Resource CenterHealth & Wellness after SCIPrinter Friendly Version

Health & Wellness after SCI

Includes information specific to unique health care needs of the person living with SDI/D; discusses resources for persons living with disc disease and other back & spine conditions.

1. Latest news!

1.1. Eye Gaze Technology

Tobii Unveils Ultraportable Computer-Access Peripheral

- Bringing Gaze Interaction to Standard Laptops and Computers

STOCKHOLM, SWEDEN/ BOSTON, USA, Mar. 20, 2013 — Today Tobii announced the release of the next-generation Tobii PCEye eye trackers. The Tobii PCEye Go and PCEye Pro bring gaze interaction to standard laptops and computers, allowing individuals with communication and rehabilitative disabilities to control all the functions of their computer using only their eyes.

The Tobii PCEye Go and PCEye Pro are peripheral eye trackers that connect to standard laptops and desktop computers through a single USB connection, allowing users to navigate and control the computer with only the movement of their eyes.

The PCEye provides users who suffer from Lou Gehrig's disease (ALS), stroke, MND, spinal cord injuries, Rett syndrome or cerebral palsy access to the full suite of computer applications. With the PCEye, users can surf the Web; play games; use environmental controls; connect with friends via email, Skype and social networks; and even work with spreadsheets and create documents.

"With the PCEye and Gaze Interaction, individuals with disabilities are no longer confined to a controlled computer environment; instead, they can enjoy the full freedom and access of a standard PC," said Oscar Werner, executive vice president of assistive technology at Tobii. "We give individuals new ways to connect with others, make their voices heard, stay informed, and live more fulfilled, independent lives. We even give them the opportunity to continue employment."

Extremely portable

The PCEye comes in two sizes. The smaller Tobii PCEye Go is primarily meant for laptop use and smaller desktop screens. The larger PCEye Pro is optimized for those working with bigger screens.

Both easily attach to and detach from the desktop or laptop using magnetic mounting plates and a USB connection. This makes it easy to take the PCEye along at all times: to school, to work and back home.

Relaxed and almost pixel-precise computer access

The PCEye comes with the Tobii Gaze Selection software, which makes it easy to control the computer and significantly reduces the risk of unwanted clicks, giving the user more relaxed, almost pixel-precise computer access. To write texts, messages or URLs, users can use the on-screen keyboard that is built into Gaze Selection or any of the keyboards that come with the optional Tobii Communicator.

"We've listened to our users saying they want more portability and the ability to access modern computer apps and programs with ease," said Tara Rudnicki, president of Tobii ATI. "With the PCEye, our users are able to advance in the computing age with equal, or even superior, ability."

Availability

The PCEye Go is currently available for purchase. The Tobii PCEye Pro will be available later in 2013.

Additional Resources
To learn more about Tobii PCEye Go and Pro, please visit www.tobii.com/pceye, contact sales@tobiiati.com or call 1-800-793-9227.

Click here to see Tobii assistive technology devices in action.

Media contacts
In the U.S. and Canada:
Stephan Floyd, Tobii ATI; phone: 1-781-223-2005, stephan.floyd (@) tobii.com

Rest of the World:
Thomas Nordén, Tobii Technology AB; phone: 46 73 327 87 42, thomas.norden (@) tobii.com

About Tobii Technology
Tobii Technology is the global market leader in eye tracking and gaze interaction. Our products are widely used within scientific research and in commercial market research and usability studies, as well as by people with disabilities as a means to communicate and to access and control their computers. Today Tobii contributes with a wide range of Augmentative and Alternative Communication (AAC) products. www.tobii.com

 

About Tobii ATI
Tobii Assistive Technology Inc., a wholly owned subsidiary of Tobii Technology. For nearly two decades, Tobii ATI has been helping men, women and children with disabilities such as autism, cerebral palsy, Lou Gehrig's disease (ALS), muscular dystrophy and spinal cord injury lead fuller, richer lives. Through its total commitment to serving its customers — individuals, families, doctors, therapists, schools and rehabilitation centers — Tobii ATI has developed a reputation as an innovative and caring industry thought leader that continues to push the boundaries of what's possible to deliver the most advanced, effective and empowering communications tools available for a wide array of disabled communities through award-winning eye-tracking and gaze-controlled hardware and software. Tobii is the global leader in eye-tracking and gaze interaction. For more information, please visit www.tobiiati.com.

 


This information was brought to you by Cision http://news.cision.com
http://news.cision.com/tobii-technology-ab/r/tobii-unveils-ultraportable-computer-access-peripheral,c9388166

The following files are available for download:

Tobii PCEye Go and Pro mounted on laptop and desktop
screen
Tobii PCEyeGoPRo-600px
Tobii PCEye Go
Tobii Image PCEyeGo Front-600px
Tobii PCEye Pro
Tobii Image PCEyePro Front-600px

1.2. RRTC on Aging with a Disability

The Rehabilitation Research and Training Center (RRTC) on Aging with a Physical Disability works on research and training activities to better understand the challenges faced by people aging with muscular dystrophy (MD), multiple sclerosis (MS), post-polio syndrome (PPS), and spinal cord injury (SCI).  The research center at the University of Washington in Seattle, WA, has launched a new website at http://agerrtc.washington.edu.

This resource for people aging with a spinal cord injury/disorder offers up-to-date educational information, including Aging Well with a Physical Disability Factsheets, as well as many ways to stay connected with the center's research: a News Blog, a quarterly e-Newsletter, and Facebook and Twitter pages. (See related pages below)

Take some time to check them out: http://agerrtc.washington.edu

posted 12-20-12

1.3. Monitoring the Spinal Cord During Surgery

The American Academy of Neurology (AAN) develops guidelines to promote patient safety and improve patient outcomes in relation to neurologic conditions.  AAN recently issued an updated guideline (February 2012) that recommends monitoring the spinal cord during spinal surgery and certain chest surgeries to help prevent paralysis, or loss of muscle function, related to the surgeries.

"Paraparesis, paraplegia, and quadriplegia are potential serious complications of surgeries where the spinal cord is at risk," said guideline lead author Marc R. Nuwer, MD, PhD, of UCLA and a Fellow of the American Academy of Neurology. "Monitoring can help prevent damage by identifying problems early enough to allow for interventions. If intraoperative monitoring raises warnings, surgeons and anesthesiologists can modify the surgery to reduce the risk of these complications."

1.4. Sniff interface

Voice of America piece on cost-effective sniff interface technology developed in Israel can be used to control a wheelchair or for writing via computer.

1.5. Exoskeleton Systems

1. Recently available and in clinical trials in the US is ReWalk, a new system that enables someone living with a paraplegic level SCI to stand, walk and use stairs following appropriate training. This system includes motorized leg supports, body sensors and a back pack containing a computerized control box and rechargeable batteries.  Persons are able to enjoy the benefits of standing upright through the use of this system.  It is anticipated that ReWalk will receive FDA approval for commerical use sometime in 2010.

 For more information read the following recent articles:

Reuters

Parade magazine

Clinical trials

SEE ReWalk video in our VIDEO RESOURCE ROOM on the related page below

 

2. e-LEGS exoskeleton, originally developed by Berkeley Bionics, is now known, formally, as Ekso Bionics.   The device is now being offered at 12 rehabilitation centers within the US.  The system is adjustable and can fit most people who weigh less than 220 pounds and stand between 5'2" and 6'4". The device provides "unprecedented knee flexion," and it's also fairly quiet in operation; under ideal circumstances, speeds of up to 2MPH can be attained.  The system is being studied for use with patients with different levels of spinal cord injury, however it is being offered to persons with paraplegia. 

 

3. REX exoskeleton-produced in New Zeland, $150,000 approximate cost but not yet approved for individual sale in the US as yet.

With state-of-the-art, highly engineered systems some 29 on-board computer processors control movement and balance through joystick control allowing the Rex user to direct the device to sit, stand, walk and turn with consummate ease. These robotic legs can even walk up steps, up or down slopes. Rex has been designed with maximum comfort and stability.Rex does not require any additional supportive aids such as crutches. The device is self supporting allowing you to keep your arms and hands free to use.

Also see the Engadget article with video in our VIDEO RESOURCE ROOM

4.  Indego

  • Innovation for Parker.

  • Parker has formalized an agreement with Shepherd Center to support the commercialization of Parker's exoskeleton device Indego®, which is planned for release in 2015.

  • Indego® allows users to stand and walk, and holds great promise for affording people with paraplegia a new level of independence.

  • Indego® weighs just 27 pounds and snaps apart into three pieces for maximum convenience. The device is small enough to accommodate low profile wheelchairs.

Indego® provides a modular design that can be assembled and dis-assembled for ease of use and transportation. This device is small and light, with a slim profile and no bulky backpack components or footplates.

A proprietary control interface allows for smooth operation that works in harmony with natural human movement and body position

1.6. Obesity and Heart Disease after SCI

The National Rehabilitation Hospital in Washington, DC, is the Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury (SCI), funded by the National Institute on Disability and Rehabilitation Research (NIDRR).  The RRTC focuses on the prevention and management of secondary conditions among individuals with SCI, with particular focus on pressure sores, cardiovascular disease, and obesity.  This recent publication discusses obesity and heart disease in SCI, the risks for a person living with SCI and what you can do to reduce your risk.  Obesity and Heart Disease after SCI

1.7. Botox approved for Upper Limb Spasticity

March 9 2010

Botox has bee approved for treatment of Upper Limb Spasticity of the Elbow, Wrist and Fingers.

Read more in this FDA news release

1.8. Nerve Transfer To Restore Hand Function

Nerve Transfer to Restore Hand Function- C6/7 Spinal Cord Injury

Cervical level spinal cord injury can significantly affect hand function. Depending on the level and type of injury, surgery to improve hand and arm function may be an option. Surgical treatment may include nerve transfers or other procedures.

This nerve transfer surgery can only benefit patients with specific types of spinal cord injury. To be eligible, a patient must have quadriplegia with a motor level C6 or C7 spinal cord injury. Because the procedure relies on working nerves above the C6 and C7 level, it will not benefit patients with higher level cervical spinal cord injuries. The goal of the procedure is to restore hand function with the ability to pinch the thumb and index finger.

2. Health and Wellness by sub-topic

2.1. SCI Health Education MultiMedia Series

Secondary Conditions of SCI Health Education Video Series

This series was produced by the University of Alabama at Birmingham Department of Physical Medicine and Rehabilitation. This 11-part video series is intended to be equally useful for persons with spinal cord impairments at home or by health and rehabilitation centers for education and training activities. 
  • Bone Health: A 19 minute video that discusses Heterotopic Ossification and Osteoporosis, including diagnosis, prevention and treatment options.Cardiovascular Health:  A 38 minute video that examines the signs, symptoms and general treatment options of conditions such as Autonomic Dysreflexia, Hypotension, and Deep Vein Thrombosis.
  • Respiratory Management:  An 18 minute video that covers signs, symptoms and general treatment options of conditions such as Atelectasis, Influenza, pneumonia, Pulmonary embolisms, Sleep apnea and Ventilator use.
  • Spastic Hypertonia:  This 27 minute video defines Spastic Hypertonia (spasticity), explains the advantages and disadvantages of spasticity, and discusses  treatment options.
  • Pain Management: A 35 minute video that stresses the importance on quality of life. Reviews pain subtypes (Neuropathic, Musculoskeletal and Visceral) and offers general medical and psychosocial management techniques.
  • Bladder Management:  A 33 minute video that outlines the importance of bladder management on quality of life. The types of bladder management programs and techniques are illustrated. Prevention and treatment of UTI risks for stone formation are also discussed.  Also includes demonstration videos for application of male/female foley catheter, male condom catheter, and male/female intermittent catheterization.
  • Pressure Sores Part 1: Skin Care & Prevention- A 41 minute video that describes skin functions & risk factors for pressure sores, and prevention through proper seating, weight shifts, and nutrition. The impact of a pressure sore on quality of life is explored.
  • Pressure Sores Part 2: Treatment- A 10 minute video that utilizes an anatomical model to demonstrate techniques for general care and treatment options for all four stages of pressure ulcers, unstageable pressure ulcers and tunneling wounds.
  • Bowel Management: This 25 minute video stresses management, predicting bowel movements, avoiding bowel accidents, bowel care procedures, and anatomical model demonstrations.
  • Sexuality & Sexual Function: The first part of this 59 minute video explores psychological aspects of sexuality such as expressing sexuality, sexual adjustment, managing personal care issues, confronting issues with body image issues, and working through relationship issues. The second part explores physical aspects of sex following SCI for both men and women. This includes arousal, sexual function and dysfunction, sexual activities, and fertility. 
  • Life with SCI: A Group Discussion-Adjustment to life with SCI is best understood by those who experience it. This 51 minute video is an open discussion of 5 individuals with SCI and their experiences on short- and long-term adjustment-related issues such as healthy grief, education, Impact on relationships, children, depression, and substance abuse. 
  • Understanding Spinal Cord Impairments and Functional Goals: A 26 minute video that offers a basic understanding of the normal function of the spinal cord and the impact of impairment at different types and levels of injury. Functional goals are addressed for levels of impairment.
For improved quality, you can purchase the entire series on DVD.

