According to a National Institutes of Health website, a person with Parkinsons Plus syndrome has all the symptoms of Parkinsons disease and additional “widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.”
Paul Chambers of Marathon, Ohio, began having his first Parkinsons Plus symptoms in his mid-30s. He reads this column in the Georgetown (Oh.) News Democrat.
“(Parkinsons Plus) affects the things your body does naturally on its own,” said 41-year-old Chambers. “With me today it affects my breathing, heat tolerance, balance, blood pressure and pulse, my ability to walk and control muscles, eating, and swallowing.”
At first, he wasn’t affected that much and continued working full-time while attending college. But doctors became deeply concerned when his blood pressure and pulse began having wild swings. In time, a neurologist diagnosed Parkinsons Plus. It is rare a person his age gets it.
“From 2008-12, I kept getting aspiration pneumonia,” he said. “Food I ate kept going into my lungs, which is a leading cause of death for people with Parkinsons Plus. In 2011, I was in a hospital intensive care unit four times because of aspiration pneumonia or due to my blood pressure and pulse falling (rapidly).”
In 2011 through April 2012, he lost 70 pounds from being unable to eat well due to choking. He was suffering from malnutrition. A neurologist said Chambers had to choose between death or having a feeding tube installed. After learning about feeding tubes from a speech therapist, he agreed to the operation. He had always thought feeding tubes were for dying people only.
“But I learned about kids with feeding tubes that live full lives,” he said. “People that have strokes, burn victims who can’t swallow, and people that have had car wrecks get feeding tubes. It was the best decision I could have made. I now have the ability to do so much more. I get my nutrition. It saved my life.”
Chambers defined his feeding tube as”a tiny catheter that goes into your stomach, your liquid food goes into it, and you get nutrition you can’t get any other way.”
Chambers has been raising awareness to take some of the stigma away for people using feeding tubes. In part, he has a Youtube video (search “Paul Chambers peg”) showing how he feeds himself.