Hi ho silver lining

What if Parkinson’s isn’t actually a curse, but a blessing? Talking about positives may give us all a better insight into managing the condition.

In the Disney animation Encanto, it’s refreshing to note that the heroine isn’t the girl with the long, shiny, Pantene-conditioned hair who lives in a room full of roses. Instead, taking centre stage is Mirabel, a sassy girl with big pebbly glasses and a colourful wardrobe of cotton separates.

Unlike the rest of her family, Mirabel has not been blessed with a ‘gift’. Not for her the talent of (for example) growing roses, baking food that heals all ills, or the strength to lift several donkeys at once. I don’t want to spoil it because I’d like you to see the film. Let’s just say that it’s set me thinking:

What if the lack of a gift is the gift itself?

And then – in the context of Parkinson’s – what if the lack of dopamine is something to celebrate rather than fear? So many good things have happened to me since the summer of 2019 that wouldn’t have happened without a diagnosis of Parkinson’s.

Other people have noticed this, too. Writing in the fabulous Facebook group Parkinson’s Exercise in Action, Katja Gutzeit, 47, from Heidelberg says:

“I am blessed… This may sound strange coming from someone who suffers from an incurable neurological disease. But that’s how I feel… blessed… not every single day, of course, but the basic essence of my life consists of that feeling. And that of great gratitude.”

Silver linings

Now this phenomenon has been observed in a Nature journal article, The silver linings of Parkinson’s Disease, it’s too good not to look into.

It began when one of his patients asked Dutch neurologist Bas Bloem if there was an upside to Parkinson’s. Professor Bloem’s immediate response was ‘no’ – but on reflection he decided that only people with Parkinson’s (PwPs) could answer the question. He posted a short video on four social media channels.

He said:

“I think if we collect all that information and cumulative experience about the possible silver linings, we can share that knowledge together. I think it would be a beautiful volume of information that can provide hope, comfort and support to the billions of people with Parkinson’s around the world.”

Of 138 answers received, 113 (82%) reported positive experiences, which included:

• a new focus in life
• better self-esteem
• better work-life balance
• better coping skills
• new activities, new friends and new interests
• healthier lifestyle
• improved relationships with relatives and friends
• becoming an advocate and supporter for other PwPs

I can identify with all these reasons to be cheerful.

More creative

The authors also reported:

“A final silver lining related to a perception of increased creativity and heightened artistic skills, which had emerged following PD diagnosis. For at least some of these latter individuals, the effects of PD medication may be responsible, as a latent talent can be unveiled or enhanced by the dopaminergic stimulation.”

Yeah! Keep those meds coming then, because for me this is the best silver lining of all. Parkinson’s, with its pot pourri of weird symptoms, provides a rich seam of content to fuel my writing. I am never short of ideas, just the time to get them all down.

Katja agrees:

“I am blessed because I have found a way to cope with the disease. Writing, writing, writing. About fears and hopes alike. About ups and downs. About my need to challenge myself and my experiences with it. With writing, I discovered a way to confront the disease and stand up to it. If that is not a blessing!”

One-size-doesn’t-fit-all

I appreciate that not everyone feels quite as upbeat as I do, and that my cheerful, jolly-hockey-stick approach to life with a chronic condition may be a bit over the top.  In the study, 19 PwPs said their life was worse after diagnosis, and for six people it was neither better nor worse.

The authors recognise this:

“These negative answers are in many ways understandable: these people indicated that they had never asked for PD, that the negative influence of this disease could be felt every day of their lives, and that all they wished for was a cure.”

They also admit the limitations of this study:

“This small web-based survey, with an only limited time window for providing answers, only allowed us to reach a biased minority that is relatively more active on social media.”

They are working on a new questionnaire to reach more people.

Blessings for everyone

Talking about positives as well as negatives may give PwPs and health professionals a better insight into managing the condition. And why stop at Parkinson’s? People with other long-term conditions may benefit, too.

Play > Hi ho silver lining > Jeff Beck

Main picture: Roel Balingit, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons