We’re thrilled to be able to share a story from one of our many Men’s Liberty users. John’s incontinence has been a long term challenge and he has been such a wonderful advocate for the impact that Men’s Liberty has had on his life.
Check out his story below…
Who I Am: My name is John Powell and I was born in 1948. At the age of 4 years, I contracted polio, and spent the next two years in an iron lung. After I recovered and grew older I tried sports, but due to the after-effects of polio, my physical condition was weakened. I was unable to compete at a satisfactory level. Over the years I have learned not to quit at anything I attempt. When I first began to participate in wheelchair sports, it was the third major factor that positively impacted my life. The first being my loving wife who refuses to allow me to even consider self-pity in any form, and the second being my two sons who encourage me, and for whom I do my best to be an example. My family is the first of many reasons I compete.
My Disability: Spinocerebellar Atrophy with Ataxia, Post-Polio Syndrome, and Bipolar Disorder. All of which are being treated at the Veteran's Administration Hospital in Dallas.
How These Disabilities Affect My Life
The Spinocerebellar Atrophy with Ataxia affects my balance severely. I can only walk a very short distance without aid. If I try to walk for example, across the street to my neighbor's house, my wife or sons have to aide me or I will fall unless I use my wheelchair, which my physician prescribed for me. There is no cure for this disease, and with time it will only worsen. Only medical support is the qualified treatment for this condition.
The Post-Polio Syndrome has caused my muscles to weaken along with degeneration and pain in my joints. Post-Polio Syndrome is a condition that affects Polio survivors several years after initial recovery. It is not contagious, and only those who have contracted the polio virus are at risk. There are no effective medicinal treatments available. Mobility aids, management strategies, and lifestyle changes are the recommended treatments
Bipolar Disorder, before I sought treatment, disrupted my life with low-self esteem, decreased sleep cycles, unfounded guilt, and irritability. With medication, my quality of life and relationships with others has improved exponentially.
My Current Activities
- Texas Regional Games
- West Virginia State Wheelchair Games
- Southwest Wheelchair Games in Myrtle Beach, S.C.
- Endeavor Games in Edmond, OK.
- Sooner State Games
- PVA Wheelchair Games
- East Texas Wheelchair Games
- Valor Games in Chicago
At the Paralyzed Veterans Wheelchair Games in Richmond, Virginia in 2012 I met some men from Men’s Liberty. I spoke to them about my activities and the incontinence problem I have on a continual basis every day of my life. They told me about their product and how it can replace catheters. The Men’s Liberty system has helped me even in my different sports because I don't have to worry about using the bathroom when I compete. It has helped me in my Air Rifle events because when I get into position I can stay there for the 2 hours of the event. In my hand cycling, I can ride the route and not worry about using the bathroom like the able body runners do. My times have gotten better and I am not embarrassed because I have gone to the bathroom on myself.
Thank you Men’s Liberty for making me happier and more self sufficient.
A big thank you to John for sharing his story! We’re passionate about helping people live their lives to the fullest, knowing that incontinence doesn’t have to keep you down. Get out, get active, get Men’s Liberty!
This week Men’s Liberty is exhibiting at the Combined Sections Meeting of the American Physical Therapy Association. We’re talking to physical, occupational and rehab therapists about how Men’s Liberty can improve their patient’s quality of life and aid them in gaining independence after a devastating injury.
In that spirit, I wanted to share some of the top questions we’ve gotten from physical therapists so far this week.
1. Can Men’s Liberty be used in hospitals immediately after an injury and/or during therapy?
This depends on the extent and severity of the injury and any ongoing medical procedures being completed. Generally, Men’s Liberty is appropriate for any man without urinary retention regardless of whether they are in a hospital bed or in their home. However, urinary retention can occur after spinal cord injury and require indwelling or intermittent catheterization. Men’s Liberty does allow intermittent catheterization with the device in place so once a regular intermittent catheter regime has been established, Men’s Liberty can be used to manage overflow incontinence.
2. Will the Men’s Liberty stay in place when my patient is being active and sweating, for example during therapy, sports competitions or other strenuous activity?
Absolutely! Men’s Liberty has a proprietary hydrocolloid adhesive which will attach securely to the skin for 24-48 hours. The hydrocolloid will turn milky white as it absorbs moisture and is ready to remove. The only caveat is that it MUST be attached to dry skin when first applying. We generally recommend that men change their Liberty daily or along with their shower routine. If continual leaking is a problem, then there are supplemental products available, such as Cunningham Clamps which can temporarily stop dribbling or leaking in order to allow patients to apply the Men’s Liberty and get a secure seal.
3. I do a lot of work with veterans. Is it available in the VA?
Yes! Men’s Liberty is available on the GSA Formulary so patients should be able to have their local pharmacy order it.
4. Why haven’t I heard of this before?
Men’s Liberty is the best kept secret in the urological sector. It was developed in 2006 with the goal of solving one of the most pervasive health issues today, urinary incontinence. We are inspired by the impact quality healthcare has on the lives of the people we serve and empathize with the challenges that patients face when managing activities of daily living.
Men’s Liberty can help them overcome their challenges with comfort and dignity. More than 1 million Men’s Liberty units have been sold without a single reportable adverse event caused by Men’s Liberty, including UTI or skin injury. We are very proud of that!
