Introducing a new series “Parkinson’s Disease: Planning for the What-Ifs”

Planning for Advanced Parkinson’s Disease

It’s hard to think about the tough stuff. The what ifs, the worst-case scenarios, the unknowns.

For most, if not all people with Parkinson’s disease (PD), the condition is progressive, which means that it gets worse with time. However, for many of you, the worsening is gradual, maybe even imperceptible at times. This affords you many years of good living – exercising, spending time with family, maybe even working. You are one of a varied group with a wide spectrum of symptom type and severity, and without a doubt, you strive hard every day to overcome the challenges of PD, and you push forward and celebrate your victories big and small. You inspire us, and so many others, as you forge ahead with optimism.

But living life with hope and optimism isn’t easy.  For some, Parkinson’s disease can become advanced and much more difficult to navigate than what I described above, both in terms of motor and non-motor symptoms. And while you should not dwell on all of the negative possibilities that may lie ahead, it is wise to be aware of what may come so you can be prepared for tougher times, if that is in your future.

To help you, over the coming months we will feature a series of blog posts that address different aspects of advanced PD, advice for how to plan ahead and how to navigate the bigger challenges that may come your way. Together with Dr. Pravin Khemani, a Movement Disorders specialist in Seattle, WA, we will address this sensitive topic and hope to arm you with useful information that will help guide you should you need it now or much further down the road.

Again, it’s important to remember that everyone’s PD journey is different, but the truth is that some people can develop significant balance and gait issues. Some become unable to walk and must use a wheelchair exclusively or near-exclusively. Cognitive decline can become significant. Mental health issues such as psychosis, aggression and agitation can be prominent. Autonomic dysfunction—such as widely-fluctuating blood pressure and frank incontinence—can be disabling. Severe swallowing difficulties with aspiration and choking can occur.

To be clear, many people never reach this stage of PD, and instead live for many years at less advanced stages. End of life may occur at a ripe old age from another medical illness entirely.  But we would be remiss if we did not educate you about the full spectrum of possibilities.

Lack of information about advanced Parkinson’s

Advanced PD topics are not presented as commonly as others in many educational materials for a number of reasons. First and foremost, they do not come with easy solutions to convey or easy advice to give. In addition, many people with PD who are doing well do not need to (or want to) be worried about issues that they may never experience. However, ignoring these topics is not helpful to the patients with advanced PD and their caregivers who are searching for information. Because even though the symptoms cannot be resolved completely – there may be changes that can be implemented that improve quality of life.

In addition, there are diseases that are related to PD, which are known by a number of names, including Parkinson’s plus syndromes or atypical parkinsonism. The diseases in this category include progressive supranuclear palsy (PSP), coticobasal ganglionic degeneration (CBD) and multiple system atrophy (MSA), and as a group, progress more rapidly than PD. People with these diseases often lack information on how to deal with advanced symptoms.

What is Advanced PD?

There is no consensus on when advanced PD is reached. One common definition uses the Hoehn and Yanr scale, developed by Drs. Margaret Hoehn and Melvin Yahr in 1967. This scale focuses exclusively on motor symptoms.

  • Stage I – symptoms involve one side of the body
  • Stage 2 – symptoms involve both sides of the body, or the midline (that is, symptoms of structures in the middle of the body such as speech abnormalities)
  • Stage 3 – symptoms involve both sides of the body, with impairment of balance
  • Stage 4 – symptoms have advanced to the point that although the person can stand and walk without the help of another person, he/she has significant disability. People in this stage typically need at least some help to perform their activities of daily living, or self-care activities such as eating, bathing, dressing and toileting.
  • Stage 5 – the person cannot stand or walk without the help of another person

Some refer to advanced PD as those who reach stage 4. Others include only those who reach stage 5.

A major drawback of the Hoehn and Yahr scale is that it does not take into account the psychiatric, cognitive and autonomic non-motor symptoms that often cause more disability as PD advances than the motor symptoms. Therefore, although some neurologists do use this scale, it is not truly representative of the situation. However, scales have not been developed to quantify these non-motor symptoms and therefore delineating advanced PD using these symptoms is difficult.  Advanced PD therefore remains a term that is not clearly defined.

This series will use a broad definition and address both motor and non-motor issues of people with PD who are no longer independent of their activities of daily living.  The topics that we plan to address include:

  • Mental health in advanced PD
  • Extreme immobility
  • Managing secretions
  • Parkinson plus syndromes: MSA, PSP, CBD
  • Prognosis, planning and related issues

We hope the information we provide will help those who are looking for it and offer the guidance, comfort and peace of mind those who are dealing with advanced PD may need.

If there are specific topics you would like us to address in future blogs, please let us know.

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