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Incontinence Support Blog

Renting a Home from a Chair

Posted by Caleb Bartlett

Aug 16, 2016 4:36:16 PM

My family and I recently went through a rather difficult, yet educational experience. For the first time since my injury I was jointly responsible for a home. By the this I mean my name was on the lease. Many of us in chairs often live with family, some us received a settlement and bought a home, but there are those of us making a go of it out there in world living in a place we do not own. This means Landlords and that can be good, or really bad.

Last year my family and I moved to a new state to start a business. We had trained, saved, and searched for the right opportunity as well as the property. We planned to run a home-based food business and so infrastructure and amenities were equally important as accessibility. We finally found what we wanted and in a flurry of activity we signed a lease, packed, and moved. So as not to bog down this post with the gory details I’ll get to the point… the Landlord was dishonest and breached the lease causing us to lose a years’ worth of hard work, money, and ultimately we had to get a lawyer. Now ultimately our case stands on its own for anyone leasing a home, but in our effort to educate ourselves about our rights I learned a few things I felt it might be worth it to pass on to you. So here’s a few tips...

Make friends with a Lawyer. I’m serious. Attorneys get paid for their time and do get expensive, but the $150-$250 to have them read through a lease agreement could save you thousands on down the road. If you’re in a chair there are many pro bono disability rights services that can at least advise you on such matters before you sign anything. If you have a friend or family member who is an attorney don’t assume favors, be honest about what you can afford, tell them what you need, and offer them something for their time.

Don’t be in a hurry. If you are even remotely considering moving start looking now. Give yourself time. When you rush you settle for second best and a lease can be a difficult thing to get out of.

Don’t be impressed and don’t believe the pictures. Anything can look great with a coat of paint. If you are limited physically take someone with you who can look at the attic, the crawl spaces, the plumbing, and under the cabinets. Have them check for rot, mold, leaks, pests, and anything that could be unsafe or a fire hazard.

Be specific with the Landlord about your needs. Educate yourself about disabled tenant’s rights. There’s a lot of them and they’re in your favor. There are many resources online. However, be kind and polite. Explain your daily routine and how the space does or does not work, and what you can do to change it. Educate yourself on all the accessibility aides that are modular and can save them money. They will appreciate that.

Ask for references and do your homework. They will want references from you, expect no less from them. If you can, speak to previous renters, other current tenants, employees, or other professional connections. Listen and watch their reactions, it will tell you a lot.

Get it in writing, get it in writing, GET IT IN WRITING. Protect yourself now and you won’t have to fight later. If the lease is vague, get it rewritten in clear language. Know exactly what you are responsible for and what you are not. If you need special wording due to the wheel chair be honest and say what you want.

Life in a chair can be a daily challenge. Knowledge is power and can ease the stress of so many unnecessary battles. Living independently is a great blessing and gift that many don’t get to enjoy. The more of us who get out there and make it the norm the more landlords will make more and more properties accessible.

Thanks for reading.

Topics: family, wheelchair, Patient Stories, Guest Blogs, how to

That Darn Easter Bunny...

Posted by Caleb Bartlett

Mar 26, 2015 11:00:00 AM

It's now the second day of spring. It snowed yesterday on the first day of spring. It doesn't feel like spring and these Meteorologists on TV might as well be telling us the Easter Bunny is running behind on chocolate orders and had to outsource holiday deliveries to Godiva. Fortunately the snow is melting very fast.

I'll tell you something else that is melting very fast, the weight around my middle. At least I hope so.

Because my injury is at a high level the muscles below my chest are mostly paralyzed. When a muscle is unable to move it becomes atrophied. The muscles that wrap around the abdomen are the support system for the core of the body. When you sit up, your core pulls you up. When you stay seated it holds you up. When you walk it stabilizes the entire torso. They work without even thinking about it. Their other job is to hold the stomach, intestines and other lower organs in place, tucked up under the diaphragm. When those muscles atrophy the organs slide forward and down causing a condition known as "Quad Belly". It gives the appearance of a beer belly. When any extra fat builds up on the body it tends to build up in and around that area. Also, the forward shift and lack of consistent muscle contraction can cause the metabolism to slow down considerably so once weight is gained it can be difficult to burn off.

It seems that somewhere between the holiday stuffing and gravy, the winter comfort food and the reduced trips to the gym due to below freezing temps and piles snow I started to resemble Boss Hogg on a frat boy Pub Crawl. If you're too young to catch the Dukes of Hazzard reference I simply... well... got fat. This is not good. Fat building up around the inner organs puts me and other spinal cord injury survivors at risk for early on-set heart disease and diabetes. So with summer approaching and my deep-seated need to look sexy in a leopard print thong (but mostly to just be healthy) I got my butt in gear. However, not after a fit of remorse and self-loathing that fed my other deep-seated need to wallow in the kind of selfish vanity only another Virgo like myself could truly comprehend.

I truly love food. All kinds of food. Every ethnicity, type and shape. Baked, fried, roasted, grilled, fermented, chilled, salted, smoked, boiled or raw. Meat, dairy, veggies, pasta, fruit, bread, desserts... my god... I love the culture around food, discovering a great new restaurant or recipe, learning how something made, sharing food with friends, growing and preparing food. In truth, I don't eat bad fatty food, processed foods, fast food or even candy! I just love high-quality, good food. What is it that song by Sting says, "If you love someone set them free..."

So chia seed smoothies and the gym, the continued electrical stimulation bike, smaller portions and a few other techniques have me exercising self-control and little by little seeing results. So screw you Easter Bunny and your tempting chocolate demons! Ironically, rabbits are vegetarians.

