Janet
Sweden
How old were you when you were diagnosed with Parkinson’s disease? What was your first reaction to the diagnosis?
I was 58 years old when I was diagnosed with Parkinson’s disease (in the year of 2015). Even though I had been unwell for more than two years, I was shocked. I had denied it for so long time.
What were the first symptoms or signs you experienced before receiving a diagnosis?
I couldn’t swing my left arm and I dragged my feet when I walked. I also had a lot of back pain. I wrote in such small letters that i could barely read it and I spoke very quietly.
How has living with Parkinson’s affected your daily life?
On a good day I can live as usual. It’s good to have a plan for what to do if I start to walk poorly or become very stiff and immobile. I never know for sure what I will be able to do. Thankfully, I have far more good days than bad.
Exercise is medicine. I box, play table tennis and dance. This way i can keep my Parkinson’s disease under control for as long as possible.
I have made so many new friends through Parkinson’s disease. People you would never have met otherwise. We have different professions, ages, genders.
Do you have anything — a habit, a thought, or support — that helps you when things get tough?
Try new things: What’s the worst that can happen?? I am happy every day that I can get out of bed, get dressed or I’m taking a walk. I can also see and hear. Can’t be better.
Remember there is always someone else who has is worse.
How did you get involved in the AI-PROGNOSIS project, and what motivated you to join the Patient Panel?
One of my daughter’s exercises with one of the people who is involved in the AI-PROGNOSIS project. They talked about Parkinson’s and my daughter mentioned that her mother has Parkinson’s disease. When she found out that I have Parkinson’s, I was asked if I wanted to join the Patient Panel. I said yes without hesitation. I want to learn as much as possible about Parkinson’s disease . Most important, I want to know, how I can affect my disease.
What do you wish more people understood about Parkinson’s disease?
This is not a problem I have but I feel sorry for those who are affected.
Many people think that a person with Parkinson’s is under the influence of alcohol because they often have balance problem, slurred speech and the same movement patterns as an alcoholic.