On June 17, 2000 Dana Guest’s life was forever changed when she was involved in a car accident and sustained a traumatic spinal cord injury. The then 17-year-old was rendered a quadriplegic and the challenges of life after a catastrophic injury became her reality.

Soon after the injury, Guest and her family realized how difficult it was to have all of their questions answered. Medical providers didn’t want to give false hope, case workers were overloaded and government resources were scarce.

“Sadly, we aren’t the only ones who have been through this. Throughout this eleven year journey, I have met many families who face the same issues,” said Guest.

So many, in fact, her mother suggested that someone should create a handbook for those who have survived a catastrophic injury.  This simple suggestion stayed with Guest as she went on to graduate college, build an accessible home and give birth to a daughter. Eventually realizing there was a need still not being fulfilled, Guest formed what is now known as the Injury Cooperative in 2010.

Located in Central Florida, the Injury Cooperative is dedicated to providing education, support and hope to injury survivors and their families. The Injury Co-Op’s website is a rich source of relevant information about traumatic spinal cord injuries, brain injuries, amputations, and major burns. It is regularly updated with blogs, educational videos, links to useful resources and the latest news. The website also has helpful information concerning government assistance programs, private foundation aid and legal options.

Along with this new web resource, the Injury Cooperative operates the Co-Op Cares Program. This program distributes Care Bags families of those who have sustained a traumatic injury in Central Florida. All of the Care Bags have a warm fleece blanket for those cold hospital waiting rooms, a Recovery Handbook to help families organize their lives to better facilitate the recovery process and other small, useful items. The Co-Op Cares program can also help families in Central Florida locate resources, set up a social support network, and provide mentorship.

“I created the Injury Co-op with a vision of keeping fellow survivors and their families from going through what I had to experience,” said Guest. “Most importantly, I want them to know they aren’t alone and someone is willing to truly listen and help.” And, Guest works relentlessly to make her vision a reality. For more information about the Injury Cooperative, please visit www.theinjuryco-op.com or call 855-INJ-COOP.

Dana Brown Ritter and Mike Ritter

Two years ago, I married the man with the prettiest blue eyes I could find. He’s smart. He’s funny. He’s sweet. He’s handsome. And he gets me.

He does all of this, from a wheelchair. When Michael was 17 years old he broke his neck in a gymnastics accident. He’s a C5/6 quadriplegic, paralyzed from the chest down, with limited use of his arms and hands.

I am not sure just how much my perspective as a wife of a man with a spinal cord injury varies from the wife of any other man, because this is all I have ever known, but here goes.

There is certainly a lot to get used to. Not everyone will agree with this assessment, but to me, as we were settling into that first year of marriage, it sort of felt like we had a third person along for the ride.

That third person being my husband’s disability: the special needs it has, the equipment it requires, and the patience and effort required on my part to accommodate it. The catch was, unlike an actual person, the disability doesn’t communicate. You can’t reason with it. You can’t compromise. You can’t take turns. You just have to move out of the way when it is going a certain way. When it slows you down, you just have to slow down. When it goes haywire and changes your plans because of a bodily or equipment malfunction, you have to go with its flow. It doesn’t care if you are sick, or tired, or need a break. It must be handled first thing in the morning, last thing at night, and whenever it wants. It often cannot be “prioritized” or manipulated.

This was a major adjustment, especially for a control freak like myself. Because with other situations in life, you can plan ahead, you can work harder, think faster, be smarter, and get your way.

Being the wife of someone with a spinal cord injury can provide you with great perspective. Nothing like waking up every day next to someone who can’t move to make you realize whatever you are dreading or are afraid of that particular day, doesn’t really matter. But, if you’re not careful, that “perspective” can make you feel like you don’t matter.

I learned, not so quickly, but eventually, to not take the third person “personally.” It took time. And lots of love from a husband who was not willing to let his disability swallow his wife.

It is so cliché’, but communication really is key. Communication is key in any marriage, but in a marriage where a lot of the physical activity falls on one partner, because of a disability, communication is the glue that holds you together.

Just as it is important for the able bodied, ”caregiving” spouse to make sure all of the needs of the disabled partner are met, it is important for the disabled spouse to make sure the caregiver is taken care of.

There is so much support you can give, even if you have a spinal cord injury. My husband has found dozens of creative solutions to contribute. His legs may not work, but his ears do. He is an excellent listener.

