Category Archives: Feature stories

Newly-Injured Blog Series: Adjusting to the Shock of SCI

The shock you feel when hearing, “I’m sorry, but you have a spinal cord injury and will never walk again” can be soul-crushing. Everyone assumes you fall into a deep depression, but many find themselves in a state of shock instead. “This is my body now?”

How do you cope with the shock? Time, of course, is your closest ally when it comes to absorbing the blow, but other things can help as well. While no list of tips is the magic tonic, we hope our suggestions from real-life SCI survivors help.

The Importance of Hope

One cannot stress the importance of having hope when you are adjusting to living with a spinal cord injury. There’s more reason to hope than ever before for treatments that will one day lesson spinal cord injuries, from stem cell research to electric stimulation of spinal cord. It’s no longer a fools errand to have a hope in the face of spinal cord injury. From getting involved in research trials to helping raise money for research, it helps both you and the research itself

Meditate/Pray

It may seem simple, but the power of meditation or prayer cannot be underestimated in a crisis like a SCI. Even if you’re not the religious type, learning how to meditate can be a great thing when it comes to dealing with the shock. Through the concentration that meditation requires, healing can occur within the brain. And if you are the religious type, honing in on your spiritual side may help you understand and maybe even help explain what you’re going through.

Get All Levels of Support

From peers to friends and family, getting human support wherever you can find it plays a huge part in healing from the shock of a SCI. Whether they sit and listen as you explain your struggles or offer advice from their own life perspective, knowing people care and want you to survive and thrive can help in more ways than you realize. And if it’s difficult to find the kind of support you need, reach out to local rehab hospitals and get involved in their peer-support programs.

Challenge Expectations

Since the physical changes from a spinal cord injury can be so extreme, challenging preconceived expectations of what doctors and rehab professionals expect from you can be a huge tonic (especially when you’re told you can’t do something anymore). Don’t settle for rehab target goals that are supposedly in line with your level of injury. Incomplete injuries, especially, are a mystery and with the right rehab from the start, much more is possible than was previously thought.

Stay Busy and Be Adventurous

Another way to lessen the shock of your new life is to stay busy. People will tell you this in all types of situations, but when you have a spinal cord injury this is especially true. Whether it’s going back to school, learning a new trade or art form, starting your own business or traveling the world, staying busy and living boldly, dare we say adventurously, is guaranteed to shake that fog of shock.

Be Patient with Your Body (But Work Your Bum Off)

It’s important to be patient with your body as it heals, especially in the first six months after your injury. This is when the swelling in your spinal cord subsides and in many ways your nervous system begins to reboot itself. Intense exercise is a must in reeducating and stimulating your damaged nervous system. Watch this video to learn more about the importance of staying active and Activity-based Therapy.

The nervous system is mysterious and can take longer to heal than was previously assumed by doctors. The combination of persistent patience and intense workouts can go a long way toward recovering from a SCI. Return can happen six months out, or even multiple years after a person’s injury.

Whatever you do, don’t let the state of shock win. It may seem impossible, but with the right mindset – and time – you can exist in a state that will please your soul in nearly any situation.

NW Regional SCI System – Adjusting to Spinal Cord Injury: Sadness, Grief and Moving Forward

– SPNALpedia Learning Portal: Adjusting to the Shock of an SCI

– Shepherd Center: Adapting to SCI

– Mayo Clinic: SCI Coping & Support

Video

Overcoming the Shock of a Spinal Cord Injury (Part 1)

Adaptive Sailing: Complete Empowerment on the Open Seas

Seen above: An adaptive tiller extension arm.

One of the oldest sports in the world, sailing is also one of the most popular. And among people with disabilities, sailing is just as loved, which may surprise some. Sailing, however, at its essence is all upper body, making it the perfect sport to adapt. Plus, technological advancements in recent years have made this sport an option for nearly anyone. In fact, vent-dependent quadriplegics are even racing in regattas.

What’s great about adaptive sailing is that it allows ALL people with disabilities to master it, even those who don’t have a strong upper body. This isn’t true for most other adaptive sports. Hilary Lister, a quadriplegic from the UK who has no movement from the neck down, became the first quadriplegic in the world to sail around her country. And many other people with disabilities have begun to race competitively. It’s a fantastic sport!

Below are the basics on adaptive sailing for both paraplegics and quadriplegics. The boats vary, but they must be designed to not capsize and they must have an easy customizable cockpit design. Most adaptive sailing centers carry the Martin 16, the Freedom 20 and the SONAR, all deemed safe. For more in-depth information on everything adaptive sailing, please follow the links at the end of the article.

How Paraplegics Sail

When paraplegics arrive for their first day of sailing, they are always concerned about one thing – how will they get on the boat. But it is actually very simple with transfer boxes. Transfer boxes have a slide that you can maneuver into position, then slide down to get into the boat. Once in, you either transfer to a bench or seat depending on your balance ability.

For paraplegics without full torso control, a seat is used to provide more control of the boat while sailing. Most also use a strap across the lap to keep fully secure. To steer the boat, paraplegics can easily grab and maneuver the rudder with a tiller extension arm. For the most part, paraplegics can pull on the ropes just fine, but for those who need assistance, power winches are utilized.

How Quadriplegics Sail

For quadriplegics, a few more pieces of equipment are needed to sail independently. For transferring, a Hoyer lift is used. Once in the boat, they’re strapped into a chair that swings to different sections of the boat while sailing, giving them independent mobility. Not all seats, however, move like this. Some are stationary.

Several straps are used to keep quadriplegics in their seats securely. A chest wrap and lap strap are typically enough to keep a quad in position even in rough waters. And the type of steering equipment a quadriplegic uses depends on the severity of their injury. For low-level quadriplegics, many can steer the rudder with a tiller extension arm and can operate the ropes by pulling on them, but some may need to use a power winch to supplement their strength.

For those that really need assistance with gripping onto the tiller extension arm and/or ropes, ActiveHand gloves are used (or even duct tape by some). For quadriplegics with less movement in their wrists and arms, joysticks are used to steer. Joystick steering offers full control of the boat, from the steering to the sails. Splashelec is a well-known manufacturer of sailing joysticks in France.

For those with a high-level quadriplegia, a Sip ‘n Puff steering system is used that’s quite intuitive. There is one straw to control the rudder and one for the sails. You sip to starboard (to move right), puff to port (to move left). And to operate the sails, puff to let the sails out and sip to let them in (a skipper is behind you if help is needed).

Visit the following link to shop adaptive sailing equipment: Accessible Sailing Technology

Adaptive sailing offers people with SCI the rare opportunity to feel completely free from their disability. To leave their wheelchairs on the dock and be in control of where they’re going is a great feeling. And with more than 75 adaptive sailing organizations throughout the country (and counting!), the opportunity to try it may be closer than you think.

Have you tried adaptive sailing?

Learn more

US Sailing Adaptive Sailing Resource Manual

List of Adaptive Sailing Programs in the US

The largest adaptive sailing program in the US, Shake-a-Leg

Adaptive Sailing Videos

Vancouver’s Disabled Sailing Association

Judd Goldman Adaptive Sailing Foundation – 2015 Video

C.R.A.B. Clinic/Regatta for Persons with Spinal Cord Injuries video

Adaptive Sailing in Boston

AQVA – Our Adaptive Sailing Programs