Multimedia Video Order Form

2.2. Aging with SCI

 


Aging & Sexuality
An article from Paraplegia News magazine  by Stanley Ducharme, Ph.D. reviews some of the changes that occur as a result of aging and how individuals with SCI have additional concerns and issues.

Osteoporosis
A pamphlet from Craig Hospital that discusses the risk of osteoporosis in individuals with SCI, it's diagnosis and treatment.

Aging with a Spinal Cord Injury
SCI Forum Report & Video Presented on June 9, 2009, by Rina Reyes, MD, Medical Director, UW Medicine SCI Rehabilitation Program and Assistant Professor, UW Department of Rehabilitation Medicine, and Ivan Molton, PhD, Clinical Psychologist and Acting Assistant Professor, UW Department of Rehabilitation Medicine.

Aging with SCI
Summary Transcript from Aging with Spinal Cord Injury Teleconference for Consumers & Families

Aging with Spinal Cord Injury: Sleep Problems
Researchers at the University of Washington's Rehabilitation Research and Training Center on Aging with Disabilities describe common sleep problems and provide solutions to help you sleep better.

Aging, SCI, and Upper Extremity Pain
A pamphlet from Craig Hospital that discusses upper extremity pain and injury experienced from daily overuse. Reviews injuries to the rotator cuff, biceps tendon, and wrist and the treatment choices available.

Am I Ready for a Van?
A pamphlet from Craig Hospital that discusses reasons one may or may not want to switch from driving a car to a van.

Bladder Cancer
A pamphlet from Craig Hospital that discusses the higher risk of bladder cancer in individuals with SCI.

Healthy Aging After Spinal Cord Injury
Summary of a program on SCI Forum, May, 2006 , by the NW Regional SCI System, University of Washington, that discusses diseases and health problems that affect people as they age and there concern for individuals with SCI.

Medications
An article by Craig Hospital Research Department from their SCI Health and Wellness series on Aging with SCI that discusses the risks with medications and that the risks rise as you age with your SCI.

Osteoporosis in SCI
The SCI Forum presentation, "Osteoporosis in SCI," by Jelena Svircev, MD, assistant professor in the Department of Rehabilitation Medicine at the University of Washington and SCI physician at the VA Puget Sound Health Care System, is now available on the Northwest Regional Spinal Cord Injury System Web site for viewing on your computer as streaming video. A written report of the presentation is also online.

Diabetes & SCI:  Prevention and Treatment
A pamphlet that discusses risks of individuals with SCI becoming diabetic, the treatment, and how to avoid complications.

Breast Cancer
A pamphlet from Craig Hospital that explains the risks of breast cancer for women with SCI and ways to decrease the risks. 

SCI and the Risk for Heart Disease
An article from the Northwest Regional Spinal Cord Injury System (SCI Update, Summer 2009: Volume 18, Number 2).
Do people with spinal cord injuries have a higher risk for developing heart disease than the general population? Find out about your risks and what you can do about them.

Switching to a Power Chair
A pamphlet from Craig Hospital that reviews decisions one faces when considering changing from a manual chair to a power chair. Discusses reasons for change; questions to ask oneself regarding the need to change; and how this may affect one's future function.
 

Also see Aging with SCI video in VIDEO RESOURCE ROOM referenced below

2.3. Autonomic Dysreflexia

Autonomic Dysreflexia (AD), also known as Hyperreflexia, is a potentially dangerous complication of spinal cord injury (SCI). In AD, an individual's blood pressure may rise to dangerous levels and if not treated can lead to stroke and possibly death. Individuals with SCI at the T-6 level or above are at greater risk. AD usually occurs because of a noxious (irritating) stimulus below the level of the injury. Symptoms include headache, facial flush, perspiration, and a stuffy nose.

One of the most useful resources for individuals with SCIs is our laminated, wallet-sized quick reference AD Medical Alert Card to carry in your wallet or billfold, provided courtesy of NSCIA in collaboration with Woodrow Wilson Rehabilitation Center (WWRC) whose staff provided the medical content. Download your own AD card right now by clicking below.

AD occurs primarily because of an imbalance in the body systems which control the blood pressure. The human body is an incredibly complicated and beautifully balanced machine. There are balances to each system of the body, including the blood pressure. One of the major ways the body controls blood pressure is by tightening or relaxing little muscles around the blood vessels.

When the muscles contract, the blood vessels get smaller and blood pressure increases. Imagine a garden hose with water streaming through it; when you put your thumb over the opening of the hose, reducing the opening for the water to flow through, the water shoots out at a higher pressure. Similarly, when the blood vessels are smaller, the blood rushes around your body at higher pressure.

When a noxious stimulus occurs, a reflex is initiated that causes the blood vessels to constrict and raises the blood pressure. In an intact spinal cord, this same stimulus also sets in motion another set of reflexes that moderates the constriction of blood vessels. However, in someone who has SCI at the T-6 level or above, the signal which tells the blood vessels to relax cannot get through the spinal cord because of the injury.

Some of the nerves at the T-6 level also control the blood flow to and from the gut, which is a large reservoir of blood. Uncontrolled activity of these nerves may cause the blood from the gut to flow into the rest of the blood system. The result is that blood pressure can increase to dangerous levels and the increase in blood pressure must be controlled by outside means.

What is "Autonomic Dysreflexia"?

Autonomic dysreflexia (AD), in the simplist terms, is the nervous system going crazy. Individuals that have a T-5, or higher, injury are the ones generally subject to suffering from AD. This is a condition that can be life-threatening and can be considered a medical emergency .

What are the indicators for the onset of AD?

  • Hypertension (blood pressure greater than 200/100)
  • Pounding headache
  • Flushed (reddened) face
  • Red blotches on the skin above level of spinal injury
  • Sweating above level of spinal injury
  • Nasal stuffiness
  • Nausea (secondary to vagal parasympathetic stimulation)
  • Bradycardia - slow pulse <60 beats per minute
  • Piloerection ("goose bumps") below level of spinal injury
  • Cold, clammy skin below level of spinal injury

What sort of things can precipitate this syndrome?

Irritants, things which would ordinarily cause pain, to areas of body below the level of spinal injury.

Things to consider include:

Bladder (most common) - from overstretch or irritation of bladder wall

  • Urinary tract infection (UTI)
  • Urinary retention
  • Blocked catheter
  • Overfilled collection bag
  • Non-compliance with intermittent catheterization program

Bowel

  • overdistention or irritation
  • Constipation / impaction
  • Distention during bowel program (digital stimulation)
  • Hemorrhoids or anal infections
  • Infection or irritation

Skin-related Disorders

  • Any direct irritant below the level of injury
  • Pressure by object in shoe or chair, cut, bruise, abrasion
  • Pressure sores (decubitus ulcer)
  • Ingrown toenails
  • Burns (eg. - sunburn, burns from using hot water)
  • Tight or restrictive clothing or pressure to skin from sitting

Sexual Activity

  • Overstimulation during sexual activity
  • [stimuli to the pelvic region which would ordinarily be painful if sensation were present]
  • Menstrual cramps
  • Labor and delivery

Other Causes

  • Heterotopic ossification ("Myositis ossificans", "Heterotopic bone")
  • Acute abdominal conditions (gastric ulcer, colitis, peritonitis)
  • Skeletal fractures

What can be done to manage an episode of autonomic dysreflexia?

The first thing to do is locate and remove the offending stimulus whenever possible. This will often prove successful enough to avoid pharmacological intervention. Once the source of irritation has been removed it will be a good idea to have the individual remain in a sitting up position and take frequent blood pressure checks until the episode has ended.

Typical Causes

Blocked Catheter
The most common cause of AD is a catheter that has become blocked. You will want to check the collection bag, irrigate the catheter and remove any kinks.

Bowel
If symptoms begin while digital stimulation is being performed, stop until symptoms quit. If the individual has impacted stool - begin disimpaction immediately. If digital stimulation continues to bring on the symptoms you may want to consider abdominal massage or commode-based bowel evacuation methods

Skin
Skin irritation, also a common cause of AD, is most often stopped by loosening the clothing. You will was to check for pressure sores and toenail problems.

How can autonomic dysreflexia be prevented?

  • Frequent pressure relief in bed/chair
  • Avoidance of sun burn/scalds (avoid overexposure, use of #15 sunscreen, watch water temperatures)
  • Faithful adherence to bowel program
  • Keep catheters clean and remain faithful to catheterization schedule
  • Well balanced diet and adequate fluid intake Compliance with medications

 

Other fact sheet sources:

PVA Clinical Practice Guideline - Autonomic Dysreflexia

PVA Consumer Guide - Autonomic Dysreflexia, What you should know

PVA Consortium Guide on AD in Spanish language

Automatic Dysreflexia (Hyperreflexia) Calder Memorial Library of the University of Miami/Jackson Memorial Medical Center


Autonomic Dysreflexia
The SCI Forum presentation, "Autonomic Dysreflexia," by Janna Friedly, MD, assistant professor in the Department of Rehabilitation Medicine at the University of Washington, is now available on the Northwest Regional Spinal Cord Injury System Web site for viewing on your computer as streaming video. A written report of the presentation is also online.


Paralysis Resource Center : Autonomic Dysreflexia
Autonomic dysreflexia (AD) is a potentially life threatening condition that can be considered a medical emergency. It mainly affects people with injuries at T-5 or higher.

Articles:

UAB article reprint-Autonomic Dysreflexia - A Possible Life-Threatening Situation

 

SEE Autonomic Dysreflexia video in the VIDEO RESOURCE ROOM referenced below

2.4. Back and Spine conditions/disorders

INFORMATIONAL RESOURCE ORGANIZATIONS

 

HELPFUL ARTICLES AND PUBLICATIONS

  • American Academy of Orthopedic Surgeons:
    1. Low Back Pain 
    2. Low Back Pain Exercise Guide    
    3. Back Pain in Children  
    4. Spinal Injections          

 FIND A DOCTOR

 PAIN MANAGEMENT AND SUPPORT

 PAIN RESEARCH

  • Translational Pain Research (617) 525-PAIN (7246)located at Brigham and Women's Hospital, Boston, MA has an overall goal to relieve each person's pain experience and ultimately improve a person's quality of life.
  • Complementary and Alternative Practices   National Institutes of Health, National Center for Complementary and Alternative Medicine discusses recent findings in research on chronic pain. 

 EN ESPANOL    

2.5. Bladder management

 

1)    Primary resources

  • Bladder Care and Management
    Reviews the urinary system, how it works after an SCI, and types of bladder management programs. Discusses possible problems with the urinary tract, treatment methods and steps to staying healthy
  • Bladder Management
    A pamphlet that reviews the urinary system and methods for voiding (urination) by individuals with SCI. It briefly describes types of bladder management
  • Bladder Management for Adults with Spinal Cord Injury: A Clinical Practice Guideline for Health-Care
    This evidence-based guideline was developed to describe the various methods of bladder management in adults with spinal cord injury.  Published by PVA on behalf of the Consortium for Spinal Cord Medicine.
  • Urinary Tract Management in SCI  This is a comprehensive discussion of bladder management needs provided by the University of Miami School of Medicine and related organizations.
  • Management of Urinary Problems Caused by Spinal Cord Injury
    The SCI Forum presentation, Management of Urinary Problems Caused by Spinal Cord Injury, which took place on October 13, 2009 at the University of Washington Medical Center, is available as streaming video and written report. In this presentation, Stephen Burns, MD, Associate Professor, UW Department of Rehabilitation Medicine and staff physician, SCI Service, VA Puget Sound Health Care System, discusses the advantages and disadvantages of different methods of emptying the bladder and describes some of the testing used to screen the bladder and kidneys. In addition, two individuals with spinal cord injury talk about their personal experiences with bladder management problems and solutions.

