Find your tribe...

It is so important that you feel you have people you can readily turn to - people who will meet you where you are, without judgement, and be willing to walk the road you are on, be by your side. People who can laugh with you and also cry with you. People who fill you up and help you out. People who ask searching questions and want to hear the answers. People who are not afraid to care, who face the fear and are willing to be burned by it. People you click and connect with. People who really ‘get it.’ People who don’t keep a score. These are your tribe.

Your tribe members might come from the Parkinson’s community, they might not. The vitally important thing is that ‘they get it’. They are the people who really understand your situation. The people who allow you to be in that place, who show compassion and understanding and support you there, where you are, rather than trying to jolly it all away and make it all alright with a few hearty words of encouragement and positivity.

The chances are that the ‘jolly-along-ers’ are not people you need in your tribe

Being positive is a vital tool to have in your kit, but the chances are that the ‘jolly-along-ers’ are not people you need in your tribe, even though they might be good and longstanding friends. The jolly-along folk are not really able to be there with you; the jolliness is a safety mechanism on their part, a kind of denial that keeps them at a distance from the truth of your pain and difficulty and degrees of challenge. They are not able to meet you where you are because of elements of their own story that get in the way. That's fine, they can still be your friends and you can still enjoy their company, but they will not be part of your tribe.

A safe space, a real face

Your tribe members provide you with a safe space, a place of trust and confidentiality where you can laugh, cry, rant, rave, joke, despair, hope, repair. Your tribe members should recharge your batteries, not leave your spirit feeling drained and your voice unheard. They provider a 'safe container' for anything you need to say, and you know it won't go any further.

Life with Mr P requires putting on so many brave faces. Your tribe is where you don’t need those faces, indeed where you are helped to put down the masks and show the real you and the real face of life with Parkinson’s. And your tribe is where you find the strength and the courage to put those masks back in place again and carry on.

A place of trust where you can laugh, cry, rant, rave, despair, hope, repair

Who’s in your tribe?

Take stock. Who replenishes you? Who looks out for you? Who is not afraid to ask how things are - and wants to hear the answer? Who can laugh like a drain at the absurdities of Parkinson’s and also cry with pain? Who allows you just to be you? Who is compassionate and understanding and willing to challenge and support and question? You might only have one person truly in your tribe, but that’s fine, they are a gem and a treasure and worth their weight in gold. Your tribe members might be virtual, they might work with you, they might be a family member - there’s no single source, no right place to find them. They just need to get it, and get you.

Your tribe members might be virtual...They just need to get it, and get you