Category Archives: Feature stories

SPINALpedia and SCI Mentoring

While surviving a spinal cord injury is great, we want you to thrive. The only problem, is that most people who become paralyzed feel lost in the early days. Thriving in a newly paralyzed body is not easy to do. We all know family and friends, as much as they love us, cannot understand what we’re going through.

Therefore finding someone you can look up to and also has a spinal cord injury is one of the most important things to do the first year of your injury. If you’re lucky, the rehab hospital you’re at will introduce you to SCI folks. Very often they will invite someone to come to your room in the early days, who assures you that life can go on.

A great example of this is encapsulated in this photo from Tamara Mena, a SPINALpedia SCI Superstar, who started the Young Women’s Support Group at Santa Clara Valley Medical Center. She was recruited by her rehab hospital to do SCI peer mentoring, and the effect she’s had on people over the years is monumental. “This picture means A LOT TO ME! It was a very special moment. Super sweet Chelsie Hill said, ‘You know who was the first girl in a wheelchair I met that helped me completely change my outlook on life? This girl right here!’ (as she’s pointing at me and then giving me a sweet hug).”

Tamara (pictured in the middle), with Chelsie (left).

“I’m overjoyed seeing them do so well. So we had to take a picture!!” says Tamara. “And this reminds me why I started the Young Women’s Support Group at Santa Clara Valley Medical Center!” Learn more about her support group here.

For those of you who also believe in the power of spinal cord peer mentoring, or want to experience it yourself, or who live somewhere where it’s not accessible in-person, we’re offering online peer mentoring opportunities for both mentors and mentees.

If you visit the Community area on our site and click either the “Mentors” or “Mentee” tab to explore. Each section lists all of the members who’ve listed themselves as willing mentors and mentees. If you’ve registered, make sure to specify in your profile that you would like to be involved in our mentoring program. If you do, you’ll be listed in these areas.

To begin a peer mentoring relationship, we offer private messaging between members on our site. Just find a mentor you think you may click with, or a mentee you think you can help, and send them a message. If you have any further questions, please contact us at info@spinalpedia.com.

Guest Post: “The Party Never Stops”

By Antonia Sinibaldi, an Ambassador for SPINALpedia

If you are or know someone that is new to SPINALpedia or new to spinal cord injury, this article may answer some of your questions. One amazing thing that comes with having a spinal cord injury is nerve pain. For those of you who do not suffer from any type of neuropathy, you’re missing out on a huge party. And the party gets hotter depending on how severe your injury is. Not everybody can be invited. You have to be a VIP.

Here are it’s definitions:

Neuropathy is a disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.

Neuralgia is intense, typically intermittent pain along the course of a nerve, especially in the head or face.

Peripheral neuropathy is weakness, numbness, and pain from nerve damage, usually in the hands and feet.

I had my accident when I was 2 years old. All I’ve ever known is life with this injury. One thing I notice is that my nerve pain, which causes spasticity, gets worse the older I get. I am not just sensitive to touch, I am also very sensitive to vibration. Vibration bothers me when I am driving in my van more so than at a party or an outing. One way I can describe to you what it is like living with pain and sensitivity is, imagine your body feels like it has ants all over it and those ants have prickles like porcupines. The body is confused and the problem with spinal cord injuries are that the signals in the body are not properly working or being received.

Some people explain this nerve pain as stabbing. There is not just one symptom, or medication to this issue. There is not just one resolution to the problem either. It’s a plethora of options. Exercise is very important for people with spinal cord injury. Think about it this way, the body is trying to move but the signal is not allowing that to happen in the proper way. That’s why exercise is so important. The human body needs to move no matter what. Exercise for me is a double edged sword. When I exercise I spasm and when I don’t exercise I spasm. However spasming after exercising feels better than when I do not exercise. It feels good to move and stretch.

The signal from the nerve pain does not feel as bad after exercising. That is not just me, there are other people with spinal cord injury that have similar results with exercise. Aside from exercise, there are other ways to manage pain. Diet and medication are important for pain management too. There’s food that is good for the nervous system. Trust me, I’ve done my research. I know what I’m talking about. Over exerting the body can increase pain; nerve pain, spasticity, clonus, and rigidity.

I know that the thought of “I can’t do this anymore” comes to mind often when you have a spinal cord injury. No matter how long you have had the injury, it is nearly impossible not to have that thought sometimes. That’s why I am writing about it now. It is not easy to find writings from the patient’s point of view, it is usually the doctors documenting about spinal cord injury.

That is why SPINALpedia is fantastic! All the writings are from people with injuries or close caregivers. It is helpful to hear and read other people’s stories. It really does get better over time.

To read all about Antonia, plus our other Ambassadors, visit our Ambassador page