A recent article in the Miami Herald brought up some questions. If you are a disabled parent, do you receive the same respect and support as parents without a disability, and if not, how prevalent is the inequality?

The story was about a mother who suffered a back injury that created a significant amount of pain, preventing her from working and leading her doctor to recommend narcotic pain pills. Because of her dependence on the medication, the court ordered her to complete a variety of parenting tasks which she failed due to a lack of financial resources. Her child was then taken away and given to the grandparents.

This situation had a few variables involved that have no relation to a disability, but it inspired us to do some research. It turns out that there are quite a few Internet and print resources that are aimed specifically at the disabled parent. Some are for women only and others offer support to both sexes. After reading just a handful of sources, it became apparent that there are indeed issues faced by disabled parents that need attention.

“Many doctors may have difficulty dealing with women who are both pregnant and disabled. We blur their categories,” says says the DisAbled Woman’s Network (DAWN), “Physicians lack models for dealing with us. Many have a hard time saying, “I don’t know how to deal with this, but I’ll try to find out as much as I can and help you as best I can.” Rather than deal with us honestly, they may urge us to abort, or be unsympathetic.”

Added to negative physician attitudes about disabled parenting are complications that arise from pregnancy that are specific to each disability. Spinal cord injuries (SCI) are already prone to cause urinary tract infections (UTI) and with the addition of a pregnancy and the strain it places on the bladder, the potential significantly increases.

DAWN also points out that there are also issues with medical equipment not being safe or properly designed for gynecology exams on those who are wheelchair dependent or who have little or no use of their limbs. In a poll that resulted in 245 respondents, DAWN found that the disabled mothers who had children experienced the following problems: 25% had housing issues, 25% had difficulty transporting their children, 33% had trouble with child care, 32% had a problem with household tasks and 33% found that social/medical workers didn’t understand their situation.

The Family-Friendly-Fun Website has something similar to say, “For too long, people with disabilities had been told that having families of our own was not an option. The truth is, though, that we have always been parents, and as our society evolves, more and more of us will have access to that opportunity.” They go on to add that “Being disabled parents in the twenty-first century is slowly starting to improve but unfortunately disabled parents are still sometimes met with discriminatory attitudes both by professional organizations, and by the family and friends of the disabled parents themselves.”

Adaptive equipment is out there, but it’s rare and considering how individual-specific each situation is, coming up with a “one size fits all” option for those with disabilities is out of the question. Certain things need to be taken into account that the typical stores seldom provide - accessible changing stations and bathing equipment, cribs and beds, harnesses to allow quadriplegics to hold their child and so on.

Luckily there are organizations that are working to not only support parents with disabilities, but also to draw attention the the unique challenges they face and how our communities can better assist them. Here are some resources to get you started:

Parents with Disabilities Online (Includes some adaptive equipment.)

Disability, Pregnancy & Parenthood (Has an online or print journal with stories of disabled parents and how they are coping.)

Disability in Pregnancy and Childbirth (A book that is highly recommended on a variety of Websites.)

Why are respiratory infections so common in spinal cord injury (SCI) patients? We’ve mentioned the prevalence before, but want to share some data we recently found.

According to the University of Washington’s School of Medicine, respiratory infections such as pneumonia, are the leading cause of death in SCI patients. Compare this to heart disease, cancer and stroke which are the main causes of death in the general population.

SCI affect the respiratory system the muscles that are needed to pull air in and push it out of the lungs are often affected by a spine injury. Without the intercostal muscles working properly, the patient is unable to effectively cough up mucus which leads to an excess in the lungs that makes it harder to breath.

There are ways to make sure the lungs are kept clear such as with the use of suction or “quad coughing”, a process that involves a caregiver pushing down on the chest to force the air and mucus out. In addition, receiving a pneumonia vaccine called Penumovax prevents some forms. As SCI patients have such a high risk for these types of infections, it’s best to be prepared with as much prevention knowledge as is available!

Animal-assisted therapy (AAT) has been around for some time now, but we are only recently (in the last 10 years or so) seeing it branch out to document illnesses such as anxiety that are common after a traumatic brain injury (TBI) or spinal cord injury (SCI). This therapy involves the use of a trained animal to assist and comfort the patient. The most common animals used are dogs, but there have been cases of monkeys, cats, horses, fish, birds, dolphins and even cows.