2.)  Articles that discuss a variety of concerns and issues about bladder management

 3.) Other varied, helpful resources

4.)   Organizational resources 

  • National Association For Continence  a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. NAFC's purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.
  • The Simon Foundation for Continence: www.simonfoundation.org
  • Neurotech Network  provides Urinary control information and resources  (neurotechnology urinary control devices)

                   ******Advocacy Groups for incontinence ****** 

If you are living with a neurologic condition causing an overactive bladder that leads to urinary incontinence, finding useful information, resources, and support can make a difference. Below you'll find a list of organizations and associations where you can learn more and get involved. The organizations listed below do not endorse any specific treatment for urinary incontinence.

  • For people living with multiple sclerosis (MS)
       Can Do Multiple SclerosisTM: www.mscando.org
       Multiple Sclerosis Association of America (MSAATM): www.msassociation.org
       Multiple Sclerosis Foundation: www.msfocus.org
       Multiple Sclerosis World (MSWorld®): www.msworld.org
       National Multiple Sclerosis Society: www.nationalmssociety.org
       National Spinal Cord Injury Association (NSCIA), a program of United Spinal Association:    www.spinalcord.org
       Paralyzed Veterans of America (PVA): www.pva.org
     
  • BOTOX® (onabotulinumtoxinA) Important Information:
    Indication
    BOTOX® is a prescription medicine that is injected into the bladder muscle and used to treat leakage of urine (incontinence) in adults 18 years and older with overactive bladder due to neurologic disease who still have leakage or cannot tolerate the side effects after trying an anticholinergic medication.

IMPORTANT SAFETY INFORMATION
BOTOX® may cause serious side effects that can be life threatening. Call your doctor or get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:

-Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months
-Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing. If this happens, do not drive a car, operate machinery, or do other dangerous activities
Do not take BOTOX® if you: are allergic to any of the ingredients in BOTOX® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® (rimabotulinumtoxinB), Dysport® (abobotulinumtoxinA), or Xeomin® (incobotulinumtoxinA); have a skin infection at the planned injection site.

Do not take BOTOX® for the treatment of urinary incontinence if you: have a urinary tract infection (UTI) or cannot empty your bladder on your own and are not routinely catheterizing.

The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product.

Serious and/or immediate allergic reactions have been reported. These reactions include itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Tell your doctor or get medical help right away if you experience any such symptoms; further injection of BOTOX® should be discontinued.

Tell your doctor about all your muscle or nerve conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), myasthenia gravis, or Lambert-Eaton syndrome, as you may be at increased risk of serious side effects including severe dysphagia (difficulty swallowing) and respiratory compromise (difficulty breathing) from typical doses of BOTOX®.

Tell your doctor if you have any breathing-related problems. Your doctor will want to monitor you for any breathing problems during your treatment with BOTOX® for detrusor overactivity associated with a neurologic condition. The risk of pulmonary effects in patients with compromised respiratory status is increased in patients receiving BOTOX®.

Autonomic Dysreflexia and Urinary Retention in Patients Treated for Detrusor Overactivity Associated With a Neurologic Condition
Autonomic dysreflexia associated with intradetrusor injections of BOTOX® could occur in patients treated for detrusor overactivity associated with a neurologic condition and may require prompt medical therapy. In clinical trials, the incidence of autonomic dysreflexia was greater in patients treated with BOTOX® 200 Units compared with placebo (1.5% versus 0.4%, respectively).

In clinical trials, 30.6% of patients (33/108) who were not using clean intermittent catheterization (CIC) prior to injection, required catheterization for urinary retention following treatment with BOTOX® 200 Units as compared to 6.7% of patients (7/104) treated with placebo. The median duration of post-injection catheterization for these patients treated with BOTOX® 200 Units (n=33) was 289 days (minimum 1 day to maximum 530 days) as compared to a median duration 358 days (minimum 2 days to maximum 379 days) for patients receiving placebo (n=7).

Among patients not using CIC at baseline, those with MS were more likely to require CIC post-injection than those with SCI.

Due to the risk of urinary retention, only patients who are willing and/or able to initiate catheterization post-treatment, if required, should be considered for treatment.

In patients who are not catheterizing, post-void residual (PVR) urine volume should be assessed within 2 weeks post-treatment and periodically as medically appropriate up to 12 weeks. Catheterization should be instituted if PVR urine volume exceeds 200 mL and continued until PVR falls below 200 mL. Patients should be instructed to contact their physician if they experience difficulty in voiding as catheterization may be required.

Human albumin and spread of viral diseases. BOTOX® contains albumin, a protein component of human blood. The potential risk of spreading viral diseases (eg, Creutzfeldt-Jakob disease [CJD]) via human serum albumin is extremely rare. No cases of viral diseases or CJD have ever been reported in association with human serum albumin.

Tell your doctor about all your medical conditions, including if you: have or have had bleeding problems; have plans to have surgery; had surgery on your face; weakness of forehead muscles, such as trouble raising your eyebrows; drooping eyelids; any other abnormal facial change; have symptoms of a urinary tract infection (UTI) and are being treated for urinary incontinence. Symptoms of a urinary tract infection may include pain or burning with urination, frequent urination, or fever; have problems emptying your bladder on your own and are being treated for urinary incontinence; are pregnant or plan to become pregnant (it is not known if BOTOX® can harm your unborn baby); are breastfeeding or plan to breastfeed (it is not known if BOTOX® passes into breast milk).

Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal products. Using BOTOX® with certain other medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you have received BOTOX® in the past.

Especially tell your doctor if you: have received any other botulinum toxin product in the last 4 months; have received injections of botulinum toxin such as Myobloc®, Dysport®, or Xeomin® in the past (be sure your doctor knows exactly which product you received); have recently received an antibiotic by injection; take muscle relaxants; take an allergy or cold medicine; take a sleep medicine; take anti-platelets (aspirin-like products) or anti-coagulants (blood thinners).

Other side effects of BOTOX® include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, and eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes; urinary tract infection and/or inability to empty your bladder on your own (in people being treated for urinary incontinence).

For more information refer to the Medication Guide or talk with your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see BOTOX® full Product Information including Boxed Warning and Medication Guide.

Can Do Multiple Sclerosis is a trademark of the Can Do Multiple Sclerosis organization. Multiple Sclerosis Association of America and MSAA are trademarks of the Multiple Sclerosis Association of America. MSWorld and the related logo are registered trademarks of the Multiple Sclerosis World organization.

Myobloc® is a registered trademark of Solstice Neurosciences, Inc. Dysport® is a registered trademark of Ipsen Biopharm Limited Company. Xeomin® is a registered trademark of Merz Pharma GmbH & Co KGaA.

 

Bladder management video selections in Health & Wellness chapter of the Video Resource Room Knowledge Book

2.6. Bone Health

General Information


Bone Health (19 minutes)
This video discusses aspects of Heterotopic Ossification (Classifications, Etiology, Diagnosis, Prevention and treatment options) and Osteoporosis (Initial bone loss after traumatic injury, Impact of aging, Impact of menopause, Prevention and treatment options). 58.2 mb download or watch on streaming real media.

Common musculoskeletal problems after SCI: Contractures, osteoporosis, fractures, and shoulder pain
A review of the SCI Forum, April 16, 2002, hosted by the Northwest Regional SCI System. Discusses the various problems that can occur with muscles, bones, ligaments and tendons as individuals with SCI age.

 

Heterotopic Ossification


Heterotopic Ossification - SCI InfoSheet #12
PDF Format - or - Text Format
Heterotopic ossification (HO) is the development of bone in abnormal areas, usually in soft tissues. Heterotopic ossification develops most commonly in individuals who have an injury, such as spinal cord injury, that results in neurologic deficits. Reviews the causes, location, diagnosis, treatment and prevention of Heterotopic Ossification. Produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R.

 

Osteoporosis

Aging and Osteoporosis
A pamphlet from Craig Hospital that discusses the risk of osteoporosis in individuals with SCI, it's diagnosis and treatment.
 
Osteoporosis and SCI
Fact Sheet from the Research and Training Center (RRTC) on Spinal Cord Injury: Promoting Health and Preventing Complications through Exercise

SCI Forum video and report: Osteoporosis in SCI
The SCI Forum presentation, "Osteoporosis in SCI," by Jelena Svircev, MD, assistant professor in the Department of Rehabilitation Medicine at the University of Washington and SCI physician at the VA Puget Sound Health Care System, is available on the Northwest Regional Spinal Cord Injury System Web site for viewing on your computer as streaming video. A written report of the presentation is also online.
 
 

Scoliosis

Scoliosis in Children and Adolescents - Information provided by the National Institute of Arthritis and Musculoskeletal and Skin Disease.  Discusses scoliosis, Q&A, provides organizational links

Find a Specialist who treats spinal deformities

Scoliosis Research Society discusses scoliosis, treatment options and FAQs; includes link for finding a specialist

National Scoliosis Foundation (NSF) is a patient-led nonprofit organization dedicated to helping children, parents, adults, and health-care providers to understand the complexities of spinal deformities such as scoliosis.

Scoliosis Association Inc., an international support and information organization that assists those with scoliosis by providing information, support groups and information lines.

 

2.7. Bowel Care

Bowel Management (25 minutes)
This video stresses management and its importance on QOL, predicting bowel movements, avoiding bowel accidents, Bowel care procedures, Anatomical model demonstrations. Impact of nutrition, water, medications on bowel management, and colostomy management.

Bowel Management - SCI InfoSheet #9
Reviews the process of digestion; how the level of SCI affects one's bowel program; and the different types of bowel programs. Gives suggestions for a successful bowel program and tips on handling bowel problems

Bowel Problems
An article by Craig Hospital Research Department from their SCI Health and Wellness series that discusses complications and problems individuals often have with their bowel program and solutions to them

Bowel Program in SCI
Calder Memorial Library of the University of Miami/Jackson Memorial Medical Center - This section will help you understand How to follow a bowel program. Following is an illustration of the gastrointestinal tract and a brief discussion of the normal digestion and bowel movement processes.

Colostomies: A radical approach to bowel management
An article by Craig Hospital Research Department from their SCI Health and Wellness series that discusses how a colostomy is a perfectly reasonable way to manage those cranky bowels, reviewing the pros and cons as well as the costs

Neurogenic Bowel Management in Adults with Spinal Cord Injury: Clinical Practice Guidelines
Clinical practice guidelines developed for the care of persons with spinal cord injury. These guidelines were developed to improve management of neurogenic bowel,

Neurogenic Bowel: What You Should Know
an educational guide for people with SCI and their caregivers who assist with daily bowel care. It offers tips on daily care and answers questions on the medical aspects of bowel care.

Taking Care of Your Bowels - The Basics
Consumer Education pamphlet by the NW Regional SCI System, University of Washington, describing the bowel and its function, methods for emptying the neurogenic bowel, and factors that can affect a bowel program

Taking Care of your Bowels - Ensuring Success
Consumer Education pamphlet by the NW Regional SCI System, University of Washington, describing problems with bowel programs and what to do about them

 

Bowel Care video selections in Health & Wellness chapter of the Video Resource Room Knowledge Book

 

2.8. Dental Care

Maintaining Oral Health after SCI  discusses the importance of dental care for persons living with SCI/D.  Provided by Northwest Regional Spinal Cord Injury System (NWRSCIS), it describes important considerations, precautions and criteria for appropriate dental services.

 

California only:
Smile Partners
Phone: (818) 314-0101
Contact via email
Smile Partners is a "Mobile Dental Hygiene Service" dedicated to serving patients with a wide variety of challenges, including those with complex medical conditions. Because we are a mobile service, we come to you. There is no need to move patients away from any necessary medical equipment or the safety of their familiar environment.
Debra Olsen, RDHAP is a dental hygienist in alternative practice with special training and licensing to treat outside the dental office. She can visit and treat people in their own home, bedside, chairside or where ever the patient is most comfortable.

2.9. Depression

UAB info sheet - depression 

PVA Clinical Practice Guideline - Depression

PVA Consumer Guide - Depression

 

2.10. Drug/alcohol abuse

Substance Abuse Treatment Facility Locator
Provides information on drug and alcohol abuse treatment programs throughout the U.S. The site helps visitors find treatment facilities in their communities.


Alcohol

Alcohol and Other Drug Abuse Prevention for People with Traumatic Brain and Spinal Cord Injuries
This resource manual provides information, knowledge and skills on alcohol and other drug abuse prevention to be incorporated into the rehabilitation process.

