Why and How to Join a Parkinson’s Support Group

When someone first hears the words, “You have Parkinson's disease”, it can be very scary and disorienting. Most people don’t know what to expect or what to do. There can be so many emotions going on: fear, anger, isolation, sadness, and more.

For many people, they find their guiding light and newfound strength through support groups. Support groups are virtual or in-person places where people with something in common gather together and reduce any isolation they or their families would otherwise likely feel.

These groups usually involve getting or giving support: encouraging, validating and helping others based on that commonality.

Here are some of the ways support groups can help a person with Parkinson’s:

You feel less alone. Hearing “Me too!” helps make people feel seen and understood.
You learn useful tips. People in the group often share advice about treatments, doctors, or tools that make life easier.
You hear about new research. Being in a group helps you stay updated on science, clinical trials, and new therapies.
You take care of your mental health. Many groups have trained helpers like therapists who guide the group and support your feelings.
You stay active. Exercise-based groups make it fun to move your body, which helps fight symptoms.
Your family gets support too. Groups for caregivers and loved ones give everyone a chance to talk and grow stronger together.
You build a community. Over time, you can make deep friendships and feel part of something bigger.
You can join from anywhere. Thanks to virtual groups, even people who can’t leave home or find local support can still be included.

Support groups offer friendship, social belonging, a sense of going in the right direction, and resource sharing amongst patients all over the world.

The great thing about Parkinson’s support groups is the sheer variety of groups available. They can be very general, or focused on very specific activities or ages. They can be local, regional, or even global. They can be meetups, travel groups, or virtual online communities.

No matter where you live or how tech-savvy you are, there is likely to be a support group that is accessible and fits your needs.

How to find support groups for Parkinson’s disease

A great place to start finding Parkinson's support groups is at local hospitals near you. Many of them have their own support groups or can direct patients to local support groups and other resources.

Another great resource is the neurologist who is providing most of your care. You can also check with your primary care provider or general practitioner for group resources as well.

Consider looking at your local senior resource center or churches in your area. Many times, support groups are held inside of the churches as well.

Search engines are the next best place to find groups. You can search for your local area along with a term like “Parkinson’s support group”. You can also look for local chapters of organizations such as the Parkinson’s Foundation.

You can also find support groups on social media. Facebook Groups have fantastic resources and people from all over the world with varying degrees of knowledge. They are usually quite busy and get great engagement so it’s likely that you will find the answers to any question and the support you will need.

Reddit is another social media platform where people can provide support to each other and get their questions answered like a forum. The Subreddit (ie, specific Reddit topic) called r/Parkinsons is a great place to start searching to find specific topics pertaining to your interests or questions about Parkinson’s in general. There’s a Subreddit just for caregivers of patients with Parkinson’s as well.

Types of Parkinson’s Support Groups

There are many different types of support groups for people with Parkinson’s disease, as well as their families and care partners.

In some support groups, members share experiences, resources, go over treatments, hear guest speakers and experts, and find much-needed community.

Other types of support groups focus on therapies for emotions and processing feelings with actual certified therapists.

Still other groups are centered on sports teams, exercise meet-ups, planning for the future, trying new accessibility products, or even new therapies.

Here are just some of the many groups available and how to find them:

Emotional support groups

Parkinson’s doesn’t just affect the body. It affects the mind, the heart, and mental well-being. That’s why many groups are designed specifically for people to process hard emotions and feelings that come with the daily struggles of Parkinson’s. That may mean dealing with public stares, or embarrassment that comes from movement differences or loss of skills and abilities.

These groups are often led by actual therapists or psychiatrists that guide members to talk about their fears, stresses, and even accomplishments in a social and sharing conversational way.

A young woman smiles as she listens to an older man speak. They sit at a wooden table, each with a drink.

Groups for caregivers and family members

Parkinson's, like many disabilities that affect one’s mental capacity and mobility, not only impacts the patient, but also everyone around them. For that reason, care partners and family members need a safe space to talk about their worries, struggles, feelings, and process what’s happening in their lives with people who are going through similar things.

They also may need to share resources for themselves, but even treatments and care resources for their loved ones as well. You can find a list of caregiver resources here: https://www.parkinson.org/resources-support/carepartners/resources

Groups for the newly diagnosed

Often, the most challenging time in the life of a patient with Parkinson’s is when they are first diagnosed with the condition. This always brings up extreme emotions, whether fear, sadness, confusion, and sometimes even validation if it took a person a long time to get diagnosed, which it often does. In fact, research suggests getting diagnosed properly can take up to three years for some people after symptoms are first experienced.

The benefit of these groups is that they can help educate newbies on what Parkinson's even is, how to deal with ever-changing symptoms, and what to expect in early stages and further down the line. It’s good to meet others going through the same early experiences.

