Ned Church (Burlington, Vermont)
Ned Church takes downhill skiing to a new level. Click on Neds picture to See Ned downhill skiing to that Voodoo Child.
Laszlo Nagy (Cleveland, Ohio):
C3 quadriplegic as a result of a motorcycle accident in June 2002. "I was implanted with the NeuRx DPS™ System exactly one year later. Seven weeks after the surgery, I was ventilator free for 24 hours a day, seven days a week. Since then, I have never needed to use a ventilator, and I have been infection free. I have also developed the ability to breathe on my own for up to several hours, turning off the NeuRx DPS™ System. I use this as my 'backup,' although I keep an Ambu bag on my wheelchair. I am able to live in my own home. On August 12, I got married. The NeuRx DPS™ System allows me to travel and to leave my home virtually worry free. It has made my life much easier."
Tom Conlon (Cleveland, Ohio)
Clevelander Tom Conlon speaks about being on and off a ventilator.
Joel Vander Molen
I received my C2/3 SCI early in life, 24 years before hearing of the Synapse Diaphragm Pacemaker. After using a vent for over 25 years, completing grade school, high school, and college, I received my implant.
It has opened up a world of smelling sensations that I had hardly known before. Food has much more to experience than just the textures I knew before using my nose again. It has been less than five months since surgery and I’m up to 15 hours a day of pacing.
After a quarter century of just breathing out, this system is opening up a new world to me. Without having tubes on my chest and not hearing the constant noise from the ventilator, I feel much more like a person and less like a machine. I am looking forward to the changing seasons and smelling the new plants in spring and outdoor grills in summer.
My 26th anniversary of becoming a quadriplegic was spent mainly pacing, I guess an old quad can learn new tricks. I am looking forward to the coming months and years with new opportunities provided by Synapse.
Nicholas Essis (Harrisburg, Pennsylvania):
""On November 29, 2008, I was in a terrible car accident which left me paralyzed from the neck down and ventilator dependent. For almost a year, I struggled through rehabilitation and various respiratory infections. Finally, in September 2009, I had my Synapse diaphragmatic pacemaker implanted and my life was instantly changed. I found myself free to go out more without being attached to a ventilator. I can now travel with my loved ones without worrying about having to charge my ventilator's battery. I regained my ability to speak, which has allowed me to again share my thoughts and feelings. As for Synapse Biomedical, the competent and compassionate service that I have received from this company is exemplary. Any time that I have a question or a concern, one of Synapse's representatives is always readily available to assist me, even if that means driving to Harrisburg to meet with me. Thank you, Synapse, for giving me my life back."
Heather Johnson (Barnhart, Missouri)
I was excited when I found out that I was getting the diaphragm pacer, but I didn’t think it was going to change my life. I was wrong! It has given me back some of the peace of mind and confidence that I lost in my car accident. When I’m out in public, I feel that I look more normal without the ventilator hooked up to me, or hanging off the back of my wheelchair. I also used to fear popping off in public because of the attention that the loud ventilator alarm would attract. It’s so much easier to go out now, too, since we don’t have bulky ventilator batteries to carry along. The pacer has allowed me to do many things that I never thought I would be able to do again. I’ve taken several road trips, and have even started taking college classes again – things I wouldn’t have felt comfortable doing while I was on the ventilator. It’s true that the diaphragm pacer doesn’t change the fact that I’m paralyzed, but it really has enhanced my life.
Daniel Leblanc (Vancouver, Canada):
“The NeuRx DPS™ system has been the best thing that has happened to me since I got hurt. Being on a vent was like an insult to injury to me. Not being able to move and breathe. Things started to look up when I herd about the NeuRx DPS™. It took some work but eventually I was able to get the surgery. The first thing I noticed when they turned on the pacer was this big rush of air that I was sucking in. With that breath I could smell the coffee that was next to me. Seeing me breath normally brought tears of happiness to my family. Now that I’m on the pacer 24-7 things taste and smell normal. I’ve been really healthy (knock on wood). Getting around is so much easier with out that damn vent. I feel more social. I can talk clearly and louder, which sure helps when you’re in a crowd. The sense of freedom that it’s given me has made me do things that I wouldn’t have with the vent. Most of all I feel more ‘normal’ and I would recommend this to anyone.”
Samantha Rodzwicz (Pensacola, Florida):
“Although I dream of a cure for paralysis, as a C1 quadriplegic my miracles are increases in quality of life. I received the NeuRx DPS™ 11 months after my injury and have had it for 2 years. Some may say that it has been a failure because I only use the NeuRx DPS™ for about 16 hours a day. However, by my standards the technology has been a miracle. The pacer immediately eliminated the need for ambu bagging during transfers, suctioning, and ventilator malfunctions, enabling me to be cared for by one person instead of the previous necessity of two sets of hands. I primarily use the NeuRx DPS™ while in bed. With the reprieve from the hum of the ventilator and tubes pulling at my throat I am now able to sleep throughout the night. Finally, since I began using the NeuRx DPS™ I have not had any cases of pneumonia. The pacer plays such a vital role in my respiratory health that there is a noticeable difference in my secretions if for some reason I am unable to pace for as little as 24 hours. The NeuRx DPS™ has done more than change the way I breath it has changed my life.”
