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A Few Years or More into Life with Parkinson’ s
As Parkinson’ s evolves, changes in symptoms and routines create opportunities for additional care partner support. You might see areas where you can help as your loved one adjusts medications, engages in physical therapy or other treatments, or modifies their health care team.
Managing Changing Symptoms
Progressing Parkinson’ s may bring more or new symptoms. Motor symptoms include tremor, slowness, stiffness, and walking and balance changes. Non-motor symptoms can include mood, sleep or sexual changes, constipation, pain and fatigue, among others.
Symptoms vary from person to person. Even if symptoms are well-controlled, other changes related to medication may begin to appear, such as:
+“ Off” time, when symptoms return as medication wears off between doses or in the morning.
+ Dyskinesia, or involuntary movements.
+ Fluctuations, or ups and downs, in symptom control throughout the day.
Over time, you’ ll become a keen observer of the disease; you may begin to know your person’ s symptoms almost as well as they do, sometimes even noticing changes( especially in mood or behavior) before them. You can offer insights about daily life with the disease to medical providers who only see your loved one periodically.
As a care partner, you may continue previous tasks, like coordinating and attending medical appointments, while taking on new ones. These could include things such as:
+ Assisting with dressing.
Learning Flexibility
There may be days where your loved one isn’ t up for their usual activities. Unpredictability requires flexibility and adjusting expectations of what a“ good day” means for you both. Now is the time to adapt activities you like doing together. It’ s important to keep up shared interests and activities in ways that make the most sense for where you are now.
Planning for the Future
As you and your loved one discuss how symptoms impact life and how to work around them, it’ s natural to begin thinking ahead. Some important topics to discuss include:
+ How long your loved one wants, or may be able, to work.
+ What Parkinson’ s means for your children or family in the long term.
+ If it’ s time to do that thing you’ ve always wanted, like taking a vacation, learning a new skill or anything else you’ ve been putting off.
It’ s often easier to consider immediate issues like jobs, finances and children. But it’ s just as important to talk about what brings you both meaning, purpose and fulfillment. These areas serve as your compass for making decisions about the future and help fill your life with the people and things that matter most along the way.
+ Helping with household tasks.
+ Logging symptoms and medications to figure out patterns in“ off” time or dyskinesia that can direct medication adjustment.
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