Connect with others who understand.

sign up log in
About MyParkinsonsTeam

How Good Boundaries Make Life With Parkinson's Easier

Posted on September 12, 2019

There is an old saying: “Good fences make good neighbors.” Having healthy boundaries in relationships is important for everyone, especially for people with a chronic condition like Parkinson's disease (PD). Setting and defending boundaries allows you to protect your physical and mental health and focus on feeling your best while living with PD.

Setting boundaries can be hard. Your friends and family may not be used to you saying no or establishing limits for when and how you are available to them. They may expect you to have the same energy you had before you developed symptoms of parkinsonism like tremors or cognitive issues. No matter what, you are entitled to establish the boundaries you need to maintain your emotional and physical wellbeing. Setting boundaries to take care of yourself does not make you mean or selfish – it helps you focus on what you need to do to care for your Parkinson's.

Here are a few tips for setting boundaries clearly and compassionately:

  1. Use clear, direct language. For example, “I cannot attend the birthday party” is clearer and more direct than “I’m not sure I’ll be able to attend the birthday party.”
  2. Use “I” language and avoid accusations. For example, “I go to sleep early. I am not able to take calls after 9 p.m.” is less accusing than “You always call late and wake me up!”
  3. Don’t try to justify or over-explain your boundary. “No” is a complete sentence. For example, “I’m not able to take on new obligations right now,” is better than “I can’t drive carpool because having so many kids in the car stresses me out, and stress can cause my Parkinson's symptoms to worsen."

After setting boundaries, do not be surprised if you need to defend them. Some people will likely test your boundaries, especially when they are new. Expect some pushback and consider what a good response might be.

Here are some examples of boundary testing and possible responses:

  1. After saying you cannot attend a party, someone attempts to use guilt to pressure you to go. You could explain that Parkinson's isn’t taking that day off, so you will still be unavailable. You could point out that PD feels bad enough without adding guilt, so you don’t feel guilty about saying no to things that will be bad for you.
  2. After setting a boundary of no phone calls after 9 p.m., someone calls at 9:15. You could choose to let the call go to voicemail. You could answer and ask whether the call is about an emergency. If it’s not an emergency, ask them to call back in the morning, wish them a good night, and hang up.
  3. After saying no to one new obligation, you are asked to take on another. You can point out that parkinsonism is a chronic illness, meaning that it isn’t going away any time soon. Therefore your avoidance of new obligations applies to any new obligations, and if they ask again, the answer will be the same.

After testing your boundaries a few times, most people will understand that they are well-defended and learn to respect them. If you have allies who understand the challenges of Parkinson's disease, ask them to help you defend your limits with others. Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with PD.

Here are some conversations from MyParkinsonsTeam about setting and defending boundaries:

"You may have to bite the bullet and give him a little time to come to terms with his situation. He certainly does not want your pity. Be supportive but let him remain in charge."

"Sometimes the struggles I go through with my family wear me down. I keep waiting for the day when they will wake up and really, truly understand the struggles of living with PD."

"If we don't want help, please don't force it on us. We live in our bodies and have no trouble knowing when we should stop. We love you caregivers, but we have to be the boss when we need something."

Have you successfully set boundaries that help you manage parkinsonism?
What tips would you recommend to help set healthy limits with others?
Share in the comments below or directly on MyParkinsonsTeam.

A MyParkinsonsTeam Member said:

Considerate neighbors make good neighbors. So much for the fence!! I disagree.,,

posted 18 days ago

hug

Recent articles

Bsp af 6
Thousands of members of MyParkinsonsTeam connect with one another and read each other's stories...

Four Books About Parkinson's Disease You Should Read

Thousands of members of MyParkinsonsTeam connect with one another and read each other's stories...
Mht myparkinsonsteam article carousel managing parkinsons disease motor fluctuations
Article written by Mary K. Talbot Dopamine is a neurotransmitter that sends signals between nerve...

Managing Parkinson's Disease Motor Fluctuations

Article written by Mary K. Talbot Dopamine is a neurotransmitter that sends signals between nerve...
Mht myparkinsonsteam article carousel tips and lifestyle changes
Article written by Kelly Crumrin Most people who begin Levodopa treatment for Parkinson’s can get...

Tips and Lifestyle Changes to Improve "Off" Time in Parkinson's

Article written by Kelly Crumrin Most people who begin Levodopa treatment for Parkinson’s can get...
Mht myparkinsonsteam carousel what is dyskinesia like
Article written by Laurie Berger If you’re experiencing dyskinesia — jerky, involuntary movements...

What Is Dyskinesia Like?

Article written by Laurie Berger If you’re experiencing dyskinesia — jerky, involuntary movements...
Mht ad treatments thumb
Article written by Kelly Crumrin Parkinson’s disease is a movement disorder that causes motor...

Treatments for Parkinson’s and Parkinsonism

Article written by Kelly Crumrin Parkinson’s disease is a movement disorder that causes motor...
Coronavirus
Article written by Kelly Crumrin According to the Centers for Disease Control and Prevention...

Canceling Is Kindness: Keeping Safe From COVID-19 With Parkinson's

Article written by Kelly Crumrin According to the Centers for Disease Control and Prevention...
Mht ad thepathtodiagnosis2 thumb
Article written by Kelly Crumrin The path to a diagnosis of Parkinson’s can be a long and...

Parkinson’s – The Path to Diagnosis

Article written by Kelly Crumrin The path to a diagnosis of Parkinson’s can be a long and...
Mht ad cause thumb
Article written by Kelly Crumrin The cause of most cases of Parkinson’s disease is unknown. While...

What Causes Parkinson’s?

Article written by Kelly Crumrin The cause of most cases of Parkinson’s disease is unknown. While...
Mht ad types thumb
Article written by Kelly Crumrin Parkinsonism is a syndrome, or collection of symptoms,...

Types of Parkinson’s

Article written by Kelly Crumrin Parkinsonism is a syndrome, or collection of symptoms,...
Mht ad sideeffectsandparkinsons thumb
Article written by Kelly Crumrin On MyParkinsonsTeam, the social network and online support group...

Side Effects and Parkinson's

Article written by Kelly Crumrin On MyParkinsonsTeam, the social network and online support group...
MyParkinsonsTeam My Parkinson's disease Team

Two Ways to Get Started with MyParkinsonsTeam

Become a Member

Connect with others who are living with Parkinson's disease. Get members only access to emotional support, advice, treatment insights, and more.

sign up

Become a Subscriber

Get the latest articles about Parkinson's disease sent to your inbox.

Not now, thanks

Privacy policy
MyParkinsonsTeam My Parkinson's disease Team

Thank you for signing up.

close