Animal therapy trials have been done on patients with anxiety, paralysis, dementia, depression, hospice needs, in correction facilities and more. For those with a SCI that limits their mobility, animal interaction has been found to alleviate feelings of loneliness and isolation, both of which are often noted results if a SCI. According to a 2000 study in the Journal of Psychosomatic Research neurochemicals associated with a decrease in blood pressure increased after positive interactions between humans and dogs, another benefit in a situation that can cause a great deal of stress for the recovering patient. In addition, organizations such as the Delta Society have done their own research on the benefits of human/animal interaction as well as compiled a list of articles that substantiate this idea.

Another pet-positive article describes the link between coping with change and transition and having a pet. Learning to live with a disability such as caused by a TBI or SCI is a traumatic and often overwhelming process. The authors found that within six months of receiving a service dog participants demonstrated an increase in self-esteem, psychological well-being, community integration and also a 70 percent decrease in home aide needs. That’s a pretty significant finding.

Offering a counter-view, the Handbook on Animal-Assisted Therapy quotes a handful of studies (pg. 41) that speculate on other reasons for the benefits, such as increased exercise or socializing through walking a dog. Aubrey H. Fine, the author, goes on to point out how few of the studies performed can be concretely validated. To create a proper study, those receiving AAT would need to be taken off of any medication while a placebo group would have to be created. How can you manufacture a placebo for a pet’s affection? Fine makes a good point, but as many will attest to with or without studies offering proof, animals have added value to numerous lives. If you have pet therapy experiences to share, we would enjoy hearing about them!

Erectile problems after a spinal cord injury (SCI) has been an issue for countless patients. To better understand this problem, there have been numerous studies addressing the problem from a variety of angles such as specific dysfunctions and the neurophysiology of erections.

If erectile dysfunction is a problem that you or someone you know is experiencing, then we hope the following clinical research will be of help.

The Wikipedia defines a penile erection as an “increased penile blood flow resulting from the relaxation of penile arteries and the smooth muscle of the corpus cavernosum. This response is mediated by the release of nitric oxide (NO) from nerve terminals and endothelial cells, which stimulates the synthesis of cGMP in smooth muscle cells. Cyclic GMP relaxes smooth muscle and increases blood flow to the corpus cavernosum.” The simplified version is that blood flows to the penis causing a rigid state also known as an “erection”.

The Journal of the American Paraplegia Society states that “the majority of spinal cord injured (SCI) men with upper motor neuron lesions have reflex erections. However, these erections are often not adequately sustained making it difficult if not impossible to have intercourse.” They go on to say that the majority of those with lower neuron lesions are unable to have erections at all.

There are a few different approaches to this problem. Penile implants are one possibility, and for some, work very well. The drawback to the implant is that it increases the risk for infection and there is the chance that it will erode through the skin. You can choose between two types - inflatable and semirigid and the procedure is done in just a couple of hours under either general or spinal anesthetic. Inflatable implants operated with a pump have the benefit of allowing the penis to fully relax while the semirigid, as its name implies, keeps the penis continuously in a partially “aroused” state and is the lesser used version. Implants are a good option if medication fails to work, as is often the case with those who have a SCI.

Vacuum devices create an erection by drawing blood into the penis. This cylindrical device is placed over the penis to pull blood into the tissue and a ring is put around the base to hold the blood in place. Also called a penis pump, this tool has been used successfully for many.

Intracavernous injections of papaverine and phentolamine are other options that can lead to prolonged erections. Papaverine is an opiate and has some side effects such as constipation, somnolence and vertigo. Phentolamine causes blood vessels to expand which increases blood flow to the needed area and has few side effects. Both of these drugs are administered through injection and the patient can be taught how to do it himself assuming he is physically able.

Medications such as sildenafil (Viagra), vardenafil (Levitra) and Tadalafil (Cialis) are orally administered drugs that have shown positive results in a variety of studies. The recommended dosage is once a day, though Cialis is known for having a longer lasting effect - up to 36 hours. All of these pills have the potential for some uncomfortable side effects. Back pain, muscle aches, headache, indigestion and a runny nose are the primary ones, though some patients have reported experiencing hearing loss.

If your main concern is being able to father a child, Mitch Tepper at Sexualhealth.com lists two methods for obtaining sperm if manual ejaculation fails - electroejaculation stimulation (EES) and penile vibratory stimulation (PVS). EES requires anesthesia as an electric probe is inserted into the rectum. This procedure stimulates the nerves that control ejaculation. PVS is a less invasive process where you apply a vibrator to the penis and it has the added benefits of being a home procedure and pleasurable. It is common to first try PVS and if that fails to produce results, then try EES.

This topic is seldom an easy one to discuss and many are hesitant to do so. Keep in mind that this problem is not only widespread among those with SCIs, but among the general male population. You are not alone and with so many options to try, there is a good chance of finding one that works well for you!

