45 and counting

stock-photo-14302068-45th-birthday-candlesIt was my birthday last Friday, on the 19th of February. This year I turned 45 and was honoured, grateful and very happy for all the birthday greetings that came flooding in from all corners of the world via Facebook. On days like that I really love social media. I had a very good day with productive work meetings and a very nice “fika” (one of the most important Swedish words and concepts, if you don’t know what it means, check out Wikipedia) with my colleagues and a “kladdkaka” baked by my daughter and her friend. The evening was spent at a bowling alley with family and friends. On the whole a very nice birthday!

When I was in my early teens, like all teenagers, I thought people in their 40s were ancient. Strangely enough, having reached that age myself, I still feel sort of young. But I guess it is just another piece of evidence that Einstein was right: time is relative.

Honestly though, living to see 45 is not really impressive these days, when the average life span for women in Sweden now being 84 years. What impresses me however, is how my body still keeps hanging in there.

I’ve had Parkinson for over 30 years now, and I have been told that I make it look so easy. I am actually not sure if “making Parkinson look easy” is doing myself or the Parkinson community any favours but I am not doing it on purpose. Because I can assure you that it is not easy, managing Parkinson takes a lot of hard work. And I have come to realise that all the medicines  I take, see pic below,  are not enough.

My meds for one day.

My pills for one day. The first column is my early morning dose, the second is for late morning, the third is afternoon, the fourth is early evening and the last column is for late evening.

The longer I have Parkinson, the more convinced I am of how essential it is to stay physically and mentally active. The mentally active part has not been a problem so far, I love challenging my mind in discussions, riddles and puzzles. I also love knitting, which is said to be good for your brain and even decrease the risk for dementia.

Staying physically active with a difficult disease like Parkinson is however very challenging. Ever since I couldn’t keep up with my mother and brother when we went cross-country skiing up north when I was a teenager, I have been struggling to keep physically active. None of us had any idea then that my inability to keep up was caused by a neurodegenerative disease and I was perceived as “lazy”. I didn’t know what was wrong but it was very frustrating when my body didn’t work and I cried a lot when I couldn’t keep up.

Nowadays I am almost painfully aware of the importance of exercise.  If for some reason, be it a bad cold, travelling or a busy schedule, I am unable to get my dose of treadmill walking, I know it will take a lot of work to make up for it. Parkinson is also a very unpredictable disease, some days, with no apparent explanation, nothing works and I spend the day moving very slowly and trying to find a comfortable way of sitting or lying down. Fortunately days like that are few and far apart… for now.

This is why I am so very grateful that my body still responds well to me constantly pushing it. Pushing towards and beyond what I thought possible… over and over again.

It takes a lot of really hard work to make Parkinson look this good!

Photo from my presentation at the half-time review of my doctoral studies, taken by Hiba Mualla.
Photo from my presentation at the half-time review of my doctoral studies on 5th June 2015, taken by Hiba Mualla.

4 comments

  1. Beautifully wriitten Sara. I believe that it is your positive attitude and determination that drive your special self-awareness skills. These have provided you with an excellent logical memory that recognizes differences in your body and mind. Keep using these inherent diagnostics skills to further the Parkinson cause for yourself and others.
    On your life line, I had perhaps my best 30 years and then was dxd at 46. I’m 20+ y ears into Parkinsons and you are my youthful teacher. Thank you, my dear friend.
    Happy birthday!
    🙂 Ryan

    1. Thank you Ryan, you are the lighthouse of encouragement in the world of PD, always a kind word to give! Love from your admirer!

  2. A friend of mine has lupus. Another 40 something woman with an “invisible” disease. When people tell her she doesn’t look or seem sick she replies “thank you. I work very, very hard to achieve that.” Here’s to the women who make it look easy. Happy birthday!

  3. Beautifully written. Please don’t ever stop doing what you are doing, you look fabulous.
    Hang in there because there are amazing clinical trials going on all over the world, I am one of the human guinea pigs, but I also really believe in positive thinking.

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