I have taken license with Rudyard Kipling’s poem “If” to help me make sense of my disease. Hope there is something useful in it for you as well:

“When”

When you can make some sense of your disease
As you try to see the forest among the trees,
Find the hidden sunshine – feel the breeze
And keep on moving lest you quickly freeze;
When you can walk and make the most of walking,
Improve your balance to prevent a fall,
Train your chords so you can keep on talking,
And focus on your core – it’ll keep you tall:

When you can set the bar at such a height
That challenges the apathy you feel,
The body, mind and soul you set to fight
And treat it like it’s not a massive deal;
When you can use reward to motivate
And train the brain to change the way it thinks,
So you can keep the effort up till late
Ensuring that your purpose never shrinks:

When you create and never cease creating
Changing ways to make a better you,
Then find a passion that is stimulating
A purpose that will always stay so true;
When you can find a way to work this out
And sift through all the options that are there,
When you can earn respect so they don’t shout
And show it’s not just them that have to care:

When you can free yourself from any stress
And organise your life in such a way,
Suppose you do it now – avoid the mess
And make the most of every single day;
When you can share the things that you have learnt
With those that live with Parkinson’s disease,
Satisfaction with your life is what you’ve earned
And then you’ll see the forest, and the trees.