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'For better or for worse'

Good organization skills and a healthy mindset help Chuck Niggley provide care for his wife, who has Parkinsons disease


Before he retired, Chuck Niggley managed part of a NASA super computer facility in California where his responsibilities included ensuring that the air conditioning never stopped working.

“Fifteen minutes without air conditioning and we'd start to melt $150 million worth of computer gear,” he said.

by: MERRY MACKINNON - Chuck Niggley runs the Male Caregiver Parkinsons Support Group, to which about a dozen men from the Portland area belong.

Now 73 and living in Beaverton, Niggley draws on his management skills to look after something even more precious — his wife Patsy.

For the past 28 years — nearly half their married life — Patsy has had Parkinson's disease, a disorder that causes degeneration of the central nervous system.

“When I married her 52 years ago, it was for better or for worse,” he said.

But thanks to Niggley's care-giving over the years, his wife has had a quality of life she would not likely have experienced in a facility. She's been fed a special diet, taken on trips and watched over to make sure, for instance, that the water she drinks is thickened so she doesn't choke and that her shoes are on her feet, even in bed so she won't slip and fall if she decides to get up.

What causes Parkinson's is not clear, but Niggley and his three grown children, one of whom is a doctor, speculate that after his wife was riding in a car that was rear-ended, the trauma of the accident triggered the disease.

“At first her symptoms weren't that bad,” Niggley recalled. “She lost her sense of smell, her toes started to curl up and her handwriting kept getting smaller and smaller.”

In time, Patsy was prescribed 20 pills a day. Then she had a deep brain stimulator implanted at Stanford Hospital.

By compensating for the loss of dopamine-generating cells destroyed by the disease, the electronic brain stimulator has made a big difference in his wife's activities, Niggley said. The device can be switched on and off. A couple of months ago when it was turned off accidentally, the consequences were dramatic.

“I lifted her out of the bed and into the wheelchair and she had no ability to move,” Niggley recalled. “I turned on the stimulator and in about five minutes she could move her legs and stand up.”

The procedure has worked so well, his wife now takes just four pills a day. Nevertheless, what makes Parkinson's such a difficult disease to manage is its seemingly inevitable progression, and that means an increasing need for care-giving.

“For awhile she could track her own pill taking. But you soon realize you've got to take over the pill routine,” Niggley said.

by: CHUCK NIGGLEY - Ever since Niggleys wife, Patsy, was diagnosed with Parkinsons disease 28 years ago, he has been her main caregiver. Despite her frequent need for a wheelchair and a walker, he often takes her on trips to keep her active and stimulated. Here they are in Switzerland.

With his years of care-giving knowledge and patience, it's no surprise that Niggley is called on to give presentations about male care-giving. He also runs a caregiver support group for men whose spouses have Parkinson's disease.

The men, who range in age from 55 to 92, share advice, attend educational conferences and provide each other with emotional support. On Valentine's Day, together they arranged for a special celebration and took their wives to a wheelchair-accessible restaurant.

Parkinson's is a disease that involves the whole family, and family caregivers need to learn to take care of themselves “first and foremost,” said Niggley, who has his own health issues, having undergone triple-bypass heart surgery in 2011.

“Step away from it every once in awhile,” he advised. “Find an outlet for yourself. And the key — don't be afraid to ask for help.”

Learn more

* For information on the Male Caregiver Parkinson's Support Group, call Chuck Niggley at 408-373-9875. The group generally meets once a month, usually in Tigard, and free respite for spouses is offered.

* A range of services is also available through Parkinson's Resources of Oregon (www.ParkinsonsResources.org) at 503-594-0901 or 1-800-426-6806.