I need a change, I really need a change

I have found myself really struggling for quite some time now. Struggling to move smoothly, struggling to stay positive, struggling to keep going. And I have realised that it is time to change things. I need to increase my medication. Of course it is a sign that my Parkinson is progressing and of course that insight is not a pleasant one but I knew that this day would come sooner or later and almost 3 years on the exact same dose must probably be regarded as a long time in Parkinson’s.

It never ceases to amaze me, the profound effect that dopamine has on me, or rather, the effect a lack of dopamine has.
The slowness of movement, from the outside probably perceived as me moving in slow-motion and from the inside experienced as every single step requiring an effort of almost ridiculous proportions. The frustration of the mind, not seen from the outside, but from the inside experienced as a storm of thoughts contained in a confined space, stumbling over each other, all trying to find the space they need to develop.
And then the relief when the medication kicks in, the fantastic feeling spreading through my body, when my muscles can relax properly and work in sync again. The surge of joy through my brain when I don’t have to use 90% of my concentration just to keep going in the intended direction any longer but instead actually can walk and talk simultaneously again (Hmmm…. makes me wonder if the body-builders back in the 80’s all had Parkinson’s…..?).

I have been lucky enough to have been very well medicated for such a long time that I had in fact almost forgotten this feeling of hopelessness. And I truly hope that I will be able to forget it again soon. Because starting tomorrow, I plan to increase my medication, and I will monitor the effect very closely using a tapping test on my iPhone. I have spent some time collecting base-line data on the effects of my current regimen, see below, and it will be interesting seeing what the effect of the change tomorrow will be.


  1. Great post Sara, you are inspiring many others! And, even more important, you are spreading the insight that you yourself can be engaged in determining your medications, track and analys what works best for you.

    The global health care sector need to adapt to and encourage this!

  2. Sara, you are so honest with your feelings and experience! That is so good beacuse it increases the understanding of your fight and a lot of others daily fights with their bodies. I have so many close to me that have an unaligned body with thier brains…. But overall, it makes me sad how tough it is for you. Keep on!

  3. Thank you Sara for describing ‘struggling” so vividly. It is graphic and I recognise the life I have lived for months now. There is something in shared honest accounts from fellow patients which encourages and affirms other pwp . Like you I am fighting the need to increase meds. Like you I have a fine neurologist who listens and empowers me. I will follow your entries – I think I will have a clearer understanding because of your generous honesty. Thanks

    1. Thank you Liz, for reminding me that I am not alone in this. A good neurologist is unfortunately hard to find for most people and I dread the day mine will retire…

  4. Thank you. Thank you. I just read your post and forgot for a moment that I DO NOT have Parkinson. It felt like you were describing the struggles of life itself. You search for understanding, control and willingness to dictate or anticipate certain outcome is amazing.not only a blessing for Parkinson

  5. Sara you are such a dynamic person with so much drive and enthusiasm and commitment to the world of Parkinsons .Thank you for sharing such an honest insight into the world of Parkinsons .This condition is not understood by the vast majority of the people in the world, however it is people like you with the courage to share their experiences will that have a huge impact on raising global awareness.
    Thank you

    1. Thanks a million Mags! If I can contribute in any way to increasing awareness and understanding, I am very happy!

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