Category Archives: Guest Posts

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

The Awkward Entourage

By SPINALpedia Ambassador Antonia Sinibaldi 

Imagine your life is reliant on a single machine that is reliant on a three prong outlet that is attached to an even bulkier power pack, sound good so far? Let’s dive in a bit here..take a moment, close your eyes and picture an unimaginably annoying machine that sounds like an awkward vacuum from the early 90’s, now open your eyes to this awkward long tube of life that is secured by an elastic band that feels like sand paper rubbing against my neck.

If the sand paper feeling rubbing up against your neck didn’t make the hair on your arms stand up, then as always, I like to save the best for last.

To top off the metaphorical cherry on the ice cream sundae, not only is the vent a hefty 30+ pounds but it has has two traveling companions, let me introduce them; thing 1 and thing 2 (queue the musical score from the original cinematic adventure Jaws). Thing 1, being the evil car size battery required to power the vent on the go and last but certainly not least thing 2, where most woman my age have a Louis Vuitton with them at all times, I have this magical cylindrical device known as an oxygen tank which is the perfect addition to every young woman’s entourage.

I am dependent on a ventilator 24 hours a day. Life is difficult for everybody, but being paralyzed from the neck down tends to make things a bit more difficult than usual. The difference between my life and most others is that people can breathe on their own. The ventilator helps me but it is not part of me. Everywhere I go it is on the back of my chair. Ever since I was a little girl I always felt somewhat out of place but with the help of God, he has given me a good life and provided me with purpose.

I have an amazing mother who is my world, my main caretaker, along with family members and nurses. All I have ever known is my injury; I love, I cry, I dance, I sing with my injury. It’s hard to imagine a life without it.

Yes, this vent travels everywhere with me wherever I go but I am not afraid of it and I never let it slow me down. I live life to the fullest. Even though there are moments where I am terrified to be away from “thing 1” a.k.a. the battery bag I never let fear dictate my actions, always pushing ahead. Along with thing 1 and thing 2, my metaphorical Louis Vuitton, I also have an Ambu, “the mascara” that I must keep with me at all times in the off chance that I start arching/spasming.

I can’t pull in the vent when I am spasming so I need the help of Ambu and an oxygen tank.Life is difficult but it is also a lot of fun. I may be on a vent but I sing and go out to see a lot of shows. Musical theater productions are my favorite. I also love going to concerts. No matter where I go and what I do, I know I always need to be careful but that I also have to continue pushing myself and pushing others around me. Regardless of my “condition” there is nothing that will stop me from being who I am.