By Daniel J. Vance
The best information about disability often comes not from doctors or researchers, but from the people living in the trenches, fighting their daily battles, nursing their own wounds.
Jo Schultz, 71, a reader from Madison Lake, Minn., recently shared her struggle of caring for her husband with Parkinson's disease. Here are her words.
"When we'd go for a walk, my husband Bob couldn't swing his left arm naturally. He had to will it to swing. Then he noticed his balance was off and his sense of smell gone. Then his back hurt and his chiropractor told him to see a neurologist.
"One day in 1987, at 55, he came home from the doctor to say he had Parkinson's. I was surprised, and hadn't envisioned him having a disease. He'd been prepared for the diagnosis though, when on his job as a construction supervisor a friend saw his awkward gait and told him he thought Bob might have it.
"Bob worked two more years, but finally could no longer juggle the details of building gas stations. He knew he was slowing mentally, unraveling. His hands didn't work well, and he tired easily.
"Now at 71, he's in a nursing home. His movement is limited to one finger on his left hand, which means he can't walk or feed himself. Most people don't die of Parkinson's per se, they die of its side effects, such as pneumonia, inability to eat or constipation. Because most people are older when diagnosed, sometimes they die of heart disease or diabetes first.
"Being a member of a Parkinson's support group has helped me. I've known more than 75 people with it, and not everyone has the same symptoms.
"Families I know affected by the disease come to the same conclusion: Do the best with what you've got, and do what you want as long as you can. My further advice to people is don't try to hide it. Accept the fact you have Parkinson's disease and talk about it. That helps."
Thank you, Jo.
The National Parkinson Foundation defines Parkinson's as a slowly progressing, chronic neurological condition affecting brain cells, which leads to a reduction in dopamine, a brain chemical. This lack of dopamine produces symptoms such as limb stiffness, gait or balance problems, slowness of movement, and tremors on one side of the body. Perhaps 1.5 million Americans are affected.