Capital Area Parkinson's Society

CAPS for People With PD:  Navigating Parkinson’s Diagnosis With Your Family

Written by: Jennifer Prescott RN, MSN, CDP 
Vice President Capital Area Parkinson’s Society 
Founder/COO Blue Water Homecare and Hospice

10 Things That Make Discussing a Parkinson’s Disease Diagnosis Easier

Receiving a Parkinson’s disease diagnosis is undoubtedly a life-changing event, not just for the individual facing the condition but for their family as well. Discussing Parkinson’s is a delicate yet crucial conversation that requires open communication, understanding, and support.

In an effort to make these conversations easier for families, we’ve provided our top 10 pieces of advice on ways to approach and navigate the discussion. The end goal is fostering a supportive environment that strengthens your bonds during this challenging time.

  1. Educate Yourself First Before initiating the conversation, take the time to educate yourself about Parkinson’s disease. Understand the basics of the condition, its symptoms, and the possible challenges that may arise. Having this knowledge empowers you to address any questions your family may have and provides a foundation for an informed discussion. Contact Capital Area Parkinson’s Society (CAPS) for resources and educational materials.
  2. Choose the Right Time and Setting Selecting an appropriate time and setting for the conversation is essential. Find a quiet and comfortable space where everyone can sit down without distractions. Timing matters too; choose a moment when everyone is calm and has the time to engage in a meaningful discussion.
  3. Express Your Feelings Start the conversation by expressing your own feelings about the diagnosis. Be honest and vulnerable, sharing both your concerns and hopes. This sets the tone for an open dialogue and helps your family understand the emotional impact the diagnosis has had on you.
  4. Provide Information Share what you’ve learned about Parkinson’s disease with your family. Explain the nature of the condition, its potential progression, and the available treatment options. Help them understand that while Parkinson’s is a part of your life, it doesn’t define you, and there are ways to manage and live well with the condition.
  5. Encourage Questions and Emotions Create a space where your family feels comfortable asking questions and expressing their emotions. Understand that they may experience a range of feelings, including fear, sadness, or confusion. Encouraging open communication allows for a more comprehensive understanding of everyone’s perspective.
  6. Highlight the Importance of Support Emphasize the importance of a strong support network. Let your family know that their understanding, patience, and encouragement play a vital role in your well-being. Share specific ways they can support you, whether it’s accompanying you to medical appointments, helping with daily tasks, or simply providing emotional reassurance.
  7. Address Practicalities Discuss practical aspects, such as potential lifestyle adjustments and any immediate needs. This may include modifications to the home environment, scheduling medical appointments, or exploring resources within the community that can provide additional support.
  8. Plan for the Future
    While it’s crucial to focus on the present, addressing future considerations can bring a sense of stability and agency. Discuss plans for ongoing communication about your health, legal and financial matters, and potential long-term care arrangements. Having a plan in place can alleviate anxiety for both you and your family.
  9. Reassure Them About Your Resilience
    Communicate your determination to live a fulfilling life despite the challenges presented by Parkinson’s. Reassure your family that, with their support, you are committed to maintaining a positive outlook and actively managing your health.
  10. Seek Professional Counseling If Needed
    If needed, consider involving a healthcare professional or a counselor in the conversation. Their expertise can provide additional insights and support for both you and your family as you navigate the complexities of Parkinson’s disease together.

Discussing a Parkinson’s Disease Diagnosis Isn’t Easy, But You Can Do It

In conclusion, approaching the conversation about a Parkinson’s diagnosis with your family requires compassion, honesty, and a commitment to open communication. By fostering an environment of understanding and support, you can strengthen your family bonds and navigate the challenges of Parkinson’s with resilience and unity.

Remember that everyone’s emotions and reactions may vary, and patience will be key as you embark on this shared path of understanding and adaptation together.

About Capital Areas Parkinson’s Society (CAPS)

Capital Area Parkinson’s Society (“CAPS”) is dedicated to supporting the needs of people in Central Texas who are living with Parkinson’s disease and those who care for them through education, information, support, and services.

Founded in 1984, CAPS is a volunteer-led 501(c)3 non-profit serving the Central Texas community. Membership in CAPS is open to anyone with an interest in Parkinson’s Disease and offered at no cost to the member. If you would like to be a member, get involved or support CAPS, please register at https://capitalareaParkinson’ or call 512-371-3373 or via email at info@capitalareaParkinson’

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