If you’re newly diagnosed and feeling doomed, or being kept up at night worrying about the uncertainty of Parkinson’s progression – you are not alone.
We have found one of the hardest parts of living with Parkinson’s is realising that it gets worse, and the emotional toll of this.
For a long time we pretended to ourselves that we wouldn’t get worse. We worried, even though we knew it wouldn’t help. And we tried to repress our worry, push it down, tried not to think about it, said we were fine even though we really weren’t. At times we’ve both been at the bottom of doom spiral wondering how to get back up. How to keep going even with the uncertain future we faced.
Its hard to know what is worse sometimes – this uncertainty or the reality of how progression really unfolds.
What helps
1. Everyone is different
What does help is knowing that progression is different for everyone. We are all affected differently and there is no set path or things that will or won’t happen.
2. Exercise
Through exercise we are both fitter and healthier now (on some measures) than we have ever been.
Symptoms change. Abilities change. And the good news is – it is possible to train many aspects of your physical health – from strength, to functional movement patterns, balance, and a broad range of skills.
3. Live in the now
Life with Parkinson’s can be still be fun, and bring you joy and purpose – even with progression. Life is progression after all. There is still so much you can still do. Half the battle is believing in this – in spite of all the evidence you might be feeling is stacked up against it. Appreciate the good in the now you have now!
4. Listen to our podcast!
We have found that finding laughter and community together has really helped us navigate the anxiety of progression. We hope that listening to it will make you too, feel less alone.