There have been times when I have felt third in line in this marriage, behind him and his disability. Because he was able to see me, and hear my perspective, he was able to change it. To make me realize that we are a TEAM. There’s nothing either of us did to deserve this. It’s not anyone’s fault. But neither one of us is in this alone. We are on the same team.

Being part of a team is empowering. When you are weak, the other is strong. Two heads are better than one. Another cliché, but all of that is true. And when you’re dealing with a hard-headed non-compromising wildcard of a third person, you need as much power on your team as you can get.

My husband and I write a candid blog about our life called “Love Like This Life.” We write about life, love, faith, work and disability. We put ourselves out there in the hope that we will connect with others and encourage them along the way. Come rock this out right along side us!

www.lovelikethislife.com

Snow, sleet, ice and cold slow everyone down, but people with spinal cord injuries know they have to be extra careful to avoid the pitfalls of winter. We asked our forum users to help us compile this list of 10 top SCI winter safety tips.

1. Layer. Wear multiple layers of clothing under water-resistant outerwear. This includes a scarf around your neck, a winter hat, lined boots and two pairs of socks.
2.  Gloves. Wheelchair users’ hands often become desensitized overtime. Keep your hands warm, dry and salt-free with waterproof gloves, and remember to pack an extra pair.
3. Protect your skin. It’s important to be diligent about checking areas of exposed skin and knowing the signs of frost bite. Frostbitten skin is cold to the touch, may feel numb and appear grayish-yellow. If you think you have it, move to a warm area and seek medical attention.
4. Stay Hydrated. The human body uses more water in winter than in the summer because it takes more energy to keep warm. Avoid soda, coffee and non-herbal tea because caffeine is dehydrating. Drink water.
5. Try to do range-of-motion exercises daily. Colder temperatures cause muscles to tighten up, and stretching not only helps reduce spasms, but also gets blood flowing to keep lower limbs warm.
6. Stay warm inside. If you use a portable electric heater, make sure to keep an eye on it and to keep your distance from it.
7. Avoid snow. Both manual and power wheelchairs tend to get stuck in snow, so it’s important to stay in shoveled areas as much as possible, especially if you are alone.
8. Invest in Snow Tires. If you can’t avoid the snow, get knobby wheelchair tires. Beach balloon tires are also great for getting though snow. You’ll probably have to change your tires when you get inside.
9. Wrap your Tires. If you don’t want to bother with snow tires, you can wrap your regular tires with sturdy nylon or plastic wires that will help wheels grab as you go through snow. You may need to remove the wires indoors.
10. You can never be too safe. Pay attention to the weather: never leave home without a cell phone and keep an emergency kit in your backpack that includes a blanket, water and cell phone charger.

To share your own tips, please visit the FacingDisability Spinal Cord Injury Forums.

The first three years after a spinal cord injury are hardest on a marriage. That’s one of the results of a recent study 15-year-study by the Department of Physical Medicine and Rehabilitation at the University of Michigan. They found that couples married at the time of an SCI were 1.3—2.5 percent more likely to get divorced than the general population during the initial three years post-injury. After that time, the divorce rate slowly lowered to the national average of about 40%. The research team interviewed 2,327 individuals with SCI who were married at the time of their injury over a period of 15 years.

Participants of the 15-year-study were made up of men and women with spinal cord injuries, married at the time of their injury, and at least 18 years old. They were interviewed one year post-injury, and then at five year intervals, for 15 years.  Contrary to expectations, the level of injury, function, mobility and independence did not prove to be predictors of divorce. Instead, age at injury, being Caucasian vs. African-America, having a college degree vs. high school education, having some form of employment vs. being unemployed and being in good health and involved in social life were the significant factors in preventing or delaying divorce after an SCI.

Meaningful social opportunities are especially important in predicting marriage longevity post-spinal cord injury. The researchers stated that the more time an individual with an SCI spends out of the home with friends and family, the more outlets and resources that person has separate from their non-injured spouse, the less likely they are to get divorced.  The researchers suggest that outside social activities greatly lessen the burdens that come with caregiving, which in turn, promote positive communication between married couples. Social support can also benefit individuals physically and psychologically, as it lowers the emotional distress and isolation that can follow a spinal cord injury.

