How to reach out to those with spinal cord injuries

Jun 12, 2009 at 5:38 p.m. ET

Financial woes. Social withdrawal. Fear. Loss of hope. Spinal cord injuries don't just affect the physical; they affect people's entire lives, causing significant emotional and monetary damage. When these life-altering injuries occur, friends, family and community members might feel helpless.

Woman in Wheelchair

"It's an event that changes not just the individual, but the family, the community, and oftentimes the extended community," says Mike Patrick, who became a quadriplegic from a football injury in 1971. Fortunately, there are great ways to reach out. Whether it's through organizing fundraisers, offering to be caregivers or simply sending get-well cards, a little knowledge on how to react can go a long way in helping loved ones.

Organize a fundraiser

Medical expenses for spinal cord injuries are outrageous. In fact, the first year of paralysis costs about $500,000, says Lynne C. Samson, executive director of NTAF, a nonprofit organization that helps SCI patients raise money for medical expenses. Fundraising is a vital part of the healing process, as it helps SCI patients regain control of their lives and independence. "What a person who has been injured wants most is a recognition of their independence, their humanity and their equality to any other person," Samson says. Fundraisers can help pay not only for medical bills, but also for equipment afterward to help SCI patients function in daily life. Specially equipped cars and vans, for example, are important for those with SCI, as transportation prevents isolation and depression. A van plus accessibility costs $47,000, Samson says.

More information from NTAF is available on their website: NTAF.   

Start an organization

An organization generally provides emotional and financial support for people in similar situations.

Eddie Canales and his son Chris formed Gridiron Heroes after Chris became a quadriplegic from a football injury. The organization provides emotional and financial aid for those involved in similar injuries. "Part of what we want to do is not only be there for the families, but for the coaches as well," Eddie Canales says. "The worst thing that happens for the family is that the hope is taken away ... what we basically try to do is give that hope back." If starting an organization isn't an option, consider joining one that already exists. Helping others is the best way to gain knowledge and see the silver lining in your own situation.

More information on Gridiron Heroes is available here.   

Consider being a caretaker

After a debilitating injury, most people either hire caretakers or assign family members to the task. Family members who wish to become caregivers must keep in mind that it's a crucial role. Not only does it call for many long hours of care and responsibility for the person's financial resources, but it also requires forfeiting some of the caretaker's income to stay at home. "Figuratively, you're stepping into the shoes of the individual you're providing care for," says Paul Gada, personal finance director at Allsup Inc., a company that offers services and support for disabled individuals.

More information on caregivers is available here.   

Treat them as you did before

Individuals react differently to those with SCI, depending on how comfortable they feel around those people after their injuries. Some provide endless support, while others shy away for fear they might say or do something offensive.

As a friend or family member, the best way to act is how you did before the injury.

"If you were his friend before he got injured, he's still the same person," Canales says. "He's just in a wheelchair. Don't be afraid to laugh and joke with him like you did before."

The easiest way to feel comfortable is to talk to a professional or to the person with SCI and ask questions, Patrick says. Doing research and learning about the human body is a great way for both the SCI patients and the people around them to become educated.

"Ignorance is not bad," he says. "It's remaining ignorant that's bad."

Give them time to heal

Feelings of shame and embarrassment are initially common in those who have suffered SCI, so respect their space and give them time to heal, says Dr Elizabeth R. Lombardo, psychologist and physical therapist.

If they are weary of visitors, think of alternative ways to show you care including sending e-mails, cards and other gifts to the hospital or home.

"E-mails went a long way," says Sylvie Savage, whose son Sebastien became a quadriplegic after a hockey accident. "We had teddy bears, we had flowers, we had food." Sebastien liked reading the cards because they also validated who knew about his accident, Sylvie says.

While withdrawal and isolation are normal in the beginning, Lombardo suggests keeping a close eye for signs of serious depression in SCI patients. Health care providers can offer assistance.
Find out more about Sebastien's story by visiting his site: Sebastien Savage

Be honest

Honesty is still the best policy when it comes to SCI. Although it may be difficult, friends and family should never say, "Don't worry. You're going to be fine," says Dr Jack Stern, neurosurgeon, Clinical Faculty Yale School of Medicine.

Telling patients they will be fine only causes them to lose trust if something goes wrong. 

Instead, friends and family should be hopeful and realistic. A more constructive statement would be something like, "Only time will tell. Let's give it a chance and see if we see improvement," Stern says. Honesty, tempered with great empathy and sympathy, is the best way to react.

For more information on spinal cord injury visit the National Spinal Cord Injury Association