And if you’re in San Diego, come check us out at the San Diego Convention Center! We’re raffling off a 32” Flatscreen HD TV!
Since we’re at the American Physical Therapy Association conference this week, I thought it was the perfect time to share some great information on the importance of physical therapy after spinal cord injuries. We’re thrilled to welcome Matt Anton as a guest blogger!
When you are treating a person who has suffered a spinal cord injury, the biggest focus is on regaining function and independence so that patients can be active, healthy and happy, despite the challenges they face. Among clinicians, it's widely accepted that the best results come from using a variety of treatment methods and that the more you put into your rehab, the more you get out!
What Happens After A Spinal Injury
When you suffer a spinal injury, you need to allow enough time for the injured muscles and the bones to heal. This is why there is usually a phase of immobilization that allows the bones and the muscles to repair themselves. While this is going on, your doctors usually prescribe medication which will encourage faster healing as well as provide nutritional supplements like vitamins and minerals to speed up the healing process.
Rehabilitation After Injury
When the rehabilitation process starts, physical therapists along with occupational therapists, health care professionals and psychologists work as a team under the coordination of a specialist who will set goals for the patient’s recovery and develop a plan for the patient’s discharge. In the acute care phase the physical therapists usually focus on the respiratory status of the patient. They do this in order to prevent indirect complications as well as maintain a range of motion activities and keep the muscles active.
Complexity Of Neurological Impairment
When spinal injuries occur, there are often neurological impairments and/or damages involved. The level of impairment differs in different cases. The higher up the spine the injury occurs, the greater the challenges. Often the level of neurological impairment is such that some of the ventilator muscles are impaired and that puts more stress on muscles that are unaffected. Most spinal injury patients suffer from reduced lung capacity as well as reduced tidal volume. Thus, the therapists at such a stage teach the patients accessory breathing methods and techniques.
Method Of Physical Therapies
Physical therapists may also assist such patients in learning how to cough as well as clearing the secretions that come up the throat. The stretching of the thoracic wall is done in a way that is taught to such impaired patients. Many of these patients are provided abdominal support belt as it becomes necessary. The amount of the time that a patient remains in an immobilized condition depends on the spinal cord injuries that they sustain. Physical therapists need to work with such patients in order to prevent any complications that may arise due to such immobilized state. Other complications that arise from immobilization are osteoporosis and muscle atrophy. That, in turn, increases the risk of fractures of the femur and the tibia.
Importance Of Physical Rehabilitation
To prevent such conditions during the immobilization period, there are many kinds of electrical stimulation techniques that are used in order to achieve effective results. The intensity and the frequency as well as the duration of the stress that is given to the bones is decided by the therapist. Thus, physical therapy for spinal injury patients is essential. Even though they are painful at certain stages especially during the phase of immobilization, one needs to keep up such therapies in order to reduce the risk of related damages to other areas of the body.
Getting Out of the Hospital
Rehabilitation therapy involves relearning old skills and developing new ones. Patients will learn to use new equipment including wheelchairs, transfer benches and shower chairs. This may also include special equipment for bladder or bowel management. During this learning phase it is critical to set goals for yourself and your recovery that allow you to work toward resuming your previous lifestyle and getting back to the routines and activities you enjoyed prior to your injury.
Author Bio:Matt Anton is an author who contributes articles on different healthcare forums. He also writes articles on a variety financial matters. For more articles from Matt, check out: http://paymentsavvy.com.
Are you a blogger looking for opportunities to share your work? Men's Liberty is looking for guest bloggers to provide great new content featuring spinal cord injuries, incontinence and your personal stories. We'd love to feature you! If interested, email: Swoodward@mensliberty.com
**Please note: Men's Liberty does not endorse or support any products or services mentioned in the above article or associated links**
Surgery Ranks as the Most Cost-Effective Type of Treatment, According to UCSF-Led Study
According to a new research published by the University of California, surgery is the best treatment for both high and low risk prostate cancers. Researchers completed the most comprehensive retrospective study ever conducted comparing how the major types of prostate cancer treatments stack up to each other in terms of saving lives and cost effectiveness.
Appearing in the British Journal of Urology International, the work analyzed 232 papers published in the last decade that report results from clinical studies following patients with low-, intermediate- and high-risk forms of prostate cancer who were treated with one or more of the standard treatments – radiation therapy, surgery, hormone therapies and brachytherapy.
The analysis shows that for people with low-risk prostate cancer, the various forms of treatment vary only slightly in terms of survival – the odds of which are quite good for men with this type of cancer, with a 5-year cancer-specific survival rate of nearly 100 percent. But the cost of radiation therapy is significantly more expensive than surgery for low-risk prostate cancer, they found.
For intermediate- and high-risk cancers, both survival and cost generally favored surgery over other forms of treatment – although combination external-beam radiation and brachytherapy together were comparable in terms of quality of life-adjusted survival for high-risk prostate cancer.
“Our findings support a greater role for surgery for high-risk disease than we have generally seen it used in most practice settings,” said urologist Matthew Cooperberg, MD, MPH who led the research. Cooperberg is an assistant professor of urology and epidemiology and biostatistics in the UCSF Helen Diller Family Comprehensive Cancer Center.
Many Treatment Options, but Few Cost Analyses
Localized prostate cancer accounts for about 81 percent of the quarter-million cases of prostate cancers that occur in the United States every year, according to the National Cancer Institute. It is defined by tumors that have not metastasized and spread outside the prostate gland to other parts of the body.