Here’s what Athena, who was married to her husband when he became quadriplegic at age 31 in 1996, had to say about their relationship.

Follow this link to hear more from FacingDisabiltiy Spouses.

How has a spinal cord injury affected your marriage? Leave a commitment below or connect on the FacingDisability Forums.

We are excited to share a guest blog post, written by a member of the Well Spouse™ Association spinal cord injury community.  Like FacingDisability.com, the Well Spouse Association is a peer support network created to connect the spouses and partners of chronically ill or disabled individuals.  In this article, the author shares her story on the strength she found from connecting with other spouses facing life after a spinal cord injury, and how they helped her find her “new normal.”

I have five biological sisters whom I dearly love, but when I need empathy and understanding about my challenges as the wife of a C-4 complete quadriplegic, they don’t always “get it.” That’s when I turn to my “other sisters” – women I have met through the Well Spouse Association who are also married to quadriplegics with a traumatic Spinal Cord Injury.

We SCI Sisters are spread from California to New Jersey, from Minnesota to Georgia.  Some of us have been caregivers for thirty-plus years, some for only three. Our husbands were injured in falls, diving and automobile accidents, playing football, and from gunshot wounds.  Some of us had young children or were pregnant on the day our lives changed forever.  Some of us later chose to adopt, or use the assistance of fertility specialists to have children post-injury.

When one of us shares her harrowing account of the first weeks in the intensive care unit, the rest of us remember our own versions. When one of us reminisces about the unforgettable compassion of the rehab professionals who guided her and her spouse to their new normal, the rest of us recall the special gestures of kindness and confidence with which we were blessed.

We compare wheelchair and seat cushion features, and discuss symptoms of autonomic dysreflexia and techniques to prevent bladder infections.  We check up on one another’s kids and debate how much teenagers should be involved in their fathers’ personal care.  We recommend accessible vacation venues to one another.  We share what’s worked for us in terms of finding and keeping reliable home health aides. We validate one another’s feelings, encourage one another to take time for ourselves, and help one another cope in countless ways.  We have our own war stories – occurrences which were stressful at the time, but have now become amusing anecdotes—such as when my two-year-old locked himself in the bedroom with his father and started playing with the controls on the adjustable bed as my husband lay there, or when the clamp on my husband’s leg bag came undone and he flooded the floor under the table at a Cub Scout banquet.

Some of us have never met face to face, and probably never will.  Others of us have shared visits with each other’s families, so useful in helping young children realize that there are other families out there that are just like their own.

When one of us is having an especially difficult time dealing with a husband battling pneumonia or a non-healing pressure sore, we can get frustrated by the miles that separate us.  We don’t often get to actually deliver a comforting hug or keep each other company in a hospital room.  But we are just an email or a phone call away from one another, and just knowing that such support is always there is immensely comforting.  Because of Well Spouse and our SCI sisterhood, we are not alone.

To learn more about the Well Spouse™ Association, go to www.wellspouse.org to find information on the many peer support services they offer.

Adaptive wheelchair dancing hit the American scene in 1972, and has been an important social and creative outlet for people with all levels of ability ever since.  Unlike many adaptive sports, wheelchair dancing allows people of all abilities and ages to participate in a recreational activity together.

Wheelchair dance originated in Sweden in 1968, as a form of recreational therapy.   It soon became recognized as “Wheelchair Dance Sport,” holding its first international competition in Japan in 1998.  The sport is practiced in 40 countries, the U.S. being home to over 20 well-respected wheelchair dance companies.

The Axis Dance Company, of Oakland, CA, was founded in 1987, and regularly tours the country.  New York Times dance critic, Bruce Weber, recently reviewed an Axis Dance performance.

“Like much that is surprising in art…Axis’s work instructs the viewer in how to appreciate it, and the lesson is delivered with cogent force: Sympathy is irrelevant. Forget what isn’t here, and pay attention to what is. Recognize the chairs for what they are and not as substitutes for what they are not.”

To see what he’s talking about, here’s a look at a recent performance.

Ginger Lane was a dancer and choreographer before she became quadriplegic at age 42.  She decided to try wheelchair dance after her SCI, and has become an active member of the movement.  She doesn’t pretend that dancing in a wheelchair is the same as it was before she was injured, but she still enjoys the creative and artistic outlet it gives her. To hear more from Ginger on wheelchair dance, watch her answer to: “What role has adaptive sports played in your life?”