Alcohol and Your Health After SCI
Article from the Spinal Cord Injury Update newsletter by the NW Regional SCI System, University of Washington, that discusses how alcohol use after SCI can cause unique health problems. (Spring, 2003)

Alcohol after SCI  
This is one of the Educational Brochures from the Rocky Mountain Regional Spinal Cord Injury System. This document is to help people with maintaining health and living long-term with a spinal cord injury. Spanish

Alcohol, Tobacco, and Other Drugs after Disability - Guide for Family  
This is one of the Educational Brochures from the Rocky Mountain Regional Spinal Cord Injury System. This document is to help people with maintaining health and living long-term with a spinal cord injury. Spanish


Anixter Center (Chicago, IL)
Anixter Center is a provider of high-quality vocational, residential and educational options, substance abuse prevention and treatment, and health care. Anixter Center is an advocate for the rights of people with disabilities to be full and equal members of the community.


Drugs, Street


Drug Rehab Guide
The Drug Rehab Guide is a collaborative effort by addiction professionals to provide a one-stop resource for the most common questions and concerns about finding, entering and leaving a drug rehabilitation center.

Marijuana and Other Drugs after Disability  
This is one of the Educational Brochures from the Rocky Mountain Regional Spinal Cord Injury System. This document is to help people with maintaining health and living long-term with a spinal cord injury. Spanish


National Association on Alcohol, Drugs and Disability
The National Association on Alcohol, Drugs and Disability Inc., (NAADD) promotes awareness and education about substance abuse among people with co-existing disabilities.

Substance Abuse Treatment Facility Locator
The Substance Abuse Treatment Facility Locator is an online searchable directory pro- viding the location and services of more than 11,000 alcohol and drug abuse treatment facilities and programs in the United States. It also includes facilities in Puerto Rico, Guam, the Federated States of Micronesia, Palau, and the Virgin Islands. The Locator lists outpatient, residential, hospital inpatient, and partial hospitaliza- tion/day treatment facilities and programs, as well as halfway houses. It includes facilities that provide detoxi fi cation, treatment, and treatment with methadone or buprenorphine

Publications on Persons with Disabilities from Substance Abuse & Mental Health Services Administration
Printed copies of publications and materials are available from SAMHSA's NCADI. Some of these publications may also be available online.

SARDI - Substance Abuse Resources and Disability Issues
The SARDI Program seeks to improve the quality of life for persons with disabilities, including those who are concurrently affected by behavioral health issues. The SARDI Program achieves its objective by conducting collaborative and participatory research; developing intervention approaches and training; and disseminating related information.

Smoking's Effects on Secondary Complications of Spinal Cord Injury (Video)
This 11 minute video focuses on how many complications people experience after SCI are only made worse with smoking. Topics include respiratory complications (pneumonia), cardiovascular complications (blood flow), bladder cancer, osteoporosis (bone loss), pressure ulcers, pain, erectile dysfunction, and reproductive health for women. Also discussed, the almost equal harmful effects of secondhand smoke, how to quit smoking, and the benefits of quitting.

Treatment4Addiction
Treatment4Addiction.com (T4A) is a comprehensive information resource regarding addiction treatment and mental health. Our staff of addiction treatment professionals and experts have contributed a wealth of information, with the hope of providing a quality website for individuals seeking addiction treatment programs, drug interventions and resources.

2.11. Locating Free/Low-Cost/Sliding-Scale Clinics

Needy Meds is a 501(c)(3) non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.

See easily searchable database of Free/Low-Cost/Sliding-Scale Clinics.  Then click on 'Diagnosis-Based Assistance' to find information specific to spinal cord injury.

To suggest additional free or low-cost SCI/D care provision, send that program, practice or clinic information to info@needymeds.org

2.12. Locating medical advice for SCI/D

SCI/D Nurse Advice Line at Craig Hospital 
Our Information Specialists have found that nurses at Craig Hospital can provide unique information should you be scheduled for any of a broad range of diagnostic tests or surgical procedures.  They can also answer your questions about such health matters as bowel, bladder and/or skin concerns, helping you address or solve an issue before it becomes a major health problem.  This service provides a dedicated SCI nurse to answer non-emergent calls; they have the experience to help identify potential complications before they become serious health issues. In addition to answering specific health-related questions, callers can obtain general educational resources unique for healthy living with SCI/D. Don't delay; call to reach a nurse Monday-Friday, 9 a.m. – 4 p.m. (Mountain Time): 800-247-0257 or 303-789-8508.

Care Cure Forums Our Information Specialists find that Care Cure is invaluable in many cases as a resource for medically reviewed SCI/D web forum 'threads' or conversations between others living and dealing with the same SCI/D concerns. One can browse or search for related forum threads or conversations by typing the word or phrase into the Care Cure search box.

To locate a Physiatrist, see related page below.

2.13. Locating a therapist or counselor- US/Canada

Searchable database of therapists or counselors for a variety of issues including depression, anger management, family counseling, suicidal thoughts etc

2.14. Making Preventive Health Care Work for You


Making Preventive Health Care Work for YouMaking Preventive Health Care Work for You
A Resource Guide for People with Physical Disabilities

This guide was developed through a research grant awarded to NRH by the Centers for Disease Control and Prevention (CDCP). It was designed by and for people with physical disabilities in order to educate and improve access to preventive screenings essential to the health and well being of everyone.

To receive a hard copy of this Guide, please email Matt Kehn at matthew.e.kehn@medstar.net or call him at 202.877.1603.

2.15. Neurotech Network-SCI resources by category

  • Neurotechnology for Traumatic Spinal Cord Injury Fact Sheet     This NSCIA Factsheet has been developed in collaboration with Jennifer French of the Neurotechnology Network.  The fact sheet is divided into two parts.   Part 1 provides an overview of neurotechnology and its applications to spinal cord injury. Part 2 provides a listing of the devices and therapies available and additional resources.  

  • Centralized Neurotechnology Database    This up-to-date, searchable database is now available to find the latest developments in neurotechnology devices.  The purpose of this resource is to provide information to allow you to make better decisions. Final decisions regarding your health should be between you and your physician. 

       This database is provided by Neurotech Network, Inc., The Society to Increase Mobility, Inc., Neurotech Reports and its representatives; however, these    organizations do not rate, endorse, recommend or prescribe any products, procedures or services

2.16. Nutrition, Dietary and Weight Management (SEE CHAPTER 4)

For Nutrition, Dietary and Weight Management fact sheets, articles and streaming video resources, see Chapter 4 of Health & Wellness.

2.17. Pain Management

Primary Resources:

  • Pain after Spinal Cord Injury - produced through collaboration between the Model System Knowledge Translation Center (MSKTC) and the SCI Model Systems. This health information is based on research evidence and/or professional consensus; it has been reviewed and approved by an editorial team of experts
  • Pain after Spinal Cord Injury – part of a "Staying Healthy after SCI" series provided by Northwest Regional SCI Systems of Care. Brochure can be downloaded; includes detailed explanation of types of pain
  • Pain Management following Spinal Cord Injury – information sheet provided by University of Alabama; discusses types of SCI pain and its management

Secondary Resources:

  • Understanding Pain and SCI – provided by Northwest Regional SCI Systems of Care; a quick overview that includes preventive measures
  • Pain and the Brain - What brain science tells us about why we feel pain and how we can change it; a conversation with Mark P. Jensen, PhD., a University of Washington Rehabilitation Psychologist

Organizations and resources:

        The Translational Pain Research Group 1- 617-525-PAIN(7246) at the Brigham and Women's Hospital, Department of Anesthesia, are striving to bring laboratory research into a safe and effective clinical research setting       

Articles:  

  • Aching Shoulders an excellent pamphlet, developed by Craig Hospital, that discusses the risk for shoulder pain in the person who uses a wheelchair for mobility; includes risk factors, aggravators and helpful hints to combat this problem
  • Upper Extremity Pain part of the Craig Hospital pamphlet series, this pamphlet addresses the common problem of upper extremity pain and injury that can occur from daily overuse and aging; discusses types of injuries and treatment options
  • Treating SCI Pain: What the Research Says - Treatment for spinal cord injury (SCI) pain continues to be a focus of research; this summary article discusses some of the treatment options being studied
  • Upper Limb Pain in SCI  - An article in Northwest Regional SCI System's SCI Update, Spring 2012, V. 21, No. 2.  Persons who must use their shoulders, arms, and hands for transfers, wheeling and other mobility needs are at increased risk for developing problems with pain in their neck, shoulders, elbows and wrists.   This article addresses pain in each of these areas and offers tips to reduce your chances of developing pain, minimize the presence of pain, manage and treat pain
  • Using Hypnosis for SCI Pain Management – This report discusses some of the myths and misunderstandings about the use of hypnosis in a therapeutic setting.  Available as a written report or in a 4 part video.  From the University of Washington department of Rehabilitation Medicine 
  • Vitamin D and Pain - Article by Laurance Johnson, PhD, Paraplegia News, Dec 2012, V. 66, No. 12.  As a society, we are limited to sun exposure and as a result have become a vitamin deficient as a people.  This has led to disorders that are aggravated by chronic underexposure to the sun.  Some associated health problems include osteoporosis, cancer, cardiovascular disease, mental-health disorders, multiple sclerosis and diabetes.

Video Resources:

Pain management video selections are available in the Video Resource Room Knowledge Book: Health & Wellness chapter

 

2.18. Pregnancy & SCI/D

Pregnancy & SCI is a website ( that) will provide you with information and knowledge on pregnancy and childbirth in women with spinal cord injury (SCI).

2.19. Respiratory management

Respiratory Management Following Spinal Cord Injury
This consumer practice guideline is designed to meet the needs of persons with recent onset spinal cord injury whose respiratory function is compromised.  It includes recommendations for assessment, management, monitoring and education. Published by PVA on behalf of the Consortium for Spinal Cord Medicine.
 
The University of Alabama-Birmingham SCI Model System (UAB) provides an InfoSheet that reviews the function of the respiratory system after SCI, complications that can occur and how to prevent them.
 
The UAB Health Education video series on Secondary Conditions offers an 18 minutes video on Respiratory Management. It covers signs and symptoms of and general treatment options for potentially life-threatening conditions such as atelectasis, influenza, pneumonia, pulmonary embolisms, sleep apnea and ventilator use. Discusses Self-Care issues such as Smoking cessation, Congestion, Vaccinations (influenza and pneumonia), and Weight Management. Available for download or watch in streaming Real Media.

Common Respiratory Problems in SCI
SCI Forum Report from Northwest Regional Spinal Cord Injury System discusses management of pneumonia and other breathing difficulties.  It includes information on assisted coughing.
 
The Art of Breathing
An article from Craig Hospital that discusses respiratory problems after spinal cord injury.  The article explains the procedure of 'quad cough' or 'assist cough'.
 
A Breath of Air
"The Current" Newsletter Fall 2008 from the Neurotech Network featuring Breathing Systems, Cough Assist & Sleep Apnea

Smoking: Lungs, Skin, and Bladder
A pamphlet from Craig Hospital that discusses how smoking is especially harmful to individuals with SCI. Reviews the effects smoking has on the lungs, skin and bladder of a person who already has a compromised respiratory system.
 

See Respiratory Management video in the Health & Wellness chapter of the Video Resource Room Knowledge Book

2.20. Sexual Health and Fertility

Sexual Function:

UAB Spinal Cord Injury InfoSheet, Sexual Function for Men with SCI.  Revised 2007.

UAB Spinal Cord Injury InfoSheet, Sexuality for Women with Spinal Cord Injury. Revised 2007.

Craig Hospital pamphlet, Sexual Function for Men after Spinal Cord Injury.  Revised 2013. 

Craig Hospital pamphlet, Erectile Dysfunction:  Options for Men after Spinal Cord Injury.  Publication #775, Revised 2013.

NSCIA Business Member-My Pleasure.com - Sexuality and disability educational articles, advice columns and products

Fertility after SCI:

Male Fertility After Spinal Cord Injury: A Guide For Patients, Second Edition -The Male Fertility Research Program of the Miami Project to Cure Paralysis is known around the world for research and clinical efforts in the field of male infertility in the SCI population.

 

See the Sexuality & Sexual Function video presentation in Health & Wellness chapter of the Video Resource Room Knowledge Book

2.21. Skin Care & Pressure Ulcers (SEE CHAPTER 3)

For Skin and pressure ulcer fact sheets, articles and streaming video resources, see Chapter 3 of Health & Wellness.