There are multiple types of treatment for this form of the disease, including various types of surgery (open, laparoscopic or robot-assisted); radiation therapy (dose-escalated three-dimensional conformal radiation therapy, intensity-modulated radiation therapy and brachytherapy); hormone therapies; and combinations of each of these. Many men with low-risk prostate cancer do not need any of these treatments, and can be safely observed, at least initially.
Treatment plans for localized prostate cancer often vary dramatically from one treatment center to another. As Cooperberg put it, one person may have surgery, while someone across town with a very similar tumor may have radiation therapy, and a third may undergo active surveillance. All treatment regimens may do equally well.
“There is very little solid evidence that one [approach] is better than another,” said Cooperberg. The motivation for the new study, however, was that there are also few data examining the differences in terms of cost-effectiveness – the price to the health care system for every year of life gained, with adjustment for complications and side effects of treatments.
The new study was the most comprehensive cost analysis ever, and it compared the costs and outcomes associated with the various types of treatment for all forms of the disease, which ranged from $19,901 for robot-assisted prostatectomy to treat low-risk disease, to $50,276 for combined radiation therapy for high-risk disease.
The study did not consider two other approaches for dealing with prostate cancer: active surveillance, where patients with low-risk cancer are followed closely with blood tests and biopsies and avoid any initial treatment; and proton therapy, which is much more expensive and has already been shown in multiple studies not to be cost-effective, said Cooperberg.
The article, “Primary treatments for clinically localised prostate cancer: a comprehensive lifetime cost-utility analysis” is authored by Matthew R. Cooperberg, Naren R. Ramakrishna, Steven B. Duff, Kathleen E. Hughes, Sara Sadownik, Joseph A. Smith and Ashutosh K. Tewari. It was published online on Dec. 28, 2012 by the British Journal of Urology International. The article can be accessed at: http://dx.doi.org/10.1111/j.1464-410X.2012.11597.x
This study adds to our knowledge and will hopefully assist doctors and patients in choosing the right treatment option for them. Unfortunately, from our perspective, one key area is missing from their assessment… complication costs. Surgery is proving cheaper for many men; however, surgery comes with risks and costs that are sometimes hard to quantify.
According to the New York Times Health Guide, the main complications from radical prostatectomy are urinary incontinence and erectile dysfunction. Other complications include the usual risks of any surgery, such as blood clots, heart problems, infection, and bleeding.
Urinary Incontinence. Urinary incontinence is a common complication. When the urinary catheter is first removed following surgery, nearly all patients lack control of urinary function and will leak urine for at least a few days and sometimes for months. Normal urinary function usually returns within about 18 months. A percentage of men will continue to have small amounts of leakage with heavier exertion or possibly sexual activity. If incontinence persists beyond a year, patients may require drug therapy or surgery.
Erectile Dysfunction. Erectile dysfunction after radical prostatectomy is caused by nerves that were damaged or removed during the surgery. Virtually all men will have problems with erectile dysfunction after surgery. It can take up to one to two years to recover erectile function after surgery. Because seminal glands are removed along with the prostate gland during surgery, men who regain sexual function will not produce semen during orgasm (“dry ejaculation”).
With the use of effective nerve-sparing techniques, men who were sexually active before surgery and are involved in an ongoing relationship seem to have a better chance of returned sexual function. Drugs such as sildenafil (Viagra) may help some men regain erectile function. Use of these drugs three times a week accompanied by sexual stimulation is now commonly recommended. Other treatments for erectile dysfunction (alprostadil injections, vacuum devices, penile implants) may also be options.
What’s best for you is a complicated balancing act, weighing risk against potential reward and a good amount of wishful thinking and guess work. The men we talk to are broadly post-surgery and dealing with long term incontinence. And we’re privileged to offer them a better alternative than pads, diapers and condoms that allows them to get back to living life to the fullest.
Prostate cancer is the second most common cancer among men, with more than 250,000 new cases diagnosed each year. The only thing I know for certain is that this debate is far from over.
What are your thoughts? What was your experience? Share your story below!
January is International Quality of Life Month. This first month of the year symbolizes a new beginning and is a great time to reflect on the quality of your life and its purpose. While evaluating your quality of life, you may think about your relationships, community, work, school, finances, health, fitness, spirituality or other parts of your life.
In honor of Quality of Life month, we’re featuring a host of questions from Men’s Liberty users and potential users about how incontinence impacts your quality of life and what Men’s Liberty can do to improve men’s quality of life right now.
1. How does incontinence affect quality of life?
Incontinence can have a huge impact on your life; it is associated with depression, social isolation, health problems and infections. So it’s important to get it under control and get back out there in the world!
Once you’ve have mastered the mechanics, set goals on how you can remain active. Make a schedule and establish routes with available restrooms. Try finding a support group because life is more pleasant when you can share your challenges with other people who understand. Exercise as much as you can. Create a daily routine involving moderate physical activity and make it permanent.
The typical response when dealing with urine control is to cut back on social activities. This is understandable until you learn to manage it. But that’s the key – manage it; then get out and live life to the fullest.