To learn more or to find a dance company in your area, visit Wheelchair DanceSport USA.

Dennis Liotta

By Dennis Liotta, Esq, Partner at Edgar Snyder & Associates

If you or someone you love sustains a spinal cord injury, it changes your life forever. Your independence may be compromised, and everyday activities you once took for granted may become a challenge.

Spinal cord injuries require extensive medical care – lengthy hospital stays, long-term rehabilitation, devices to adapt to living at home, etc. As if dealing with your injury isn’t enough, the piles of medical bills and debt can seem too much to bear.

No two spinal cord injuries are the same, but insurance companies see you as a claim number – not a person with a family and a unique situation. With the economy unpredictable and still in trouble, many people living with spinal cord injuries and their families are struggling financially.

If your spinal cord injury prevents you from working, you may want to pursue Social Security disability benefits (SSD). However, the application process is a complicated one. Learning how to navigate the system can mean the difference between being accepted or denied for SSD benefits.

Determining Eligibility

You may be eligible for SSD benefits if you can answer “yes” to the following questions:

• Do you have a spinal cord injury or disease that prevents you from working? The diagnosis does not guarantee you benefits; you are eligible for benefits only if your disability is severe enough to prevent you from holding a job.

• Does your disability prohibit you from working in any capacity – not just the job you held previously?

• Has your disability continued– or is it expected to continue– for at least one year? Or, is the disability life-threatening?

• Do you have an earnings record that shows you have paid into the Social Security system within the past five years? If you have not paid enough into the system, or have not paid recently enough, you may also be eligible for Social Security Income (SSI) benefits.

Unfortunately, the government denies many claims, even for people who are entitled to receive benefits. If your claim is denied, you may need to appeal the decision.

Applying for SSD Benefits

To get started, contact the Social Security Administration at 1-800-722-1213, visit www.ssa.gov to file online, or make an appointment at a local Social Security District Office. Your local Social Security office can help you determine if you’re eligible for SSD.

The claims process can take 120 days or more. Those approved receive SSD benefits after their sixth full month of disability.

If approved, your SSD payments are retroactive from the date you were evaluated as disabled. Money you receive is based on your average top earnings over the past 15 years of your work history. Note, however, that your SSD medical benefits do not kick in until the 29th month from the date you were considered disabled.

Denied Claims and Terminated Benefits

Denied benefits? Don’t give up – but act quickly. You have only 60 days to appeal. You can reapply after that time period, but only by starting a new application.

If you appeal the decision, you’ll be granted a hearing, which will take place within 12-18 months. You can represent yourself at an appeal hearing, but you may want to consider contacting an experienced attorney if you get overwhelmed. Typically it takes a judge several months after a hearing to issue a decision. If the judge does not issue a favorable verdict, you can move on to the Appeals Council.

The Appeals Council can choose to:

• Review your claim and render a decision

• Not review your claim

• Give your claim back to the Administrative Law Judge for reconsideration

If that doesn’t work, you can move on to the last and final step – you can pursue a case in Federal Court. You will definitely need an attorney at the federal level.

Navigating the System

Applying for SSD benefits can be a long and difficult road for people living with spinal cord injuries and their families. Learning about the SSD system and knowing what to do may make all the difference.

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Attorney Dennis Liotta, a partner at the law firm of Edgar Snyder & Associates, has over 20 years of experience helping people with physical and mental disabilities get Social Security disability benefits. For a comprehensive overview of SSD, with answers to commonly asked questions, download a free guide at: http://www.edgarsnyder.com/ssd-guide .

A spinal cord injury (SCI) is damage or trauma to the spinal cord that causes loss of movement and feeling below the site of the injury.

 The Spinal Cord Pathway

The spinal cord is about 18-inches long.  It extends from the base of the brain along the middle of the back, down to about the waist. The nerves within the spinal cord constitute a pathway that carries messages back and forth from the brain to all parts of the body.   This vital pathway is protected by a column of bony rings called vertebrae that surround the spinal cord.  When an injury causes the vertebrae to break and press up against the spinal cord, the nerves within can be damaged, and the pathway broken or interrupted.