2.22. Sleep

Sleep Problems and Sleep Apnea in Persons with SCI A written report provided by Northwest Regional SCI System is also available in an 80 minute streaming video (see related pages below).  Many people with spinal cord injuries have trouble getting a good night's sleep. Pain, breathing difficulties, and the need for care periodically through the night often disrupt sleep. Poor sleep quality can negatively affect daily life in numerous ways, including having trouble concentrating and becoming depressed. Sleep apnea is very common in people with SCI and can have serious health consequences, such as heart disease and even death. This presentation reviews the causes and consequences of sleep problems, including a detailed discussion of sleep apnea, and explains treatments that can improve your health and well-being. . In addition, an individual with SCI talks about his personal experience with sleep apnea and its treatment. At the end, Dr. Burns takes questions from the audience.

2.23. Spasticity

Basic spasticity information from NINDS

Spasticity and Spinal Cord Injury
Fact sheet from the SCI Model Systems


Patient Education about Spasticity Treatments:

ITB Therapy (Intrathecal Baclofen Therapy)
Baclofen pump information from Medtronic

Release Your Potential
Do tight, stiff muscles or spasms make it hard to perform daily activities? You may have severe spasticity. And you may be able to do something about it. While there is no cure for spasticity, there are treatments that can help manage stiff muscles. If spasticity is holding you back, it's time to release your potential! Use the information on this website to help you take control of severe spasticity. 

Upper Limb Spasticity-Indications and safety information

Treatment with ITB therapy- Exploring options & Living with a medical device (Scroll to severe spasticity or SCI specific information)

Spasticity Answers provides direction and specific resources related to the following conditions:

     * The effects of a stroke

     * Multiple Sclerosis

     * Adult Cebrebral Palsy

     * Traumatic brain injury

     * Spinal cord injury

Post-stroke spasticity: Answers for you and your loved ones (Download the attached document below)
This brochure was developed for a specific audience; in this case, post-stroke patients—and their loved ones—who want to learn more about spasticity. Topics discussed in this brochure include the following:
What is spasticity?
How do I know I have spasticity?
When does spasticity develop?
Spasticity can cause different types of problems
Who treats spasticity? What should I do if I think I may have spasticity?
How can I prepare for a discussion about spasticity treatment with my specialist?

Patient assistance programs for spasticity:

Intrathecal Drug Delivery coverage & reimbursement 

Reimbursement assistance program for uninsured patients

Open Access program (Botox treatment patient assistance) please see the Open Access brochure on this page or phone 1-800-BOTOX, Option 4.

See the Spasticity video presentations in Health & Wellness chapter of the Video Resource Room Knowledge Book

 

 

 

 

2.24. Spirituality

Spirituality, a publication of Craig Hospital regarding spirituality following SCI. Publication #763, Revised 2013.

2.25. Suicide prevention

National Suicide Prevention Lifeline Are you feeling desperate, alone or hopeless? Call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress. Your call will be routed to the nearest crisis center to you.

Red Nacional de Prevención del Suicidio

Cuando usted llama al número 1-888-628-9454, su llamada se dirige al centro de ayuda de nuestra red disponible más cercano. Cuando el centro contesta su llamada, usted estará hablando con una persona que le escuchará, le hará preguntas y hará todo lo que esté a su alcance para ayudarlo. Para información en español haga clic aquí.

For Hearing and Speech Impaired with TTY Equipment:
1-800-799-4TTY (4889)

Veterans Crisis Line

Are you a veteran in emotional distress? Please call 1-800-273-TALK and press 1 to be routed to the Veterans Crisis Line or online chat at: Veterans chat live with a counselor

Suicide warning signs

Seek help as soon as possible by contacting a mental health professional or by calling the National Suicide Prevention Lifeline at 1-800-273-TALK if you or someone you know exhibits any of the following signs:

  • Threatening to hurt or kill oneself or talking about wanting to hurt or kill oneself
  • Looking for ways to kill oneself by seeking access to firearms, available pills, or other means
  • Talking or writing about death, dying, or suicide when these actions are out of the ordinary for the person
  • Feeling hopeless
  • Feeling rage or uncontrolled anger or seeking revenge
  • Acting reckless or engaging in risky activities - seemingly without thinking
  • Feeling trapped - like there's no way out
  • Increasing alcohol or drug use
  • Withdrawing from friends, family, and society
  • Feeling anxious, agitated, or unable to sleep or sleeping all the time
  • Experiencing dramatic mood changes
  • Seeing no reason for living or having no sense of purpose in life

2.26. Women's Issues

For additional information, visit:

NSCIA womans issues

UAB resources - Woman with disabilities

3. Skin Care and Pressure Ulcers

3.1. Skin Care and Pressure Sores in Spinal Cord Injury, 6 Part Factsheet

The Pressure Sore 6 part factsheet series was produced through a collaboration between the Model Systems Knowledge Translation Center (MSKTC) and the SCI Model Systems. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly.The health information provided on MSKTC is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.

Pressure Sore 6 Part Series:     

 

 

 

3.2. Pressure Relief in a Manual Wheelchair-RRTC

PRESSURE RELIEFS IN A MANUAL WHEELCHAIR

The Push-up

One way to perform a pressure relief is to push up from your chair to take the pressure off your buttocks and the boney areas.

To perform this type of pressure relief, lock your wheels and fully loosen or unbuckle your seat belt, then lift using the arm rests of your chair so that your buttocks lift off of the cushion.  If you do not have arm rests, you can press up from your wheels.  

Once up, fully extend your arms and lock your elbows.  It is important to make sure you completely lift your buttocks off the cushion and hold for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team) so that your skin can recover from the pressure of sitting. 

 

Leaning from Side to Side

This technique is useful for performing discreet pressure reliefs in social settings or if you are unable to completely lift your buttocks off the cushion.

One way to perform a pressure relief is to lean to your side to remove pressure off your buttock.  Please note that this is considered only half of a relief as only one buttock is lifted at a time.  You will need to perform this relief to each side for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

Lean to the right side until the left buttock including the boney area is lifted off your seat cushion.  You may need to push through the arm rest and lock out your left elbow to achieve the full weight shift and clearance.  If you do not have arm rests, you can press up from your wheels.  Return to your sitting position and repeat on the opposite side. Lean your body to the left until you achieve full clearance of the right buttock, including the boney area and hold. 

Leaning Forward

To perform this pressure relief, lean forward to remove pressure from your buttocks. Before starting this activity, make sure to lock you wheelchair.

Lean forward in your chair until you can slide your hands underneath your buttocks and hold that position for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

One option is to lean forward and rest your chest on your knees. Another method is to lean forward on a desk or table.  The key is to make sure you have pressure off your buttocks and boney areas. 

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

 

3.3. Pressure Relief in a Power Chair-RRTC

Pressure Reliefs in a Power Wheelchair

 

Tilting or Reclining

One way to perform a pressure relief is to make your chair tilt or recline to take the pressure off your buttocks and boney areas.

Stay in a tilt position for at least 30 seconds every 15-30 minutes unless a different amount of time is recommended by your medical team. Make sure you get training from your health care provider on how to tilt or recline in the chair that YOU use.  It is important to make sure you are relieving enough pressure and also doing it safely!  Talk with your health care provider about how you should position your seat belt when tilting or reclining. 

Tilt Systems maintain the seat-to-back angle of your chair the same but change the angle of your seating system relative to the ground.

Research supports using maximum tilt to properly relieve pressure and assure adequate blood flow.  You should consult your medical health professionals to determine the tilt angle that will provide you the most appropriate pressure relief.

Recline systems can elevate your legs and open the seat-to-back angle of your chair to reduce the pressure.  The seat angle stays the same with respect to the ground.  Your health care provider will help you find the most appropriate technique and technology to assist you with your pressure relief.

 

Leaning Forward

Turn off your power chair before starting this activity and reposition your seat belt as needed.

To perform this pressure relief, lean forward to remove pressure from your buttocks.  Don't try this alone unless you are sure you are able to get back up!  The key is to make sure you have pressure off your buttocks and boney areas.  One option is to lean forward and rest your chest or elbows on your knees.

Another method is to lean forward on a desk or table.  Lean forward in your chair until your boney areas are off your cushion and hold that position for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless a different amount of time is recommended by your medical team).

A Modified Leaning Side to Side 

Turn off your power chair before starting this activity and reposition your seat belt as needed.  

Don't try this alone unless you are sure you are able to get back up!

One way to perform a pressure relief is to lean to your side to take pressure off your opposite buttock.  Please note that this is considered only half of a pressure relief because only one buttock is lifted at a time.  You will need to perform this pressure relief to each side for 15 seconds every 15 minutes or 30 seconds every 30 minutes (unless your medical team recommends a different amount of time).

This participant is demonstrating a modified leaning side to side pressure relief by hooking her elbow behind the wheelchair push handle.  She could have used the back rest to do this as well.  Lean to the left side until the right buttock including the boney area is lifted off your seat cushion. 

You may need to push through the arm rest of your chair and lock out your right elbow to achieve the full weight shift and clearance.  Now, do a pressure relief to the other side, reversing the procedure.

You can also use a table or other solid object to lean against for help.  When you have finished your pressure relief, you can push off the table to help you return to sitting. You may also be able pull yourself up using your wheelchair arm rest, back or push handle. Next, do a pressure relief to the other side.  

Disclaimer

This fact sheet only provides general information.  It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition.  It is not a substitute for professional medical advice relative to your specific medical conditions.  Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

3.4. Skin Breakdown, Pressure Ulcer Prevention with SCI-RRTC

Untreated pressure sores can lead to widespread infections, limb amputations or worse—loss of life! Even minor problems can get out of hand, limiting your ability to take care of yourself, function at work, or result in lengthy and costly hospital stays.

There is no such thing as an insignificant pressure sore.

What is a pressure sore?

A pressure sore (also called pressure ulcer, decubitus ulcer, bedsore, or skin breakdown) is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. Blood flow to the skin keeps it alive and healthy. If the skin does not get

blood, it will die. Normally, sensation acts as a warning system, signaling you to move or shift your weight to let blood flow return to an area before damage occurs. Because you may not be able to feel discomfort or pain after a spinal cord injury, you cannot depend on your sensation of pressure to cue you to move or shift weight to relieve pressure. Skin breakdown happens when pressure decreases blood flow to the skin. Up to 80% of individuals with SCI will have a pressure sore during their lifetime, and 30% will have more than one pressure sore.

How do pressure sores happen?

 

TOO MUCH PRESSURE ON THE SKIN FOR TOO LONG.. Unrelieved pressure is the most common cause of pressure sores in SCI. Common high-pressure situations are:

 Not having a proper wheelchair cushion.

 Sitting too long without performing a pressure relief.

 Lying too long without turning to relieve pressure.

 Not enough padding in bed (to protect bony areas of the body, such as the heels and hips)

 Clothing and shoes that fit too tightly

 Sitting or lying on hard objects

 Poor sitting posture

 

Besides pressure on the skin, other factors increase your risk of forming pressure ulcers too:

 Decreased circulation, due to:

 Smoking

 Diabetes

 High blood pressure

 Poor positioning & poor cushion support.

 Physical activity that increases repetitive pressure over an area vulnerable to breakdown or causes excessive perspiration (sweat) in a vulnerable area.

 Shearing of the skin

 Poor nutrition & dehydration

 Aging - as you age your skin will become more thin and vulnerable to injury.

 Being over- or underweight

 Loss of muscle mass that previously would have provided a natural cushion over the boney parts of your body (such as heels, hips, and tailbone, also known as the "sacrum").

 Moisture - wet skin (from urine, stool , sweat, water) is more likely

 

Poor circulation can lead to pressure sores and other skin related issues such as heightened sensitivity, scrapes or bruises that take longer to heal, and chafing due to excess moisture or sweating. Without enough blood, oxygen, and nutrients, your skin can't stay healthy.

 

Sitting or lying in one position for a long period of time decreases blood circulation to the areas supporting your body weight. Pressure sores usually form on parts of the skin close to bone (such as hips and heels) that carry weight when you sit or lie down for a long time.

 

Swelling or "edema"– often a side effect of paralysis – leaves skin more vulnerable to injury and breakdown. Elevate your legs a few times a day as well as your arms. Support socks/stockings can also help with swelling, however it's best to consult a doctor or nurse regarding foot care and footwear.

 

Smoking reduces circulation and makes you prone to frequent pressure sores because it dries out the skin. It also increases your risk of respiratory infections such as pneumonia and bronchitis. So, whether you are a heavy or light smoker, the effects on your body are still very harmful!

