Parkinson’s Disease—Coming to Terms with the “New Me”
Parkinson’s disease (PD) is incredibly complex — each individual experiences a unique set of symptoms and disease progression varies person by person. Many people with PD are often left wondering, "What’s next for me?".
We wanted to learn more about what it’s like to live with Parkinson’s, so we asked our community members to share their experiences.
For the Parkinson’s Disease In America 2018 survey, we gathered insights from 1,165 individuals who are currently living with the disease and 515 caregivers. Here are some highlights from what our community shared with us.
Symptoms go beyond a tremor
People with Parkinson’s experience a myriad of symptoms - beyond the typical tremor and other motor symptoms. The most common symptom reported in the survey was fatigue (71 percent).
People with PD also experience sleep issues, micrographia, bradykinesia, balance issues, constipation, and more.
Concerning cognitive issues
One third of people with Parkinson’s experience cognitive changes over time (32 percent). Of this group, 1 in every 5 reported that these cognitive changes had a significant impact on everyday life (21 percent), which is understandable! It can be disconcerting to feel like your brain isn’t working the way it once did.
Impact on quality of life
With such a wide array of symptoms experienced, many people with PD feel frustrated and overwhelmed. Their general health and well-being is not as good as it once was, and it’s easy to feel defeated.
Support after diagnosis
One way to help come to terms with the new you to is accept support from your loved ones. Asking for help can sometimes be challenging, but it can be incredibly helpful for your mental and physical well-being. In fact, 8 in 10 respondents had someone who helped manage their Parkinson’s disease.
There are also ways to receive support beyond turning to family or friends. In-person or online support groups are a wonderful way to find others who can relate to what you’re going through, and many respondents found that support groups were beneficial for their well-being.
Many people with Parkinson’s also find answers to their questions through other resources, like their healthcare providers or even online.
Reach out for help
Remember, you are not alone in this fight against Parkinson’s disease. We also have a supportive community right here at ParkinsonsDisease.net. If you’re struggling to come to terms with the new you, don’t hesitate to reach out to us on Facebook or in forums.
The Parkinson’s Disease In America 2018 online survey gathered insights from 1,165 individuals with Parkinson’s disease and 515 caregivers to better understand symptoms and management of this condition, as well as the impact on their lives.
Have you taken our Parkinson's In America Survey yet?