Caregiving and Parkinson’s Disease
Beth Jacobs was diagnosed with Parkinson’s disease more than 10 years ago. Today, she’s still active and enjoying life while managing the symptoms. She credits her medications, regular exercise, and most importantly, the encouragement of her support group and her care partner, her husband.
“He’s my emotional support,” she said.
If you’re the care partner for a person with Parkinson’s, you have a critical role to play. Your support and encouragement can help your loved one stay as healthy and functional as possible.
Understand Parkinson’s Disease
Parkinson’s disease is a progressive disease of the nervous system that usually affects older people. (The average age at diagnosis is 60.) Symptoms may include uncontrollable shaking or tremors, stiffness in the limbs, lack of coordination, balance difficulties, slowed movement and speaking difficulties.
With early diagnosis, the right medication and regular exercise, the progression of Parkinson’s can often be slowed. That’s why an informed care partner is so critical.
So, how can you equip yourself to become the best care partner possible?
Get Educated
Begin by learning everything you can about the disease. That will help you to make informed decisions together and to advocate for your loved one.
Consider accompanying your loved one to doctor’s appointments. Even if they’re capable of getting to and from the office alone, you can serve as a second set of ears – taking notes, asking questions and sharing your own concerns.
Keep a running list of questions to ask the doctor at your loved one’s next appointment. If you notice changes in the person’s symptoms, abilities or moods, make a note and share what you’ve observed with the doctor.
Remember that Parkinson’s is a complex disease. What works for one patient may not work for another. One person’s disease may progress slowly; another may progress more quickly. Having listened to fellow patients in her support group, Jacobs says, “If you have a hundred people with Parkinson’s, you’re going to have a hundred different sets of symptoms presenting themselves.”
Get Resources
Finding reliable, accurate information and helpful resources is essential. One great local source: the Dallas Area Parkinson’s Society (DAPS), which has supported families affected by Parkinson’s since 1978.
“We are a nonprofit providing free services to the entire Dallas area,” said Leisha Phipps, program director of DAPS. “What we do best is improving the lives of people impacted by Parkinson’s disease.”
DAPS offers exercise classes (including non-contact boxing classes), speech classes and support groups at its locations in McKinney, Plano, Duncanville, Garland, and at several locations in Dallas. Many programs are also available online via Zoom.
DAPS also offers resources for “care partners” – anyone who supports a person living with Parkinson’s: a spouse, an adult child, neighbor or friend.
“We offer several support groups specifically for care partners, to help them learn coping skills, to be able to adjust and communicate well with their loved ones, so they can be as helpful as possible,” she said.
Get Moving
Jacobs notices the difference exercise makes, especially at times when she skipped her workouts – for example, after surgery.
“It seemed like my Parkinson’s symptoms kicked in a lot worse,” she said. “I’m convinced exercise is better than any medicine you can take, because it has really helped me.”
Research shows that exercise boosts the brain’s efficiency in using dopamine, a chemical involvement in movement. Fitness also maintains and improves strength, flexibility, balance, memory – all of which allow people with Parkinson’s to stay as active and functional as possible.
Jacobs especially appreciates her husband’s reminders and encouragement to exercise regularly.
It’s also critical for Parkinson’s patients to take their medications regularly and on schedule. That’s not a big problem for Jacobs – she’s a retired pharmacist – but for many care partners, a key priority is reminding a loved one to take medications as needed.
Stay Patient and Positive
Cultivating patience and flexibility are a big part of effective caregiving. Getting in and out of the car, for example, can take a long time for a person living Parkinson’s. Symptoms may flare up one day and subside the next. Try to stay flexible with any plans you’ve made.
Care partners should remember to be patient with themselves, too.
Learning to care for a person with Parkinson’s takes time. Your role may change as the disease progresses. Ask for help if you need it. Talk with your doctor if you’re feeling overwhelmed or experiencing intense feelings of frustration. It’s important to stay healthy, mentally and physically, to maintain that patience and positivity.
Jacobs says the encouragement of her husband and her support group has helped her to live well with Parkinson’s.
“Negativity can be paralyzing,” she said. “So many people fear a diagnosis like Parkinson’s. The best thing your friends and care partner can do is to stay positive and encouraging.”
Learn more about coping with Parkinson’s in Brian Levy’s interview with Beth Jacobs and Leisha Phipps in Episode 14 of the Manchester Living podcast. Listen to the episode here at www.ManchesterLivingPodcast.com.