Find out more by reading, "Smoke? STOP!!" at:

http://www.spinalcord.uab.edu/show.asp?durki=108408   

 

The Importance of Positioning

About seventy-five percent of your body's weight is concentrated on your buttocks when you sit upright (MedlinePlus, 2009). Although wheelchair cushions reduce pressure, good skin care and positioning are the most important part of preventing sores. Areas of your body where you are very likely to develop a pressure sore when you are in your wheelchair are:

 Your tailbone or buttocks

 Your shoulder blades and spine

 The backs of your arms and legs where they rest against the chair

 Your heels

 

Positioning

Changing positions frequently is key in preventing skin breakdown. Having a schedule for changing positions is one of the best ways to help prevent pressure sores. When in your chair, pay attention to your posture; slouching puts more pressure on the lower back and tailbone (sacrum) areas. In a seated position, try to maintain a 90-degree (right) angle between your upper body and your hips. When sitting in your wheelchair, you should do pressure reliefs every 15 to 30 minutes. In bed, you can reduce pressure by placing pillows under and between your legs, and a general recommendation is to change positions every two hours when in bed.

 

Tips for Changing Positions

 Perform weight shifts every 15-30 minutes while sitting.

 Turn or reposition at least every two hours while in bed.

 Use pillows under and/or between legs when lying in bed to keep bones from rubbing together.

 Avoid lying directly on the hip bone and keep a 30-degree angle position.

 When lying on your back, keep your lower legs up by placing a thin foam pad or pillow under the lower part of the legs (mid-calf

       to ankle). Do not place the pad or pillow directly under the knee—this reduces the flow of blood to the lower leg areas.

 Use pillows or small pads to keep the knees and ankles from touching each other

 

The Importance of Staying Active, Eating Healthy

Physical Activity

Physical activity has many health benefits and is important for your health and circulation. However, excessive sweating and moisture resulting from exercise make you an easy target for skin breakdown. When exercising, use towels for excess sweat and wear lightweight or loose

clothing to help skin breathe. Don't stay in wet clothing after exercising. Pay close attention to your skin's reaction to things like lotions, powders, or fragrances.

Nutrition You already know that SCI changes your body composition and the way your body uses food. Because of these changes, fewer calories are needed, so you should really try to make those calories count. Try to eat a consistent and balanced diet. Don't skip meals or cut out certain food groups.

Poor diet increases your risk of pressure sores and will make it more likely to have recurring pressure sores, more difficulty with healing, and more severe infections. Poor nutrition promotes swelling, which is bad for circulation, and prevents oxygen from getting to cells throughout your body. Being overweight is also risky because it's harder to shift your weight, do pressure reliefs, and move around. Your doctor, nurse, or a dietitian can give you advice about balancing your diet.

Hydrate

You need lots of water! If you've got a wound or sore, you can lose more than a

liter of water each day, just as part of the healing process! Hydration is also key to

maintaining healthy circulation and skin health. While 6-8 cups may be recommended

for someone on a catheterization program, others might need more than that. Talk to your doctor about your fluid intake. Also, if you're losing fluids from an open sore -- or for any other reason -- you'll need to increase your water intake even more and avoid drinking alcohol. If you do choose to drink alcohol, use it in moderation. Excessive alcohol consumption often leads to

dehydration and can prevent your body from effectively using food and vitamins.

 

Good Eats

A healthy well-balanced diet is important

 

Proteins: Lean meats, eggs, dairy foods, and beans and legumes help

maintain skin elasticity.

Carbs: Complex carbs (carbohydrates) like fruits, vegetables, and whole

grain breads and cereals give you the calories you need for energy,

nourishment and wound healing. Simple carbs include refined flours

and sugars and are more fattening and negatively affect your health.

Zinc: Found in foods like fish, red meats, whole grains, and beans, zinc is crucial for skin repair because it helps metabolize carbohydrates, fats and proteins.

Vitamins: Both Vitamins A and C increase skin's strength. Vitamin A is found in dark green and orange vegetables; cantaloupe, and milk. Vitamin C is found in citrus fruits and many vegetables. Talk to a doctor before taking vitamins or supplements and be careful of overdose! Beware that too much vitamin A can be toxic (poisonous).

 

General Health

Your physical health affects your skin. If you're sick, every part of your body can be affected. Fevers change your metabolism (i.e. how your body manages energy), alter skin tolerance, and lower your body's infection resistance. Bladder infections don't just affect your bladder; ear infections don't just affect your ears. Remember to check your skin at least twice a day for signs of breakdown because loss of sensation can make it hard to perceive pressure and pain. If you've been sick or hospitalized, muscle atrophy (getting smaller) and weight loss can occur quickly. In either case, you lose fat and muscle that help cushion your bones and your risk of pressure sores increases.

 

Take Home Tips:

 

Remember That...

 You should check your skin at least twice a day.

 You should change body positions every 2 hours when in bed.

 You should do pressure reliefs in your chair every 15-30 minutes.

 Try to maintain good posture and avoid positions that allow you to slide or slump.

 Avoid sliding when transferring on surfaces (e.g., from the wheelchair to bed)—this causes

       friction that can lead to skin abrasions.

 Smoking greatly increases your risk for pressure sores as well as many other health issues.

 As you age with your injury, you are more susceptible to pressure sores and skin breakdown.

 Good hygiene, nutrition and attitude make all the difference in your health.

 You should inspect your equipment often and periodically get your equipment reassessed by a rehabilitation professional.

Sources:

MedlinePlus Medical Encyclopedia: Pressure Ulcer (Online). [Accessed 12/20/2010]: http://www.nlm.nih.gov/medlineplus/ency/article/007071.htm

Modelsystems Knowledge Translations Center (MKSTC). SCI Skincare and Pressure Sores. [Accessed 12/20/2010]: http://msktc.washington.edu/sci/

factsheets/sci_factsheets.asp#skin

For more information or alternative formats, please visit our web site at:

http://www.sci-health.org  or call 1-877-278-0644

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

Copyright © 2011 RRTC on Spinal Cord Injury - All Rights Reserved

Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education Grant #H133B090002


3.5. Skin Care-RRTC

Skin Care: Skin Breakdown and Pressure Ulcer Prevention in Persons with SCI

Untreated pressure sores can lead to widespread infections, limb amputations or worse— loss of life! Even minor problems can get out of hand, limiting your ability to take care of yourself, function at work, or result in lengthy and costly hospital stays. There is no such thing as an insignificant pressure sore.

What is a pressure sore?

A pressure sore (also called pressure ulcer, decubitus ulcer, bedsore, or skin breakdown) is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. Blood flow to the skin keeps it alive and healthy. If the skin does not get blood, it will die.

Normally, sensation acts as a warning system, signaling you to move or shift your weight to let blood flow return to an area before damage occurs.  Because you may not be able to feel discomfort or pain after a spinal cord injury, you cannot depend on your sensation of pressure to cue you to move or shift weight to relieve pressure. Skin breakdown happens when pressure decreases blood flow to the skin. Up to 80% of individuals with SCI will have a pressure sore during their lifetime, and 30% will have more than one pressure sore.

How do pressure sores happen?

TOO MUCH PRESSURE ON THE SKIN FOR TOO LONG is the most common cause of pressure sores in SCI. Common high-pressure situations are:

  • Not having a proper wheelchair cushion.
  • Sitting too long without performing a pressure relief.
  • Lying too long without turning to relieve pressure.
  • Not enough padding in bed (to protect bony areas of the body, such as the heels and hips.
  • Clothing and shoes that fit too tightly.
  • Sitting or lying on hard objects.
  • Poor sitting posture.

 Besides pressure on the skin, other factors increase your risk of forming pressure ulcers too:

  • Decreased circulation, due to:
    • Smoking,
    • Diabetes,
    • High blood pressure.
    • Poor positioning & poor cushion support.
    • Physical activity that increases repetitive pressure over an area vulnerable to breakdown or causes excessive perspiration (sweat) in a vulnerable area.
    • Shearing of the skin.
    • Poor nutrition & dehydration .
    • Aging - as you age your skin will become thinner and more  vulnerable to injury.
    • Being over-or underweight.
    • Loss of muscle mass that previously would have provided a natural cushion over the bony areas of your body (such as heels, hips, and tailbone, also known as the "sacrum").
    • Moisture - wet skin (from urine, stool , sweat, water) is more likely to break down.
    • Dry, flaky skin can crack and become inflamed and infected.

Circulation

 Poor circulation can lead to pressure sores and other skin problems. Some of these problems are increased sensitivity, scrapes or bruises that take longer to heal, and chaffing due to excess moisture or sweating. Without enough blood, oxygen, and nutrients, your skin can't stay healthy.

Sitting or lying in one position for a long period of time decreases blood circulation to the areas supporting your body weight. Pressure sores usually form on parts of the skin close to bone (such as hips and heels) that carry weight when you sit or lie down for a long time.

Swelling or "edema"– often a side effect of paralysis – leaves skin more vulnerable to injury and breakdown. Elevate your legs a few times a day as well as your arms. Support socks/stockings can also help with swelling, however it's best to consult a doctor or nurse regarding foot care and footwear.

Smoking reduces circulation and makes you prone to frequent pressure sores because it dries out the skin. It also increases your risk of respiratory infections such as pneumonia and bronchitis. So, whether you are a heavy or light smoker, the effects on your body are still very harmful!

Find out more by reading, "Smoke? STOP!!" at: http://www.spinalcord.uab.edu/show.asp?durki=108408.

THE IMPORTANCE OF POSITIONING

About 75% of your body's weight is concentrated on your buttocks when you sit upright (MedlinePlus, 2009). Although wheelchair cushions reduce pressure, good skin care and positioning are the most important part of preventing sores.  Areas of your body where you are very likely to develop a pressure sore when you are in your wheelchair are:

  • Your tailbone or buttocks.
  • Your shoulder blades and spine.
  • The backs of your arms and legs where they rest against the chair.
  • Your heels.

 Positioning

Changing positions frequently is key in preventing skin breakdown. Having a schedule for changing positions is one of the best ways to prevent pressure sores. When in your chair, pay attention to your posture; slouching puts more pressure on the lower back and tailbone (sacrum) areas. In a seated position, try to maintain a 90-degree (right) angle between your upper body and your hips. When sitting in your wheelchair, you should do pressure reliefs every 15 to 30 minutes. In bed, you can reduce pressure by placing pillows under and between your legs, and a general recommendation is to change positions every two hours when in bed.

Tips for Changing Positions

  • Perform weight shifts every 15-30 minutes while sitting
  • Turn or reposition at least every two hours while in bed
  • Use pillows under and/or between legs when lying in bed to keep bones from rubbing together
  • Avoid lying directly on the hip bone and keep a 30-degree angle position
  • When lying on your back, keep your lower legs up by placing a thin foam pad or pillow under the lower part of the legs (mid-calf to ankle). Do not place the pad or pillow directly under the knee—this reduces the flow of blood to the lower leg areas.
  • Use pillows or small pads to keep the knees and ankles from touching each other

 THE IMPORTANCE OF STAYING ACTIVE AND EATING HEALTHY

Physical Activity

Physical activity has many health benefits and is important for your health and circulation. However, excessive sweating and moisture resulting from exercise make you an easy target for skin breakdown. When exercising, use towels for excess sweat and wear lightweight or loose clothing to help skin breathe. Don't stay in wet clothing after exercising. Pay close attention to your skin's reaction to things like lotions, powders, or fragrances.

Nutrition

You already know that SCI changes your body composition and the way your body uses food. Because of these changes, fewer calories are needed, so you should really try to make those calories count. Try to eat a consistent and balanced diet. Don't skip meals or cut out certain food groups. Poor diet increases your risk of pressure sores and will make it more likely to have recurring pressure sores, more difficulty with healing, and more severe infections. Poor nutrition promotes swelling – which you already know is bad for circulation – and prevents oxygen from getting to cells throughout your body. Being overweight is also risky because it's harder to shift your weight, do pressure reliefs, and move around. Your doctor, nurse, or a dietitian can give you advice about balancing your diet.

Hydrate

Drink Water!!

You need lots of water! If you've got a wound or sore, you can lose more than 4 cups of water each day, just as part of the healing process! While 6-8 cups may be recommended for someone on a catheterization program, others might need more than that. Ask your doctor how much water is right for you.

Also, if you're losing fluids from an open sore – or for any other reason – you'll need to increase your water intake even more. Drinking alcohol is not recommended. If you do choose to, use it in moderation because it often leads to dehydration. It can also prevent your body from effectively using food and vitamins.