My goal is to lose twenty-five pounds... and keep it off. So often people with Spinal Cord Injury live a lifestyle and adopt habits to ease the daily emotional pain and frustration. Whether it be subconscious or not it is often covered by drugs, alcohol or anti-depressants. The need for the comfortable and familiar can run very deep and strong. Certain foods and activities can act as a drug as well. Personally, I believe this condition is a result of the feeling of hopelessness fostered by a long-held belief by the medical profession that there is no cure. These unhealthy life choices cloud the vision of the future and continue to hold many in a permanent winter of despair. We have to look beyond the common held belief and start believing in ourselves. We have to make positive, healthy life choices so we can live and be ready when the solution we've been allowing ourselves to hope for comes.

Spring always brings new life, and while your parents may have told you a libidinous bunny who lays colored eggs delivered all that candy to you... this spring I hope if you are reading this and need to let go of something to stay healthy, you will allow yourself to hope and believe the real truth that a cure is coming, and the next doctor who says, "there's no hope"... well... even your parents told you the Easter Bunny was real.

Thanks for reading.

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Topics: wheelchair, spinal cord injury, Spinal Cord Injury with Caleb, holidays, Guest Blogs

10 Things You Shouldn't Say to Someone Who Uses a Wheelchair

Posted by Mens Liberty

Jan 1, 2014 1:30:00 PM

By Rachelle Friedman,

I've heard some pretty crazy things come out of people's mouths in my few short years as a wheelchair user. Most people definitely mean well, but some sentiments aren't received the way many able bodied people might expect. In the disabled community, it's not uncommon for us to joke with each other about some of our interesting conversations with family, friends and strangers that often involve some off putting statements. Below are the top 10 things that I've heard people say since my injury that don't necessarily leave me with a warm and fuzzy feeling.

1. "You're Really Pretty for Someone in a Wheelchair."

Yes. People actually say this. There's this huge misconception that people in wheelchairs are unattractive, frumpy and sloppy. Well spinal cord injuries and other disabilities don't discriminate against attractive people. Some of the people I know in chairs are totally gorgeous! But honestly that's besides the point. If you're going to compliment someone, that is great! But leave the wheelchair out of it.

2. "I Had to Use a Wheelchair When I Broke My Leg, So I Know Exactly What You're Going Through."

I can't tell you how many times I've struck up a conversation with a total stranger only to hear about that terrible month where their leg was in a cast. They had to use a wheelchair too and so they totally get it. Spinal cord injuries involve a plethora of other issues that don't involve the actual paralysis. So I really hate to sound insensitive, but it gets kind of hard year after year to smile and listen to your short stint with a wheelchair while I'm on a nice outing with my husband.

3. "You're an Inspiration."

There are times where this is OK, but there are also times where this just makes me really uncomfortable. I'll give you an example. One night I was out with my friends at a local club. I was dancing with my girls when a guy walked up and said "you're a real inspiration." In that moment with my friends, I was care free, a normal girl just going out and having fun. But, then I'm reminded that "oh yeah. I'm in a wheelchair and people think it's merely inspiring that I go out."

After years in our chairs, we don't want to be called inspiring for driving to the grocery store, hitting the gym, or attending a sporting event. "You're an inspiration" equates to "If I were you I don't think I'd be able to leave my house" If it inspires you, that's great. But we just don't like to be told how incredible we are for doing the day to day tasks that you do. I'm often told by others that they'd never handle this injury with as much grace. You'd be surprised. This injury doesn't just smite the most strong willed of the human race. And yet a significant majority of us go on with life eventually.

4. "I Was Only Parked There for a Minute."

Don't. Just don't. This is the number one excuse us rollers get when we must confront someone who's illegally parked in a handicap spot. Besides the fact that this usually isn't true, I shouldn't have to wait for an able bodied person to run inside. I run into a handicap parking issue at least once a week. People who need those spots have schedules to meet and places to be as well. Just walk the extra 50 yards because I sure wish I could.

5. "Everything Happens for a Reason."

For many individuals hit with hard times, this very thought pulls them out of depression and gives them hope. To others it's another way of saying "fate wanted you to get hurt so that others would realize that their lives aren't that bad after all." For me? It's neither really. I may disagree but I'm not offended. I believe that sometimes really bad things happen to good people and it is what it is. In some cases you can rise above a tragedy and give it a reason by choosing to make a positive impact. In other cases, it may simply be a horrific event that requires not a purpose, but some time to cope and heal.

6. "Here, Let Me Help You!" [Rushes to My Side Frantically]

Undoubtedly the hurried helper is just trying to be nice! But let me explain the sentiments behind disliking this. When I was injured, a lot of things were taken out of my control. There's a laundry list of things I can no longer do without someone's help and losing independence can take away ones ability to feel "normal" at times. So if I'm at the store and you see me bending down to pick up my cell phone, Just give me a chance to get it. I promise that people in my situation have gotten used to asking for help and so we won't hesitate to ask if we truly need it. Also, we generally don't need help getting into our cars or pushing our chairs. We wouldn't be out alone if we couldn't do it! We appreciate that people want to be helpful, but I almost feel like I need to fight the helpers off so I can learn how to do more things for myself.

7. "It's Good to See You Out."

I'm not talking about a scenario in which I bump into an old friend at a restaurant I'm talking about complete strangers coming up and saying it. I'm not even sure what this one is supposed to mean. Does society think we are all hermits? An overwhelming majority of us leave our house. I promise!

8. "You Have Found Yourself a Real Stand-Up Guy."

The fact that my husband chose to stay with me after my accident is not what makes him a stand up guy because his decision wasn't based on morals. Staying with someone "because it's the right thing to do" is actually in fact the wrong thing to do. You should choose to stay with someone because you love them. plain and simple. So when people shake his hand and tell him what a "real man" he is for staying and then tell me how lucky I am to have him, it leaves a bad taste in our mouths. This is a conversation Chris and I have had with many couples like ourselves. No one wants to be given a high-five for not leaving the side of someone they truly love.

9. "With Your Effort And Attitude, I Know You'll Walk Again."

