I Have Parkinson’s, and I’m Okay

Appointment

Sometimes in life, telling someone you’re “fine” or “okay,” even when you’re not, is acceptable. Sometimes, simply saying you feel great (even if you don’t) can boost your mood. Sometimes, a polite, “I’m well; how are you?” is all that’s called for. Sometimes, there’s no need to explain to someone who asks the truth about how you’ve been.

And sometimes, especially when you’re living with Parkinson’s, there is.

A key difference between living well with Parkinson’s and just getting by is admitting—to yourself and to your care team—when you’re not okay. Acknowledging challenges is the first step in overcoming them, and recognizing your struggles and working with people who can help is how you transition from saying you’re okay to truly feeling that way.

The most important thing to remember is that awareness and communication are key. In this post, we’ll highlight 11 important strategies you can use, beginning today, to make sure you feel okay, or better than okay, on a regular basis.

#1 — Track your symptoms

Often, especially when our lives are busy, we can overlook changes in our health until they increase to a debilitating level. In other words, we feel okay—until, suddenly, we realize we don’t. How can you prevent this? By tracking your symptoms and taking the time to mindfully notice how you feel at various points in the day and during different activities. Pay close attention to how you feel when you wake up, during and after exercise, before and after eating, and as night approaches. Make note of any changes you experience throughout the day or week. (Need help with this kind of tracking? Be sure to check out our worksheets designed to make this easier!)

#2 — Ask for feedback

Because your friends and family members may notice new or changing symptoms before you do, encourage them to share their observations with you. People close to you can sometimes tell when new symptoms emerge and when you’re not okay, even if you feel that you are. Listen to them, and know that they’re sharing observations to help you live well and to show love and support.

Woman speaking to doctor#3 — Build a strong relationship with your healthcare providers

Maybe your care team includes several physicians, such as a movement disorder specialist, neurologist, and primary care physician. Maybe you regularly see only one of these providers. Either way, creating an open and honest relationship with them is essential for living well with Parkinson’s. Be sure you find a provider with whom you feel comfortable sharing your experiences and symptoms, and whom you feel listens and respects you during appointments. It’s perfectly acceptable to find a new provider if you don’t feel you’re getting the care you deserve, and if you begin to feel like your provider is assuming you’re okay simply based on how you look or act during a short appointment, take the time to consider whether you’re seeing the right provider for your needs.

#4 — Maximize appointment times

Medical appointments are brief, and as a result, you may not feel you have time to dive into a conversation about how you’re really feeling. Don’t let this stop you. Take time before your appointment to make a list of your most impactful symptoms, what challenges might be impacting your day-to-day life, and what your goals are for the appointment. When you prepare in advance, you can maximize your time with your provider.

Doctor and patient conversing at clinic#5 — Be honest

It can be tempting to “play up” to your providers and gloss over symptoms that are causing you to feel less than okay. Doing this, though, means you’re not getting the care you need to feel your best. If you find yourself continually telling your physicians and other care team members that you’re fine, pause and check in with yourself to consider if this is fully true. Are you making light of bothersome symptoms to seem more fine than you are? If so, work on communicating more openly about these experiences.

#6 — Bring a buddy

Although it’s not always possible, bringing a care partner or friend to appointments can help your provider get a complete picture of your health. You may tell your physician you’re feeling fine, and your care partner might chime in with reminders about times they’ve noticed recently when you haven’t seemed fine. They can provide a more complete picture of your day-to-day experiences, and the more complete the picture, the more tailored your physician can make your treatment plan.

#7 — Ask for referrals

Sometimes, even when you have strong rapport with a provider, there may be issues you don’t feel comfortable sharing with them. If this is the case, ask for a referral to another professional who can help and who specializes in that area. For example, if you feel uncomfortable discussing a symptom like sexual dysfunction (a common non-motor symptom of Parkinson’s) with your primary care physician or MDS, seek out a licensed sexologist who can help. If mood-related symptoms like depression and/or anxiety are top of mind for you but aren’t getting enough attention when you see your primary provider, ask for a referral to a therapist or psychiatrist who specializes in these areas.

#8 — explore new medication strategies

As your Parkinson’s changes, know that your medication regimen may need to change as well. Medications and dosages that worked well one year may need revisiting later, and because new medications for Parkinson’s are continually approved, there may be a new treatment that could work well for you. Talk with your providers at each appointment about whether new options or changes to your drug regimen can help you feel your best.

#9 — Craft a strong care team

Parkinson’s is multi-faceted, and one provider won’t be able to help with every aspect of care. To stay “okay” (or better) in the many aspects of your well-being, consider the many people who can help you thrive. Feeling okay in regards to movement but not emotions? Seek out a mental health professional who can help. Need some guidance to improve your balance or gait? Explore physical therapy opportunities in your area. Want to get more involved in your community? Find a support group or class in which you feel comfortable. Take action to feel okay — or fantastic! — in as many areas as possible.

#10 — Know when to speak up

It’s critical that you acknowledge the times when you’re not okay. Doing so is the first step to getting back on track to living well. Telling even one person that you’re feeling less than okay is a powerful action and steppingstone on the path to feeling better.

Outdoor meeting#11 — Find your people

Connection and community are key to living your best life with Parkinson’s. In fact, other than medication, we believe exercise and community are the most important treatments for Parkinson’s. Stay involved in your social circles, go to local events, volunteer, and make connections with others who truly “get” you, like our Ambassadors.

Using these strategies, you can take action, beginning today, to ensure that when you say, “I have Parkinson’s and I’m okay,” you mean it.

This blog post was written by the Davis Phinney Foundation.

This blog post is sponsored by Sunovion.

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