Learning through observations

When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they tell me I have an incurable, neurodegenerative disease…?

I felt like I was inside a black hole and thought I would never smile again. However, with a baby in the house, the smiles came back and I started to live again. Slowly but steadily, I was able to understand more about this strange disease and even more importantly, I was able to understand the features of my own particular flavour of Parkinson’s.
Because, as we all know, Parkinson’s is highly individual in nature and my specific combination of symptoms are probably more or less unique to me.

What I found was that by more consciously observing myself and my symptoms and especially the effects my medication had on me, the more I learned about the variations and patterns of my disease. And the more I knew about the variations and patterns of my disease, the more I could understand what made the symptoms worse, what made them less troublesome and how to get through difficult periods when nothing seemed to work.

Almost 10 years have passed since my diagnosis and every day holds challenges due to the disease (and of course also challenges completely unrelated to the disease). Nevertheless, I truly believe that I am in better shape than I have ever been, both physically and psychologically. And maybe it is all self-deception, but who cares as long as it works 🙂 . I make an effort to see good things in what I experience every day and I am very happy to be able to do all the things I do and all the fantastic people I meet. Of course, not every day is great and of course there are people I wish I had the time to meet more often than I do, but that is no different from most everybody else.

The more I learn and acknowledge my own personal challenges, the more I can take them into account when doing my best to navigate the interesting ocean of life.


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3 Replies to “Learning through observations”

  1. Thanks for that thoughtful piece. I am only the wife of a PWP but I can agree with so much of what you have said. My spouse has been diagnosed for almost 10 years now and I too think his is better shape that he has been for a long while. He keeps quietly positive, doesn’t pin too much hope on a cure, keeps active and is motivated to just keep going to enjoy the day day reality of living with me, his family and friends. I like to think so much of his continued good health is related to the bike riding we do , less walking nowadays but even that too. We enjoy life and indeed without saying thanks to Parkinson’s, because that woudln’t be true, but we have definitely done things that we probably wouldn’t have done had he not got the disease. There is no special path through life and it is down to us how we take on the challenges. good luck Sara.

  2. By coincidence, I was thinking only today about how my own diagnosis had prompted me to do a few things *now* rather than later, and that this was, indeed, a good thing.

    1. Yes we have done many things that I am sure we would have delayed had my spouse not got Parkinson’s. For a start I gave up work at 52 with the Idea that it was better to spend quality time together rather than waiting for my retirement and then to spend that caring. Since then we have cycled in Europe and in the uk and this year we are renting a villa in Tuscany for us and our fAmily for a week. I am as sure as hell that rash/expensive decision would not have happened without PD. As I now reach retirement age we are still enjoying life and my care only stretches to concern my anxiety and all the driving. My husband is amazing and right now is in great health. We both cycled over 100k last week. Good luck to you Zalamander.

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