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patient voice Ahlen

Ahlén, Henrik

Sweden

How old were you when you were diagnosed with Parkinson’s disease? What was your first reaction to the diagnosis?

I was 67 years old and somewhat shocked, as I had been exceptionally healthy throughout my life up to that point.

What were the first symptoms or signs you experienced before receiving a diagnosis?

My wife noted that I dragged my left foot on the ground and did not swing my left arm as much as my right arm. Also, I noted that I made more spelling errors with my left hand when writing on my computer keyboard.

How has living with Parkinson’s affected your daily life?

I am grateful that during these two years, it has not affected me very much, it is all still minor nuisances like stiffness, sensitivity to stress and a weaker voice. I have no tremor, but Parkinson doctors and patients can see that I have Parkinson's disease, but usually ordinary people do not notice.

Do you have anything — a habit, a thought, or support — that helps you when things get tough?

No, as I do not have difficult moments physically. As for mental wellbeing, I decided early on that I would not let my disease make me depressed; I still live a good life.

How did you get involved in the AI-PROGNOSIS project, and what motivated you to join the Patient Panel?

I have worked as an eHealth Strategist, leading development projects about digital services for healthcare providers and patients. In 2018 I organised a project called Co-Care, about developing smart applications for Parkinson patients researchers and doctors. Sara Riggare was also involved, so I have known her since then, and she invited me to AI-PROGNOSIS, which I think has great potential.

What do you wish more people understood about Parkinson’s disease?

The stereotype is still a very old man with crutches and a severe tremor. In reality, it is highly individual and affects people of all ages in many different ways. Importantly, it is not curable (yet) and progressive, but most people can live a rather normal life thanks to modern medications and selfcare.

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