Paul Chambers, 41, was diagnosed with Parkinson’s plus syndrome in June 2012, which over time has affected his speech and his ability to swallow. For Paul his troubles with swallowing began in mid-2011 when he started getting aspiration pneumonia, which happens when food and liquid make their way into the lungs rather than down the esophagus and into the stomach. A barium swallow test (a medical imaging procedure used to examine the upper gastrointestinal tract) revealed that Paul had been experiencing some swallowing difficulties. In an attempt to alleviate these symptoms, Paul began to work with a speech therapist to strengthen his throat muscles.
By late February 2012, the tricks and tools Paul had learned in speech therapy no longer worked. Paul’s hiatal bone reflexes and gag reflexes were completely gone and every time Paul swallowed he couldn’t be sure food and liquids, including saliva, would not get into his lungs. A new modified barium test showed that his swallowing was significantly worse. “At this time, the doctors wanted to take measures early on with a nasogastric (NG) tube or even a percutaneous endoscopic gastrostomy (PEG) tube, but I refused because I assumed the feeding tube was merely a bandage to prevent a quicker death,” said Paul.
By mid-March Paul’s ability to eat or drink anything safely was completely gone and as a result he lost more than 40 pounds within two months. Due to his rapid weight-loss, his speech therapist called his family doctor who after consulting with a surgeon, recommended Paul be placed on a PEG tube. It was during this time that Paul learned about life with a feeding tube from the Oley Foundation website and finally consented to a feeding tube.
While the PEG tube provided a permanent feeding solution, the tube was quite long and Paul found it to be very uncomfortable and cumbersome. On two separate occasions while Paul was out shopping, he was stopped and suspected of shoplifting because it looked like something was hidden under his shirt.
Seeking an Alternative Solution
After three months with the PEG tube, Paul began researching other types of feeding tubes. He joined the Oley Foundation’s Inspire.org group and began to post regularly and interact with new patients and veteran tube feeders. It was through this group that he discovered the MIC-KEY* Low-Profile Gastrostomy Feeding Tube. Paul liked that it wasn’t a long and bulky tube, and as he read stories from other patients with the MIC-KEY* tube, he liked that the tube was small and easily hidden under clothing, enabling patients to remain active.
Excited to try the MIC-KEY* tube, Paul consulted with Dr. K Ganesh Kakarlapudi of Cincinnati GI, who agreed it was a better solution for Paul’s feeding needs.
Quality of Life Restored
After a week of getting used to his new tube, Paul came to love the MIC-KEY* feeding tube. “I was able to sleep without a shirt on and I didn’t have to worry about accidently ripping out my tube as I slept,” he said. Today Paul relies on his MIC-KEY* tube for all nourishment, hydration and medications. He finds the tube easy to clean and thinks that it is more sanitary than other tubes on the market. When Paul isn’t playing his banjo, or painting he can be found helping people who have been denied Social Security Disability navigate the appeals process, as well as exploring new ways to make socializing easier for people who are tube fed. “My MIC-KEY* (tube) provided me with a sense of privacy and more freedom,” Paul notes. ”Don’t get me wrong, I still miss a cheeseburger, I still miss eating, but all of my fears and worrying about having a feeding tube were a result of me being uneducated. Feeding tubes aren’t for the dying, they’re for the living.”