Augie Nieto (Corona del Mar, California)
I am not using a vent because of your device! -October 2009
Getting this device was one of the best decisions I've made since my diagnosis,..It helped me delay the need for a tracheostomy for more than six years after my diagnosis. -Oct 28 2011
Pat & Jenny Dwyer,
MDA/ALS NEWMAGAZINE VOL 17, NO 1 INTERVIEW WITH PAT DWYER.
A CLOSER LOOK: DIAPHRAGM PACING SYSTEM
BY AMY LABBE ON TUE, 2012-01-03 09:49
As a caregiver to my husband Pat, anything that helps make living with ALS easier is huge. The diaphragm pacer has allowed Pat to sleep in his bed, instead of the recliner chair. During the day, when Pat “paces”, he feels like it rejuvenates him, helps him to get a deeper breath, and gives him more daytime energy. Since Pat has had his pacer implanted, I feel like we have been given a major boost to Pat's quality of life.
Phil Carlo (author of "The Iceman")
When you have ALS you get headaches in your sleep. That happens because of a buildup of carbon dioxide. Every morning I woke up with a headache. Every morning I had to take aspirins. After I got the pacer that stopped. I never get headaches any more. I attribute that to the pacer.
Julia Bauer (Grand Rapids, Michigan)
Julia Bauer, a former business reporter for The Grand Rapids Press, has written about her experience as she battles ALS, also known as Lou Gehrig's disease. Here, she talks about being the first in West Michigan to get a diaphragm pacer, a new device designed to help her lungs breathe better.
Read the whole story
Robert Skelton (Myrtle Beach, South Carolina)
After receiving the dreaded news of my illness, I was told that I had three to five years to live, there was nothing I could do about it, and I should just go home. While I was in hospital for a week, the doctors thought my breathing problems were associated with my heart and decided to do a cardiac cath. During the procedure the Cardiologist asked the Radiologist to place the x-ray machine over my lungs and then asked me to breathe in and out. I over heard , "His diaphragm is hardly opening". For five months after being diagnosed we tried alternative medicine, I lost 50lbs, and in the early hours of the morning on December 6th, I was rushed to the hospital, as I could hardly breath. I was given a bi-pap and two days later went home as the Doctors forecasted, "you're going to die." Our daughter immediately went online and started researching everything about diaphragms. She came across Dr Onders website and immediately made contact with him. I was accepted into the FDA Diaphragm Pacer Study and on March 5th, 2007, I became the 16th ALS patient to have a Diaphragm Pacer. The operation is simple, and it has been the best thing that could have ever happened to me. This has completely changed my life and has already given me 18 months more than the predicted "2 days." This has given me a second chance and I intend to be around a lot longer. My ALS Doctors are quite amazed by my recovery. Today, I am full time in a wheelchair, I am unable to walk or use my hands, but I can breathe and live a quality normal life.