2. Can my incontinence have an impact on my loved one’s quality of life?
If you need help managing your urine, it’s important to create as much free time for your spouse or companion as possible. Tying caregivers to your bathroom schedule makes it difficult for them to get a break. Choosing a urine management option that empowers you and does not require frequent assistance is preferred. Alternatively, plans may include employing a personal caregiver, at least on a part-time schedule to provide respite assistance.
3. I know there isn’t a magical solution, but is there at least a way to reduce the impact of my incontinence on my life?
Sadly, there isn’t one magical secret to making it all go away. If there was, I would be a RICH woman I assure you (hint: I’m not). The best advice I can give you is two things:
4. My patient/loved one is incontinent but is embarrassed to discuss it with their doctor. It’s making them stay home and hurting their social life. How can I talk to them about management products without causing undue embarrassment?
- Be prepared. Plan ahead. Before your go out make sure you have enough supplies to last through the day. If you’re travelling make sure you have enough supplies and some spares. Make sure to carry an extra set of clothes, plastic bags for wet clothes, wet wipes and baby powder in a small bag that you can keep with you. No one ever wants to have an accident but being prepared can mitigate a lot of your worry. Whether it’s a long car ride or a bumpy flight – it’s always best to be prepared.
- Find the right product for you and stick with it. High maintenance times aren’t the time to be trying something new at the last minute. There is usually a learning curve involved with new products and it's best to try those out when you have some quiet time to monitor and respond if something doesn’t work quite as planned. This is certainly something we advocate with our product. Men’s Liberty has a bit of a learning curve for your skin because it absorbs all the excess moisture in your skin that has built up from using diapers and pads. That means the first one won’t last 24 hours. It takes about 3 back-to-back applications to get the full wear time of the product. Knowing that in advance allows you to plan and stay in control.
What's most important in this discussion is to be sensitive, to listen to your patient/loved one and don’t get accusatory or defensive. This is a difficult conversation to have. Here are a few tips:
- Even in a well-established relationship, it can be hard to find a way to discuss incontinence. But experts say you should bring the subject up with your partner when you're far away from the bedroom door. Waiting until intimacy is imminent puts pressure on both of you. Instead, find a time when you're both relaxed and feeling positive before you broach the topic.
- It can be tempting to talk about difficult subjects over the phone, or via email, but there is much more scope for misunderstanding there as well. It's easy to misinterpret silence as awkwardness, or confusion as disapproval and being face-to-face is the best way to avoid those problems.
- The best response will likely vary based on your relationship with the person. The best default is just to show no embarrassment yourself. If you treat it as a matter of fact thing that has to be dealt with then they will likely follow your lead. Avoid joking unless you’re really secure in your relationship with that person as it’s easy to cause offense about such a sensitive subject.
Travelling with a wheelchair can be a challenge. But with a purchasing power of more than $220B per year and a combined income of more than $1 trillion - travel agencies, airports and tourist destinations are keen to get a piece of the pie.
In 2002, disabled individuals took 32 million trips and spent more than $13.6 billion on travel – $4.2 billion on hotels, $3.3 billion on airfare, $2.7 billion on food and beverage, and $3.4 billion on retail, transportation, and other activities,” according to a Harris Poll conducted in conjunction with Open Doors Organization and the Travel Industry of America.
The study said disabled travelers would double their spending if some minor amenities were made available. At the top of the list were meet and greet programs at airports, preferred seating on airplanes, hotel rooms closer to amenities, and employees who go out of their way to accommodate guests with disabilities.
The latest in a string of educational marketing projects comes from Vancouver International Airport (YVR) in British Columbia. They have partnered with SCI BC to launch a series of videos focusing on different aspects of travelling for people with disabilities.
A panel of expert travelers with physical disabilities who have collectively explored more than 80 countries spanning every continent provided the travel tips. The first of the videos can be seen below and cover every step of the airport experience.
Checking In - Spinal Cord Injuries BC from YVRAirport on Vimeo.
We’ll share other videos as they are published. In the meantime, check out our travel tips for getting the most out of your accessible vacation!
Men’s Liberty has been privileged to be a Mission: ABLE partner and supporter of the National Veterans Wheelchair Games which are taking place in Tampa in July 2013. We’ve learned SO much from these inspiring athletes. And every time I talk to the competitors they give me new reasons to believe in the resilience of the human spirit. They speak with passion and conviction about the impact that adaptive sports have had in their life. Whether you’re an old hat or still a bit green, we’ve heard your stories and wanted to share the top 5 ways you say that adaptive sports have changed your lives. Have additional ways – let us know in the comments!
The stories below are from a variety of individuals, including veterans and civilians with spinal cord, traumatic brain and other injuries.
#1 – "Today, I am only on three different medications (down from 15) because of skiing. I have had the same coaches for the last three years and they have seen fast and unbelievable changes in me with my TBI."
Spc. Joel Hunt is an army veteran with a Traumatic Brain Injury who competes as an Alpine Skier.
"When I came home I spent one year in a wheelchair feeling helpless. I was always the man that provided for my soldiers. And now I had to swallow my pride and ask for help. When my parents came to take care of me they constantly motivated me by getting me out of the house. I was lucky because a lot of soldiers do not have that support system. I am from Kokomo, a small town in Indiana and I had never skied before in my life. What I didn't realize is that skiing would change my life. In February 2008, I started getting out of my wheelchair because of my dizziness and my blackouts due to overheating. Plus, I didn't have enough control in my legs due to numbness and I was on 15 different kinds of medications. At times, my speech was slurred and my thinking was so slow that people thought I was drunk.