Groups for single people living with Parkinson’s

Just as it is important for patients’ family members to have support, it’s even more of a consideration if the patients are taking care of themselves and live alone. And of course a single person’s care needs will be different from those with caregivers or family members that are around to help and share the load.

These groups often put on fun events, host game nights, or arrange dinners where single patients can build relationships through laughing, connecting, and socializing. And who knows, maybe something more might come from that.

Romance, dating and relationship groups

Dating can seem like it has to take a backseat to health concerns of Parkinson’s disease. Although, relationships feel more complicated but that doesn’t have to love or friendships have to stop just because Parkinson’s is thrown into the mix.

In groups that cater to the romantic and dating desires of individuals with Parkinson’s, they understand the communication difficulties that come from speech issues and problems with making facial expressions. These common problems might be too much for relationships outside of these groups, however there is great understanding in Parkinson’s-focused support groups for dating and romantic relationships.

Exercise and sports groups

We know from research and anecdotal evidence that movement helps the body fight Parkinson’s symptoms. Online and in-person groups focused on exercise might offer dance classes, boxing workouts, indoor biking classes, walking clubs, or gym meet-ups.

Family members might consider participating in sports-related fundraising events like 5K runs, golf tournaments, or walks. Look for foundations that raise funds by putting together teams that do events together such as marathons, ultra-marathons, Ironmans, triathlons, Tough Mudders, etc. These teams and groups not only help people stay active, but they can be a huge social boost to make and keep friends.

A man with a white beard rides a recumbent bike at an exercise facility. He is wearing a turquoise t-shirt and blue and white shorts.

Medical care and nutrition groups

Certain support groups are focused on the best way to deal with side effects of medication, what to ask doctors, and where to go for the best care.

Other groups may focus solely on nutrition and healthy ways to eat while on your Parkinson’s journey. These can help you improve your dietary habits and how you feel day-to-day.

Groups focused on specific age groups

Because Parkinson’s sometimes affects people much younger or much older than typical, sometimes it’s nice to talk to people who understand the unique challenges that come with those extremes in ages.

For instance, people who are diagnosed in their 50s, 40s, or even 30s are considered young-onset patients. Support groups for young-onset Parkinson’s (YOPD) can help people feel seen for their current challenges of having Parkinson’s while still parenting young kids or teens, still working, and dating or having relationships.

On the other hand, older adults may want to commiserate over different challenges such as loss of mobility before a Parkinson’s diagnosis, memory challenges, or having to depend on family for care.

Biomedical or alternative therapy groups

Many patients may be seeking or practicing alternative ways to feel better. These can include acupuncture, supplements, breathing exercises, yoga, red light therapies, device-aided therapies, Eastern medicine or more.

Groups like these can be important for people gathering anecdotal information, real-life confirmation, or even to reveal what hasn’t worked well for others. In these cases, people can share what has and hasn’t worked so that money and time can be saved.

Financial and estate planning groups

Living with Parkinson’s disease almost always has a financial component to it: there are questions of long-term care, insurance coverage, how treatments or mobility and accessibility products will be paid for, as well as how the disease will affect family members financially over time.

Planning for the future is already stressful as an older Disabled person, but even more so when thinking about a condition that may be progressive. Estate planning and wills are important for this reason, and feeling prepared can take much weight off the patients’ shoulders.

Having a support group that can help make informed and educated decisions about such significant matters is really helpful. These groups can bring in experts in the field and help share resources to make this part of life smoother and a lot more prepared.

Palliative care, end-of-life, and hospice consideration groups

Some support groups can help patients and their family members in later stages or older ages of Parkinson’s. These are not meant to be sad, but rather are spaces of empowerment, love, and honesty. People can talk freely about their wishes, how to stay comfortable, and how to live each day to the fullest.

Groups for co-occurring conditions

A lot of times, Parkinson’s isn’t the only condition a person is dealing with. While there are movement and motor issues that come with Parkinson’s, there are many non-motor symptoms too. Some of those include depression, sleep disorders, dementia, gastrointestinal problems, and others that may have been diagnosed before a patient even had Parkinson’s.

Finding support for patients and caregivers dealing with these co-occurring conditions can be helpful.

Join a Parkinson’s disease support group

Parkinson’s disease can change a lot about life. However, it doesn’t have to take away connection, socialization, joy, or hope. As with anything, finding and getting the proper care and support can make just about anything in this life possible. That includes continuing to live the life you love while finding community, comfort, and stability in people around you who also understand your disability.

These in-person or online support groups are vital connections to the world for many patients and their loved ones. Don’t wait to join a group, make some friends who have been or are in your shoes, and remember that you’re never alone. And if you are not finding the group you want, why not start one of your own?

Lists of local support groups:

https://www.apdaparkinson.org/resources-support/

https://www.parkinson.org/your-area

https://www.pmdalliance.org/resources/support-groups/

https://parkinsonsocialnetwork.org/community/support-groups/