It doesn't work that way but oh how I wish it did! If a lamp isn't plugged in, I assure you a good attitude will not make it turn on no matter how hard you try to flip it on. Some people's injuries are less severe and so, for them, a rigorous therapy schedule will heed results. But for many of us, it just won't happen without science. There's plenty of people who have recovered function who have a bad attitude and millions still in their chairs who have lots of determination. If you think effort and attitude is a solution for a cure, then next time you're in a thunderstorm call me after you've wished it away.

10. "Anything in Your Preschool Teacher Voice."

I am not sure what makes people who I meet for the first time want to talk to me in that high pitched voice, but it's kind of awkward. And I'm not talking about sweet old ladies. I'm talking about individuals that are around my age. If you were meeting an adult who doesn't use a wheelchair, you wouldn't say (insert preschool teacher voice here) "it's so nice to meet you sweetie!" I smile and return the excitement, but I'd much rather have a more age appropriate interaction.

If you've said any of these, don't feel bad (unless you've stolen a handicap parking spot!). We aren't angry or offended, but we want people to understand. We aren't inspiring for living our every day lives, completing the mundane tasks we as adults are often subjected to. Able bodied partners of people with disabilities are not heroes. They just love their significant others like anyone else. No need to pat us on the back (or HEAD!) just for leaving our houses. I may not be speaking for everyone, but I know that I'm saying here what so many people in my situation want able bodied individuals to know. If you had a disability, would these things bother you?

Follow Rachelle Friedman on Twitter: www.twitter.com/FollowRachelle

Source: http://www.huffingtonpost.com/rachelle-friedman/10-things-you-shouldnt-say_b_4334039.html?utm_hp_ref=email_share

Topics: wheelchair

The coolest SCI awareness organization I had never heard of.

Posted by Mens Liberty

Dec 14, 2013 1:30:00 PM

DGF logo

Last month we celebrated Florida Spinal Cord Injury Awareness Week (November 10-17). Just a few days before that week started I was forwarded an email from FSCIRC news informing me of the observance. To be honest, I wasn’t aware Florida had a Spinal Cord Injury Awareness Week and I figured if I wasn’t aware of it, than there are probably many other Florida residents that aren’t  as well; what a great opportunity to write a blog.

There is one organization at the heart of this awareness week, The Darrel Gwynn Foundation. In 2006 the foundation successfully lobbied for and with a resolution passed by the Florida Legislature, created Spinal Cord Injury Awareness Week to generate awareness of spinal cord injuries and educate the public on ways to prevent them.

As a social media marketer, I did the only logical thing once I learned of this organization and quickly ran to check them out on Facebook and Twitter. To my surprise they have an awesome community of supporters, including NASCAR, DuPont Registry, and Barret-Jackson Auction Company (just to name a few).

If you couldn’t tell from the list of sponsors, the Darrell Gwynn wheelchair donationfoundation has deep roots within the racing and automotive community. This is attributed to the founder of the organization, Darrell Gwynn. Gwynn was a professional drag racer at the height of his career when one day in 1990 during an exhibition race in England, he hit a retaining wall at 240mph. After fighting through several major life-threatening injuries, Gwynn survived but was left paralyzed and lost his left arm. However, he didn’t let his physical circumstances hold him back. He changed his role in racing from star driver to team owner and in 2002 founded the Darrell Gwynn Foundation.

Today Gwynn focuses all of his energy on his foundation, choosing to leave racing in 2003. Gwynn’s foundation works to provide support for people with paralysis and educate the public on how to prevent spinal cord injuries. The organization provides this support through 3 primary programs: a free education and prevention program presented to high school students in South Florida, a patient assistance fund, and a wheelchair donation program. As listed on their website, the Darrell Gwynn Foundation has educated 81,900 students, awarded $1,467,000 worth of grants, and donated 252 wheelchairs.

Perhaps the most interesting and touching program is the wheelchair donation program. This is no ordinary wheelchair donation program, and neither are the wheelchairs that are donated. Unlike many other wheelchair donation programs and related charities, the Darrell Gwynn Foundation specializes in high-tech, customized wheelchairs. These wheelchairs can range in value from $6000 to $40,000 depending on the medical needs of the recipient. They are equipped with many advanced systems such as seat elevators and upgraded suspension in order to improve each recipient’s quality of life. Many times insurance will not cover the cost of these advanced chairs and for many of the recipients, the Darrel Gwynn Foundation is their last resort. Individuals in need of a chair may begin the free application process by filling out a pre-application form via the Darrell Gwynn Foundation Website.

DGF wheelchair2In closing I would like to give a big thanks to Darrell Gwynn and his foundation. They are making great efforts to improve the quality of life for those with spinal cord injury and educate the public on ways to prevent this life changing injury. I would highly reccomend visiting the Darrell Gwynn site and reading some of the remarkable stories they have to tell, they also have some pretty interesting videos to watch. Florida Spinal Cord Injury awareness week may be over, but the fight to help those with spinal cord injuries continues, and the Darrell Gwynn Foundation is leading the charge!

Topics: wheelchair, Interesting Articles

Helpful Ways to Beat The Heat with Multiple Sclerosis

Posted by Sarah Woodward

Aug 26, 2013 8:03:00 AM

Those with Multiple Sclerosis (MS) know what it’s like when in a hot environment. It’s not pleasant, and heat can make symptoms worse.  Between 60-80% of those with MS have some intolerance to heat, producing symptoms of numbness, fatigue and more.

There are a number of strategies the experts recommend to help control the effects of heat among MS patients.  Most people with MS are heat sensitive because of the scars in their central nervous system.  Where they have demyelination even in the spots that are repaired by their own system, those areas do not insulate the nervous system as well as the original myelin coating.  As a consequence, increases in body temperature can cause an almost immediate change in their reaction to heat.

Heat exposure can cause previous known symptoms to be reactivated or new symptoms to appear.  The upside is that these symptoms don’t cause permanent damage. Additionally, people with MS have trouble regulating their body temperature and their sweat glands don’t work like they are supposed to.  Consequently, they need additional help to regulate body temperature when its hot.

