Parkinson’s caregivers need to understand how to help both their patients and themselves
Swingle is co-CEO, lead physical therapist and certified LSVT®BIG clinician of Livonia-based The Recovery Project.
For Parkinson’s patients, the care and support of a trained and trusted caregiver is an absolutely essential part of managing the disease and maintaining a strong quality of life. The vital role that Parkinson’s caregivers play in the lives of their loved ones makes it all the more important that those caregivers understand both the challenges in front of them, and the latest tips and techniques for helping Parkinson’s patients stay as healthy as possible for as long as possible.
Whether it’s a family member or friend, or a trained therapeutic professional, all caregivers need to educate themselves on established best practices and emerging research and recommendations for Parkinson’s patients. Exercise is increasingly understood to be a powerful tool in helping indi- viduals with Parkinson’s stay safe and mobile, while maintaining their quality of life. Consequently, caregivers should take particular care to stay informed and engaged with approved exercise recommendations specially designed for Parkinson’s patients.
For Parkinson’s patients, the benefits of moderate-to-high intensity exercise are significant—delaying or mitigating the symptoms of the disease and frequently leading to a dramatic increase in quality of life. As part of a comprehensive therapeutic program, exercise can improve function, fluidity and mobility, boosting not only cardio fitness, but potentially improving cognitive function and delaying or reducing the impact of dementia that eventually afflicts so many Parkinson’s patients.
When performed and maintained correctly, the right therapeutic exercise regime can make a significant
and meaningful difference in the lives of Parkinson’s patients. The right mix of medication and exercise can help people living with Parkinson’s to stand and move around more confidently and independently—as well as more easily perform daily tasks like dressing and feeding themselves.
Because exercise is so important, caregivers should make a point to:
If the patient is involved in therapy or an exercise program, the caregiver should attend several sessions with them.
Not only will this help them learn how to help the patient with exercises at home, it also helps with accountability: caregivers can encourage patients to complete their exercises and to make them a regular part of their routine.
Find the right program
The latest research shows that exercises aimed at improving coordination through rhythmic exercise and large “explosive” movements are especially beneficial for Parkinson’s patients. When identifying therapeutic exercise programs for a Parkinson’s patient under your care, look for those that go beyond cardio and strength training to also include those critical coordination and balancing components. Exercises like boxing and rowing—that demand fast, fluid and coordinated motions— are particularly promising.
One size most definitely does not fit all. Almost any exercise can be modified—and many exercise programs can be adapted—to address the individual circumstances and therapeutic needs of a patient. Perhaps your patient requires the extra support and stability of a chair or a cane to lean on when first starting out, or perhaps the number of repetitions can be reduced while the patient familiarizes themselves with a new routine. While flexibility is beneficial, it is even better to seek the professional guidance of a trained and trusted therapist with established experience designing exercise programs specifically for Parkinson’s patients. For caregivers, that counsel is an invaluable piece of the therapeutic puzzle.
What follows are specific strategies and recommendations for Parkinson’s caregivers that can help them provide a higher level of care for their patients:
Being a caregiver for someone that has Parkinson’s can be very challenging. This is a disease that progresses, and patients’ needs progress and evolve accordingly. Caregivers not only need to be supportive throughout that progression, they also need to understand the disease itself—and the right therapies and treatment for each stage of the disease.
While a caring and supportive mindset is a prerequisite for any Parkinson’s caregiver, there are a number of practical steps that all caregivers for Parkinson’s patients should keep in mind:
- Make a special point to attend all doctors’ appointments—both to get updates on the patient’s status and to better understand the progression of the disease.
- Do not just take care of the patient, take care of yourself. Get more help in the home if needed. If you do not take care of your own mental and physical health and wellness, you will not be able to provide the kind of attentive high-level care that is optimal for people with Parkinson’s.
- Evaluate the patient’s environment for health and safety hazards. Go room by room if necessary. For example, in the bathroom, a bath bench or shower stool (as well as a non-skid rubber mat) is a good choice, reducing the chances of a fall and making it easier for caregivers to assist with bathing and hygiene needs. Grab bars and elevated toilet seats are also a good idea, and all throw rugs should be removed. In the bed- room, make sure the bed is the right height, and consider utilizing a bedside commode to help reduce the risk of falling. Along those lines, night lights and/or a flashlight by the bedside make good sense, and a clock by the bed can help avoid disorientation for a groggy patient waking up in the middle of the night.
- Get support. It is tough to do this alone, and there are a large number of support groups for caregivers that can make your job as caregiver easier and/or more fulfilling. If you need help, there are several national organizations that can point you toward local and regional resources focused on the caregiving role.
These resources are an important source of both personal and practical support, helping caregivers navigate the emotional challenges of caring for a Parkinson’s patient while identifying programs and facilities in the area that can make their jobs—and their patient’s lives—a little less stressful and a little more fulfilling.
Polly Swingle is co-CEO and lead physical therapist of The Recovery Project. She possesses more than 20 years of physical therapy experience specializing in rehabilitative therapy for spinal cord injuries, traumatic brain injuries and neuromuscular disorders, including eight years at the Detroit Medical Center’s Rehabilitation Institute of Michigan. Swingle is a Project Walk Certified Trainer, a certified clinician in the practice of LSVT®BIG—therapy for individuals with Parkinson’s disease, a Certified Exercise Experts for Aging Adults (CEEAA) and a Geriatric Certified Specialist (GCS). She is also certified in neuro-developmental treatment, Burdenko therapy and Pilates. She earned her degree in physical therapy from Ohio University.