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The Parkinson’s Tribe

The dictionary says a tribe can consist of a community linked by a common culture and dialect. Sebastian Junger, in his book, Tribe, says, “We have a strong instinct to belong to small groups defined by clear purpose and understanding.”

In fact, we are all members of the Parkinson’s tribe. The day we were diagnosed, we joined. We were thrown together by the nasty and tricky behemoth called Parkinson’s. It makes no difference if we are in denial, are apathetic, or just overwhelmed… we are in the tribe.

Socializing with others in the tribe

You are now in the tribe. By “joining in” you will benefit yourself and others. Some studies suggest being social can be of help with cognition and memory. Studies aside, my experience is that being “out there” is a hell of a lot more fun. When I have some misgivings about attending an event, I try to push back. It is easy to stay home but I have learned if I can get out the door I will have fun and, more importantly, it is good for me. It is not unusual to have gone kicking and screaming to a dinner or party and have been the last guest to leave.

We must engage. The tribal members need connection inside and outside the tribe. Connecting within the tribe is easy. Support groups, exercise classes, and volunteering are fun ways to meet and learn from the tribe. Do it now. Do not wait. Parkinson’s progression is on the move.

Clans within the tribe

Within the tribe, there are often clans who have even more narrow common interests. There is a small group of people in a southern California community who are pushing back and helping themselves and others in the city. They come from a diverse background of teaching, business, and sales. They had nothing in common and didn’t even know each other two years ago. These kindred spirits are very involved in support groups, established a needed Parkinson’s website, are involved in Rock Steady Boxing, are Ambassadors for various Parkinson’s organizations, and peer advisors. The Parkinson’s tribe brought them together, and they are making a difference.

The tribe helps its members

Often we find that we start a project to help others and it turns we are repaid ten times over in some way or other. Almost all of us can do something to help the tribe. Sometimes you help someone without even knowing. For months I watched a lady (I will call her Grace) who came to boxing classes in a wheelchair and with a caregiver. Grace always had a smile on her face and did everything she could do considering her situation. Grace never stopped trying. She was an inspiration too many, and she didn’t even know it.

People with Parkinson’s helping people with Parkinson’s is a win-win for all. Maybe create your clan to pursue a volunteer opportunity. Look around your Parkinson’s community. For example, having coffee with another member of the tribe can be helpful. There is always something we can do to assist other members of the tribe.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dan Glass moderator
    2 months ago

    The one special thing about our tribe… we’re all happy we have this communal place, but we’re all working together to put it out of business. As MJ Fox Foundation says…. Our Mission Here. Until Parkinson’s isn’t.

  • robert R
    3 months ago

    My Brother Got Parkinson i don”t know to much about it he got stage on so my question would be is there a limit to what he should do as far as working or should he limit him self to do so much

  • Chris H. moderator
    3 months ago

    Thanks for your question, @robert-r! Good to see that you’re looking to gain more information for your brother. As far as limitations to what he should do – this is very individual, as everyone’s PD progresses differently. Many are able to continue working, while others aren’t. Has your brother been evaluated by a movement disorder specialist? If not, and you need help locating one, we have this article that can help: https://parkinsonsdisease.net/answers/find-a-movement-disorder-specialist/. In terms of stages, we have this article that explains what each stage of PD is: https://parkinsonsdisease.net/basics/stages/. Hope this information helps! – Chris, ParkinsonsDisease.net Team

  • Sharon Krischer moderator
    7 months ago

    Tom, beautifully stated. It is so true that we are a tribe. Thanks for sharing this

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