Among the many heat sources in our environment, those external ones we can sometimes avoid...i.e. the sun.  Internal heat sources are a different story, and they can include heat from a fever, menopause, hot flashes, hot beverages and spicy food. Medicines can also cause  fluctuations in how the body functions, so it’s a good idea to review your drugs and their side effects. Most of these internal heat sources are hard to control, but there are ways to stay more comfortable. 

Here are a few tips:

  • Stay hydrated- Drink plenty of cool drinks, especially water. Sodas and juices don’t quench thirst as much as water.  Limit the caffeine and alcohol you consume, because they can elevate your temperature. Take along a cool drink if you’re traveling. Additionally, eat cool foods that contain water like grapes and watermelon.
  • Cool Places-  Stay in the shade, or if you must be out in the heat, keep a spray bottle nearby and spray yourself when you feel too hot. Stay near water, and take a dip in the pool when convenient. If you’re about to get into a hot sitting car, let the air conditioner run for a bit before you get in and start driving. Air condition your house, or stay near an AC window unit.  If your utility bills get too high, tint and insulate your windows. Stay away from appliances, particularly stoves, grills, dryer, heaters, ovens and other machines, which give off heat. Finally, create your own shade by carrying an umbrella.
  • Shower-  Before doing something strenuous like playing sports, walking or running, cool off with a shower before the event. It will increase your tolerance to heat. Alternatively, you can take an ice water plunge with your feet and hands to cool your core temperature before venturing out.  The benefits of pre-cooling your body can last up to two hours in regulating your internal temperature.  During your activity, take cool down breaks and don’t push yourself to the point of being overheated.
  • Prepare for Heat-  Be strategic about your exposure. Run your errands that require you to be outdoors early or late in the day.  Avoid the mid-day heat between 10am and 2pm. Humidity can also play a big role in how your body reacts to the heat, so plan accordingly.
  • Dress appropriately- Wear light-colored clothing made of cotton, or athletic “dry-fit” clothing that can wick moisture away from the body.  You can also purchase cooling garments like neck scarves or wrist bands that you pre-soak in water. You can also create your own cooling garment by moistening the clothes you are going to wear, creating your own evaporative system that will regulate rising body temperature.

If you suffer from Multiple Sclerosis, don't be discouraged by the heat of the summer months. Find the strategies that work best for you, because you can beat the heat!

David Novak
David Novak is a international syndicated newspaper columnist, appearing in newspapers, magazines, radio and TV around the world. His byline has appeared in GQ, National Geographic, Newsweek, The Wall Street Journal, Reader's Digest, USA Today, among others, and he has appeared on The Today Show, the CBS Morning Show and Paul Harvey Radio. David is a specialist at consumer technology, health and fitness, and he also owns a PR firm and a consulting company where he and his staff focus on these industries. He is a regular contributing editor for Healthline. For more information, visit http://www.healthline.com/.

Topics: urinary management, wheelchair

A Life Changing Day - Eman's Spinal Cord Injury and Rehabilitation

Posted by Sarah Woodward

Aug 7, 2013 9:34:00 AM

Sometimes in life, there are events that make you remember just how lucky you are to be alive and healthy. One of our newest clients is Eman, and it's been quite the ride so far. We've been so moved talking with Eman and his family, we wanted to share a bit of his story here for all of you.

Orange Line

Eman 3Emmanuel Gilligan, who goes by Eman, is an American citizen who has lived in Rio de Janeiro, Brazil for the past 17 years, with his wife and four children.  Eman is an accomplished musician, and while his studio work is the family’s primary source of income, he, his wife, Julia, and three of their children also perform with him in many different venues.  They also regularly perform voluntarily for the poor and infirm as well, sharing messages of hope and love. 

On March 5th of this year, Eman was leaving a bank in a Rio suburb after he had withdrawn some money, and he was targeted by two men on a motorcycle who chased him as he drove off.  Although he desperately tried to lose them, they were able to corner him. As they roared up to his car, the man on the front of the motorcycle ordered the man behind him, “Kill him!,” and the man shot Eman through the driver’s side window.  The 9mm bullet was fired at close range and entered his left arm, went through his left lung and lodged in his right shoulder, where it remains.

This happened at 1:00 in the afternoon, in a neighborhood where luckily people summoned help immediately, and an ambulance rushed Eman to the largest government hospital in Rio (Miguel Couto).  The doctors told the family later that it was a miracle Eman was alive, as they have very few patients survive being shot with a 9mm at point blank range.

After Eman’s breathing was stabilized (his lung was perforated), Eman was able to tell the doctors that he had no sensation, feeling or control of his legs. X-rays and CAT scans showed the bullet had grazed a vertebrae, sending 3 small fragments into his spinal cord.  The velocity and intense heat of the passing bullet also created what the neurosurgeons in Rio described as a lesion on his spinal cord.

Eman in hospital10 days into his hospitalization, Eman regained breathing function as his lung drained and began to re-inflate, and began having sensations that he described as feelings of ants or insects crawling up and down his legs.  Neurosurgeons initially dismissed this as a “psychological phenomena” that occurs sometimes with paraplegics, but after re-examining him, they proceeded with an operation to remove 3 tiny bone fragments at the T7-T8 vertebrae.

A week after the surgery, Eman was taken home by ambulance, where he remained for a week.  A urinary tract infection and large pressure ulcer that developed while in the hospital worsened in the week he was home, and he returned to the government hospital for treatment of both conditions. 

After three more weeks in the hospital, Eman again returned home.  Although he has had increased feeling and sensitivity to touch in his legs, he has no control over them, and has been
experiencing terribly painful spasms, day and night.  The pain, the lack of sleep because of the
pain, the necessity of another return to the hospital for plastic surgery needed to patch up the pressure ulcer, the many fears he faces for himself and his family - as you can imagine, he is going through an extremely tough and trying time physically, emotionally and psychologically.