The break or interruption means that the messages that flow between the brain and the spinal cord can no longer get through.  The paralysis that results depends on the location and extent of the break.

It’s a common misconception that the spinal cord is severed in people with a spinal cord injury.  In fact, in most people with SCI, the spinal cord is intact; it is the cellular damage to the nerves that causes paralysis.  This damage can occur even without damage to the vertebrae.

Spinal Cord Injury Effects

Paraplegia means that paralysis affects all or part of the trunk, legs or pelvic organs. Quadriplegia (or Tetraplegia) means that arms, trunk, legs and pelvic organs are all affected.

Loss of movement and feeling depends on what part of the spine is damaged.  (See interactive spinal cord injury map)

Cervical Vertebrae

Cervical injuries above the C-4 level may require a ventilator for the person to breathe.  C-5 injuries often result in shoulder and biceps control, but no control at the wrist or hand.  C-6 injuries generally yield wrist control, but no hand function.  Individuals with C-7 and T-1 injuries can straighten their arms but still may have problems with the hands.

Thoracic Vertebrae

The first thoracic vertebrae, T-1, is the vertebrae where the top rib attaches.  Injuries in the thoracic region usually affect the chest and legs and result in paraplegia.  For T-1 to T-8 injuries, there is most often control of the hands, but lack of abdominal muscle control.  Lower T-injuries (T-9-T-12) allow good truck control and good abdominal muscle control.

Lumbar Vertebrae

Injuries to the five Lumbar vertebrae (L-1-L-5) and similarly to five Sacral Vertebrae (S-1-S-5) generally result in some loss of functioning in the hips and legs.  Lumbar and Sacral injuries yield decreasing control of the hip flexors and legs.

Sacrum

The Sacral Vertebrae run from the pelvis to the end of the spinal column.  Injuries to the five Lumbar vertebrae (L1-L5) and similarly to the five Sacral Vertebrae (S-1 through S-5) generally result in some loss of functioning in the hips and legs.  Lumbar and Sacral injuries yield decreasing control of the hip flexors and legs.

Complete and Incomplete Spinal Cord Injuries

A spinal cord injury is called “complete” if all feeling and ability to control movement is lost below the level of the injury, which suggests that no messages are getting through the spinal cord.  An injury is called “ incomplete” if there is some motor control and feeling below the injury, which indicates some messages are still getting through.  With advances in the acute treatment of spinal cord injuries, incomplete injuries are becoming more common.

Causes of Spinal Cord Injuries

The most common causes of spinal cord injuries in the U.S. are auto and motorcycle accidents.  They account for more than 40 per cent of the estimated 12,000 new cases each year.   About 15 per cent are caused by acts of violence involving gunshot and knife wounds.  Athletic activities cause about 8 per cent.  Use of alcohol is a factor in about 1 out of every  4 spinal cord injuries.  More than 80 percent of all spinal cord injuries occur to young males, mostly between the ages of 16 and 30.

Treatment Outlook

At this time, there is no way to reverse damage to the spinal cord.  But researchers are continually working on new treatments, including stem-cell therapies, innovative electrical stimulation, bionic exoskeletons and  new medications.  They are aimed at promoting nerve cell regenerations or improving the function of the nerves that remain.

Spinal cord injury treatment and rehabilitation focuses on empowering people with spinal cord injuries to live active, productive lives.

Whether or not they say it out loud: “Will I still be able to have children?” is a common worry for men with new spinal cord injuries.

Recently, the dream of having a family was fulfilled for Darren, who was injured in 1993 and married in 1996, when his wife gave birth to a beautiful pair of twins, a boy and a girl.

Darren and his wife decided to give each child a middle name from Homer’s epic “The Odyssey.” Darren explains that they did that to remind their children that “it’s important to appreciate what you have instead of lamenting what you don’t, and to remember that life is a journey worth celebrating along the way.”

If you’re wondering: “How does a spinal cord injury affect male fertility?” Take a look at the detailed answer from Diane Rowles, an expert in sex and fertility at the Rehabilitation Institute of Chicago.

So what’s ahead for Darren as a father? Here are some voices of experience on our website from parents with spinal cord injuries and their spouses: “How has the injury affected your parenting?” Click here to hear more from Darren.

We’d love to hear about your own experiences with parenting—your issues, your problems, and how you solved them.  Please leave a reply below.