Since I had PTSD and TBI, I never wanted to get out of the house. My parents forced me to go to BOEC TBI ski camp to give it a try. On December 17, 2008, I learned how to ski and was told that I was carving on the third day. I was then introduced to NSCD to learn to race camp which I did well on rec skis. My best friend told me to check out CAF Operation Rebound and because of them and Disabled Sports USA's (DS / USA) efforts, I was able to compete that next year."
How adaptive sports changed your life: "Today, I am only on three different medications (down from 15) because of skiing. I have had the same coaches for the last three years and they have seen fast and unbelievable changes in me with my TBI."
For more information on Joel, visit: http://www.va.gov/adaptivesports/va_groups_story-JoelHunt.asp
#2 – “Playing sports, along with everyone's support, played a key role in my physical recovery as well as my psychological recovery.”
Carlos Leon is a quadriplegic and former marine who competes in the Discus. He’s only 2.62m from breaking the world record!
Training Regimen: "I pretty much live at the gym because I want to be the best in the world at the discus throw."
How did you get involved in adaptive sports: "My parents are Colombian so playing soccer at an early age is a tradition in my family. I've been an athlete my entire life. In June 2005, I had recently returned from deployment in Iraq and was six months from relief of active duty. While stationed in Hawaii's Kane'ohe Bay, I went swimming with some friends. I dove in the water, hit some coral rock and broke my neck at the fifth cervical vertebrae. Five months later, I attended my first sports camp."
How adaptive sports changed your life: "My family, friends and the Corps were behind me 100%. Playing sports, along with everyone's support, played a key role in my physical recovery as well as my psychological recovery. Six years have passed since my accident where I lost function of my limbs. Now, I can walk with the assistance of a cane or walker. My discus throw, which is now my sole focus, has gone from eight meters on my first throw five years ago to nearly 24 meters. I am only 2.62 meters off the world record."
For more information on Joel, visit: http://www.va.gov/adaptivesports/va_groups_story-CarlosLeon.asp
#3 – “Growing up, I didn't know any injured people. The only injured people we see are the people at traffic stops asking for change. Paralympic sports opened my mind to a different world. I learned that I had options."
Kari Miller is an Army veteran and double amputee. She competes in women’s sitting volleyball and won a silver medal at the 2008 Paralympic Games in Beijing, China and named best libero at the 2009 Euro Cup.
How did you get involved in adaptive sports: "In December 1999, I was on leave of duty to visit my family for Christmas. While driving, my car was struck by a drunk driver and as a result, I lost both of my legs. In the weeks following the accident, I had plenty of bad days but my physical and emotional rehabilitation came through athletic competition."
How adaptive sports changed your life: "Through sport competition, my work with the USOC Paralympic Military Program and support from my family, I realized my full potential as an athlete with a disability. Growing up, I didn't know any injured people. The only injured people we see are the people at traffic stops asking for change. Paralympic sports opened my mind to a different world. I learned that I had options."
Kari participates in sports for: Rehabilitation, competition and teaching other disabled Veterans about sports.
Fun fact: Kari is a rock climber and comic book enthusiast.
#4 – Going from instructor to student gave me a new appreciation of how “hard it is for our students to do what we ask them to do; and how dedicated and competent our instructors are.”
For many years, I taught skiing and snowboarding at the Adaptive Sports Foundation as a volunteer instructor. I skied or snowboarded everywhere on Windham Mountain with ease. I gave the first snowboard lesson to many of our students on the racing team.
Life changed for me a few years ago when I developed a neurological condition that cost me the use of my legs. In 2008, I could no longer snowboard or ski. In fact, I could barely walk.
So, I became an indoor volunteer, doing what I could to remain active in the program and stay in contact with friends, fellow volunteers, and students. My fellow instructors and students, especially Michael Mistretta, Kevin Cohane, John Swartwood and Mary Bozzone, gave me wonderful advice on how to cope with my new disability, which made life a lot easier. I learned how to use crutches and a wheelchair, which was something I never thought I would have to deal with on a personal level.
Last winter, I took the plunge and tried mono-skiing. With assistance and encouragement from Adam DeMuth, my daughter Dani, and many other instructors, I was finally able to get back on the snow. The experience was exciting and enlightening! Being on the other side, a student and not instructor, brought home two things I never understood before: first, how hard it is for our students to do what we ask them to do; and second, how dedicated and competent our instructors are.
I wish I could say I was an instant superstar, but the fact is, I did a lot of falling, and Adam and Dani did a lot of picking up. I knew what I was supposed to do, but I wasn’t always able to do it. And, it is amazing how steep White Way, a Windham Mountain beginner trail, looks when you are going down in a mono-ski and not upright on a snowboard. After a few days and many runs, I was able to master Willpower, another Windham Mountain beginner trail, and get up and down White Way with ease.
My instructors displayed infinite patience, not only teaching me how to ski, but encouraging me after each frustrating fall. This year my goal is to improve enough so that I can return to teaching. If I can accomplish that, I know I will be better than I ever was before, because now I have seen life from the other side.
