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The Power of Support Groups
Receiving any medical diagnosis can be daunting. Accepting the news that you have Parkinson’s disease (PD) or Essential tremor (ET) may inflict feelings of fear, anger, frustration, and anxiety.
Parkinson’s disease and Essential tremor are both disorders of the nervous system which cause uncontrollable hand tremors, amongst other symptoms. While they differ in many ways, both of these diseases are progressive, meaning that they worsen over time. Many people affected by PD and/or ET fear the unknown, and feel alone. A recent study conducted by Parkinson’s Victoria concluded that 55% of people living with PD report feeling socially isolated. However, there are multiple resources out there which aim to provide support, education, and awareness to people living with PD or ET.
Some of these resources include:
- Webinars - an interactive way to gain valuable information. Parkinson’s Canada and the International Essential Tremor Foundation offer various webinars which can be found on their websites here: https://www.parkinson.ca, and https://essentialtremor.org.
- Publications and scholarly articles - which are peer-reviewed and can provide accurate information related to diagnosis, disease progression, and ways to cope with your disease symptoms. Here is a scholarly article about Essential tremor. The article touches upon disease epidemiology, genetic and environmental factors that can affect inheritance risk, and modes of inheritance.
- Exercise programs - many of which are specified for people with PD or ET. For example, Rock Steady Boxing offers boxing classes to people with PD, aiming to empower people with PD to fight back. Interested in signing up for a class? You can learn more here.
- Support groups - can provide people with PD or ET with a support system, and an outlet to share information and experiences with one another. A list of support groups will be provided within this article.
- Steadiwear - Steadiwear provides information about assistive technologies, and other general information though blog posts, newsletters, and social media posts. If you’d like to read some of our blog posts, click here.
For the purpose of this blog post, we are going to focus on the power of support groups for people living with PD or ET.
Being part of a support group can be beneficial in many ways. Support groups provide a space to develop mutual support among group members. They offer a safe environment for participants to talk about their experiences, and provide helpful strategies for coping with the daily challenges of PD or ET. Some groups are specified for certain individuals. For example, Parkinson’s Canada provides specific support groups for people with young onset PD, or people who are newly diagnosed. The International Essential Tremor Foundation also provides a multitude of specified support groups in the United States. While these individuals are not excluded from more general PD support groups, they may find even more comfort in being part of a group with people who are more similar to them. In any case, all support groups are meant to provide a safe and comfortable place for people to connect with each other and share their experiences on how to live well with PD.
Studies have shown that in general, receiving social and emotional support from others may be protective for health. A recent study concluded that belonging to a support group was a consistent predictor of self-reported disease outcomes. This means that people who are part of a support group, or have a strong social support system are more likely to report their symptoms, and therefore seek help or treatment. Additionally, support groups can offer participants coping mechanisms and techniques to help limit their stress and anxiety. In a survey conducted by The American Parkinson Disease Association, the majority of patients reported that their tremor worsens with stress. As such, in order to avoid worsening PD and ET symptoms, it is important to practice stress management. One way to gain valuable skills and coping mechanisms to deal with stress is through a support group. Members of a support group can lend each other helpful tactics and tricks that they use to manage stress, and they can act as a support system for each other. While it is always helpful to have a large social circle, or supportive family and friends, being part of a support group offers a higher level of support. Being able to connect with people who share the same disease, symptoms, and concerns as you do can be comforting and reassuring.
Below, you can find a list of PD and ET support groups that are currently accepting new members. There are various support groups that offer virtual meetings due to COVID-19 restrictions. You can explore these options to see if there is a support group that meets your needs and desires:
1. Downtown Toronto Support Group
2. Toronto Care Partners: Early Stage PD
3. Manitoba, Saskachewan, and Northern Ontario Zoom Group
4. American Parkinson Disease Association
5. Parkinson’s Community - PD Facebook support group
6. Essential Tremor Toronto Network and Support Group
7. The Canadian Movement Disorder Group
In all, it is important to feel supported, especially when you are navigating through a progressive disease like PD or ET. Joining a support group can help you gain stress-management skills, social support, and a sense of community with people who are similar to you. Members of a support group can help you recognize that you are never alone in managing your disease. Consider joining a support group today!