A.J. Gross, D.H. Sauerwein, J. Kutzenberger, R.-H. Ringert. Penile prostheses in paraplegic men. British Journal of Urology

Male Urology and Sexuality After Spinal Cord Injury (SCI) Through a Narrative Book. Lombardi G.M.D., Macchiarella A. M.D, Celso M. M.D, Del Popolo G. M.D. Department of Neuro-urology Spinal Unit of Florence, Italy

Many find themselves caught up in a Monday afternoon daydream where they get to wake late and spend their afternoons with nothing better to do than watch their favorite TV program…and then the phone rings or the boss looks their way and they snap back into the reality of work.

What if this wasn’t your daydream? What if you were stuck at home, not because of some windfall of luck, but because employer after employer refused to hire you? For many disabled people, this is an all-too-real scenario.

The Americans with Disabilities Act (ADA) of 1990 found that society has had a tendency to isolate and discriminate against those with disabilities by refusing them work, housing, education, health care and other vital services. Add to this physical barriers such as inaccessible workstations and unmodified entryways and the need for the ADA becomes apparent.

To prevent these discriminatory acts from continuing to happen, the ADA has set up certain provisions that protect qualified people against discrimination related to hiring, job advancement, discharge, compensation, training and other such employment rights and opportunities. This includes providing “reasonable” (meaning that the size of the company and its financial resources are taken into consideration) modifications to the workplace such as ramps, workstations and the location of necessary work tools.

Companies who fail to meet the ADA standards can be required to pay a fine, go to court or both. This process begins with a person who has experienced discrimination filing a claim to any United States Equal Employment Opportunity Commission (EEOC) office within 180 days of the incident. If a reasonable settlement isn’t reached, then it is possible to file a lawsuit with the Federal court after receiving a “right-to-sue” letter from the EEOC.

While the ADA enforcement has helped to prevent and curtail workplace discrimination, there are still countless cases of disabled persons being turned down for work who believe it is due to their particular disability.

If you or anyone you know has questions regarding their own situation, here are some good resources:

EEOC field office locater: (800) 669-4000 (voice) & (800) 800-3302 (TTY)

ADA Accessibility Guidlines

One of the most common complications post SCI:

Kidney failure, according to SpinalInjury.net, used to be the leading cause of death for individuals with a spinal cord injury (SCI). Today with the improved bladder management methods, there are fewer and less severe kidney complications to be dealt with. More common these days are difficulties arising from urinary tract related issues.

The loss of normal bladder function after a SCI places a patient at an increased risk for contracting a urinary tract infection (UTI), regardless of the type of bladder management used. A UTI can occur in the bladder, the kidney, or other parts of the urinary tract. Urinary tract infection remains the most common secondary medical complication following a SCI and it is also one of the costliest.

Sci-Info-Pages, lists the common UTI symptoms as:
# Fever
# Chills
# Leakage
# Increased spasms of legs, abdomen, or bladder
# Feeling the need to catheterize more often (frequency) ( Intermittent)
# Feeling the need to catheterize immediately (urgency) ( Intermittent)
# Burning of the urethra, penis, or pubic area
# Nausea
# Headache
# Mild low back pain or other aches
# Feeling “lousy” or tired

If you experience any of these, please be sure to talk with your doctor to avoid further complications.

This week’s interesting technological development is an electronic exoskeleton - something that seems better fitted to some action-packed futuristic movie.

ReWalk is the creation of engineer Amit Goffer, founder of Argo Medical Technologies in Israel, who was paralyzed in 1997. Unable to use his creation because of limited mobility in his arms, Goffer has used this machine to give others the ability to walk on their own again - or for the first time.

It consists of a set of crutches that help the user maintain their balance, motorized leg supports, body sensors and a back pack with a computerized control box and rechargeable batteries.

For more information, check out Goffer’s Website.

Last Friday night Houston Texas receiver Harry Williams sustained a spinal cord injury (SCI) during a game against the Dallas Cowboys leaving him temporarily paralyzed. Monday he underwent surgery to fuse two vertebrae in his spinal column, a procedure that will hopefully allow him to lead a normal life, but won’t put him back in the game.

Williams was only 26, an age that would have given him years more on the field had this accident not happened. An estimated 14 percent of SCIs are a direct result of a sports related injury. Considering that there is about ten thousand new SCIs a year, this is a fairly significant number.

Last year Kevin Everett with the Buffalo Bills football team was paralyzed during a game. He has since recovered his ability to move his arms and legs, but he will never play football again. His recovery from paralysis, along with Williams’, is a rare occurrence as most who experience paralysis stay paralyzed.

