In this instalment of our Real-World Series, we had a talk with Andrés Hibjan, an active member of Asociación Parkinson Madrid. As an engineer and adventurer, he treats his Parkinson’s diagnosis as a lifetime journey to an unknown destination. Using his technical knowledge, he tries to track and research his symptoms to improve his own condition and share his findings with colleagues and friends.
When did you get your diagnosis? What has the journey through therapy and disease management been like since then?
I was diagnosed with idiopathic Parkinson’s in August 2024, and since the diagnosis, my lifestyle has dramatically changed. Before I got the diagnosis, I spent several years under a psychiatric protocol due to my depression, anxiety, and apathy. These symptoms were all indicators of early Parkinson’s, but as I had no typical tremor or other physical symptoms, I got misdiagnosed. Getting the correct diagnosis was eye-opening.
As a person who did extreme sports involving a lot of mobility and strength, it was very difficult to deal with the lack of physical activity brought on by the Parkinson’s treatment. This new path I suddenly found myself in encouraged me to focus on slower movements and balance as compared to my previous dynamic approach to physical activity.
What are your preferred pastime activities? Have they changed since being diagnosed?
Once I got the diagnosis, I started doing some research and learned that besides following my treatment protocol, it would be very important to improve my diet and keep physically active to improve my quality of life. As Parkinson’s has impacted my mobility, I can’t continue with the vigorous sports I did previously.
Last year, to help me stay active, I started simple, long-distance walking, seven days per week. Once I felt stronger, I incorporated static cycling twice a week, as well as outdoor trekking and indoor swimming. Within a short period of time, I was able to walk 350-400 kilometers a month, and a couple of hours of swimming and cycling.
Keeping physically active had a dramatic impact on my quality of life. My stamina and mobility started to recover, and my mood improved. To keep my brain engaged and aid my cognitive skills, I read books every day and stay informed on the latest Parkinson’s research.
Have you faced issues with fatigue and sleep disturbances? If yes, have you used any digital tools to help you monitor and manage these symptoms?
My fatigue and sleep disturbances are interconnected. To manage my fatigue, I stick to a fixed daily and weekly schedule of activities as much as possible. This “distracts” me from my lack of energy at times. Regarding sleep disturbances, respecting my circadian rhythms and being physically active has been a great help.
Now, I am focusing on managing my consistently fragmented sleep. Recently, I enrolled in a relaxation workshop, which I am hoping will give me some tools to improve my sleep quality.
How did you get involved with Asociación Parkinson Madrid (APM)? How has this involvement supported you in your journey with Parkinson’s?
When I was a young professional, a wise man gave me some great advice: “If you want to develop a skill, get involved in an organization that improves your knowledge”. When I got diagnosed with Parkinson’s, I knew I was facing a lifetime journey. The Asociación Parkinson Madrid seemed like a natural ally to help me face this challenge. At present, my involvement with the organization is expansive: from clinical trials and volunteer activities to sport and leisure gatherings and health workshops. This active involvement has helped me embrace my own “Parkinson’s journey”.
How has your involvement in research improved your quality of life?
A few months ago, I enrolled in a medical trial designed to measure the impact of high-intensity training on patients with Parkinson’s disease. This includes assessing the effect of training on coordination, balance, and cognition. The trial showed great results of physical activity on all these parameters, and I will continue to stay as active as possible. The next step for me would be to work on addressing my fragmented sleep and insomnia.
Have you taken part in the IDEA-FAST study? If yes, 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 participated in the IDEA-FAST Clinical Observation Study with the suggestion and support of APM. When I initially learned about IDEA-FAST and this study, the idea of continuously tracking my health outcomes caught my attention. The insight I gained from the study gave me the opportunity and tools to learn more about my condition and manage it better.
PD is a very hard and complex condition to treat – each patient has a non-replicable combination of symptoms and disease progression. Learning how to use health data and biomarkers to understand the mechanisms of sleep disturbances and fatigue in PD offers medical professionals the possibility to provide a better quality of life for their patients through this journey.
Do you have any positive experiences, achievements, or personal growth you’ve experienced despite the challenges of your diagnosis?
The diagnosis gave my life a new goal. It encourages me to embrace and pay more attention to my body every day, being mindful with each simple decision, to slow down my Parkinson’s progression.