Parkinson’s Disease Support Groups for Patients
Attending Parkinson’s disease support groups can be helpful for many reasons. Whatever stage of Parkinson’s you’re at, the disease can be incredibly isolating, and many people report not feeling connected to others who don’t understand their experience. This is among the many reasons why support groups are helpful for Parkinson's disease patients. Whether you're looking for Parkinson's emotional health support or informative resources, there are many benefits to joining a Parkinson's disease support group.
Why Join a Parkinson’s Disease Support Group?
When you are diagnosed with Parkinson’s disease, it often feels like you a part of a club you didn’t want to join. You may worry that you won’t connect with others with the condition – that they are all older or less active than you. Parkinson’s disease affects people of all ages and abilities, and it presents differently in everyone ("Symptoms of Parkinson’s Listed and Explained"). You may be surprised by how energetic and uplifting Parkinson’s disease support groups can be.
There are various benefits to joining a Parkinson's disease support group, including:
- Regular support
- Education about your condition and ways to manage it
- A chance to learn new coping skills
- Finding comfort in people you can relate to
- Opportunities for empowerment and growth
Misconceptions About Parkinson’s Disease Support Groups
Many people are reluctant to try Parkinson's disease support groups as they fear that talking to or seeing others in later stages of the disease will be difficult or depressing. Others worry that talking about their condition will force them to focus on the negatives. However, the opposite is usually true. Here are some common misconceptions about Parkinson's disease support groups:
Parkinson’s disease support groups are depressing: According to the Michael J. Fox Foundation of Parkinson’s Research, most people are pleasantly surprised by how “normal” a Parkinson’s support group can be. Some groups will involve activities or exercises, while others may focus on fundraising, getting involved in clinical research or simply sharing advice and information with others. It’s important to try a few different support groups to find the right one for you.
Only older people go to Parkinson’s support groups: Parkinson’s disease support groups usually contain a mixture of ages and abilities, and you never know who you’ll meet. That said, there are sometimes specific support groups for people with early-onset Parkinson’s, depending on where you live. Discuss your support options with your care provider.
All you do is talk: Depending on the type of group you attend, you may be encouraged to talk about your experience of Parkinson's disease – but that's not all you'll do. Support groups can be incredibly proactive places where people share tips, exercises and information to help one another. You may meet people with similar interests to you that are entirely unrelated to Parkinson's disease.
Local Support Groups for Parkinson’s Disease
Thanks to the Internet, it’s relatively easy to find local support groups for Parkinson’s disease. You can search “Parkinson’s disease support groups near me” in Google with your Location Services switched on, and you should be directed to meetings in your area. Your doctor will also be able to give you information on local Parkinson’s disease support groups, as well as the numbers to call if you have questions or need advice.
The American Parkinson’s Disease Association has a useful tool for anyone trying to find support in their community, where you can search by zip code to find groups, classes and resources in your area.
Alternatively, you can search for online support groups for Parkinson’s disease if you don’t feel like meeting up in person. Online support groups can be a great help for those in the later stages of Parkinson’s, where driving and getting around become increasingly difficult.
Some people with late-stage Parkinson’s disease have difficulty with speech, while others find that tremors and dyskinesia (involuntary movements brought on my medication) make it difficult to type on a computer or smart device. Therefore, there is no one-size-fits-all approach to Parkinson’s support groups. It can be helpful to try a few different Parkinson’s disease support groups to find out what works best for you.
Smith, E. (2022, January 28). Parkinson’s Disease Support Groups for Patients, HealthyPlace. Retrieved on 2023, February 5 from https://www.healthyplace.com/parkinsons-disease/support/parkinsons-disease-support-groups-for-patients