For more information on the Adaptive Sports Foundation, visit: http://blog.adaptivesportsfoundation.org/2011/03/volunteer-gains-first-hand-insight-as-role-changes-from-instructor-to-participant/
#5 – “When you’ve had a traumatic injury it affects your social life, self-confidence and self-worth. Our job is to say ‘your life has changed but it hasn’t gone up in smoke’.”
Tom Brown, who was a rehabilitation therapist at McGuire VA hospital and director of the first National Veterans Wheelchair Games, knows firsthand the therapeutic value of adaptive sports. Born without legs— “I have been basically between artificial legs and wheelchairs all my life”—at age 7 he was the youngest member of an all-men’s wheelchair basketball team.
While majoring in music at the University of Illinois, Brown enthusiastically participated in UI’s wheelchair sports program—one of the few in the country at the time. In the end, love of sports prevailed; he pursued his master’s in therapeutic rehabilitation (TR).
“The goal of TR is to get people with disabilities out into the community,” Brown, Paralyzed Veterans’ director for the 32nd Games, explains. “When you’ve had a traumatic injury it affects your social life, self-confidence and self-worth. So we work on whole body, mind and soul. All of these [injured] were military vets, parts of teams—now suddenly they are on their own, they can’t be part of something. Our job is to say ‘your life has changed but it hasn’t gone up in smoke.’ ”
Dr Ken Lee, head of spinal cord medicine at VA Medical Center in Milwaukee, and himself a combat veteran and former patient (he received a traumatic brain injury from a suicide car bombing) seconds Brown’s view. “We’ve been pushed to do some sports since childhood,” he says. “It makes sense that when we have an injury or life-altering medical event, we can use sports to get back into the world—the wheelchair is no longer a boundary.”
A member of the Games’ national physician team since 1999, Dr. Lee sees it as an event that epitomizes adaptive sports’ unique healing abilities. “Many people think adaptive sports are fun and games,” he says. “They don’t realize it is all about rehab. Adaptive sports keep the rehab in motion—and keeps the injured moving forward.”
Both Lee and Brown see an added value in the sheer numbers competing. “The modeling between a new vet and a worldly vet, who has been to the Games and been out in the community is remarkable,” Brown says. “It’s worth probably more than any therapist or hospital program could ever do. It’s one thing for an able-bodied person to tell them ‘you can do it’—when they see fellow vets doing it, it sinks in.”
For more information on the Paralyzed Veterans of America and the Wheelchair Games, visit: www.pva.org
Have additional stories you want to share? Let us know in the comments!
There was a lot of coverage this summer of the London Paralympics. As part of #ThrowbackThursday we are sharing a whole host of images from the past events and we came across 5 surprising facts we thought you should know!
#1 - The Olympic and Paralympic Games are actually two separate entities.
The two Games are actually completely separate. The first international Paralympic Games took place in Rome, a week after the 1960 Summer Olympic Games were held there. In 1964, they were held in Tokyo, again just after the Olympics.
But in 1968, Mexico City, the host city of that year’s Olympics, refused to host the Paralympics. They were instead held in Tel Aviv and from then until 1988, the Paralympics continued to be held in locations completely separate to the Olympics.
Then in 1988, Olympics hosts Seoul took on the Paralympics, and they have been held together ever since. In 2001, it became official, and now host cities have to bid for both.
There are rumors that one day the two might merge, but opinions are split on the merits of such a move. Read more…
#2 – The first Paralympics were held in 1960, but international adaptive athletic competitions go back to the 17th century!
While early local or national versions of the modern Olympics began in England and France as far back as the 17th and 18th centuries, the Paralympics Games are just over 50 years old.
Did you know that an early version of the Paralympics began in Britain? A precursor to the Games was held to coincide with the 1948 London Olympics at Stoke Mandeville Hospital in Buckinghamshire, which is world-renowned for its work with people who’d suffered spinal injuries.
Organised by Sir Ludwig “Poppa” Guttmann, a German-born doctor who had escaped Nazi Germany, and worked to rehabilitate British soldiers injured in the war, the Stoke Mandeville Games were held again in 1952 when Dutch war veterans also took part, making it the first international competition of its kind. Just eight years later, what has since become known as the first official Paralympic Games was held in Rome in 1960, featuring 400 athletes from 23 countries. Read more…
#3 – The first games were only open to athletes in wheelchairs.
Until 1976 the Games were open only to athletes in wheelchairs. The term was first used in the 1950s and was a pun amalgamating the words paraplegic and Olympics.
But in 1976 many more classifications were added, allowing 1,600 athletes from 40 countries to compete. The present-day Paralympic Games include five major classifications of athletes: persons with visual impairments, persons with physical disabilities, amputee athletes, people with cerebral palsy, people with spinal cord injuries and Les Autres - athletes with a physical disability that are not included in the categories mentioned above (e.g., people with Muscular Dystrophy).
#4 – The Paralympic mascot, Mandeville, is named after Stoke Mandeville Hospital in the UK where an early version of the Games got started.
What's less well known about the original 1948 games - then known as the International Wheelchair and Amputee Sports (IWAS) World Games - is that patients at Stoke Mandeville were pitted against another care facility, the Royal Star and Garter Home in Richmond Upon Thames, where the father of the games, Dr. Ludwig Guttman, also worked.
Less well known still is that the Royal Star and Garter side won that inaugural contest - an archery competition. The Richmond-based patients also won the rematch just a few weeks later.