While Eman’s family is so grateful to the hardworking (overworked) doctors and nurses at the government hospital in Rio who saved his life when he was bleeding to death from the initial gunshot, the level of care he received after he was out of intensive care was frankly, appalling. 

Because of the large pressure ulcer on his back’s sacral area, Eman cannot sit for long flight from Rio to the U.S., so travel arrangements have been very difficult, to say the least. But in the past couple of weeks, this seemingly insurmountable obstacle was overcome! Thanks to Uncle Sam and the Victims of Crime Dept. of the FBI. They have graciously arranged a special medevac flight that fly to Brazil and pick up Eman, taking him from Rio to Atlanta, GA.

Eman in hospitalIn Atlanta, where Eman’s mom lives, the Shepherd Center, a renowned institute for spinal cord injury treatment and rehabilitation, has agreed to evaluate and treat him.  This ambulatory flight and acceptance into the Shepherd Center in Atlanta are BIG answers to prayer, and we want to THANK everyone who has been praying for Eman’s recovery.

Julia has kept a detailed, photo-filled blog for relatives and friends of the family, where many more details of the shooting and the day-to-day events that have transpired since can be found:  ttp://emmanuelguitarman.blogspot.com

A news article about the shooting that appeared in the Rio Times can be found here: http://riotimesonline.com/brazil-news/rio-daily/american-musician-shot-in-rio/

Another Rio Times article about a fundraiser held by the expat community in Rio for Eman can be found here: http://riotimesonline.com/brazil-news/rio-entertainment/rio-community-throws-gilligan-fundraiser/

If you would like to hear a beautiful song and prayer written and performed by Eman, "Lead Me to the Rock that is Higher than I," please click here: http://yourlisten.com/channel/content/16962095/EG_Lead_Me_to_the_Rock

Another inspiring song, "Third Option," which Eman wrote for his teenage daughter Larissa, can be found here: http://yourlisten.com/channel/content/16962091/Emmanuel_Gilligan_Third_Option

The entire Gilligan family extends their heartfelt thanks to each of you who have expressed such concern and love for Eman in this time of crisis. We know we are facing an uphill struggle to obtain the healing and restoration that is now needed. 

Topics: wheelchair, Caregiving, spinal cord injury, Patient Stories

Understanding Spinal Cord Injury with Caleb: Part 2

Posted by Sarah Woodward

Jul 29, 2013 3:28:00 PM

CalebAs I promised last month I will be sharing a bit about life with a spinal cord injury. Most of the symptoms or side-effects of a damaged spinal cord are similar across the board. Degree and intensity of these effects are determined by the factors I outlined in my last post, level and severity of trauma being key. Much of what I will share today is subjective based on my personal experience, but in my communication with friends in the spinal cord community and study of the condition many experiences are the same, if not variations on a particular set of issues.


Before I go any further please understand that many of you know me personally. Much of what I am about to discuss has remained intensely personal and only a few people know the extent of my physical situation. I will be explicit so be forewarned. This is not an attempt in any way to gain sympathy, it is simply a presentation of a very real life as I have lived it, be it right or wrong over the last 19 years.

In April of 1994 during my junior year of high school I was swimming with 2 friends in an above-ground pool in Crescent Beach, Florida. I have lived around water and water sports my entire life. My father is a surfer, an excellent swimmer, avid fisherman and sailor. He saw to it both of his sons were comfortable around water. By 16 I was a surfer as well with several large hurricane swells under my belt, more than a few Northeasters, river rafting Florida's springs and diving for conch in the Bahamas. I've had reef scrapes, fin cuts, banged my head, bounced off of packed sand bars, gotten pounded in the shore break, even dove into the shallow end, but for some strange reason on that day I caught it wrong.

I foolishly was attempting an upside-down cannonball, which is called a "watermelon". The point is to of course make a big splash. Which I did, but not quite in the way I intended. I did not clear a full rotation before connecting quite solidly with the bottom of the pool. I landed across the back of my shoulders where my neck meets my back. The sudden impact forced my neck forward so violently it crushed the C5-C6 Vertebrae. X-rays later revealed what is called a "burst fracture". This means that the spinal column became so compressed it caused the vertebra caught in the pressure point to "explode". Imagine you are holding 3 checker chips between your thumb and forefinger. If you apply enough pressure the one in the middle will pop out. This is essentially what happened in my neck.

I immediately knew what I had done. The first sensation was that my body vaporized into thin air, accompanied by what seemed like thousands of air-raid sirens between my ears. Next was the pain. I didn't know pain like that was possible. Like a hot dagger at the base of my neck shooting lightning bolts of electricity into my skull. In my field of vision I could tell I was face down, floating just below the surface of the pool, my arms floating like limp seaweed unresponsive to the survival impulses of my brain telling them to get me to the surface for air. I knew I was drowning and in seconds it could be over.

The next thing I felt was rising up out of the water. I realized my friend Jennifer was holding me in her arms. All I wanted was air. I could barely get enough because the muscles that expand the rib cage had been paralyzed along with my diaphragm which would not return without intense respiratory therapy three weeks later. I could barely speak the words "I've broken my neck..." To this day I owe so much to two very special women, April Johnston and Jennifer Tooley who acted quickly and maturely to save my life. Within the hour I was life-flighted by helicopter to what is now Shands Medical Center in Jacksonville, FL. The flight was loud and cold and only added to the intense ringing and pain growing in my head and neck. As my body went into shock I vomited up and into the oxygen mask, the contents of my stomach pouring into my ears and hair and down my neck. This happened twice. Upon landing I was rushed into the ER. At this point things became a blur of wires, tubes, scissors, clipboards and questions. Finally with the pain, now worse than ever, like fire burning my brain, I fumbled with the words, but got them out, "Please... put me out." That was it, everything went black.