There are 31 pairs of nerves that spread out from the spinal cord into the arms, chest, legs and abdomen. The nerves that are in charge of upper body movement are in the upper portion of the spine, while the ones that control the legs are in the lower area. Not only are these nerves responsible for limb movement, they also control basic functions such as breathing and heart beat.

The National Center for Catastrophic Sport Injury Research has reported that in 2006 there were 16 indirect deaths and only one fatality in football, and the death was caused by a SCI. In 2007 there were eight cervical cord injuries with incomplete recoveries. Six of these were at the high school level. The majority of the SCIs occurred in games with only two happening during practice.

Considering that in 2007 there were 1,800,000 football players, these statistics aren’t painting too bleak of a picture. While each injury or fatality is a reason for concern, innovative safety gear has greatly decreased the chance of experiencing an unrecoverable injury. We have neurosurgeons such as Richard C. Schneider to thank for the decrease in permanent spine and head injuries. He helped to develop the football helmets our players currently use which have directly influenced this decrease as documented in the National Football Head and Neck Injury Register.

As researchers come up with better and more intuitive protective gear, we will continue to see these traumatic injuries decrease. In the meantime, those who have had their lives irrevocably changed from a brain or spinal cord injury deserve our continued support.

The importance of the vehicle seat’s role in automobile accidents shouldn’t be overlooked, yet it often is. If you run an Internet search, you will find numerous stories on collapsed seat backs, faulty restraint systems and inadequate load bearing ability - all manufacturer-related issues that have contributed to injury or death in automobile crashes.

One area of concern that is overlooked more than most is that of wheelchairs used in lieu of standard seats in vehicles. For those with disabilities, the act of transferring from a wheelchair to a car seat is often difficult and thus prohibitive. Instead, they often choose to purchase a van or other vehicle with the capacity to hold a wheelchair. Either the back seats are removed or the front passenger seat is in order to create a space for the wheelchair.

Vehicles can be modified to allow room for the wheelchair and the addition of special restraints to offer protection in an accident. While these restraints are tested for strength and comfort, they don’t give the wheelchair the same protective properties as originally equipped manufactured seats would.

Keeping in mind that a stock seat is still no guarantee that the person riding in or near it will be safe in an accident, the idea of a wheelchair providing the same degree of protection is faulty. They simply aren’t built to act as car seats. They haven’t been created to withstand the load placed on them and the occupant during a wreck nor to optimize the protective abilities of the restraints.

A common cause of injury during an accident is seat back failure - when the seat is unable to bear the increased load from the force of the impact added to the weight of the occupant, causing it to collapse. The two most common types are either a failure of the seat to maintain an upright position and the deformation of the actual structure. This usually happens after a rear impact that propels the vehicle forward the person backwards, creating strain on the back of the seat. There have been thousands of life-altering traumatic brain injury (TBI) or spinal cord injury (SCI) cases from these failures.

Properly manufactured seats should be able to bear this additional load as well as prevent the occupant from coming into contact with the vehicle’s interior, but too often they don’t measure up.

Now picture a wheelchair encountering those same circumstances. This chair is designed for comfort, ease of transportation and maneuverability - not impact resistance. The Subcommittee on Wheelchairs and Transportation (SOWHAT) has been pushing for better wheelchair standards, ones that will protect a passenger during motor vehicle transportation. They call for an emphasis on “design requirements, test procedures, and performance criteria” that will provide the necessary stability, restraint and strength.

SOWHAT’s earlier efforts in the 1990s to have ANSI, the American National Standards Institute, approve WC-19-Wheelchairs Used as Seats in Motor Vehicles has been approved, but it does not address every issue or concern posed, most notably it does not cover protection from rear impacts or rollovers.

To find out how you can better protect yourself or the wheelchair user in your life, check out the Ride Safe online brochure. They provide step by step instructions on how to best secure a wheelchair and its occupant while in a motor vehicle. They also list tips for selecting a wheelchair and tiedown equipment.

Q: What spinal cord injuries occur most in sports?

A: There are two types of spinal cord related injuries that occur most frequently in sports. The first is called a stinger or burner and the second is transient quadreplegia. While they can happen in almost any sport, they are most commonly found in contact activities such as wresting, rugby and football.

Stingers are a painful nerve injury created by compression in the neck or shoulder area that creates a sharp stinging or burning sensation in an arm. Transient quadriplegia typically results from hyperextension of the neck coupled with cervical spinal stenosis or disc protrusion.

The aptly named stingers affect close to 50 percent of those in contact sports, while the more debilitating transient quadriplegia occurs in roughly 1.3 athletes out of 10,000. Overall, spinal cord injuries are decreasing as better equipment is created and worn.