The Value of Support Groups

When I was diagnosed with Parkinson’s, I knew I needed help! There was so much to learn and process. From a previous experience with an autoimmune disease, the value of support groups was apparent to me.

What are they?

A support group is just what it sounds like. Those who share similar experiences, interests or conditions come together to share information or concerns. Sometimes it’s just to commiserate. The feeling of belonging and being understood by others that share the same challenges can be invaluable.

There are many support groups available and they serve various needs. Some are more social while others may be more informative. After researching what is out there, I chose to belong to several groups.

You may wonder, what type of support group will be of value to you. There are a variety of different types.

Finding a group

When I was first diagnosed with Parkinson’s in August of 2020, I joined a local group. It consists of members who have recently been diagnosed. Due to the pandemic we met on Zoom bi-monthly.

Unfortunately we stopped meeting in October. We just began again this week. Generally there is a topic for discussion, a moderator and occasionally a guest speaker. Twice a month may be sufficient for many.

American Parkinson’s Disease Association (APDA) is very helpful in locating a local support group for you. Their site also lists local events and fundraisers in which you may choose to be participate.

Online support

There are a vast number and types of groups online. It may take a while to find one that suits you. Most groups include all aspects of support.

Some are stronger in one area than another. All these descriptions reflect my personal opinion. I do not consider one more useful than another.

What is the value?

Although I have gotten a lot of practical tips from one online group, it is far more of a social forum. Posts tend to include updates on our lives and activities in addition to our Parkinson’s issues.

It serves an important purpose during this time of social distance. Getting to know some participants who feel like friends and family has been rewarding. A few of us communicate through private email as well. The site, MyParkinsonteam.com, is one I visit almost daily.

Informational groups

If you are seeking information and advice, The Davis Phinney Foundation offers many resources including a free book and worksheets. You can listen to many member’s stories, find exercise videos for all levels of mobility and access webinars.

The Michael J. Fox Foundation is similarly rich in information regarding research, progress and affords the opportunity to sign up for possible inclusion in a clinical trial. A Buddy program is a part of the format.

I find everything I am looking for in an easy to navigate format on the ParkinsonsDisease.net site. There is always a response to my questions in a friendly and informal conversation.

Without these readily available resources, research would be overwhelming. I encourage anyone who has not considered being active in a support group to do so.