Regardless of who won, what is true is that without Dr. Ludwig Guttmann there would be no modern Paralympics. Moreover, there'd be many wounded servicemen from WW2 who'd have never survived horrific paralyzing injuries.
I met Ron Hill, now 92, but a man who thought he'd be lucky to live three months after shrapnel paralyzed him from the chest down on D-Day. He considers himself very lucky to have been taken to Stoke Mandeville Hospital to be treated by Dr. Guttmann.
All these years on Ron now lives and is cared for at the Royal Star and Garter Home in Richmond where his former doctor once also worked. He explained, "He didn't let you stop using your brain. He had you up in a wheelchair as soon as possible."
You learn more about the origins of the Paralympics at the Mandeville Legacy website, here.
#5 – The range of adaptive sports has expanded throughout the years and includes several adapted versions of able-bodied sports.
Although there are sports that only disabled people play, you’ll recognize most of the events at the Paralympics. Swimming, cycling and athletics will happen in a similar way to their Olympic equivalents, albeit split into many different classifications, and with added prosthetics, wheelchairs and human guides.
Spectators at sports like wheelchair rugby, sitting volleyball and blind football, who are familiar with their able-bodied equivalents, will quickly realize that the Paralympic versions bear little resemblance to the sports they know and love.
The ball used in blind football is less bouncy than a regular one and contains ball bearings to make it audible.
It is played on a hard surface by two teams of five players. The area of play is smaller than in regular football and is surrounded by boards. The boards not only stop the ball from going out, but also reflect sounds from the ball and from footsteps, which helps players to orientate themselves on the pitch. Teams rely heavily on numerous audible clues, so spectators must stay silent during play.
While the Paralympics won’t be back for a few years, we’re looking forward to the 2014 Games in Brazil and seeing all these amazing athletes! And in the meantime, there are a ton of great local adaptive sports competitions to check out including the International Quad Rugby Tournament here in Tampa that is taking place this weekend. Check it out!
21st Annual Coloplast International Wheelchair Rugby Tournament
All Peoples Center
6105 E. Sligh Avenue
Tampa, Fl 33617
Fri, 01/11/2013 (All day) - Sun, 01/13/2013 (All day)
We missed last week with the holidays, but now we’re back in 2013 with a whole host of new questions. We recently brought on several new Customer Care Reps and they’ve been jumping into training. In the course of training however, they’ve asked some interesting questions to which we wanted to share the answers!
1. From a new customer: I only use two diapers per day but I re-use them to save money. Is that safe? Is Men’s Liberty is a better option?
Double dipping in your diapers can cause some serious complications and end up costing you more money in the long run. The price of most superabsorbent pads is between $0.44 and $0.86 per unit. Pads should be changed an average of 4-6 times a day, meaning that the annual expenditure for an incontinent man using pads could be as high as $4,402. Because absorbents aren’t covered by insurance, these costs are borne almost exclusively by the individual user.
So I understand the impulse to try and make your pad last a little longer and to save a little of that money. But sadly diapers are generally only designed to absorb around 16 ounces of fluid in a single episode and most do very poorly during a second urination. That can lead to leaking and embarrassing accidents.
Additionally, sitting in a wet diaper for hours is bad for your skin. The most common side effect of absorbents is Incontinence-Associated Dermatitis (IAD) which occurs in up to 25% of users[i]. Continuous use of absorbents for as little as 5 days has been shown to cause increased sweat production and compromised skin barrier function[ii]. Continuous absorbent use is also associated with an increased risk of pressure ulcers[iii].
2. What are the most common diagnoses associated with incontinence?
There are many diseases and diagnoses which are known to cause incontinence. The chart below shows a general breakdown of the male incontinence market in the US.
3. Do you have any tips for travelling with incontinence?
- Always be prepared. Make sure to have a half dozen extra Men's Liberty catheters on hand during your trip. You never know when a flight might be delayed, your car will break down or you get stuck somewhere and need to change your Men's Liberty device. By keeping a few extra on hand you will have the security of knowing that no matter what happens with your flight, your rental car or on your drive home you have the right fluid management solution in hand!
- Keep to your Men's Liberty change schedule. Changing locations, time zones and sleeping patterns is normal during a trip. It's easy to get distracted and forget. But whenever possible, make sure to maintain your Men's Liberty change schedule. Keeping this consistent will help eliminate potential accidents caused by wearing each device too long which can result in reduced adhesion of the hydrocolloid, pop-offs or leaks.
- Avoid putting unnecessary pressure on your bladder. When flying, be sure to void your bladder as completely as possible prior to boarding the aircraft. Intermittent cath if needed, even if you normally only do it once a day. The tight lap belt, changes in air pressure and potential turbulence can put a lot of pressure on your bladder and the sphincter muscles. These pressures can result in a strong, unexpected need to void or a sudden, high pressure release of urine which will fill the small Men's Liberty collection chamber. Always connect your Men's Liberty to a leg bag for the duration of your journey so that if you have to go, you can!
- Don't avoid drinking fluids just to avoid your incontinence. Your body needs food and water to survive and to get the most out of your vacation! Particularly when you are travelling, you can get dehydrated easily. Not drinking may seem like a simple solution to potential incontinence but it can cause your body real, long term damage.
