Since its inception, the heart of the IDEA-FAST initiative has been the involvement of patients in all possible facets of the project. To shed light on their participation and experience within the project, we will be presenting a series titled “Real World Stories”, a set of conversations with some patient representatives who have been involved in the IDEA-FAST journey.
Our first chat is with Ulli Funken, a member of our Specialist Advisory Board. Involved with Parkinson’s UK, he has been part of the IDEA-FAST project for years. He was diagnosed with Parkinson’s Disease almost 20 years ago, and since then has been a fierce advocate and avid participant in clinical trials and projects.
When did you get your diagnosis? What has the journey through therapy and disease management been since then?
I was diagnosed nearly 20 years ago, and I remember the exact day. It was the 4th of June 2005, a nice sunny day. It was quite unexpected, as my neurologist wasn’t a Parkinson’s specialist, so he was uncertain about the diagnosis and struggling to find the words. We wobbled somewhere between Parkinson’s and a brain tumour.
In a way, I am still not used to it. My wife has been my main point of support since the diagnosis and sheltered me from a lot of things, especially during the first couple of years. Eventually, I started to come to terms with it; I began going out more, even joined some chatrooms and local groups of people with Young-onset Parkinson’s. At the first group I joined, I was 45, while most people were over 70. There was not much overlap in the issues we faced with the disease, but it was kind of like looking into the future, getting a glimpse of what awaits me.
What are your preferred pastime activities? Have they changed since being diagnosed?
Everybody faces a different journey with Parkinson’s. I am lucky because even after 20 years, most people wouldn’t know that I have Parkinson’s due to my disease progression being very shallow. Still, I am not able to do the physical activities I used to do before, so I had to give up my more physically strenuous hobbies. I learned to do other things like tai chi, which has given me a great outlet for physical activity.
How did you hear about IDEA-FAST? Has it changed the way you handle your diagnosis, e.g., learning more about digital devices, your expectations about managing the disease?
I found out about IDEA-FAST through a local internet research group, a group of people who have Parkinson’s, constantly shared new research, and brought attention to scientists who were working on Parkinson’s trials. When I read about IDEA-FAST, I thought it seemed like an interesting opportunity, and I enrolled for the trials.
I haven’t had the opportunity to look at all the digital tools, only about half a dozen of them, and I am hoping by the end of IDEA-FAST, there is a good set of procedures and tools people can use to monitor sleep disturbances and tiredness, maybe even a process to manage this fatigue. The best part of being involved in IDEA-FAST is how many doctors are always assessing and supporting you. Having more people to talk to about your condition, you actually feel involved in making a difference.
What improvements do you believe could be made to support patients with similar health conditions?
It’s important for clinicians and clinical trial leaders to reach out to and support patients. Research projects should always be an open dialogue between the patients and the researchers, and unfortunately, this is not always the case. Being able to recognize these problems is the first step towards supporting patients and getting some clear results in terms of management.
How has your diagnosis changed your perspective?
When I first got the diagnosis, I decided I needed to do something big. One of my favourite pastimes has always been biking with my wife, so we decided to do a 1000-mile bike ride along the Danube with some friends.
If I hadn’t gotten Parkinson’s, I wouldn’t be where I am today, living in the countryside, renting out cottages. I became more daring because I needed something to keep me going. My diagnosis forced me to take charge of my life.
How do you envision the potential impact of IDEA-FAST on patients in the future?
IDEA-FAST isn’t the first research project I have been involved in. I first got involved in research about 10-12 years ago, and was even part of a phase I trial with 30 or 40 people back then. By taking part in research, I learned that nothing happens tomorrow; research is such a long process. IDEA-FAST will probably have an impact on patients decades from now, so I am not doing this for myself but for future patients. To me, it is still a mystery how far IDEA-FAST goes – it’s a mind-blowingly huge effort.
