As a progressive disease, Parkinson’s Disease (PD) currently affects thousands of Albertans. PD is a neurodegenerative disorder that affects motor and non-motor functions due to a lack of dopamine in the brain.
Each person with PD is unique and experiences different symptoms, including recognizable tremors, rigidity and slowness of movement, much like being frozen in time. With no cure in sight, the management of symptoms becomes the focus for PD patients.
For Lou Piening, a long-time Lacombe resident, whose wife Joan was diagnosed with PD in the early 2000s, he has noted there are many aspects to the disease.
“No two people have exactly the same symptoms,” he said. “When we first noticed things were different, we went to the doctor and he sort of noticed the symptoms and said, ‘You know, I think you have Parkinson’s.”
After a swift visit to a neurologist in Red Deer, it was determined Joan did have PD.
“That made us re-examine life in a new light,” said Lou. “We had a disease we weren’t counting on.
“All of these diseases start modestly and very humbly and life sort of continues for a while in a normal way, but gradually the disease creeps in and is more severe. Then you start to notice limitations coming like walking, doing everyday chores. All of these things start to creep in.”
As her husband, Lou became Joan’s caregiver, a role he said was common sense.
“It came naturally,” he said. “We all have an inborn instinct to protect and help those that we are associated with or fond of. That’s part of our human being.”
At first, Lou and Joan were able to live their lives quite normally, still making their regular trips to Singapore and doing other volunteer work around the world.
“Over time the disease gets more severe and you need more help,” he explained.
“She started to need help with bathing, or help with dressing, you know the common day things. Walking becomes more difficult.”
Lou said that around 2008, Joan began to experience some memory problems and deteriorating cognitive abilities. “Then it got to a point where I wasn’t able to do all the things that really needed to be done,” he said.
A homecare aid began coming into their home to help Lou care for his wife during the daily routine.
“That went on for a while,” he said. “The lack of cognitive skills became more and more abundant and she would just walk out, not realizing she was going anywhere.”
Eventually, with the help of his three children, Lou made the tough decision to place his wife in a long-term care facility.
“These decisions are never easy, but if you have family support in making these decisions that makes it more easily acceptable.”
While in the long-term care facility, Lou was sure to visit Joan three times a day, and to take her out for lunch or for frequent drives to Red Deer.
“We had a relatively good life within the limits of what she could do,” he said. “I learned a lot about care giving through this period of time. Sort of learning how to deal with the dementia that accompanies it.”
He said the most difficult adjustment to deal with — other than the use of walkers and wheelchairs, medications and the move into the long-term care facility — was the dementia and the accompanying personality change.
“As a caregiver, personality changes, dementias and Alzheimer’s is probably the most difficult thing to accommodate or get used to,” he said. “The physical needs can be adjusted to.”
Lou said the main thing he learned as a caregiver is to look after himself first and foremost. “You are providing care for your patient or significant other and you want to be at the best of your ability to do this,” he said. “You want to have enough sleep, ensure that you are eating well, that you are rested and mentally capable of doing that.”
As caregivers, many may become burned out, but Lou encourages them to, “Look after yourself first.”
Even though his wife passed away two years ago, Lou still attends the Lacombe-based support group once a month.
He said the benefit of attending the group is immeasurable, especially when attendees discuss amongst one another about how they deal with problems that arise.
“I think the support group does a marvelous job in that,” said Lou. “It’s a very useful exchange with fellow members who are doing the same thing you are, dealing with the same problems you are.
“There is always someone with ideas and they don’t come from doctors or anyone else. They are just generated within the community of PD patients or caregivers.”
Parkinson Alberta provides support services, education, advocacy and funds for research, for Albertans with PD and their caregivers. They are a stand-alone Alberta-based charity and 100% of the money raised stays in Alberta.
They have six support groups in the Central Alberta Region for caregivers and those with PD. They provide services through brochures, information sheets, speaker series and workshops. An education day will be held on April 15th and the annual HOPE Conference will be held on May 23rd.
Parkinson Alberta also has a free tele-support group available to all Albertans along with a PD Helpline.
The PD Helpline offers a timely and personal response service to improve access to medical information and supports for everyday living.
For more information, visit http://www.parkinsonalberta.ca. For inquiries on programming, contact 403-346-4463.