For patients with Parkinson’s Disease, surrounding themselves with motivating and supportive people matters more than anything else, but the encouraging words from friends and family may still sometimes not be enough. With that in mind, some people join support groups for Parkinson’s primarily to broaden their support systems, and at the same time, learn and share experiences with other people who are in a similar situation. However, different people have different needs, and not all patients with Parkinson’s disease may need to join a support group. Read on below to know more.
What are support groups?
Support groups are a gathering of individuals that share something in common such as experiences, addictions, or in the case of Parkinson’s, a disease. Support groups are formed to help provide encouragement, advice, comfort, and learning while also functioning as a social circle. Sessions can vary from small get-togethers to huge formal meetings, and some groups can be online-based where members meet through video calls or group chats.
Do I need to be in a support group?
Not everyone living with Parkinson’s Disease may need a support group, but it’ll never hurt trying to join one. If ever you find that the groups in your area are not suitable to your tastes, you are always free to start one yourself. It is always better to form a support group for Parkinson’s that matches your preferences and gives you comfort than force yourself into one that doesn’t. Support groups are supposed to make you feel better about your condition and motivate you, not make you feel worse. With that all said, here are some support and research groups for Parkinson’s that you might take an interest in:
The Michael J. Fox Foundation for Parkinson’s Research
Aside from being a familiar face in the entertainment industry, Michael J. Fox is also known for his efforts in promoting and supporting research activities geared towards the discovery of a cure for Parkinson’s disease. Founded in the year 2000, the foundation also encourages Parkinson’s disease awareness through information drives and podcasts. It also serves as an avenue for Parkinson’s disease patients and their loved ones to stay updated with the latest news regarding the condition and research developments.
Parkinson’s Disease Foundation (PDF)
One of the oldestsupport groups for Parkinson’s which was founded in 1957, the Parkinson's Disease Foundation, supports Parkinson’s patients through continued education programs and services. Like the Michael J. Fox Foundation for Parkinson’s Research, the Parkinson’s Disease Foundation also provides financial support for scientists who wish to engage in Parkinson’s-related research, aiming to bring together brilliant minds in the medical community to work together for a cure to end Parkinson’s while ensuring quality life for patients suffering with the condition during the process.
American Parkinson Disease Foundation (APDA)
Unlike the Michael J. Fox Foundation for Parkinson’s Research and the Parkinson’s Disease Foundation, the American Parkinson Disease Foundation’s main advocacy is to provide quality life to patients suffering from Parkinson’s through information, referral, educational programs, wellness activities, and other similar events. Founded back in 1961, the foundation has already shelled out more than $170 million to support its activities. Furthermore, the American Parkinson Disease Foundation does not only reach out to Parkinson’s disease patients but their immediate families, friends, and the general public to raise awareness of the disease.
Northwest Parkinson’s Foundation (NWPF)
Another one of those support groups for Parkinson’s, the Northwest Parkinson’s Foundation, caters to Parkinson’s patients in the northwestern parts of America, particularly Montana, Alaska, Idaho, Oregon, and the Washington State. With their slogan “Moving, Connecting and Engaging”, the Northwest Parkinson’s Foundation reaches out to an estimated 100,000 people in the Northwest living with the disease through various technological means such as weekly blog posts, webinars, and news updates on Parkinson’s disease research breakthroughs and therapies. The foundation has also recently developed a speech therapy app for its audience and has been consistently implementing its flagship programs and events such as Dance for PD, the Tremolos choir, PD University education programs, among others. To enhance its resources, the Foundation has partnered up with various other organizations such as Parkinson’s Resources of Oregon, World Parkinson Coalition, local hospitals, clinics, and health centers.
European Parkinson’s Disease Association
Serving nearly 30 countries in the European continent, the European Parkinson's Disease Association strives to promote the right of Parkinson’s disease patients in Europe to live a full life despite their conditions. Some of the association’s activities involve connecting with Parkinson’s disease patients all over Europe, educating their loved ones and other stakeholders by raising awareness of the disease’s complexity and its impact, and providing financial support for research activities being done to discover a cure for the disease.
World Parkinson Coalition
A non-profit Parkinson’s disease support group that possesses an international presence, the World Parkinson Coalition brings together medical experts, scientific researchers, and people living with Parkinson’s in the hopes of improving existing therapies, patient care practices, and eventually, finding a cure to end Parkinson’s. Founded in 2004 as World Parkinson Congress Inc., the coalition serves as an international forum to inform interested individuals and organizations on the latest scientific discoveries, research efforts, advocacy works, and other newsworthy events relating to Parkinson’s disease.
Alliance of Independent Regional Parkinson’s Organizations (AIRPO)
The Alliance of Independent Regional Parkinson’s Organizations or AIRPO is a collaborative effort of various Parkinson’s disease support organizations throughout the United States formed in 2009 with the shared goal of promoting quality lives for Parkinson’s patients and at the same time, supporting research efforts in discovering a cure for the disease.
Parkinson Patients Support Organization - Ethiopia
An Ethiopia-based Parkinson’s disease support group, Parkinson Patients Support Organization‘s key activities include raising awareness to the general public about Parkinson’s through audiovisual and print media, workshops, seminars and other similar means. The organization also provides financial support for Parkinson’s disease patients in critical conditions to render them capable of purchasing their needs such as medicines and health care. This support group serves as a voice for people living with Parkinson’s in Ethiopia by recommending legal reforms to the government that can benefit patients and establishing care centers for Parkinson’s patients who are neglected or do not have immediate relations to care for them. The organization also aspires to have a research center to know more about the disease and contribute to the continuing thrust of the international community in finding a cure for the disease.
Parkinson Society Singapore
Formed by a small group of doctors, nurses, and caregivers who are passionate about helping people living with Parkinson’s in 1996, the Parkinson Society Singapore seeks to improve the quality of life for Parkinson’s patients through organizing activities such as annual public forums, therapeutic exercise programs, and recreational activities. Parkinson Society Singapore also publishes periodicals to raise awareness of Parkinson’s disease and works closely with local hospitals to give support, education, and motivation for Parkinson’s patients in their journey with the disease. The society also has a subordinate support group called the Youthful Parkinson Circle that caters to patients diagnosed with Parkinson’s disease before hitting the age of 60.
The support groups for Parkinson’s listed above are just a fraction of the actual number of organizations that are dedicated to alleviating the pain and loneliness experienced by Parkinson’s disease patients in their journey living with the disease. If you or a loved one is interested in joining one, you can always ask your doctor or any medical expert to aid you in finding one in your area.
- The Parkinson's Disease Foundation, supports Parkinson’s patients through continued education programs and services.
- The American Parkinson Disease Foundation’s main advocacy is to provide quality life to patients suffering from Parkinson’s through information, referral, educational programs, wellness activities, and other similar events.
- There are large foundations that cater to patients in specific regions such as the Northwest Parkinson's Foundation and the European Parkinson's Disease Association.