Workshop and Podcasts in Strenghtening Peersupport

Digitalisation has increasingly shifted peer support to online platforms and mobile applications. Healthcare professionals play a key role in guiding patients toward reliable digital services and in supporting the development of their digital skills. In Finland, there is a peer support app called Toivo. Digital peer support enables individuals to share experiences and connect with others in similar situations. It can reduce feelings of loneliness and provide practical everyday tips. 

Digital peer support provides:

• The opportunity to share experiences regardless of time and place
• Emotional support and practical tips
• A way to reduce loneliness and increase adherence to treatment

The workshop was organised in Tampere, and the purpose of the workshop was:

• Introducing participants to the Toivo peer support app
• Increase information about the app’s capabilities
• Collect development ideas from the participants related to the Toivo peer support application

The workshop demonstrated that digital peer support can strengthen participation, access to information, and a sense of belonging among people with movement disorders. Although it does not replace face-to-face support, it serves as a significant complement to traditional forms of support. 

As a development idea, participants hoped for concise information packages to support coping in everyday life, as well as concrete exercises, such as home exercises, balance exercises, relaxation exercises, and podcasts, which would support functional capacity and provide practical support. Participants hoped the podcasts would provide more practical advice and personal experiences related to daily life with the illness.

Therefore, two podcast episodes were made, featuring content requested by the participants. The episodes explore how the disease affects close relatives, how individuals adapt to the diagnosis, and which factors support coping and well-being. The episodes combine experiential expertise, peer support, and a professional perspective. 

The podcast episodes: 

• Gives a voice to people living with Parkinson’s disease and their loved ones 
• Describe the diagnostic process and related emotions 
• Share concrete everyday coping strategies 
• Discuss the importance of exercise and rest in symptom management 
• Highlight the power of digital peer support and openness 
• Offer hope and a realistic perspective on living with a chronic illness 

The podcasts function both as informational tools and as peer support platforms. They show that it is possible to live an active, meaningful, and fulfilling life with Parkinson’s disease. A positive yet realistic attitude, support from loved ones, and self-care can strengthen adaptation and improve quality of life. 

Personal Experience Brings the Disease Closer 

The first podcast episode features a person living with Parkinson’s disease who describes the emotions triggered by the diagnosis: uncertainty, concern about the future, but also clarity and relief as uncertainty faded. A close family member also shares their perspective and experiences in the role of a loved one. “Once I knew what it was, the uncertainty decreased. It became easier to start adapting and to think about how I would live with this.”

In the second podcast episode, a 52-year-old guest shares his story of receiving a Parkinson’s diagnosis in 2017 after years of medical examinations. Symptoms such as insomnia, gastrointestinal problems, and resting tremor in the right hand had begun several years earlier. Ultimately, the diagnosis was a relief. “My first thought was: great – there really is something wrong with me, I’m not imagining these symptoms. It was easier to face the illness once I knew what it was.”  

Exercise, Daily Rhythm, and Humor as Sources of Strength 

The podcast episodes emphasize the importance of an active daily life. In particular, strength training has helped ease muscle pain and cramps. Alongside exercise, the following factors were highlighted as key pillars of coping: 

• A positive outlook on life 
• A sense of humor and the ability to laugh at oneself 
• Adequate rest and recovery 
• Maintaining a daily routine 
• Recognizing personal limits 

The episodes stress that well-being is built from small, repeated actions — movement, rest, and meaningful moments. 

Digital Peer Support and Openness

Openness about the disease is seen as a strength. Guests explain that they are now able to speak openly about their illness. Their experiences have mostly been met with understanding. “The disease does not define me.”  “Treat a person with Parkinson’s as an equal. You can offer help, but don’t force it.” 

The podcasts underline the idea that the disease is part of life, but not the whole identity. Equal treatment and understanding are essential. 

More podcast episodes are still to come, featuring experiences of working‑age people with Parkinson’s and Parkinson’s Plus, as well as insights from professionals.

Peer‑story videos featuring individuals with Parkinson’s Plus and family members’ experiences when a spouse has Parkinson’s disease are also forthcoming. In addition, a relaxing yoga video for people with movement disorders will be produced.

Stay tuned!