In late summer we published the experience of a brave team of nurses and technologists, that co-designed an app for kidney patients together with patients. Today we bring the story of a stroke patient, whose recovery experience lead to an app to help others to recover from a stroke. A true case of patient co-creation driven out of the insights of his patient experience. Here is the remarkable story of David Festenstein, told by himself.
By David Festenstein
A young fit man without any disposition to Stroke
In August 2008, I’d not long returned from a Professional Speakers Conference in New York, when I had a stroke, which paralysed the right side of my body and left me unable to walk. I was a young fit man, married with two children. I ate well, didn’t smoke, drank little, swam most days and kept an eye on my weight.
Language of recovery
I am a Communication Specialist and Coach, so I knew that to deal with this from a mindset point of view, was going to be critical to my recovery. While in hospital, I kept a diary and journal where I noted down what worked for me and what did not, as I strove to make progress each day. I was curious to note, that if I chose certain ways of thinking in my head and the way I spoke to carers and the medical team about my current situation, it made a profound effect on how I felt. It meant, I could deal with fundamental tasks, such as eating and supporting my carers in getting myself in and out of the wheelchair and going to the toilet. I called the language I used “my language of recovery”.
A hand that finally worked!
One of my first exercises was to work on my right hand, which was useless. I was told to visualize my fingers opening and closing whilst thinking, “I can do this!” With these regular visualization exercises, gradually, my right fingers started to flicker and after two weeks, I was able to open my hand completely.
My dream came true, my first steps!!
I continued to apply this technique to seeing myself walking, living a normal life back with my family and working again. So I ran a vivid film in the forefront of my mind every moment of each day. One night, I had a dream that I was walking, it was so vivid I pinched myself and woke up! I was so excited and told all the medical team I had walked in my dream. Four days later and with some help, I actually took my first few steps from the doorway of my room to the chair near by. A few days later, I could actually walk to the toilet, again with support but I had achieved one of my main goals!
“One of the best recoveries I have ever seen”
My Consultant came to see me towards the end of my stay in hospital. He was fascinated how I had applied my Communication Specialism and my Coaching experience to my stroke recovery. He believed there was a lot that health professionals could learn from my Patient experience, as it “was one of the best recoveries he had ever seen”. He said, that if they could understand the specific strategies I had used at each stage of my recovery, then maybe they could take these and pass them on to other patients; particularly those who needed to engage in the critical rehabilitation period following the stroke. He invited me to return to the Hospital once I was fully recovered and present my diary and journal to the medical team, so that they could get a greater understanding about what I was doing to support my recovery process.
My 7 Steps to Recovery from a Stroke
It was a real joy to go back and see the medical team in April of the following year. All those doctors, nurses, and physiotherapists who had looked after me so well. In preparation for the meeting, I went through my diary and journal and consolidated all the different techniques that I had employed during my recovery. In doing so, I noted that there were 7 distinct steps that I had taken to deal with the stroke event itself and then to support and drive my recovery.
After my presentation to the medical team, the discussion became very animated as they said that these 7 steps could apply to any form of severe health set back and not just stroke. My Consultant was very keen that I started to spread the word so that other Patients and health professionals could benefit from my learning, so he relinquished his speaking slot at a Stroke and Cardiac Network Conference so that I could start telling my story.
My “Stroke of Luck”
It really took off and I got more guest speaking invitations from the Stroke and Cardiac Networks, as well as running one day training and coaching workshops on my 7 Steps to Recovery. I really loved the work, so I called some of my presentations “My Stroke of Luck”. Firstly, because I had made such a great recovery and secondly, because the stroke had opened a wide horizon of opportunity to help others.
The work varied a lot, I was invited as an after dinner guest speaker at the University of Oxford at an International Seminar about The Fundamentals of Patient Care. This led to another piece of work with Oxford Brookes University in the Clinical health department where I was interviewed about my patient experience, so they could use the material for their student courses. Later on, I gave a specific lecture to the Faculty and Patients about my Patient Experience. (More about my talks and links to them are provided at the end of this post)
The Idea of the app is born!
I had been constantly thinking about ways to get my message out there and particularly those strategies, which could help others, so much. Following my work with Oxford Brookes University, a dialogue was established about making an app from my 7 Steps to Recovery. So, I was absolutely delighted when they were able to support its development. The idea was that it had to be very simple in structure and content, so that those who had had a stroke, would be able to navigate easily around the app and find the information easy to process. At the time, I was undergoing video training on how to convey messages effectively on camera, so I thought short videos would be a great way to do this. In this way, I would be the “coach in their pocket” to whom they could refer over and over again to help deal with the stroke and then to support and drive their recovery process.
Sharing with others to drive recovery within a Community
I had this idea that came very much from my own experience of using the stroke as a learning experience. I want everyone who uses the app to consider what parts of the app really help them and why. Then they can share this on a social medium of their choice as well as the Facebook Recovery Community page, which has been provided.
This way others who have to deal with similar issues can benefit from their learning and try the same techniques or behaviors to see if they get the same results.
Here are the outcomes I would like you to achieve from my 7 Steps to Recovery App
To have a technique whenever you are struggling, either with the impactof your stroke, or in the recovery process, to feel better which ultimately, will allow you to take action.
- To learn how to be grateful for what you have rather than what you have lost.To form a belief that you can get better or at least have a life after stroke
- To have a vision of what your life will look like after your stroke
- To be able to manage your mood during the journey of where you arenow, to where you want to get too. This helps to ease the frustration
- that you want to be better or get on with your life “right now”.
- To be able to cooperate with your carers and above all collaborate with your medical team.
- To understand the importance of following the process your medical team has given you and being diligent about doing your exercises, taking the required medication and resting. Of course, this is not to say you cannot question the process and request for it to be changed accordingly if it is not working for you!
Using the app if you are a Health Professional
It is my hope that Health Professionals will be able to take this app and find the specific parts of it that will help their patients “feel better” and take action. Then encourage the patients themselves to use the app along with their carers and loved ones so they get the best possible support using my techniques which gave me such great outcomes.
Downloading the app
The stroke recovery app is free of charge and can be downloaded at