CARE PARTNERS

SUPPORT MADE JUST FOR YOU—
THE CARE PARTNER

Life as a Parkinson’s disease (PD) care partner

As the care partner of someone with PD, you may feel a lot of emotions, including feeling exhausted, lonely, or isolated. This is completely normal. After all, PD does not affect people the same way and caring for someone can feel even more challenging.

Helping you understand and navigate all the uncertainty and unpredictability of PD is what we’re here to do.

Below, you'll find perspectives from real PD care partners, advice, tips, and resources we hope you'll find useful.

Because care partners need care, too

While caring for someone with PD can feel like a full-time job, there’s also your own well-being to think about.

Yes, monitoring your loved one’s health is important, but your own physical, social, financial, and emotional health is important, too. When you spend your time being someone else’s voice, it’s easy to forget what yours sounds like.

Tip: Taking care of yourself is important for both you and your loved ones.

Below are things you can do to help take care of yourself:

Join an online or
local support group

Engage in physical activity,
like jogging or yoga

Eat healthy

Meditate

Take some time for yourself

Plan a date or activity with friends

Ask for help when
you need it

Below are some great resources for care partners, designed to help you take care of yourself

American Parkinson Disease Association

This site provides the support, education, and research that will help everyone impacted by Parkinson’s disease live life to the fullest. Find resources and a chapter in your community.

Becoming a Care Partner

This publication from the American Parkinson Disease Association is a helpful tool to learn about how you can handle some of the challenges of being a care partner.

Davis Phinney Foundation for Parkinson’s

This site offers a wealth of online resources geared to help you live well today, from blog posts to manuals full of practical information every family affected by Parkinson’s should read.

The Michael J. Fox Foundation for Parkinson’s Research

Offers podcasts, webinars, books, and other resources for everyone affected by Parkinson’s disease, from doctors and researchers to patients and care partners.

Caregiver Action Network

The Caregiver Action Network (CAN) offers care partners tips on everything from helping your loved one move, to showering and getting ready for the day. It also provides a host of resources for care partners to help take care of themselves.

PMD Alliance

The PMD Alliance provides love, support, resiliency, companionship, and much more for not just care partners, but family members and adult children as well. Here, you’ll find programs and resources to help you navigate life with Parkinson’s.

Family Caregiver Alliance

Whether you’re caring for another, or need to care for yourself, the Family Caregiver Alliance’s aim is to improve the quality of life for family caregivers and the people who receive their care.

Talking to your loved one

An honest conversation during a difficult time

We know that adjusting to life with PD can be challenging. One minute it can feel like your loved one is doing okay, and the next minute their PD symptoms can feel too difficult to overcome.

And yet, it's still possible for your loved one to downplay PD's effect on both of you. Which is why it’s important to have an open, honest conversation with your loved one about how you both are doing. By creating a “judgement-free zone,” you can help your loved one manage their health.

So here's what you can do: Pick a time and a day that works best for you and your loved one. Then, approach each topic with the understanding that talking is better than not talking.

You know your loved one best, but here are some ways to help you start a hard conversation:

  • “Are you noticing any new signs of OFF time?”
  • “Do you feel like your OFF time symptoms get in the way?”
  • “What can I do to help support you when you experience OFF time?”

Tip: Your concerns are valid. Your loved one’s concerns are valid. Being open with each other can help you both better manage PD.

How to talk to your loved one’s doctor about whether ONGENTYS is right for them

Is your loved one starting to experience symptoms in between doses of medication or when their levodopa/carbidopa starts to wear off?

Recognize it may be time for a treatment change.

This is known as According to the International Parkinson and Movement Disorder Society, OFF time is when a PD medication “wears off” and motor symptoms (i.e. tremors or stiffness) and/or non-motor symptoms (i.e. fatigue or pain) may return.  and it may be a sign that it's time to talk to your loved one's doctor about their treatment options. The doctor may do any number of things to enhance levodopa, such as increasing the dose or dose frequency, or even adding another medication on top of levodopa/carbidopa.

When your loved one starts experiencing breakthrough PD symptoms, consider talking to their doctor about enhancing levodopa with ONGENTYS.

Then, prepare for your loved one’s doctor’s appointment

Your point of view can really help your loved one's doctor make the best treatment decisions. Some things you can be aware of when prepping for your next doctor's appointment are:

  • Knowing when OFF time symptoms start
  • How long your loved one’s OFF time lasts
  • How many OFF episodes are experienced per day

To help you and your loved one prepare for your next doctor's appointment, fill out the Doctor Discussion Guide together, and bring it to the doctor's office.

Ask your loved one’s doctor about ONGENTYS

For people with PD taking levodopa/carbidopa to manage their OFF time symptoms, once-daily ONGENTYS is the levodopa/carbidopa enhancer. It's a simple once-daily capsule taken at bedtime, that lasts for 24 hours, and reduces daily OFF time. With ONGENTYS, it's one standard dose that works with your loved one's existing levodopa/carbidopa routine.

Learn more about ONGENTYS and how it works.

Don't let your loved one wait to do something about OFF time. Ask about ONGENTYS— the levodopa/carbidopa enhancer for OFF time.

Stay updated about ONGENTYS while you care for your loved one

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