Long Term Parkinson’s Strategies

What I see as the cruelest aspect of this disease is when a patient accepts and allows that their symptoms isolate them from life and therefore live in “otherness” leaving so called healthy people to carry on without them.

For Andy and me, Parkinson’s has been part of our lives for 18 years.

It’s interesting how living with this disease mirrors other life challenges in some ways. There are harder and easier issues that cycle in and out. When life gets too hard, we have to reach out and ask for help. When life is flowing along- when we have successes or milestones to celebrate-we also reach out to share our joy.

The main thing is to allow ourselves to participate in life without succumbing to the idea that Parkinson’s separates us from people and keeps us out of a world that lives mostly without Parkinson’s.

Only a fraction of 1% of the world’s population lives with Parkinson’s but ALL people have some sort of challenge that affects their lives with issues “most” people don’t have.

As one who lives with Parkinson’s as a caregiver-not a patient- one of my primary jobs is to help Andy participate in the world and with people, instead of withdrawing. The benefits are life saving but do require a willingness to risk being viewed and treated as odd.

What I see as the cruelest aspect of this disease is when a patient accepts and allows that their symptoms isolate them from life and therefore live in “otherness” leaving so called healthy people to carry on without them.

When Andy participates with people and in the world, the benefits are enormous- for him, for me and for the world.

Andy chooses life as he rebuilds his ability to use a welding torch to make bronze jewelry. He has to relearn the skill he used for 30 years. As he sits in our workshop, that was made especially for his present needs, and flows bronze into shapes, he is affirming that the world hasn’t lost him yet. We don’t know if he’ll be able to make something saleable at the art show we will do in December, but 45 years ago when we first set out to learn to weld, we didn’t know that either. It’s not that different.

For me, I receive the gift of having my husband be a participator instead of only a witness to life.

Parkinson’s turns a body into a witness and fighting to be a participant is one of the ingredients for healing.

The world benefits because there is a human being in a small workshop, deep in a high mountain forest, who has not given up on themselves.
Don’t ask me how the “world” knows this but ask yourself if knowing this makes the world a little bit better for you?

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