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

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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.

Some tips to help you take care of yourself as a care partner

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Join an online or local support group

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Engage in physical activity, like jogging or yoga

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Eat Healthy

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Take some time for yourself

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Plan a date or activity with friends

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Ask for help when you need it

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 the effect PD has 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 "judgment-free zone," you can help your loved one manage their health.

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 carbidopa/levodopa (CD/LD) starts to wear off?

Recognize it may be time for a treatment change.

This is known as "off" time, 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 optimize levodopa, such as increasing the dose or frequency, or even adding another medication on top of CD/LD.

When your loved one starts experiencing breakthrough PD symptoms, consider talking to their doctor about optimizing levodopa by adding ONGENTYS.

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 their 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

Ask your loved one's doctor about ONGENTYS

At your loved one's appointment, mention how often their "off" time occurs and how it affects them. Then, ask their doctor if they think ONGENTYS could help.

Being a PD care partner isn't easy. The good news is, you can work with your loved one's doctor to maximize their "good on" time.

Stay updated about ONGENTYS while you care for your loved one