Parkinson’s disease is a neurodegenerative condition that may cause a variety of symptoms. These include difficulty with movement and cognitive changes that can make daily tasks challenging. Support options are available to help improve quality of life for those with Parkinson’s disease.
Parkinson’s disease is a condition that affects dopamine levels in the brain. Doctors diagnose the condition in around 60,000 people in the United States each year, and there are almost 1 million people with Parkinson’s disease in the U.S.
Symptoms of Parkinson’s disease include motor symptoms such as stiffness, shaking, and difficulties with moving and coordination. However, people with Parkinson’s disease may also experience non-motor symptoms. Experts estimate that at least 50% of people with Parkinson’s disease will experience depression and that up to 40% will experience an anxiety disorder.
Research by the Parkinson’s Outcomes Project reports that depression and anxiety have the most significant impact on the overall health of people with Parkinson’s disease — more so than the motor symptoms associated with the condition. Additionally, the research suggests that the care they receive also influences their quality of life.
Also, a 2020 study suggests a link between loneliness and the symptoms of Parkinson’s disease. It found that people with Parkinson’s disease who reported being lonely experienced a
Therefore, in addition to receiving medical care, it is important that people with Parkinson’s disease have a support system in all areas of their life to improve their quality of life.
This article discusses some support options that may be beneficial for those with Parkinson’s disease.
The Parkinson’s Foundation notes that it is important that people with Parkinson’s disease have a variety of trusted people in their lives whom they can turn to for support. Living with the symptoms of Parkinson’s disease can be difficult, and support should play a key role in a person’s care plan.
Support can come from a variety of places. For example, a person’s support system may include:
- a partner
- family members, such as parents or adult children
- close friends
- religious leaders, such as a minister, priest, rabbi, or imam
- people from their place of worship
- other people with Parkinson’s disease
- support group members
- social workers
- mental health professionals
A person may find it helpful to create a support plan. They may, for example, want to create a list with the contact details of the people in their support system. The person’s needs may change over time, and it is important that they continue to have a reliable support system around them.
A person may also find it useful to join support groups designed specifically for people who have Parkinson’s disease. Support groups offer a safe environment in which people can share their experiences and connect with others. A person can ask a doctor for information about local support groups or search for groups online.
The American Parkinson Disease Association (APDA) network provides information, support, and activities for people with Parkinson’s disease throughout the U.S. It offers a range of virtual events, including dance classes, yoga, choirs, and educational programs.
People with Parkinson’s disease can find local support groups, educational programs, health and wellness activities, and events using the search tool on the APDA’s website.
The Parkinson’s Foundation also offers information about local resources, support groups, wellness classes, and educational programs. People can access information about local programs using the website’s search feature.
There are many easily assessable online resources available to people with Parkinson’s disease.
If a person cannot access a support group locally, or if they would prefer to meet others online, they may like to join an online community. The Parkinson’s Foundation has an online space where people with Parkinson’s disease can ask and answer questions, offer and receive advice and support, and connect with others who have the condition.
Other organizations, such as the APDA, may also partner with online communities to create online forums where people can connect to offer help and share information.
Some other resources available online include:
- podcasts such as Substantial Matters: Life and Science of Parkinson’s
- webinars such as the Parkinson’s Foundation Expert Briefings
- online libraries where people can access books, informative videos, and other useful texts
- YouTube videos by organizations such as the Parkinson’s Foundation
It is important that people with Parkinson’s disease try to stay active and engaged with others for both their physical and mental well-being. Despite misconceptions, there are many activities that people with Parkinson’s disease can participate in.
The Parkinson’s Foundation suggests that people start by building support systems in their neighborhood. For example, a person with Parkinson’s disease may want to join local communities related to their hobbies to make friends with others who share their interests. If they are religious, the person may benefit from attending their local place of worship.
Exercise can help improve mobility, balance, gait, and quality of life in people with Parkinson’s disease. Physical therapy can similarly help people manage their symptoms and improve their overall quality of life. So, a person with Parkinson’s disease may benefit from activities such as walking, swimming, and
A doctor can advise on what type and amount of exercise may be most beneficial for an individual.
In whatever way they wish to do so, it is important that a person with Parkinson’s disease engages in social activities where possible and maintains a healthy, supportive social network.
Care partners may also benefit from joining support groups. The Parkinson’s Foundation notes that it is important for care partners to remember to care for themselves as well as their loved ones.
Care partner support groups can offer emotional support and practical advice for those caring for someone with Parkinson’s disease. A person can ask a doctor about local support groups or search for them online.
Organizations and websites that offer support for care partners include:
- The APDA: The APDA provides resources and support for care partners as well as people with Parkinson’s disease.
- The Parkinson’s Foundation: This organization also provides information for caregivers.
- The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.
There are helpful educational resources available online for people with Parkinson’s disease, their care partners, and health and well-being professionals. A person may wish to become informed and keep up to date with developments in Parkinson’s disease research by viewing webinars or reading articles.
It is important that people with Parkinson’s disease and their care partners stay informed about the best ways to manage the symptoms.
Organizations such as the APDA offer guides on many topics, including:
- symptom management
- healthcare teams
- disability benefits
- clinical trials
Specialist Parkinson’s disease awareness training is also available for first responders and fitness, health, and wellness professionals.
Some useful resources for people with Parkinson’s disease and their care partners include:
Some people may find managing their Parkinson’s disease symptoms frightening and isolating.
However, a person should not feel as though they need to cope alone, as having a support system around them can help both their mental and physical health and allow them to continue enjoying many aspects of their life.