Workshop and podcasts for strengthening peer support

Digitalisation has increasingly shifted peer support to online platforms and mobile applications. Healthcare professionals play a key role in guiding patients to reliable digital services and supporting the development of their digital skills. In Finland, one example is the Toivo peer support app. Digital peer support enables people to share experiences and connect with others facing similar challenges. It can reduce feelings of loneliness, foster a sense of community, and provide practical advice for everyday life.

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.

Workshop in Tampere

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

• introducing participants to the Toivo peer support application
• 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 enhance participation, improve access to information, and foster a sense of belonging among people with movement disorders. While it does not replace face-to-face support, it serves as a valuable 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.

We listened to participants’ wishes and needs and created podcasts addressing those topics

Therefore, two podcast episodes were produced based on topics requested by the participants. The episodes explore how Parkinson’s disease affects close relatives, how individuals adapt to the diagnosis, and which factors support coping and well-being. They combine lived experience, peer support, and professional expertise to provide a well-rounded perspective on living with the disease.

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 serve both as informational resources and as platforms for peer support. They highlight that it is possible to live an active, meaningful, and fulfilling life with Parkinson’s disease. A positive yet realistic outlook, support from loved ones, and effective self-care can strengthen adaptation and enhance 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 the uncertainty began to fade. A close family member also shares their perspective and experiences as a loved one. As the interviewee reflects:

“Once I knew what it was, the uncertainty decreased. It became easier to start adapting and to think about how I would live with it.”

In the second podcast episode, a 52-year-old guest shares his experience of being diagnosed with Parkinson’s disease in 2017 after years of medical examinations. Symptoms such as insomnia, gastrointestinal problems, and a resting tremor in his right hand had begun several years earlier. Ultimately, receiving 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 emphasise 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 presented as a source of strength. The guests explain that they are now able to speak openly about their condition, and that their experiences have generally 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 emphasise that Parkinson’s disease is part of a person’s life, but it does not define their identity. They highlight the importance of understanding, acceptance, and treating people with Parkinson’s as equals.

Upcoming materials

More podcast episodes are still to come, featuring the experiences of working-age people living with Parkinson’s disease and Parkinson’s Plus syndromes, as well as insights from healthcare and rehabilitation professionals.

Peer-story videos highlighting the experiences of people with Parkinson’s Plus syndromes, along with family members’ perspectives on living with a spouse who has Parkinson’s disease, are also in development. In addition, a relaxing yoga video designed for people with movement disorders will be produced.