Improving mood key for quality of life with Parkinson's
Moods, not motions, may be the biggest challenge for patients with Parkinson's disease.
An ongoing study of more than 6,000 Parkinson’s patients in four countries has found that anxiety, depression and negativity had the greatest impact on health of all symptoms tested.
The study, conducted by the National Parkinson Foundation, also tested for pain, speech, and motor difficulties.
“Depression is common in Parkinson’s disease,” said Dr. Tanya Simuni, neurology professor at Northwestern Memorial Hospital. Northwestern is one of the hospitals participating in the study. “It is not an individual weakness.”
The study, taking place in the United States, Canada, Israel and the Netherlands, evaluates Parkinson’s patients using a PDQ-39, a 39-question scale that covers eight measures of quality of life, including motor and mood status. The test is the most widely used Parkinson’s specific measure of health status.
As many as 1 million Americans currently live with Parkinson’s disease, with the number expected to double by 2040 as the population ages.
“It is a chronic disease and people have to learn to live well with it,” she said.
A holistic approach is the best way to increase quality of life, experts advise.
Get involved with your own treatment.
“The first thing is that patients should report if they have any problem with their mood or memory, even if providers aren’t asking anything about this,” said Dr. Zoltan Mari, director of the National Parkinson Foundation Center of Excellence at The Johns Hopkins Hospital.
“They think whatever is important for their care the doctor will ask, that sort of mentality can lead to unsatisfactory attention to these issues,” he said.
“You have to educate yourself,” said Shameem Ahmed, a Parkinson’s patient living in Barrington. “You need to actually learn about the disease and then you can control it yourself. It’s your body.”
“You always handle anything better if you know the extent about it,” said Mari.
Exercise. Exercise. Exercise.
Parkinson’s patients who exercised more frequently reported better mobility, lower caretaker burden and a higher quality of life. They also reported lower levels of depression.
Daniel Corcos, director of the Neural Control of Movement Laboratory at the University of Illinois at Chicago, said that exercise should fall into three parts: cardio, strength training and stretching.
Corcos said there are aerobic exercises for every stage of Parkinson’s, including stationary cycling, treadmill walking, elliptical machines, and swimming.
He said lifting weights slows a decline in strength and can be beneficial to brain, muscle and bone activity.
“You don’t get quite the same results from just aerobic exercises,” he said.
Simuni, also director of the Parkinson’s disease and Movement Disorders Center, said tai chi has been shown to restore balance. She said yoga and pilates may also help with muscle flexibility and mental health.
Corcos said it is important for each patient to find a routine that is workable and thus repeatable.
Ahmed said her daily routine includes weights at the YMCA for 15-20 minutes plus as 45 minutes of stretches to work her limbs out. She said she alternates days between yoga and treadmill walking for cardio.
Take your medication.
Because of the variance among Parkinson’s cases, suggested medications differ from patient to patient and neurologist to neurologist.
The most common Parkinson’s medication is carbidopa/levodopa, which helps restore dopamine in the brain. Dopamine is a brain transmitter that affects movement, cognition, pleasure and motivation. It treats both mood and motion.
Ahmed said since being prescribed medication the difference has been night and day.
“I have not missed one dose of my medicine,” she said. “Take your medicine regularly and do not skip a dosage.”
Keep up the daily routine.
“My rule of thumb is that doing something and being active mentally or physically is better than doing nothing,” said Mari.
“If you are active, you are going to be far better off 10 years from now than if you are inactive,” he said.
Simuni suggested patients explore creative works that appeal to them such as painting, poetry and singing. She said singing helps Parkinson’s patients improve strength in their voice.
Beyond hobbies, Ahmed said people with Parkinson’s need to push themselves more on daily tasks such as putting away plates, avoiding assistance whenever possible.
“It’s absolutely a fact for Parkinson’s patients that if you don’t use it you lose it,” she said.
Don’t go it alone.
“It is unlikely that any one physician, no matter how dedicated they may be, can address multifaceted, complex problems like these,” said Mari.
He said evaluations have shown neurologist care benefits Parkinson’s patients. Physical therapists and psychologists, among others, also are helpful.
If patient can’t access those specialists, there are still support groups that he said are very helpful.
“It was a great help, just seeing other people that have the same issues that you do,” said Ahmed. “If you lock yourself in and isolate yourself, that’s when you’re going to be in big trouble.”
“When you can talk to someone, that helps a lot.”