Tag Archives: antonia sinibaldi

Guest Blog: My Neurogenic Life

By Antonia Sinibaldi,
SPINALpedia Ambassador

In the last year, my life has changed tremendously. I finally discovered I’m part of a huge spinal cord injury community. Both in New York and New Jersey, as well as online. I thank Tiffiny and the rest of the SPINALpedia squad for letting me write. I’ve been paralyzed almost all my life and there are not that many pediatric-trach vent patients due to spinal cord injury. So far I’ve met three other people that have been paralyzed under the age of 10 that are either on a vent or once on a vent. One thing I wish someone informed us is what a neurogenic bladder is. I am sure that most people are aware, but if not, I’ll say it again and again. I might as well tattoo it to my body. Just joking! I am way too sensitive to get a tattoo.

My bladder started off as the first type of neurogenic bladder when it just empties. I did have control of it for the first 4 to 7 years. Not full control, but I could tell when I was leaking. Then, around twelve years old I got overactive bladder. I would get UTIs monthly. Now is not as frequent, but I still get them. I took so many cranberry capsules starting from the age of 13 to present, nothing worked. The urologist at the time stopped contacting us from a New York City hospital. Then I turned 16, and started going to Kessler. Now I have a neurogenic bladder that makes me need Botox every three months and for the last four years of my life I have a suprapubic catheter. We had to learn the hard way, and by “we” I mean my mom and I. My main caretaker and confidant.

My mom and I have a very close and unique relationship. If you guys read my book, I am also sensitive to caffeine, so I don’t drink coffee or soda, I drink certain teas specifically for the bladder and kidneys. All of this pain leads to severe depression. After 20 years it has become a lot of BLAH BLAH BLAH. I can’t believe my body keeps changing. For a while the depression with the help of God it has gotten better. I was on antidepressants and now I use CBD, but it is still not enough. I am falling back in my old ways, the depression came back because of the pain. The spasticity is as if it was when I was 9 and 10 years old. Most of my spasticity is cause by …. MY BLADDER! It is a disaster. I thank Spinalpedia for putting up with me, but I ask all of you readers is there anything I can do for neurogenic bladder.

I live in New Jersey and a specialist in my area keeps telling me that I am a very dangerous case. There is an obscene amount of information on the internet, yet it seems like nobody knows what to do with me. I am currently 22 and I keep getting bounced around from one doctor to another doctor like crazy. My life is not as bad as it feels. Readers count your blessings because we are all blessed in our own way. I complain all the time and I make mistakes all the time, but I am trying my hardest to understand what is going on with my body. Spinalpedia is accurate and most of the members who write whether is short or long writings, we know our bodies the most.

That’s why we need the spinal cord injury community to come together, to speak, to fight, to advocate, to study, etc, etc. There is more I want to say, but as for the future. Right now I need someone to tell me what to do for this neurogenic bladder. The autonomic dysreflexia is getting out of control, any updates??? And I am just curious whoever reads this if this happens to you? Has anyone spasmed for an hour? and if you had, how do you control it? Another question for my fellow vent-trach posse does the spasticity affect your breathing? That’s the reason why weaning has been difficult before the pacemaker and after the pacemaker. All the doctors look at me as if I am speaking a foreign language. These are just some of the issues that make the depression worse.

Only my mother and a few of my friends understand. God has been good to me and He has been good to all of us. Feel free to contact me on social media or through my work email which is listed on social media. I am a singer who is on a vent. I love singing and performing always have. Singing is what helps me heal and express, but I also always been a science geek and highly interested in science and the medical field. For which, one of my goals is to be a research doctor. I would love that someone to let me into research. Thank you guys for reading this, I hope I helped you as you are helping me.

My World of Music

Antonia Sinibaldi, SPINALpedia Ambassador

The first word that comes to mind about singing while on a ventilator is FRUSTRATION! It is frustrating because I have been paralyzed for most of my life. I’ve been singing since I was five years old but my voice has gone through constant changes. I think I finally understand my voice and what I need to do to sing properly and healthier.

In order to sing to the best of my ability, I need to adjust some of the settings on my ventilator, mainly the tidal volume and the pressure support. Sometimes I even need to use oxygen from the oxygen tank. I know what some of you are thinking, all this sounds like blah, blah, blah but sometimes it sounds like that to me too. Back to explaining, tidal volume is the force of air that goes into my lungs, my pressure support is how much work my ventilator is doing for me. When I increase the pressure support I can hold the notes longer. When I increase the tidal volume, I can belt better and it feels like there is less strain on my vocal cords.

Antonia performing her first solo last December.

Last summer I had a diaphragmatic pacemaker implanted surgically into my diaphragm.
Hopefully, this can help me one day get off this vent. I’m no where near coming off the vent
but singing with the diaphragmatic pacemaker with a certain ventilator mode used for weaning
makes singing a lot easier. I don’t have full use of my diaphragm but the pacemaker inside
stimulates the nerves so I can belt and hold the notes longer without having to adjust vent
settings. I’m in more control when I sing with the pacemaker and it feels so good. All of these
things is what I need to do to sing without straining my vocal cords.

I sing all the time to escape and express myself. I have done my research and I have met
doctors that have never seen a person sing on a ventilator. I feel very fortunate, happy and
blessed to be able to have the ability and gift of singing. Singing makes me feel FREE!