A fictional day in the life
with Parkinson's, part 1

A contribution by Jürgen Zender

   

This day highlights the daily challenges and joys of living with Parkinson's. There are highs, the joy of activities like table tennis and playing the piano, and lows caused by the OFF phases. But with support, Therapy and a strong will, it is possible to lead a fulfilling life.

05:00 I don't need an alarm clock, my constant companion Parkinson doesn't let me sleep any longer. I open my eyes and immediately feel that I am in an OFF phase. My limbs are stiff and heavy, fatigue weighs on me as if I hadn't been able to sleep all night. Still, I drag myself out of bed. I take my Levodopa, my faithful companion, and go to the kitchen to have breakfast. A light breakfast helps me start the day.

05:15 I sit down at my desk. Mornings are my most productive time and I use them to answer emails and research and write articles for the local newspaper. The quiet of these hours helps me concentrate and be creative. I answer the numerous emails that reach me every day and plan the next articles.

06:00 My wife brings me a cup of tea. It's a small gesture, but it means a lot to both of us. We talk briefly about the day ahead and I enjoy this moment of peace with her.

06:30 I slowly drag myself back to the desk. The medication starts to work. I feel the stiffness easing and the tiredness slowly disappearing. It's like someone flips the switch. Suddenly I'm in an ON phase. My head is clear, my movements are more fluid. I put my gym clothes together and get ready for the day.

08:00 The nurse comes over and helps me get dressed and shower. On training days she accompanies me to table tennis training. This support is part of my level 2 care, which enables me to better manage my daily activities.

09:00 I meet my friends at training. Table tennis has turned out to be a real treat for me. It keeps me physically fit and mentally alert. Things are going well today, I win several games. The movements are precise and I feel strong and motivated. The thought of competing as a league player in the fall motivates me.

11:00 After training I feel great. The endorphins flood my body. Back at home I shower and sit at the piano. I started learning piano. It keeps my head fit and is occupational therapy at the same time. Practicing daily helps me improve my motor skills and gives me a sense of control.

13:00 Lunch with my wife. We enjoy a light salad and talk about the latest developments in the self-help group, in which I am particularly committed to the ever-growing number of young people suffering from Parkinson's. There is always a lot to do, but it also makes me feel needed and giving something back.

14:00 I'm writing a new article for the local newspaper. Today we're talking about the benefits THS and how it changed my life. Since the operation, my OFF phases have noticeably reduced and I need less medication. Writing helps me organize my thoughts and share my experiences. At the same time, I am preparing the documents for applying for a disability pension. Thanks to the support of the VDK, the bureaucratic effort is a little easier for me. This pension is necessary to ensure my financial security as I can no longer work full time due to my illness.

16:00 The afternoon fatigue sets in and I notice that I'm slipping into an OFF phase again. My movements become slower and listlessness overcomes me. I lie down on the sofa and take a short nap. It feels good to just close your eyes and let everything go.

17:30 Awakened and refreshed, I feel better again. A new ON phase begins. I play with my grandchildren who are visiting. Her energy is contagious and makes me laugh. We build together with Lego and I'm glad I can share this moment with them.

19:00 Dinner together with the family. My three adult children are often busy, but we try to get together as often as possible. It's these moments that give me strength and show me that life can be beautiful despite Parkinson's.

21:00 After a long day, I sit back at my desk and answer emails from support group members. Exchanging ideas with other affected people is important to me. It's good to know that you're not alone and that you can support each other.

23:00 Bedtime. I take my last dose of levodopa and hope for a restful night. As I fall asleep, I think about how grateful I am for the support of my family, my friends, and my doctors. Every day with Parkinson's is a challenge, but also an opportunity to experience life in all its facets.

23:30 Tiredness overcomes me and I drift off to sleep. Tomorrow is a new day and I am ready to embrace it with all its ups and downs.

Jürgen Zender May 30.05.2024, XNUMX

Stay tuned.


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