“Parkinson’s disease is not a death sentence – it’s a wake-up call”

Interviews

Author: Jason SinclairPublished: 29 September 2022

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Both Mark Limebear and Michel Planquart describe the “blunt’” and “brutal” delivery of their Parkinson’s diagnoses. They tell us how they responded to challenges of the condition by launching No Silver Bullet 4 PD, an online support group that aims to help empower others in the community


UK-based Mark Limebear and Michel Planquart from Belgium met two years ago in an online nutrition seminar for people with Parkinson’s. Soon after, what started as a group chat for seminar participants to stay in touch developed into No Silver Bullet 4 PD, an online resource for people in Parkinson’s community.

Involving online discussion groups, guest speakers, YouTube seminars and podcasts, the resource aims to offer guidance on managing life with the condition beyond medication.

Mark and Michel tell us about their motivations for setting up No Silver Bullet 4 PD and what they’ve learned along the way.

How has living with Parkinson’s changed your life and outlook?

Michel: I was diagnosed with Parkinson’s at the start of 2020. The neurologist was quite brutal in delivering the news and immediately started to speculate about how many years I would remain mobile before I wouldn’t be able to function…

I used to be in my office at 07:00 every day, facing substantial responsibilities and stress. When I was diagnosed, I remember heading back to my office in the city with everything around me moving in slow motion. I realised that my life would be changed forever, but did not yet understand to what extent.

Since I stopped working, my days consist of managing my symptoms through exercise, meditation and nutrition. The silver lining of Parkinson’s is that it has allowed me to focus on the most important things in life, such as health, family and enjoying the present moment.

Mark: Parkinson’s cannot help but shift your focus. Gradually, symptoms impact your work, with concentration and focus becoming harder and apathy creeping in, and much of your energy spent on trying to hide symptoms instead of engaging fully… but you adapt. The shift toward working from home has allowed me to manage my symptoms and energy levels better.

My diagnosis in November 2014 was a very blunt process, with no real explanation or advice on how to manage expectations or where to find out more. But, from day one, I did not want the condition to define me as ‘poor old Mark’. It has given me new focus and certainly a better appreciation of how lucky I am.

What inspired you set up No Silver Bullet 4 PD?

Michel: After we met at an online Parkinson’s nutrition seminar in July 2020, Mark had the brilliant idea of contacting the participants and setting up a group chat to allow us to stay in touch.

We then started having meetings on Zoom and invited our first speaker in December 2020. It was around that time that we decided to call our small group No Silver Bullet 4 PD. The name reflects our belief that we need to take a holistic and multidisciplinary approach to managing our symptoms – there’s no single solution.

Mark: Michel and I hit it off, and it became clear that we had a very similar outlook – that there is so much more we can do to manage our condition than just take medication. So, we began sharing information and, organically, others joined in and the group grew, as did the sense that we need to share information with as many people as we can.

Michel: I’m convinced that people with Parkinson’s should aim to become well informed about their condition and be proactively involved in managing their symptoms. Parkinson’s is not a death sentence – it’s a wake-up call. My hope is that No Silver Bullet 4 PD helps our audience feel more empowered and gives people a broader perspective of their condition.

To that effect, the group invites fascinating speakers to join monthly Zoom sessions to talk to us about new research developments and ways to actively manage our symptoms.

Mark: We also now have a podcast so that the experts can be listened to on the way to work, in the gym or while relaxing.

What has been the most rewarding element of creating the support group?

Michel: The rapidly increasing number of registered participants to our events. There were 800 for the last one, and one of our YouTube videos has more than 20,000 views. Also, individual messages from people who have thanked us for giving them back hope.

Mark: For me, it’s been seeing how many people with Parkinson’s worldwide are learning from our expert speakers, and how they can change their lives by even small adjustment to their outlook or activity.

What techniques have you personally found useful in managing Parkinson’s?

Michel: I had never meditated before being diagnosed, but I now meditate every weekday. It helps me overcome anxiety and reduce my stress levels. Mental health is critical for everyone but probably even more so for people who have to cope with a difficult medical condition.

Mark: I think good nutrition, vitamins and supplements, daily exercise, attention to mental health and good sleep are all important additions to your prescribed medication.

It’s now more widely accepted that stress and anxiety have an effect on Parkinson’s symptoms, as adrenaline takes up what little reserves of dopamine that people with Parkinson’s have at their disposal, so tools to manage this are so important. Many get great rewards from daily yoga and other mindfulness techniques, such as the martial art practices tai chi and qi gong.

What have you learned through your experience of Parkinson’s?

Michel: I have learned that there are a lot of practical things that people with Parkinson’s can do to manage their symptoms – including focusing on exercise, meditation and nutrition. Furthermore, the medical profession tends to be rather siloed and will seldom give you the holistic approach that you need to be successful in trying to slow down the condition’s progression.

I would also like to say a word about the importance of the support provided by our spouses and partners. When someone in a family has Parkinson’s, it impacts more than just that person, and the patience and dedication of my fiancée are critical in my wellbeing and in my ability to manage symptoms effectively.

Mark: I’ve learned that there is so much more to Parkinson’s than medication, with interesting research going on as we discover how little we actually know about the condition. I am strangely grateful that I have Parkinson’s now and not 20 years ago.

A solid foundation of love and support from family and friends is essential, as there will undoubtedly be some darker days. I encourage people who do not have that support to connect with others in the community through online forums or local groups where they will find empathetic support.

Need to know

Michel Planquart, 56, from Belgium is the former CEO of a large financial broker. After he noticed difficulties typing and was diagnosed with Parkinson’s in early 2020, he left work to focus on managing his symptoms and spending time with his fiancée and three children. Based in Oxford, UK, he occupies most of his time with exercise, meditation and eating well, as well as managing No Silver Bullet 4 PD with Mark.

Mark Limebear, based in Buckinghamshire, UK, is 59 years old and married with three grown-up children. After working in property investment and development for more than 25 years, he was diagnosed with Parkinson’s in 2014. He says that the condition has “slowed [him] down” but that he is “not ready to stop yet and will keep trying to spin a few plates”. He enjoys skiing and playing squash and tennis.


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“Together we can make a difference”

Ask the expert: Parkinson’s disease and mental health

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