Strategically Mapping Out a Plan for Our Journey with Parkinson's and Dementia

Updated: Apr 20

Whenever we get a diagnosis that makes us ponder, possibly even fret about the future - it can be easy to do one of two things: (1) feel completely overwhelmed and bury our heads in the sand, or (2) anxiously feel the need to get our affairs in order. That is true with any diagnosis, even aging in general. Parents don't want to be a burden to their children or loved ones, and loved ones want to make sure they are properly prepared to honor the wishes of those impacted by the condition when needed.

When it comes to getting a neurological degenerative diagnosis such as Parkinson's or Dementia, we may even find ourselves at a critical point to need to get affairs in order more quickly than we had originally planned. Not only can that be overwhelming, but you can also feel lost - especially if you don't even know where to begin.

Immediately, we find ourselves wanting to make sure we are seeking out the best resources. That can mean Googling the diagnosis itself. We find ourselves wanting to learn as much about the condition as possible, but then we also realize that we have other business and legal matters that need our attention as well.

In addition to making sure that you have the proper medical team in place to best serve you, it is also important to make sure you are tapping into the best local resources to support you along your journey. Sources and people you can trust are critical to being a part of your team. That may mean understanding what wellness track to take to help prevent progression. Or, perhaps you feel like you need more emotional support, and you want to connect with others on the journey so that you can learn more from them.

Then, you also must consider if you have the proper resources in place for planning for the financial journey, budgeting for your future care, and legally having the right documents in place to make sure your wishes can be honored and clearly transitioned to your family members and/or friends.

The more we prepare for our journey with our conditions, the more we can accept where we are in that journey. By planning and making sure you have the appropriate resources in place, you can put you and your loved ones focus on living your best day today and alleviate the stress and anxiety that comes from worrying about the unknowns of tomorrow.

In Chapter 2 of Sunsets and Silver Linings, author, Brooklyn White helps you understand how to develop a long-term care plan for those with Parkinson's, or anyone aging that wants to feel confident that their affairs are in the proper order. Some of the topics addressed, include:

  • Navigating Medical Insurance and Medicare - What coverage is best?

  • Should I consider getting Long Term Care Insurance?

  • How can I budget and plan my care -what all should be considered?

  • How do I choose the best neurologist for Parkinson's? What other medical resources will I need to tap into? How does my primary care physician fit into my medical team when it comes to PD?

  • What questions do I need to ask my neurologist and how do I best prepare for those appointments?

  • What should I prepare in advance to take with me should there be an unexpected hospitalization or emergency?

  • How important is it to have a Health Care Proxy or Power of Attorney, and where do I even begin?

  • Are there end of life measures I need to consider documenting such as a DNR, Tube Feeding, Antibiotic Treatment, Pain Management, etc.?

  • Can I stay at home? What long term care plan options could I possibly need?

  • How should I go about bringing my family and friends into the diagnosis? How can I explain it to them?

  • How valuable are support groups or professional therapy options, and are they available to me locally?

  • There are so many organizations and information, what is the source of truth?

  • What specific therapies, diet, or wellness programs will enhance my life with Parkinson's?

My goal in writing this book was help make the journey for everyone with Parkinson's or Dementia easier - not only for the person diagnosed, but their entire support system. It is important to be able to discern and make well informed decisions from trusted resources to alleviate fretting over the future.

Your focus should be on living well. Whether you navigate this yourself with this book as a guide or choose to work with a geriatric care manager -- putting together a solid plan up front will decrease anxieties for you and your entire support team through open, candid, and honest communication and documentation.

If you want your adult children to better understand Parkinson's, or you are an adult child trying to learn more for a parent that has been recently diagnosed by Parkinson's or Lewy Body Dementia, check out Sunsets and Silver Linings to learn more about our journey.

While I wish I could give it away for free, I have to pay my printers. Proceeds of this book will be given back to Parkinson's and Lewy Body Dementia organizations.

At Engage Care Partners, we are here to help make the journey easier. In addition to authoring this book, Brooklyn White is available to help families navigate their caregiving needs - both virtually throughout the US and locally in the Greater Birmingham and Shelby County Areas of Alabama. You can learn more at

A Note from the Author: While this book is available on Amazon and Barnes and Noble in hardback, paperback and e-reader formats, I encourage you to make your purchase from the link above from my publisher, Xulon Press. Amazon and Barnes and Noble both take more than 60% of the proceeds from the sell of any book. By purchasing directly from the publisher for the same price, you are able to help others more with PD and LBD with a higher contribution from royalties. I'm sure many other authors would also appreciate this approach as well.

685 views0 comments