated pregnancy, aging, hormonal status, obesity and weight gain, chronic pulmonary disease and smoking, genetic factors, congenital anatomic factors, connective tissue abnormalities, and acquired neurological abnormalities. However, the strongest relationship exists with childbirth and its effects on the muscular and tissue support structures of the pelvis.

First, let’s review what is really happening anatomically.  Pelvic organ prolapse is defined as the descent of the top of the vagina or cervix and may involve the collapse of the front or back walls of the vagina.  When this support is compromised, compartmental structures, such as the bladder, uterus, or lower intestine, can move out of their proper position and even protrude from the body’s outlet in later stages.  Hence, the term “fallen bladder.”  There’s a feeling of perineal pressure, sometimes back pain, and urine retention if the bladder outlet is blocked.

 I like to think of our female pelvic organs as the solar system.  Each organ has its place relative to the other organs and structures.  Collagen and connective tissue help to keep them in orbit.  If one planet were to suddenly disappear or shift its orbit, a corresponding shift in positions of the remaining planets would likely occur.  So it is with organs of a woman’s pelvis.

Certain factors can throw those planets out of orbit.  Although there’s much more for us to learn from future research, how can you best protect yourself against the risk of experiencing prolapse – or allowing mild prolapse to worsen -  based on what we do know?

  • Follow a faithful, lifelong routine of doing pelvic floor muscle exercises, both short and long contractions, before, during, and after pregnancy.
  • If you’re carrying excess weight, lose it.  If you’re at your ideal weight, maintain it.
  • Avoid heavy lifting.
  •  Engage in regular exercise that minimizes the downward forces of gravity, e.g., swimming over gymnastics
  •  If you have a chronic cough, seek treatment for it.  If you smoke tobacco, stop. Eat a high fiber, low fat diet and stay hydrated to avoid constipation.

Find out more, including treatment intervention, visit our web site www.nafc.org or call us at 1.800.BLADDER

Nancy

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