Charting a Course for Parkinson’s Care
Though every person living with Parkinson’s disease (PD) experiences symptoms and progression differently, there are standard phases of advancement, known as stages. Whether you are newly diagnosed or living with advanced PD, you can work with your doctor and healthcare team to chart your progression — central to living your best with Parkinson’s.
This article is based on a Parkinson’s Foundation Expert Briefing The Parkinson’s Journey: Understanding Progression presented by Annie Killoran, MD, MSc, from University of Iowa Hospitals and Clinics, and Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, from Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorders Center — both from Parkinson’s Foundation Centers of Excellence.
Establishing a Baseline
Parkinson's advances over time. Your Parkinson’s symptoms are unique to you. Taking a symptom snapshot and regularly assessing your PD progression can ensure that you and your doctor consider appropriate care for every stage. This can also help you plan for any challenges before they happen.
A movement disorder specialist (a neurologist with PD training) make a PD diagnosis using a combination of tests and symptom assessment. Similarly, your doctor may use symptom assessment, along with evaluations such as the four-part Unified Parkinson’s Disease Rating Scale (UPDRS) — exploring mood changes, motor (movement) symptoms and impacts on daily living — to get a picture of your PD progression.
Such evaluations also explore the impact of non-motor symptoms, which are common and wide-ranging in Parkinson’s and can include sleep disorders, speech problems and neurogenic orthostatic hypotension — a rapid drop in blood pressure.
Understanding Parkinson’s Stages
Though everyone experiences PD differently, actively engaging in wellness and exercise is vital to maintaining balance and movement in Parkinson’s. The Hoehn and Yahr PD scale classifies PD into five stages. This scale is mostly used for research, but can also help explain how PD impacts quality of life:
Mild movement symptoms, such as tremor, usually initially only affect one side of the body. Although everyone who lives with PD will progress differently in their journey, a person with Parkinson’s can remain at this early stage, or the next, for up to 10 years.
Movement symptoms, including slowing and stiffening, begin to become noticeable on both sides of the body. Erratic, involuntary movements, called dyskinesia, can also appear during this stage and the next. Dyskinesia often begins after a few years of levodopa treatment. Share any symptoms with your doctor, who might adjust your levodopa dose or try incorporating anti-dyskinesia therapy.
Trouble with balance and increased fall risks characterize this mid-stage of Parkinson’s. Activities may become harder, too. Physical and occupational therapy and walking aids may reduce falls. “On-off” periods (when levodopa unpredictably starts or stop working) can become common in people who have taken the medication for several years.
As symptoms progress – usually in people who have lived with PD for 18 years or more – the need for assistance with tasks, caregiving and possibly a wheelchair to prevent falls increases. Around 80% of people who have lived with Parkinson's for 15 years will have recurrent falls. This is associated with a reduced quality of life.
At this most advanced PD stage, tasks are very difficult and often require comprehensive caregiving. Planning well ahead for this stage can minimize stress, optimize care, and ensure your preferences are carried out.
Living Well at Every Stage
Just as a healthy diet and ample exercise can help you live optimally with Parkinson’s, so can palliative care. Palliative care — sometimes mistaken for end-of-life, or hospice, care — is instead holistic, team-based treatment designed to support a person’s quality of life from the point of their diagnosis onward. Doctors, nurses, social workers, occupational and physical therapists, nutritionists and others healthcare specialists can all be a part of a palliative care team.
As you and your care partner begin incorporating support resources, take things one step at a time. Give yourselves extra time and patience, and make life easier where you can. A social worker with experience in movement disorders can help assess your needs and create a palliative care starting point. From there, they can either provide certain resources directly or help you or your care partner identify and locate needed supports.
Because stress can amplify PD’s challenges, caring for your emotional health is as important as tending to your physical well-being. The journey with Parkinson’s can be filled with emotions, including frustration and grief. Whether you live with PD, or love someone who does, learning to acknowledge and accept all your feelings is important.
Making space for both positive and painful emotions is healthy and human. Taking time to observe and sit with your emotions can help you pinpoint any challenges in your life. This can be the first step in tackling them.
Living with Parkinson’s not only asks us to sometimes make room for heavy emotions, it can also require us to have difficult conversations. Discussing and planning for advance care, something everyone should do whether living with PD or not can be a sensitive topic. However, talking about your wishes early on with your family can offer peace of mind.
Engaging a lawyer, chaplain or social worker with advance care planning experience in your conversation can be helpful. These conversations can inform advance directives, living wills and POLST (Physician Orders for Life-Sustaining Treatment) forms — legal documents that ensure your wishes are carried out if you are unable to communicate them.
Remember, if something is standing in the way of you living your best life with Parkinson’s, speak up. People with PD might hesitate to talk about seemingly taboo challenges — hallucinations, urinary incontinence or intimacy issues. It is important to share these quality-of-life issues with your care provider. They are often manageable. Things might be as simple as a medication adjustment.
The Parkinson's Foundation is committed to you at every step of your journey. Call our Helpline for answers to your Parkinson’s questions and referrals at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.