Good Eats

A healthy well-balanced diet is important:

  • Proteins: Lean meats, eggs, dairy foods, and beans and legumes help maintain skin elasticity.
  • Carbs: Complex carbs (carbohydrates) like fruits, vegetables, and whole grain breads and cereals give you the calories you need for energy, nourishment, and wound healing. Simple carbs include refined flours and sugars and are more fattening and negatively affect your health.
  • Zinc: Found in foods like fish, red meats, whole grains, and beans, zinc is crucial for skin repair because it helps metabolize carbohydrates, fats, and proteins.
  • Vitamins: Both Vitamins A and C increase skin's strength. Vitamin A is found in dark green and orange vegetables; cantaloupe, and milk. Vitamin C found in citrus fruits and many vegetables. Talk to a doctor before taking vitamins or supplements and be careful of overdose! Beware that too much vitamin A can be toxic (poisonous).

General Health

Your physical health affects your skin. If you're sick, every part of your body can be affected. Fevers change your metabolism (i.e. how your body manages energy), alter skin tolerance, and lower your body's infection resistance. Bladder infections don't just affect your bladder; ear infections don't just affect your ears. Remember to check your skin at least twice a day for signs of breakdown because loss of sensation can make it hard to perceive pressure and pain. If you've been sick or hospitalized, muscle atrophy (getting smaller) and weight loss can occur quickly. When this happens, you have less fat and muscle that help cushion your bones and your risk of pressure sores increases.

Take Home Tips:

Remember That...

  • You should check your skin at least twice a day.
  • You should change body positions every 2 hours when in bed.
  • You should do pressure reliefs in your chair every 15-30 minutes.
  • Try to maintain good posture and avoid positions that allow you to slide or slump.
  • Avoid sliding when transferring on surfaces (e.g., from the wheelchair to bed)—this causes friction that can lead to skin abrasions.
  • Smoking greatly increases your risk for pressure sores as well as many other health issues.
  • As you age with your injury, you are more susceptible to pressure sores and skin breakdown.
  • Good hygiene, good nutrition, and a good attitude make all the difference in your health.
  • You should inspect your equipment often, and periodically getting your equipment reassessed by a rehabilitation professional

 Sources:

For more information or alternative formats, please visit our web site at: http://www.sci-health.org or call 1-877-278-0644.

Disclaimer

This fact sheet only provides general information. It is only for informational and educational purposes and should not be used to diagnose or treat a medical condition. It is not a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your doctor or other qualified health provider before starting any new treatment or with any questions you may have about your medical condition.

Funded by the US Dept. of Education, NIDRR, Grant #H133B090002

3.6. Miscellaneous: Skin Care and Pressure Sores

UAB pressure sore info sheet

NWRSCIS Skin Care and Pressure Sore fact sheet - NEW

NWRSCIS Forum presented an educational video in January 2012 that is also available in print  Pressure Ulcers Can Wreck You Life: Preventing and Managing Skin Problems after SCI - It includes vital information about preventing pressure ulcers, inspecting your skin, recognizing early signs of skin breakdown, treatment options available, monitoring and managing healing and much more. Photos of pressure ulcers in different stages are also included.

PVA Clinical Practice Guideline-Pressure ulcers

PVA Consumer guide-Pressure Ulcers; What You Should Know

New Mobility Skin Care and Pressure Sore-related articles:

A New Model for Wound Care April 2013

Healthy Skin, Healthy Healing January 2011

Deep Tissue Pressure Sores March 2011

Understanding Cellulitis May 2011

Escaping the Hot Seat April 2008

See the Skin Care & Pressure Sore video presentation in Health & Wellness chapter of the Video Resource Room Knowledge Book

4. Nutrition, Dietary and Weight Management

4.1. Weight Management and SCI-RRTC

WEIGHT MANAGEMENT AND SCI

Weight management is hard for many of us no matter what time of the year. For individuals with SCI, it is even harder to maintain a healthy weight and avoid putting on some extra pounds due to the reduced ability to move around. Trying to eat healthy will not only help you to maintain your weight, but it is also important for bowel/bladder management, prevention of skin breakdown, and for your overall health.

No matter what time of the year it is, there are always delicious foods to enjoy that might contribute to unwanted weight gain. Although we can all splurge from time to time, trying to maintain a healthy eating pattern and avoiding overeating is always a good practice.

To put things into perspective, consuming one cup of French fries each day for one week will cause one pound of weight gain.  Listed below are some common foods to show where extra pounds and calories may be coming from:

Food

Serving Size

Calories

Pounds

Cheeseburger

1 small, 4 inch width

360

0.103

Chicken Caesar Salad

2 cups

560

0.160

Tuna Salad Wrap

1 wrap

580

0.166

Chicken Quesadilla

1 tortilla

300

0.086

Pizza with cheese only

1/8 of pie

140

0.040

French Fries

1 cup

460 

0.131

Macaroni & Cheese

1 cup

360

0.103

Honey-Glazed Ham

4 ounces

230

0.066

Mashed Potatoes with Gravy

½ cup with ¼ cup gravy

170

0.049

Dinner Roll

2 rolls

220

0.063

Soda, coca-cola

2 cups

194

0.055

Apple juice, 100%

2 cups

234

0.067

Orange juice, 100%

2 cups

224

0.064

Cranberry juice, 100%

2 cups

240

0.069

Hot Chocolate

1 cup

190

0.054

 Controlling portion size is one way to cut calories and curb possible weight gain. In the example above, the ham is served as a 4 oz. portion although it is not uncommon for a single serving of meat in a restaurant to be closer to 8-10 oz and for side dishes to be larger than ½ cup. Below are illustrations of common objects you can use to estimate portion size:

 ½ cup = Light bulb     

1 cup= Baseball         

                                                                                                

1 tbsp= Poker chip     

1 oz or 2 tbsp=

Golf ball                     

 
For more portion guidelines and a Portion Guide, see:

http://img.webmd.com/dtmcms/live/webmd/consumer_assets/site_images/media/pdf/diet/portion-control-guide.pdf

HOW MUCH SHOULD I WEIGH?
While there are no specific weight guidelines for individuals with SCI, the general rule is to subtract 5-10% from general weight guidelines for paraplegia, and 10-15% for tetraplegia.

For example, the target weight for a 6'0" man with paraplegia is 150-158 lbs, while a 6'0" man with tetraplegia has a target weight of 142-150lbs.  A 5'6" female with paraplegia's target weight is 126-133 lbs. If she has tetraplegia, it's 119-126 lbs.

DAILY CALORIE INTAKE

Depending on level of activity, people with SCI tend to need fewer calories per day. Cox et al[2] developed a formula to calculate caloric needs. The formula is:

  • Persons with paraplegia: 27.9 calories x body weight in kg. (1 kg = 2.2 lbs)
  • Persons with tetraplegia: 22.7 calories x body weight in kg.

The formula is based on your target weight. Although this formula is still being used, it has several limitations:

  • The formula doesn't account for gender or age - Older people tend to need fewer calories than younger people.
  • The formula doesn't account for your activity level - The more active you are, the more calories you burn and the easier it is to control weight gain

WEIGHT MANAGEMENT TIPS

  • Eat regular meals.
  • Don't overeat.
  • Try to find a healthy pattern and stick to it.
  • Stay as active as possible.

RESOURCES

WEIGHT MANAGEMENT PROGRAM: For those of you who have made a commitment to do something about weight management or who are just interested in learning more about it, the University of Alabama Spinal Cord Injury Model System has designed a 12 week program specifically for individuals with spinal cord injury. The EatRight program includes a weekly  workbook and a video of the topic of the week.

http://www.uab.edu/medicine/sci/uab-scims-information/eatrightr-weight-management-program

NUTRITION FACTSHEET

http://sci-health.org/RRTC/publications/PDF/SCI-Nutrition.pdf

REFERENCES


[1] Height and Weight Ratio Chart. Disabled World - Disability News for all the Family. Available at http://www.disabled-world.com/artman/publish/height_weight.shtml#ixzz2Gv7yoIpD

[2] Energy expenditure after spinal cord injury: an evaluation of stable rehabilitating patients. Cox SA, Weiss SM, Posuniak EA, Worthington P, Prioleau M, Heffley G. J Trauma 1985;May 25(5):419-23.

4.2. Nutrition-RRTC

Eating is one of life's greatest pleasures. Your body needs food that is rich in nutrients to create energy, resist infection and enable you to have a full, productive life. After a spinal cord injury, how your body's systems – such as bowel, bladder and skin – function are altered due to your paralysis. Because you are less active, your muscles and bones may become weaker. Your circulatory and respiratory systems that pump blood and oxygen to your heart, lungs and throughout your body may not work as effectively. You will also need to pay attention to your bowel and bladder function. With less physical activity, you burn off fewer calories and may gain weight or possibly maintain weight but replace muscle with fat. Excess weight adds stress on your heart and may make weight shifts and transfers more difficult. This can contribute to skin breakdown or pressure ulcers. One thing that you can do to reduce some of these risks is to maintain a healthy diet.

 


Specific diet recommendations for spinal cord injury include:
1. Adequate fiber* and fluids to prevent constipation;
2. Adequate protein** to prevent pressure ulcers and preserve lean body mass (muscles);
3. Low fat foods and drinks to prevent weight gain;
4. Taking in fewer calories to balance your lower energy use.

*Fiber sources include whole grain products, fruits and vegetables. Try making half of your grain food choices whole grain. The
recommendation for daily fruit and vegetable intake is at least 5 choices per day. For more fiber, choose the actual fruit or vegetable rather than dried fruit or juice.

 
**Protein sources include meats, poultry, eggs, fish, tofu, and beans. Choose a variety of protein foods that are lean or low fat. Beans are a great substitute for meat and will provide fiber as well. A high percentage of American's are becoming increasingly overweight or obese. This is often due to high calorie foods containing fat and sugar in combination with little or no exercise. The good news is that by following recommended dietary guidelines and eating nutritionally-balanced meals, you can prevent or lessen the chances for medical complications. This important choice is yours.

Copyright © 2012 RRTC on Spinal Cord Injury - All Rights Reserved
Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education. Grant #H133B090002. The opinions expressed on these pages are those of the authors, and no official endorsement by the Department of Education or any other funding source should be inferred.

Dietary Guidelines


In 2010, the USDA published the Dietary Guidelines for Americans. The guidelines recommend making changes in three areas – balancing calories, increasing intake of some foods, and reducing intake of others. You should choose the steps that work for you and then begin today by:

Balancing Calories
- Enjoy your food, but eat less. Eating too fast or when your attention is elsewhere (such as eating while reading or watching television) may lead to eating too many calories. Pay attention to hunger and fullness cues before, during, and after meals.

- Avoid oversized portions. Use a smaller plate, bowl, and glass.

Portion out foods before you eat. When eating out, choose a smaller size option, share a dish, or take home part of your meal.
Increasing Intake of Healthy Foods

- Make half your plate fruits and vegetables. Eat red, orange, and dark-green vegetables, such as tomatoes, sweet potatoes, and broccoli, in main and side dishes. Buy fresh fruits and vegetables in season or frozen without added sauces, sugars, or syrups.

- Eat fruit, vegetables, or unsalted nuts as snacks—they are nature's original fast foods.

- Make at least half your grains whole grains. Choose 100% whole-grain cereals, breads, crackers, rice, and pasta. Look for "whole grain" on the package or ingredients list. Wheat and 100% wheat are not the same as whole grain. Whole grain flours are ground with the bran and
germ. The flavor is somewhat stronger than white or wheat flour and may have a rougher texture.

- Switch to fat-free (skim) or low-fat (1%) milk. They have the same amounts of calcium, vitamin D, and other essential nutrients as whole milk, but less fat, cholesterol, and calories. Low fat soy or other cow milk alternatives are also good choices as long as they contain at least 30% DV calcium and 25% vitamin D per one cup serving.

Reducing Intake of Other Foods

- Compare sodium in foods like soup, bread, and frozen meals—and choose the foods with lower numbers. Sodium, a component of salt, can raise blood pressure; so, it is best to keep your overall daily sodium intake between 1500-2300mg. Add spices or herbs to season food without adding salt.

- Drink water or unsweetened beverages instead of sugary drinks. There are about 10 packets of sugar in a 12-ounce can of regular soda.

- Make major sources of saturated fats—such as cakes, cookies, ice cream, pizza, cheese, sausages, and hot dogs—occasional choices, not everyday foods.

- Switch from solid fats to oils such as olive oil or canola oil when preparing food. Using cooking spray is a low-fat, calorie-free option.

The Dietary Guidelines for Americans, 2010, are some of the best science-based advice on how to eat for health. The Guidelines encourage all Americans to eat a healthy diet and be physically active.

