Rehab Insights is a weekly blog written by Burke Rehabilitation professionals to offer practical information for patients, families and the community. Its goal is to educate the reader on relevant topics in rehabilitation, general health and wellness.

What Caregivers Need to Know About Parkinson's Disease

Every year, about 50,000 people find out they have Parkinson’s disease, according to the National Institutes of Health—and since April is Parkinson’s Disease Awareness month, it’s a great time to take a closer look at how Burke cares for patients with the condition and what caregivers can do to help their loved ones.

Burke offers innovative treatment for patients with Parkinson’s disease (PD), including traditional physical and speech therapy, as well as intensive, specialized programs, such as the Lee Silverman Voice Technique (LSVT) programs, LSVT-LOUD and LSVT-BIG. Plus, there are free support groups—like the Young Onset Parkinson’s Group—as well as post-therapy resources available, such as joining the Burke Fitness Center.   

Along with caring for the patient, Burke also recognizes the importance of caring for the patients’ caregivers as well. “Being a caregiver for someone with Parkinson’s Disease can feel daunting and frustrating at times, but they are vital to any patient’s rehabilitation experience and quality of life at home,” says Ben Gilbert, PT, MS, OCS, MBA, Cert. MDT, Director of Outpatient Rehabilitation at Burke. “All caregivers should know they are not alone and there are wonderful resources that they can take advantage of—at Burke and beyond.”

As a caregiver, here are some things to keep in mind:

Promote physical activity: “Caregivers can encourage their loved ones to remain active and participate in the exercise programs prescribed by their therapists,” says Danielle DiCarlo, PT, DPT, a senior level therapist at Burke. A great way to encourage this is to get in on the action—try things like going on walks together or doing the prescribed exercises with your loved one, recommends DiCarlo.

Offer encouragement: While dealing with PD can be tough on everyone involved, maintaining a positive attitude, particularly when the patient experiences new or different aspects of the condition, is important. “It is helpful for a caregiver to provide positive reinforcement, and encourage their loved ones not to panic or become frustrated when experiencing freezing episodes—when they cannot move their limbs to continue the task at hand,” says DiCarlo.  

Foster independence: As a caregiver, it can be hard—and heartbreaking, says DiCarlo —to see your loved one take longer than usual to do everyday tasks, but it’s important to hang back and not jump in and help at every turn. “When patients become reliant on caregivers for more than what is necessary, they may develop more frustration and feelings of self-doubt when requiring help for smaller tasks that they used to perform naturally,” says DiCarlo. “Although it is challenging, caregivers should try to promote as much independence for their loved ones as possible, even if it means allotting extra time to get to a location or perform a certain task.”

Observe changes. Patients with PD will have regular appointments with their neurologist and therapists, as needed—and caregivers can help by noting any physical or emotional changes they may see, says DiCarlo. Also a good idea: “Keeping an organized past medical history list, as well as lists of current medications is helpful when seeking consults both in healthcare and even recreationally,” she says.

Be there for yourself, too. This golden rule of caregiving applies to caregivers of Parkinson’s disease patients, too. You can be susceptible to caregiver burnout and it’s vital to take care of yourself. “Be sure to make time for yourself, keep your own doctors’ appointments, and remain physically active,” says DiCarlo.

In an effort to give all caregivers the support and resources they need to succeed, Burke will open the Marsal Caregiver Center later this year. It will be the first on-site caregiver center at a rehabilitation hospital in the United States. Stay tuned for more information.

Learn more about Burke’s neurological rehabilitation program, as well as how you or your loved one can participate in support groups and join the Burke Fitness Center.

--Marisa Iallonardo

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Burke's Rehab Insights blog is intended to provide general information about rehabilitation and other health care topics. It should not take the place of medical care. Burke staff cannot comment on individual medical cases or give medical advice.

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