4. You all talk about adaptive sports a lot – why?
We talk about adaptive sports because sports are a fantastic way to extend rehabilitation out into the community. Men’s Liberty is a proud Mission: ABLE partner and sponsor of the National Veterans Wheelchair Games. The roots of the Wheelchair Games go back over 60 years to the Department of Veterans Affairs. After World War II, the VA began to get involved in wheelchair sports as a method of rehab. “There was a group of vets coming back and they were disabled in their chairs and the physicians and staff were watching these vets playing, just throwing the basketball back and forth, and realizing they were seeing more function there than they were in the clinics. What was the difference? Because they were playing, they were interacting, they weren’t focusing on their pain, they were focusing on each other,” says David Tostenrude, a long-serving coach & advocate of the Games.
The first National Veterans Wheelchair Games were held in 1981 “in celebration of the international year of the disabled,” says co-founder Tom Brown. “We came up with the idea of doing a track and field event for veterans. [It] was a way to extend that rehabilitation out into the community and [help the veterans] put what they had learned in the hospital to practical use. We introduced things in sports that [they] thought that they could never do again. Watching other veterans do it and trying it themselves motivated these guys... The only limitation is in their mind because especially now with the adaptations that are possible, you really can do almost anything.
“In the military you have an unwritten code,” says Tom. “Never leave one of your own behind. It’s really obvious in the games because the older guys, the ones that have been disabled for a while, know the tricks. They’re anxious to show the new guys tricks and the new guys learn a lot, not only what they can do but what kind of new equipment is out there.”
It’s not just about the skills the competitors learn, “it’s how to apply it in the real world,” says David. “You could just see the thought processes going on about well, if I can do this, what else can I do – go to school, go to work, volunteer at my kid’s school. The doors start to open.”
5. Have you got any good jokes about incontinence?
We’ve got a couple of good one liners but fair warning – some of these are a bit rude.
- "Hi, you're through to the Incontinence Hotline....can you hold, please?"
- Apparently incontinence IS a laughing matter because I pee a little bit every time I laugh.
- I was a bit disappointed this Christmas, I didn't realize that the i in iPad stands for incontinence
- Leaking? Do we need to call a plumber?
- And from a truly disturbing conversation between my grandfather and grandmother: “I get it. This incontinence is revenge for my menopause.”
[i] Gray, M., “Optimal Management of Incontinence-Associated Dermatitis in the Elderly,” American Journal of Clinical Dermatology, 2010:00 (0).
[ii] Aly, R., Shirley, C., Cunico, B., et al, “Effect of Prolonged occlusion on the microbial flora, pH, carbon dioxide and transepidermal water loss on human skin,” Journal Investifative Dermatology, 1978; 71 (6): 378-81.
[iii] BioDerm estimate, 2005, based on Pajk, Marilyn Pressure Sores. Merck Manual of Geriatrics Section 15, Chapter 124. Internet Edition provided by Medical Services, USMEDSA, USHH. Published by Merck and Co. Inc, 2000
We’re back and to kick of 2013 with a bang we wanted to share an update from Davis as he prepares for the National Veterans Wheelchair Games.
After nearly 10 years of heckling from friends and fellow competitors, Davis has finally given in and joined the Tampa Generals Quad Rugby team. “I’ve been talking trash for years, now I have to put my money where my mouth is,” he says. Although the Tampa Generals aren't part of the Games, being involved in great practice and he's loving the challenge!
I joined Davis and his Tampa Generals teammates for a practice session in Clearwater, FL just before Christmas and wanted to share the pics and videos below!
It been a couple of days since the practice and the thing that I remember most is the sound. They practice in a gymnasium so everything sounds louder. It echoes. The players have special chairs with full metal wheels that are angled for balance and turning at high speeds. They bang into one another over and over backwards and forwards - it sounds like they are trying to knock each other out of their chairs!
In the midst of all this they are throwing and dribbling a white ball, attempting to score. I don't know too much about rugby but it seems that the quad rugby teams have matched the able bodied version for sheer brutality. I guess I know now why it's called murderball!
The Tampa Generals are a wheelchair rugby team that has been in existence since 1989. Since their inception, the Generals have continued to be one of the top teams in the U.S. Quad Rugby Association. The Generals boast 3 National Championships and are the most storied team in the history of the sport. The Generals are a community based team comprised of players from Hillsborough, Pinellas, Polk, Hernando, and Sarasota counties. During rugby season (Oct - Apr), the Generals compete at an average of 8-10 tournaments per year around the country. Davis is one of nearly a dozen players including two women!
There are 4 veterans on the Tampa Generals team and they are looking forward to competing in the National Veterans Wheelchair Games. In advance of the Games, Davis is learning a lot with the Tampa Generals and enjoying the competitions!
There are two local January competitions in FL that we’d encourage you all to check out! We’ll be there with bells on to support these amazing athletes!
6th Annual Southern Slam Quad Rugby Tournament
Jacksonville Ice & Sportsplex
3605 Phillips Highway
Jacksonville, FL 32207-5613
Fri, 01/04/2013 - 9:00am - Sun, 01/06/2013 - 1:00pm
21st Annual Coloplast International Wheelchair Rugby Tournament
All Peoples Center
6105 E. Sligh Avenue
Tampa, Fl 33617
Fri, 01/11/2013 (All day) - Sun, 01/13/2013 (All day)
Next up on Following Davis…. adaptive water-skiing!!!
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For more info on the Games, check out: www.wheelchairgames.pva.org