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A recent online exploratory survey has asked if there are any ‘silver linings’ to Parkinson’s, and the results of that study have now been published.
Some individuals within the Parkinson’s community who are currently struggling with their condition, might find the question repellent and offensive, but they should know that the survey was initiated by a patient advocate who was seeking simply alternative views on how the condition is viewed and handled by others.
Rather than always focusing on the negatives, they were interested in learning what positives others have found with being diagnosed with a neurodegenerative condition.
Of everything I have read thus far in 2022, this report is one of the most interesting. In today’s post, we will look at what this exploratory survey found.
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It might sound very ‘middle class privileged‘ of me to say this, but we live in an amazing age of variety and opportunity. If you block out all of the negativity and noise in the world, and focus on the less appreciated things, you realise that we live in the best of times.
For example, while we were washing the dishes the other night, my wife introduced me to “Waldeck” (Klaus Waldeck – whose video is just above – you should press play). I have to admit that I was ignorant of him until that moment and I quite liked the music as a bit of background sound while we talked about the day and cleared away the dishes.
While scrubbing a particularly challenging pot, I momentarily lost track of what my wife was saying as I considered the instant availability of the music, and it made me think how truly lucky we are. All we needed to do was press a button and voilà! No matter how bad life gets, in the modern western world opportunities abound (and to put things in context for you – that particular day I had had two small pieces of cancer cut out of me).
Two centuries ago, the wealthiest people lived entire lives with few options and they were never exposed to the anything more than what passed through their village or town.
As hard as any of our lives are, there are more “silver linings” to be found in our situations now than any previous generations had.
Really?!? What about those of us who live with Parkinson’s? What are the “silver linings” of Parkinson’s?
It’s funny you ask, because recently some researchers and Parkinson’s advocates asked this question and the results of their exploratory survey have recently been published.
This is the report here:
Title: The silver linings of Parkinson’s disease.
Authors: Alonso-Canovas A, Voeten J, Thomas O, Gifford L, Stamford JA, Bloem BR.
Journal: NPJ Parkinsons Dis. 2022 Mar 3;8(1):21.
PMID: 35241670 (This report is OPEN ACCESS if you would like to read it)
In this paper, the authors wanted to determine if there were any upsides to having Parkinson’s. Clearly, no one is glad to have a debilitating neurodegenerative condition, but has anyone diagnosed with Parkinson’s ever found any previously unexpected and unacknowledged positives from having the condition?
It is obviously a provocative question, and it was initiated by one of the authors: Jos Voeten
Diagnosed with Parkinson’s in June 2016, Jos has been wondering what he can do to cope with the condition.
“Important for Jos is the definition of health by Machteld Huber, doctor and founder of the Institute for Positive Health. She defines health not as the absence of disease, but as ‘the ability to adapt and take control, in the light of the physical, emotional and social challenges in life‘. Viewed in this way, Jos does not see himself as ill at all, but as out of balance and focuses on what he can do to get back into balance as much as possible“(Source)
Based on this, Jos now lives according to 5 rules (Source):
- Exercise Naturally (since diagnosis Jos tries to move more).
- Reducing stress (he tries to reduce or even prevent stress as much as possible).
- Eat healthy and drink in moderation (He eats less meat and tries to eat smaller portions by stopping eating when he is about 80% full).
- Do things that make you happy (doing things that give you satisfaction is important)
- Seek support
But I am guessing that Jos was wondering how others deal with having Parkinson’s. And that he was curious to know if anyone has ever experienced any “silver linings” from being diagnosed with the condition.
And it should be noted that three of the other authors of this silver lining report also have Parkinson’s.
One of them is Omotola Thomas:
She’s lovely! Source: Parkinstand
In September 2011, she noticed a twitch in her right hand, but it wasn’t until 2016, at the age of 35, she was actually diagnosed with Parkinson’s. Originally from Nigeria but now living in England, she has turned her attention to helping those less fortunate by starting Parkinson’s Africa.
Another author on the paper is Larry Gifford of British Columbia:
Larry Gifford. Source: Michaeljfox.org
After being diagnosed with young-onset Parkinson’s in August 2017 (at the age of 45), Larry decided to apply his nearly 30 years of radio experience (he is currently the National Director of AM Radio for Corus Entertainment in Canada) to a new project: hosting the “When Life Gives You Parkinson’s“ podcast.
Regular episodes document his experience of living and working with PD. He also interviews interesting individuals within the PD community, and highlights useful resources for folks living with the condition.
It’s a good show – you should listen!
And like Omotola, Larry is also one of the co-founders of the PD Avengers and a key figure in the group.
The fourth individual with Parkinson’s who is an author on the Silver Lining report is Dr Jon Stanford:
Dr Jon Stamford. Source: Parkylife
Jon is in a unique situation: He is a “Gentleman Neuroscientist (semi-retired)” who spent decades in academic research studying the dopamine system and Parkinson’s,… and then went on to develop the condition.
And his research lab was in the same hospital where James Parkinson had done some of his training!
In addition to the authors with Parkinson’s, there were also two research scientists involved with the Silver lining study.
The first was Dr Araceli Alonso-Canovas:
Dr Araceli Alonso-Canovas. Source: Kiratas
Dr Alonso-Canovas is a neurologist who works at the Hospital Universitario Ramón y Cajal, in Madrid (Spain) and she is the lead author on this report, while the senior author on the silver lining study was Prof Bas Bloem:
Prof Bas Bloem. Source: Claudiabouwens
Prof Bloem is a consultant neurologist in the Department of Neurology, Radboud University Medical Center in the Netherlands. In 2002, he founded and became medical director of the Parkinson Centre Nijmegen (ParC), and with Dr. Marten Munneke, he went on to develop Parkinsonnet, an innovative health care networks for Parkinson’s patients covering all of the Netherlands which is fast becoming a template for other countries.