I awoke 8-10 hours later in a morphine-induced stupor, wires and tubes everywhere. In my nose. In my mouth. An oxygen mask over my face. I still could not feel my body. What followed over the next three to five days all runs together. I remember many details, bits and pieces, but don't ask me to put them in order. The diagnosis was acute spinal trauma, incomplete, caused by a crushed C5 vertebra. To repair the damage bone was grafted from my left hip into my spine and my C4, C5 and C6 vertebrae were fused together using a titanium plate. My neck was stabilized by what is known as a Halo. A rather ghastly-looking device that uses a ring around the crown of the head fastened to the thickest part of the skull by four screws. That ring is in turn secured to four steel rods which bolt to a rigid vest lined with lambs' wool and worn tightly around my chest.

Because of inhaling massive amounts of pool water within 48 hours I developed a massive infection and critical pneumonia. Unable to clear my lungs they collapsed and after 18 hours on a C-PAP machine it blew a hole in my right lung. Regular suctioning left me choking and vomiting. I had to be put on a ventilator via a tracheotomy and given massive doses of antibiotics. A G-tube and J-tube for feeding rounded out the ensemble and I spent the next three and a half weeks in the trauma ward of University Medical Center. Slowly sensation began to return is various ways. It often felt like sparks, bursts of electricity. I thought for sometime,  until they told me otherwise, that I was lying in some sort of traction contraption because my spine waking up felt like I was balanced on a metal beam. Tingling and burning, shooting pains, buzzing and popping in my brain. My lungs getting vacuumed out frequently. The prognosis was that I would spend my life attached to a breathing machine, but in my unit there was a very special person who truly was one of those along the way to whom I owe my life. They called him "Trauma Bob". He was my respiratory therapist, a tough old Navy veteran who was covered in tattoos and smoked like a chimney. Bob understood that the lungs and diaphragm are muscles and in the same manner by which physical therapists could strengthen and develop arms and legs a respiratory therapist could help regain use of the respiratory system. Little by little each day he worked with me. I blew up balloons, inhaled and held my breath, yawned, coughed and all sorts of other breathing exercises. Then Bob would step outside for a cigarette. Go figure.

Years later however, I would thank God for every breath, whenever I'd get a cold or infection that would land many a spinal cord injury survivor in the hospital with pneumonia, I would think about Trauma Bob, wonder where he is, say a prayer and hope he quit smoking. I spent exactly four months in the rehab hospital of Memorial Medical Center in Jacksonville. As I slowly regained strength and rest the emotional impact of what had happened to me began to set in. I will get to that in-depth in next month’s posting, but it bears great importance here because as I began to understand the limitations of the injury the reality of what was potentially ahead of me was not something any 16 year-old should ever have to face.

One of the first sensations to return was hunger. Then I slowly acquired what is known as deep sensation. I could tell where my legs were, but if you squeezed my left foot I would confuse it with the right. Pain and burning around the injury site left rather quickly to be replaced by shooting electric impulses up and down the spine. My hips and legs felt as if they had fallen asleep and the tingly returning of blood was waking them up, only they weren't waking up and the tingling remains to this day. The moment they sat me up on the therapy mat I went white as a ghost, dizzy and vomited. You would too if you'd been flat on your back for a month.

The indwelling catheter draining my bladder was removed and replaced by a scheduled catheterization four times a day. This was done to encourage the bladder to drain on its own, something I could not regulate and control on my own and so it remains to this day. To prevent accident an external catheter is worn which is essentially a condom lined with an adhesive and open at one end that is attached to a tube, the tube allows the urine to drain into a bag concealed under my clothes. Yes, it comes off, yes you get wet, yes you must be washed, dried, changed and so must the wheelchair and its cushions. The entire process can take up to an hour and half and is still something that occasionally happens. During my time in rehab it happened as often as three times a day. Over the last nineteen years it has occurred in restaurants, the car, on a friend's rug, in church and with house full of guests over for a holiday. The next step was to regulate my bowels. One of the primary causes of disease and detrimental conditions in spinal cord injury is the body's inability to remove toxins on its own. For instance, I don't sweat. Most of my body cant tell hot or cold therefore it doesn't know when to perspire. I've suffered burns, cuts and insect bites and not known of them for hours afterward. So in the case with regulating my digestive tract an enema was administered every other night followed by a sponge bath, and later a shower when the halo was removed. That schedule continues to this day and for those of you who are thinking this through, yes accidents do happen, the various causes can be detected and prevented in the future, but yes, they happen. In the car, on an airplane, in Madison Square Garden, even during dress rehearsal for a play you're directing in college. This personally is perhaps the most difficult aspect of spinal cord injury from a mental and emotional standpoint and I'm sure the reader can understand why.

As my strength returned my ability to balance my torso became key. I have no nerve control over my core and therefore those muscles have greatly atrophied. This is why I currently have a condition called "quad belly". As the muscles that hold the inner organs in place atrophy gravity pulls the organs forward giving a somewhat beer-belly appearance. It becomes more accentuated with weight gain obviously. Back to balancing the torso... the best description I've heard for living with paralysis from the chest down goes like this... Go to your local gym, find the biggest pilates ball in the place, sit on it, place your hands in your lap, lift your feet up off of the floor and try not to fall over. Now do this everyday, all day for years on end. You must learn to eat, shower, get dressed, maneuver a wheelchair, open doors, even make love all while feeling like the lower half of you is about to roll right out from underneath you, which sometimes, it does.