The 10 Tips Education Series Available online at the www.choosemyplate.gov website are some excellent factsheets in the 10 Tips Education Series. Dietary Guidelines (DG) TipSheet No. 8 provides tips on how to liven up your meals with vegetables and fruits.

 

There are many benefits from adding vegetables and fruits to your meals. They are low in fat and calories, while providing fiber and other key nutrients. Most Americans should eat more than 3 cups—and for some, up to 6 cups—of vegetables and fruits each day. Vegetables and fruits don't just add nutrition to meals. They can also add color, flavor, and texture. Explore these creative ways to bring healthy foods to your table.

 

#1 Fire up the grill
Use the grill to cook vegetables and fruits. Try grilling mushrooms, carrots, peppers, or potatoes on a kabob skewer. Brush with oil to keep them from drying out. Grilled fruits like peaches, pineapple, or mangos add great flavor to a cookout.

#2 Expand the flavor of your casseroles
Mix vegetables such as sautéed onions, peas, pinto beans, or tomatoes into your favorite dish for that extra flavor.

#3 Planning something Italian?
Add extra vegetables to your pasta dish. Slip some peppers, spinach, red beans, onions, or cherry tomatoes into your traditional tomato sauce. Vegetables provide texture and low-calorie bulk that satisfies.

#4 Get creative with your salad
Toss in shredded carrots, strawberries, spinach, watercress, orange segments, or sweet peas for a flavorful, fun salad.

 

#5 Salad bars aren't just for salads
Try eating sliced fruit from the salad bar as your dessert when dining out. This will help you avoid any baked desserts that are high in calories.

#6 Get in on the stir-frying fun
Try something new! Stir-fry your veggies—like broccoli, carrots, sugar snap peas, mushrooms, or green beans—for a quick-and-easy addition to any meal.

#7 Add them to your sandwiches
Whether it is a sandwich or wrap, vegetables make great additions to both. Try sliced tomatoes, romaine lettuce, or avocado on your everyday sandwich or wrap for extra flavor.

#8 Be creative with your baked goods
Add apples, bananas, blueberries, or pears to your favorite muffin recipe for a treat.

#9 Make a tasty fruit smoothie
For dessert, blend strawberries, blueberries, or raspberries with frozen bananas and 100% fruit juice for a delicious frozen fruit smoothie.

#10 Liven up an omelet
Boost the color and flavor of your morning omelet with vegetables. Simply chop, saute, and add them to the egg as it cooks. Try combining different vegetables, such as mushrooms, spinach, onions, or bell peppers.

Improving what you eat and being active will help to reduce your risk of chronic diseases such as diabetes, heart disease, some cancers, and obesity. For people with spinal cord injury, eating healthy will help prevent pressure ulcers and preserve lean body mass. For more information on spinal cord injury or good nutrition in general, visit the following websites or request a call back from a registered dietitian at the MedStar National Rehabilitation Hospital by calling 877-278-0644 and leaving a message with your name, telephone number and best time to reach you.

Useful websites
www.sci-health.org
www.DietaryGuidelines.gov
www.ChooseMyPlate.gov
www.HealthFinder.gov

Excerpted from SCI & Nutrition Facts, published by the RRTC in Community Integration for Individuals with Spinal Cord Injury at Baylor College of Medicine and TIRR (The Institute for Rehabilitation and Research), Houston, TX, 2002; Let's eat for the health of it, USDA Publication number: Home and Garden Bulletin No. 232-CP, June 2011 and USDA Center for Nutrition and Policy Promotion 10 Tips Nutrition Education Series DG TipSheets No. 8, June 2011, http://www.choosemyplate.gov/healthy-eating-tips/ten-tips.html.

4.3. Nutrition (Articles & fact sheets)

Everyday Nutrition for Individuals with SCI - a SCI forum presentation that took place on April 12, 2011 at the University of Washington Medical Center.  This presentation discusses the unique nutritional needs of individuals with spinal cord injuries and provides tips for incorporating your nutritional goals into your daily eating habits. Topics include calorie guidelines, protein requirements and other nutrients needed for maintaining healthy skin, heart, weight and bones and for promoting bowel and bladder health.  This is also available in video format; see 'related pages' below

Cholesterol
A pamphlet from Craig Hospital that reviews what is cholesterol,what makes cholesterol work; how to be tested , and how to make healthy food selections.

Cutting the Fat
An article by Craig Hospital Research Department from their SCI Health and Wellness series that discusses ways to decrease fat in one's diet and it's role in keeping the heart and circulatory system healthy.
A Factsheet prepared by the RRTC on Secondary Conditions in Rehabilitation of Individuals with Spinal Cord Injury.  Provides guidelines for maintaing a healthy diet that will help reduce your risk for secondary conditions of spinal cord injury.  Also includes practical suggestions for healthy dietary changes. 
 
EatRight for SCI Weight Management
A presentation about the EatRight® program from the New England Regional Spinal Cord Injury Center's 3rd Annual Stepping Forward-Staying Informed Consumer Conference

Nutrition Guidelines for Individuals with SCI
Nutritional information from the Northwest Regional SCI System, SCI Forums Report June 2006.

Weight Gain Aging, SCI and the Battle of the Bulge
A pamphlet from Craig Hospital that discusses the problem of weight gain as one ages with SCI and what to do to control one's weight.

Weight Management after Spinal Cord Injury
Being overweight is a common problem for people with spinal cord injury (SCI). Some research shows that two out of three people with SCI are overweight. Excess weight gained after SCI is difficult to lose, and it is hard to maintain weight over time and avoid putting on extra pounds.

Weight Management following SCI - SCI InfoSheet #8
Emphasizes the importance of a good food plan for individuals following SCI. Discusses changes to the body after SCI that influence food selection; weight control; and nutrients

5. Recovery programs-additional SCI rehab information

5.1. Beyond Therapy-Atlanta, GA

The Beyond Therapy program at Shepherd Center in Atlanta. GA is a rigorous, activity-based therapy program designed to help people with a variety of neurological disorders, including spinal cord injury, improve their lifelong health, minimize secondary complications and get the most out of any new neural links to their muscles.

5.2. C.O.R.E.-Northridge, CA

C.O.R.E. Centers – SCI Networking Group
Center of Restorative Exercise (C.O.R.E.)
9667 Reseda Blvd. Northridge, CA 91324
(818) 718-2673

5.3. Journey Forward-Canton, MA

Journey Forward is a not-for-profit recovery-based exercise therapy program for individuals with spinal cord injury or disease in Massachusetts.

5.4. Neurorecovery Network-7 locations

Neurorecovery Network

Locomotor treadmill training You Tube video

 

Participating sites as of August 2013:

Craig Hospital, Englewood, CO

Frazier Rehab Institute, Louisville, KY

Magee Rehabilitation Hospital, Philadelphia, PA

The Institute for Rehabilitation & Research, Houston, TX

Shepherd Center, Atlanta, GA

Kessler Institute For Rehabilitation, West Orange, NJ

Ohio State University Medical Center, Columbus, OH

5.5. NeuroXcel-N. Palm Beach, FL

NeuroXcel    New Spinal Cord Injury treatments and Stroke recovery training offers hope with Neuroxcel's® C.A.S.T® program in South Florida

5.6. Next Step Fitness-Lawndale, CA

Next Step Fitness of Lawndale, CA is a nonprofit that provides people living with paralysis the opportunity for health and recovery through affordable and progressive community fitness and wellness facilities.

4447 Redondo Beach Blvd. Lawndale, CA 90260 (310) 546-5666

Christel Mitrovich (Director) ext. 11 christelm@nextstepfitness.org

5.7. PEAK Center at Craig Hospital-Englewood, CO

 PEAK Center

The PEAK Center at Craig Hospital is an adaptive health and wellness center serving individuals with neurologic disabilities in order to optimize their recovery and to create a lifelong plan for their health and wellness. 

5.8. Precision Rehabilitation-Long Beach, CA

Precision Rehabilitationis a physical therapy clinic specializing in neurological and orthopedic rehabilitation also providing speech pathology and acupuncture treatments.


3294 East Spring Street Long Beach, CA 90806 (562) 988-3570 d Wednesday of every month

Christy Malonzo

5.9. Project Walk-5 in US, 6 Internationally

Project Walk® exists to provide an improved quality of life for people with spinal cord injuries through intense exercise-based recovery programs, education, support and encouragement. Provider Centers in several US states as well as internationally.....

5.10. Step It Up Recovery Center-Orlando, FL

Step It Up Recovery Center exists to provide those living with a spinal cord injury the opportunity to achieve their greatest recovery potential and an overall increased quality of life. We will achieve this with an innovative, specialized exercise-based recovery program, dedicated staff, in an environment filled with support, hope and motivation

5.11. The Recovery Project-Two Locations in MI

The Recovery Project Livonia, MI

We, along with the rest of the world, hope for a cure for paralysis in our lifetime. Regardless of whether the cure comes in 5, 10 or 50 years, we believe that individuals with spinal cord and other neurological injuries should pursue increased physical functionality and fitness. While researchers seek the remedy, our mission is to improve the lives and functionality of individuals with these injuries by providing an environment in which to rehabilitate, recover and stay fit.

The Parkhill Foundation Bloomfield Hills, MI

The Parkhill Foundation may be able to provide financial assistance for therapy participants without health insurance coverage nor other means to access therapy programs of The Recovery Project.  

5.12. Walk The Line-to SCI Resovery-Southfield, MI

Walk The Line-to SCI Resovery Center in Southfield, MI

"Walk The Line" combines the expertise of physician directed training programs with experienced, knowledgeable certified trainers to help each client reach their goals for RECOVERY.

6. Ventilator Resources

6.1. Avery Breathing Pacemakers

Avery Breathing Pacemakers work by stimulating the diaphragm via pulses sent through the phrenic nerve.  They free users from the dangers and constraints associated with mechanical ventilation, all while meeting the highest standards of safety and reliability.  Furthermore, the Avery pacer is the only system of its kind with full premarket approval by the US FDA for adult and pediatric use.

For more information please see attached PDF.

 

6.2. NeuRx diaphram pacing (DPS)

NeuRx Diaphragm Pacing System (click here for product information; includes listing of established US centers offering DPS)
Unlike a mechanical ventilator, the NeuRx DPSTM provides a gentle, rhythmic, electrical stimulation to your diaphragm causing it to contract. A simple, minimally invasive outpatient procedure is used to implant the device's four electrodes. NeuRx DPSTM has enabled SCI patients to regain their sense of smell and taste, easily eat and speak and expand their mobility and transportation options. (Contact resource center staff for more information on how this differs from prior technologies).

Patient testimonials in print and video

Patient brochure is attached.

6.3. International Vent Users Network

International Vent Users Network
Links ventilator users with each other and with health care professionals interested in mechanical ventilation and home care.Provides several valuable resources including:

 

Information about Ventilator-Assisted Living
IVUN's 16-page brochure is an introduction to mechanical/assisted ventilation: What is it? Who uses it? What types of ventilators? What types of interfaces? and more.

Home Ventilator Guide
This comprehensive INVU resource displays technical information about the world's home ventilators in charts that are easy to read and makes comparing home ventilators more convenient. It features bi-level positive airway pressure ventilators, volume-cycled ventilators, pressure support ventilators, and combination or multi-mode ventilators.

Resource Directory for Ventilator-Assisted Living
INVU directory for linking to experts in mechanical ventilation.

Ventilator Assisted Living  is bi-monthly newsletter (sent electronically).  It links ventilator users, their families and peers with each other and with health professionals committed to home mechanical ventilation. Articles include such topics as family adjustments, equipment and techniques, medical issues, travel and ethical issues.


6.4. Internet resources

Vent World
Created by Amethyst Research LLC information about products, news, events, and training, from suppliers, professional societies, news organizations, and community members.

Vent Users' Support Page
INVU support page has many links for vent-related companies, related topics, articles, online support, etc. can also join vent users' mailing list and subscribe to New Horizons (newsletter for vent users).

Jeff Galli's Website
Jeff Galli's personal website has photos, descriptions and links for nearly every gadget he has used as a C1-C2 quad, including ventilator, phrenic nerve pacemaker, computer and environmental control unit.

6.5. Vent weaning

Craig Hospital Ventilator-Dependent and Weaning Programs
Craig Hospital has one of the most comprehensive programs in the country for individuals who are ventilator-dependent and their families. The program is for individuals on ventilators who plan to return home after rehabilitation. The goals of the program include medical stabilization, weaning from the ventilator when possible, and training the patient and family in home-care techniques and health management. For more information about Craig's ventilator program, please contact Lonnie Martinez at 303-789-8479 or at lmartinez@craighospital.org .