Tom Davis (Pensacola, Florida):
C1/C2 quadriplegic had the NeuRx DPS™ System procedure in May 2004. One month later he was completely “freed from the ventilator” and remains so. “The NeuRx DPS™ System has revolutionized my lifestyle. I no longer have to lug around that heavy ventilator on the back of my chair. Instead, I have a small box that is tucked in the waistband of my pants. Without the ventilator, the length of my wheelchair has been shortened by nearly two feet and has given me much more maneuverability in tight spaces. When they turned the pacer on for the first time, I could smell everything in the room. This of course has made food taste much better, which has caused me to gain a little weight. The procedure has cut in half the amount of times I need suctioning. Also, I no longer have those long pauses between breaths from the ventilator. When people talk to me on the phone, they have no idea that I use an assisted breathing device. I love it!”
Adam Booker (Ridgeland, Mississippi):
“The Pacer has changed my life tremendously. It gives me the freedom to move around easier and to transfer easier. It is easier on my step mom (my caretaker) especially when getting me dressed. I don’t feel like I have the worry of the vent popping off. It also gives me a better appearance because I don’t have the vent on the back of the chair with all the tubes running everywhere. This definitely gives me more confidence. It also reduces my risk of getting the upper respiratory problems that come along with the vent, since the pacer is more natural. I haven’t had a single problem with the pacer and it has for sure given me a better quality of life. My goal now is to wean off the Pacer!”
Douglas and Lynn Wheeler
My wife was about 60 years old when she was involved in a catastrophic automobile wreck. She was paralyzed from the neck down (C1/C2) injury. She was on a ventilator for about four years when she was implanted with a Synapse diaphragmatic pacing system (DPS). In a few months, she was able to pace (instead of using the ventilator) almost 24/7. She usually goes on the ventilator to eat, but otherwise is on the pacer the rest of the day and all night. I can't tell you how this has improved the quality of life for my wife and for me and the rest of the caregivers.
She has less secretions and does not have to use the cough machine as much. She sleeps much more soundly and peacefully during the night (which means so do I). When she is pacing, it is so much quieter-even the laptop vent produces so much sound that it is harder for people to communicate with her!
She is more relaxed about her health when on the pacer. She does not have to worry about the tubing circuit (of the ventilator) popping off and cutting off her air supply. Caregivers can be a little further away from her thus giving her more privacy and independence when she is on the DPS. Also, transfers from chair to bed and bed to chair are so much easier as there is no circuit to limit how far you can move the hoyer from the bed or chair: the wiring and pacer go with my wife.
In short the DPS is a GREAT improvement to the quality of life for my wife, for me, and for all the caregivers. If you are ventilator dependent (like my wife was 24/7) I hope you will talk with your doctor about the possibility of getting the DPS system for you. The surgery is outpatient, and the system is easy to use. The only controls on this device are on and off. Obviously, the DPS has to be adjusted for each individual patient by technicians, but the caregivers only turn it on or turn it off (when using a ventilator).
Diane Johnson (Mother of Heather Johnson)
I was excited for Heather to get the diaphragm pacer because I thought it would improve the quality of her life. I didn’t realize what a blessing it would be for me, the care giver. Dressing, bathing, and transfers are so much easier without the ventilator tubing. I can even do transfers myself if I have to. Going out into the community with Heather is easier now, too. I do not have to pack and carry several large batteries for the vent, or keep an eye on how much power is left in the battery so as to avoid the vent alarming in public. Because getting out is easier than it was on the vent, Heather and I go out more often, stay out longer, and enjoy it more. We even started taking road trips to visit family again–something I had missed terribly. In addition to feeling a little more free now, with Heather on the pacer, I am also more relaxed. I always worried about Heather popping off the vent if I ran out to get the mail, took a shower, vacuumed, or slept. That is not a concern anymore. I am able to sleep more deeply, not only because popping off is not a worry, but because the pacer is so much quieter than the ventilator. So I am better rested and feel better. Because caring for Heather is easier, because we get out of the home more often, and because my life is less stressed, the diaphragm pacer has improved the quality of my life as well as Heather’s.
Receipient of the Synapse NeuRx Pacer at UT Southwestern, Dallas Franco Miramontes Age: 26
“The NeuRx Pacer is a blessing for my son Franco. Having had the device implanted only in May 2010, he is now up to 6 hours without having to be on his ventilator, which he has been using 24/7 for approximately 3 years. We can hear him talk and he smiles more. At 26 years of age, it becomes unbearable to see my son in this condition, since his motorcycle accident Oct. 2007 that has left him a quadriplegic and living on a ventilator. I praise his doctors, Dr. John DeMaio & Dr.Jose Viroslav at UT Southwestern-St. Paul Hospital in Dallas for recommending Franco to get the pacer. Our goal is to get Franco to use his pacer at least 12 hours a day so that we can move him more often while not pulling on his trach tubes. We pray that with this new pacer he will not need the vent too much longer. He is much happier these days. Thank god for Synapse and the wonderful capability you have given my son. I put my trust in Synapse, I’m glad I did.” Rosemary Miramontes