In the early 90s the strides forward in physical therapy were yet to come. The general attitude was get them healthy, get them the skills to cope and send them home. Anything else they achieve is up to them. So in late September of 1994 they sent me home after five months in the care of the hospital. Since that day very little about my day to day schedule has changed. While there have been moves across the country, college, career changes, an ever-changing spiritual journey, new friends, old friends and even dating and relationships it's still pretty much the same. In the morning the external catheter is removed, I'm washed and dried and a new one is applied. The bed-side bag that has caught the urine from the night before is emptied, washed and put away and replaced with a small one strapped to my leg. My skin is checked for red spots, sores, any blemishes or injuries of any kind. Then I get dressed with the assistance of a family member and lifted into the chair. Either an aide or a family member assists me with my hair and brushing my teeth. I can burn myself on the stove so my meals are prepared. If I need to use the restroom I can feel my bladder and lower abdomen constrict, my blood pressure goes up slightly and the bag on my leg fills up. It is then drained in the bathroom. This too requires assistance. In the cold weather my bones in my legs and hips develop a deep soreness related to the arthritis and bone loss from sitting for nineteen years. This usually causes me to become tired around 2pm so I sleep for an hour by propping up a pillow next to my desk and leaning on the wall. Because my digestive system moves much slower than normal I've developed a gluten allergy. In recent years I've become very conscious of diet. Spirulina, alkaline shakes, herbal tea, fruit juice, smoothies, organic eggs, chicken, fresh fish, green veggies and salad are staples. I've lost weight in the last year and I have a bit more to go. In the late evening I transfer back onto my bed, remove my clothes and transfer to a special chair that allows me to use the restroom and shower. My bathroom is modified so that I can roll in, turn around and roll into and out of the shower with little effort. The shower is large with two heads, one is removable to ensure I am thoroughly rinsed. Any soap residue can quickly turn into a nasty, raw rash. Once the whole process is complete which takes over an hour, I am transferred back to my bed where another new external catheter is applied along with the bed-side bag. I wear white anti-embolism stockings to ensure good circulation. This is when I get a fresh pair. Finally my aide positions me on my side, propped up by pillows, where I will sleep several hours until I wake up and need repositioning. In the morning the process is repeated all over again.

Caleb 2This has been my primary mode of life since my injury. Spinal cord injury affects every single area of your life. Through all of this the people I owe everything to, and that includes my very life, are my family. My father, my brother Chris, my brother Ethan and my mother. Ethan and my mother above all. I owe them everything. It is because of them I am as healthy as I am. Doctors and other medical professionals are often amazed at my level of health and resistance to disease. It is because of their daily commitment and self-sacrifice, 24 hours a day for nineteen years that I have never had another over-night stay in the hospital. They have taught me what true love and friendship is and what it means to be loyal. I love them with every fiber of my being.

Topics: urinary management, wheelchair, Caregiving, medical research, spinal cord injury, physical therapy

Disaster Planning and Spinal Cord Injury

Posted by Sarah Woodward

Jun 7, 2013 9:24:00 AM

While the snow storms of winter may be behind us, those of us in warmer climates are just gearing up for hurricane season. So to help you get prepared we wanted to share the following advice from the Florida Spinal Cord Injury Resource Center.

June 1st marked the official start of hurricane season and every year we've been providing you with resources and links to help you prepare.  Landfall might not happen this year or even next, but eventually something will come our way.  Are you prepared?  We have been lucky for a few years now but this year's prediction of an ABOVE-AVERAGE season should hopefully jolt you out of any complacency.  Obviously, the best course of action is to get out of the way of a storm's path altogether.  However, for some of us, that just isn't a realistic possibility.  Therefore, you must have a plan.  Keep reading to discover some ways to make your preparation as effective as possible.

Orange Line

SCIs and those with disabilities need to take special precautions when it comes to supplies, medications, and equipment.  Consider what YOU need to do and take an active role in protecting yourself and your family.  Results from focus groups conducted by the National Organization on Disability's Emergency Preparedness Initiative (EPI) show that people with disabilities need to take on a more self-reliant role in emergency planning.  We are the only ones who know exactly what our needs and abilities are and we should be diligent in communicating this information to those who will help us before, during, and after a disaster.

Some quick suggestions:

  • Preparedness is a personal responsibility.  It begins with the individual.
  • Submit an application to your county's special needs shelter if you think you qualify.  If your county does not have a special needs shelter, contact your county emergency management office.
  • Create an emergency plan and practice it with your friends and family members.
  • Be part of the solution.  Not the problem.

One aspect of preparation that's becoming more important is the use of technology.  FEMA's Ready Campaign puts emphasis on integrating technology into individuals, families, and businesses preparedness plans.  Taking a few early steps now could save you a lot of headaches later on.  Having a plan might even save your life!  A 2012 Nielson report revealed that nearly 55 percent of mobile phone owners in the United States own smartphones. As a simple resolution, Ready is asking all smartphone owners to turn the technology in their purses and pockets into a life-saving tool during and after an emergency or disaster.

Below are additional ways the Ready campaign recommends implementing technology into your emergency plans:

  • Learn how to send updates via text and internet from your mobile phone to your contacts and social channels in case voice communications are not available;
  • Store your important documents such as personal and financial records in the cloud, in a secure and remote area, or on a flash or jump drive that you can keep readily available so they can be accessed from anywhere; and;
  • Create an Emergency Information Document by using Ready's Family Emergency Plan template in Google Docs (use Google Chrome to view) or by downloading the Ready Family Emergency Plan to record your emergency plans.
  • The FEMA App (smartphone app for mobile devices) contains disaster safety tips, interactive lists for storing your emergency kit and emergency meeting location information, and a map with open shelters and open FEMA Disaster Recovery Centers (DRCs). The app is free to download through your smartphone provider’s app store
  • Download the Resolve 2B Ready 2013 Toolkit for tips and actions you can take.

If you have any questions please don't hesitate to contact Ready at ready@fema.gov.

The links below offer additional information and tools to become prepared.  Please take a look and form your own practical disaster plan should you find yourself in a potential catastophic situation.