In 2018, he was awarded the Cure Parkinson’s Trust Tom Isaacs award for his efforts to engage the Parkinson’s community and getting them involved in research.
Here is a video of Prof Bloem describing his vision for the future of Parkinson’s care (video kindly provided by Parkinson’s NZ):
So that’s all the authors of the study? What did they find?
Well, firstly let’s look at what they did. Given the sensitive nature of the topic, they put out an exploratory survey to assess if the topic deserved further analysis.
They posted a video on social media (across various platforms including Instagram, Facebook, LinkedIn, and Twitter) asking folks to tell them about possible silver linings of Parkinson’s.
Here is the video:
They received 138 responses – 85% of which came from individuals who had PD. The rest were carers, family members, etc (interestingly, 9 of the responses came from neurologists).
113 (or 82%) of the responses included positive experiences, while 25 (18%) of responders denied any silver linings.
What were some of the examples of silver linings?
The authors wrote that responders gave examples like:
- a better focus in their life following the diagnosis
- establishing new relationships, activities, or interests
- healthier lifestyle, such as exercise or an improved diet
- assuming a role as an advocate for PD
- better work-life-balance, focusing on the important things
- better relationship with their spouse, family, or friends
- coping skills and self-esteem had improved
- heightened artistic/creativity skills
And some responders suggested no positives?
Yes. 19 (14%) responder indicated that there were no silver linings.
In terms of these responses, the authors wrote: “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” (Source).
Curiously, 6 (4%) responses provided neutral answers suggesting that PD made no difference to their lives.
This was just an exploratory survey, and to encourage further research on this topic, the authors proposed a more quantitative survey (which can be found by clicking here).
They think more research should be done in this area?
Yes, and they talk about this in the discussion of their report.
They also wrote: “We should not automatically assume that people with an advanced disease are less likely to detect silver linings, as many of us have witnessed compelling stories of physically severely disabled persons with PD or with other diseases, who were able to keep a positive attitude towards life and even attained a high quality of life, a concept known as the “disability paradox””.
Adding: “the disability paradox refers to the sense of well-being and life satisfaction that may be perceived despite disabilities, meaning that quality of life is more than health-related quality of life, and depends, beyond physical challenges, on the social, psychological and spiritual being” (Source).
And this got me thinking about one of my heroes: Mike Lloyd.
Mike Lloyd – legend. Source: Newshub
Raised in New Zealand, Mike was born with retinitis pigmentosa, a rare, genetic disorder that involve a loss of cells in the retina, resulting in the deterioration of sight. By age 30, he was unable to read printed text. Following the complete loss of vision, Mike joined Achilles International – an organisation that helps people with disabilities compete in mainstream sports. He himself has been an annual finisher of the New York marathon since 2007 (until 2020 when COVID prevented the event).
All of that sounds inspiring right?
Well, in 2012 Mike was also diagnosed with Parkinson’s (learn more about Mike by clicking here).
But he kept finishing the New York marathons.
For Mike, it is never about what you can’t do, only what you can do.
And he is currently demonstrating this with his latest venture: AccommodationZ
AccommodationZ is a social enterprise based in New Zealand that is helping everyone to find and enjoy short‐term accommodation that meets their personal, access or disability‐related requirements with confidence, integrity and freedom of choice.
It is basically an Airbnb-style platform for travellers with disabilities.
And Mike is the “Chief Vision Officer” for the company.
His deep knowledge and lived experience of the community he serves, and his problem-solving abilities enable him to take on this new challenge with enthusiasm.
Here is a video of Mike explaining the concept himself:
And Mike lives in a place called Tauranga – it’s a not a bad part of the world (certainly worth a visit when COVID is better tamed):
Tauranga. Source: Stuff
Never about what you can’t do, only what you can do.
I really respect that attitude.
So what does it all mean?
The origin of the phrase “silver lining” seems to be John Milton’s 1634 poem “Comus”, which the report reviewed in today’s post began with:
“To keep my life and honour unassailed.
Was I deceived, or did a sable cloud
Turn forth her silver lining on the night?
I did not err; there does a sable cloud
Turn forth her silver lining on the night,
And casts a gleam over this tufted grove.”
While typing up this post, I wondered whether the authors of the report reviewed today may have felt like they were treading on thin ice when they conducted their exploratory survey. Did they ever asked themselves if they had crossed some invisible line of decency and touching on something taboo. And perhaps they expected some really negative responses. Or were they simply interested to see how others perceived their situations and had noted some positives from having Parkinson’s?
Speaking personally for a moment – I found this report really intriguing. Long time readers will know that the author of this blog has a heart condition (in addition to collecting #£$!%#& basal cell carcinomas). One of the ‘don’t bother with a retirement plan‘ types of heart conditions. I’m not by any means comparing it to PD, and I also don’t want to say that it’s the best thing to happen to me, but it has given me a lot of clarity in my life. And like Mike Lloyd, I now only focus on things I can do something about. I don’t stress the other stuff. I also appreciate things a lot more – like rain on the face, time with family, the taste of chocolate, and the instant availability of music.
While my condition is not as debilitating as PD, a greater sense of appreciation for what I do have is my silver lining.
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After listening to a few tracks from Waldeck, I introduced my wife to the “Cat drinking milk” music – see the video below. You should click play (I particularly like the guy at the end – “Please believe you won’t leave in rhythm“):
She really liked it 🙂
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