While your loved one’s Parkinson’s disease (PD) diagnosis probably changed your life overnight, care partner is a role and an identity that you grow into. It does not have to erase or replace any existing ways you self-identify.
Many family members know that something is going on with a loved one — and can often see early signs — before an official diagnosis is made. However, Parkinson’s can still come as a shock, often misclassified as denial. People often ask:
- How can the doctor know for sure? For more, read Getting Diagnosed.
- Should tests be run? There are no definitive lab or imaging tests for PD.
- Do we get a second opinion? In many cases, yes. A neurologist known as a movement disorders specialist is most qualified to make the diagnosis.
These are valid questions. As you begin researching the disease and what it may mean for the person with PD, you will also have to figure out what it means for you.
How do I adapt to the diagnosis?
Parkinson’s is a progressive disease. That can make it hard to define your role in your loved one’s journey, as your involvement and responsibilities will change along the way. Think about how you will share the diagnosis with family, assess your work-life balance and prioritize your own needs.
Build Your PD Knowledge Base
As your loved one progresses through stages of Parkinson’s, which is at a different pace for everyone, you will progress through stages of caring. Learn about the disease early on so you can participate in healthcare discussions, make informed decisions and provide emotional and physical support now and as needed in the future.
- Explore our educational materials. Our books, Frequently Asked Questions and Caring and Coping are great options. If you enjoy podcasts, listen to PD experts discuss the latest in Parkinson’s research and treatments on Substantial Matters.
- Find a Parkinson’s support group in your area. In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for care partners only, while others are a mix. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find one near you.
Begin Your PD Journey
Parkinson’s impacts each person in a different way, so there is no one-size-fits-all approach to caregiving. Your journey is unique, but you share it with the person with PD. Be sure to:
- Discuss together how you will share the news with family and friends.
- Choose an age-appropriate level of information and approach if you have children living at home. Check out our factsheet, Parkinson's and Your Children/Teenagers.
- Prepare for unsolicited advice. Friends and adult children are notorious for suggesting miracle cures from the latest online article about PD. Be polite but run all ideas past your care team.
What should I expect as the disease progresses?
While medications significantly reduce PD symptoms early on, and for many years, eventually many people with Parkinson’s notice that controlling symptoms becomes more difficult and requires medication adjustments. You may notice:
Inconsistent Response to Medication
- Motor fluctuations (known as “on-off” fluctuations) are changes in the ability to move, often related to when medications kick in or start to wear off.
- Fatigue. This makes it hard to plan activities, as you cannot predict physical capabilities. Caregiver flexibility is important.
Mood and Cognition Changes
- Changes to how the person feels, thinks and reasons can be more frustrating than movement symptoms, for both you and the person with PD.
- Anxiety, apathy and depression are common mood symptoms that people with PD can experience. Medication and non-medication treatments can help relieve these mood symptoms.
New Safety Considerations
- If symptoms begin to significantly affect mobility, memory or thinking skills, it may be time to consider if it is still safe for the person with PD to perform tasks that he or she once did easily as part of the daily routine.
- Driving may become too risky, for your own family’s safety and others on the road. Giving up driving is an enormous loss of independence to many people and can create a new burden for the caregiver.
Care Partner Stress, Strain and Burnout
Caregiver stress is, unfortunately, a part of life when caring for someone with a chronic illness such as Parkinson’s. Explore care partner stress, strain and burnout, and practical ways to address each one.
Exercise is medicine for people with Parkinson’s. Findings from the Parkinson’s Foundation Parkinson’s Outcomes Project show that people who begin regular exercise early in the disease experience a slower decline in quality of life. In fact, group exercise and physical and occupational therapy can help with both motor and non-motor symptoms of PD.
People with Parkinson’s and care partners rarely adjust to living with PD at the same rate. You might need to adjust household and lifestyle responsibilities. For example, should you take over the finances? Is it time to hire someone to do the yard work?
This can be a hard transition and the person you are trying to help might resent these changes but will eventually accept them.