  • Smart911 is a free service that allows citizens across the U.S. to create a Safety Profile for their household that includes any information they want 911 to have in the event of an emergency. Then, when anyone in that household dials 911 from a phone associated with their Safety Profile, their profile is immediately displayed to the 911 call taker providing additional information that can be used to facilitate the proper response to the proper location. At a time when you may be panicked, or unable to communicate, or it could be unsafe to communicate, Smart911 ensures that the details you would need to tell a 911dispatcher are immediately available if you cannot provide them verbally.
  • The Florida Disability Disaster Plan web page - This resource, developed by Volunteer Florida and hosted by the Florida Division of Emergency Management, is one of several tools available to help persons with disabilities and their families develop a "Florida specific" Disaster Plan.  Find county information on sheltering, plan creation, and videos.
  • Ready.gov - Launched in February 2003, Ready is a national public service advertising campaign designed to educate and empower Americans to prepare for and respond to emergencies including natural disasters and potential terrorist attacks.  Visit the People with Disabilities and Other Special Needs page where you can find some tips and tricks to help you prepare.  Ready.gov advises those with disabilities to: (1) Get a Kit of emergency supplies, (2) Make a Plan for what you will do in an emergency, and (3) Be Informed about what might happen.  For further details, download a PDF version of Preparing Makes Sense for People with Disabilities and Special Needs.
  • The Federal Emergency Management Agency (FEMA) offers much information on disaster preparedness for special populations.  Preparing for Disaster for People with Disabilities and other Special Needs (FEMA 476), provides disaster preparedness information specific to people with disabilities and other special needs, including the elderly.  Also available in Spanish.
  • Information on Emergency Preparedness from Disability.gov - Provides links to resources, plans, federal laws, and more.  There is also a specific Florida Resource section.
  • The Red Cross recommends some safety steps and tips to prepare for a hurricane.
  • Emergency preparedness links from the Florida Department of Health Brain and Spinal Cord Injury Program.

Topics: wheelchair, spinal cord injury

Visit Men’s Liberty at the NWBA National Tournament!

Posted by Sarah Woodward

Apr 11, 2013 12:34:00 PM

Men’s Liberty is thrilled to be attending the upcoming Wheelchair Basketball Association National Competition in Louisville, Kentucky next week.

NWBA National Championship

Four days of exciting competitions kicks off on Thursday April 18th at the Kentucky Expo Center. With 86 teams and nearly 1,000 athletes competing, it’s definitely going to be an event to remember!

Next week’s events are run by the National Wheelchair Basketball Association (NWBA). The NWBA is comprised of over 200 basketball teams across twenty-two conferences and seven divisions. The NWBA was founded in 1948, and today consists of men's, women's, intercollegiate, and youth teams throughout the United States of America and Canada.

Competitions will be taking place Thursday-Sunday and tickets for the events are available to the public.  Tickets are expected to be $5 per day and $15 for the full tournament. We will be offering pre-sale fan packages for purchase for friends and family. All children ages 12 and under will be admitted free of charge. We encourage anyone in the area to come and check it out!

We’re thrilled to be getting involved in this great organization. And Men’s Liberty customer care reps will be available at both the Expo and Hoops Center to answer your questions about Men’s Liberty and how you can get the healthier option for managing urinary incontinence.

We look forward to seeing you all there!

And if any of you competitors are interested in winning a 32" HD TV, click below to Enter Our Adaptive Sports Photo Contest!

Enter Our Photo Contest!

Topics: wheelchair, adaptive athletes, spinal cord injury

Paraplegic Athlete to Push Across America for Disability Awareness!

Posted by Sarah Woodward

Apr 6, 2013 11:19:00 AM

We’re excited to share this news from LA. Today is the kick off of the Push Across America by adaptive athlete Ryan Chalmers. We’re going to be following along and cheering on Ryan’s amazing journey and hope you’ll do the same!


Check out this interview with ABC News above!

Push Across America is an adventure and a journey. Ryan will push his racing chair from Los Angeles to New York City in the spring 2013.

Ryan’s motivation for Push Across America stems from his desire to encourage others to take on challenges and give back to individuals and organizations that have made a difference in their lives. That’s why he’s doing it. To touch people’s lives and give back to an organization that has changed his life. Ryan’s a great ambassador for persons of all ages as he’s a young man who exemplifies the messages he so honestly delivers: “Never Give Up! Always Do Your Best! Make A Difference!”

Ryan was born with Spina Bifida, an incomplete closure of his spinal column, which means he does not have complete use of his legs. He started playing sports when he was eight, eventually focusing on basketball and track. In college, he decided to focus on track, and in 2012 he realized his dream of being a member of Team USA at the Paralympic Games in London.

Ryan’s journey has not always gone smoothly. At the age of 13, he suffered a two-year setback from sports due to a pressure sore he developed following a surgery. Nonetheless, he reached deep inside himself and found the strength to push forward. He learned to SCUBA dive with Stay-Focused, a nonprofit organization that works with teens with physical disabilities. It changed his life. Ryan became the organization’s first mentor in 2007. Stay-Focused mentors assist first-time divers in all aspects of Stay-Focused’s programs, and represent the emerging leadership of the organization. In 2012, Ryan achieved yet another significant milestone in becoming a PADI-certified Divemaster, which represents the first level of professional certification.

Ryan will be pushing the equivalent of two to three marathons a day for 71 days.

He doesn’t know how his body will react to this punishing schedule or how the terrain and weather conditions will conspire to challenge him. What he does know is he’ll do it. He’s passionate, determined, and focused.

Ryan will leave Los Angeles on April 6th, and arrive in New York City on June 15th. He’ll be passing through 14 states and the District of Columbia. National and local media will be covering his journey and you will be able to follow his progress on this website, Facebook, and Twitter.

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We’ll be following along with Ryan and sharing updates here on the Men’s Liberty blog. We’re looking forward to seeing this inspiring young man succeed!

Enter Our Photo Contest!

For more information on Ryan’s journey and how you can support him and the Stay Focused charity, visit them online at www.PushAcrossAmerica.org


Topics: wheelchair, adaptive athletes