As I sit here having been awake since since 4.30 my hands are shaking badly again, the brain fog is coming in and my temperature is starting to rise – meds needed for the second time today! Will be back shortly….

Meds, tea and toast on board

Normality is restored again phew but got me thinking. I’m 46 nearly 47 and my version of Parkinson’s Disease is showing no signs of plateauing. In every case Parkinson’s is progressive but some progress quicker than others. Also, progression of the non-motor symptoms such as anxiety/depression, insomnia, digestive issues such as swallowing inability or severe constipation are more difficult to express and for those people my heart goes out to you because to be trapped in a body that is slowly breaking down is painful and very easily one can feel lost in the life that they used to know. This is why awareness of this multi system disease is vital. For me, however, yes I struggle with anxiety/depression amongst other things but my main issues are linked to my motor functionality. My body can change from being like a mill pond to a raging storm out at sea and this is only going to get worse with time. For me currently the answer is medication and lots of it! I worked out that I take on average over 3,300 tablets of one type of drug I consume every year….staggering!!! I am thankful that there is a drug that enables me to function albeit jerkily with windows throughout the day but still it is a lot and where will this end?? I am very aware also that I am courting and teasing dyskinesia in a serious way now by consuming so much levodopa. I do experience over movement for a brief period of time after each med dose but this usually goes. The thought of dyskinesia getting a grip worries me and this has brought me to the stark reality that I am going to have to take control and make some pretty big decisions in the near future.

Game changer take centre stage and say hi

Deep Brain Stimulation or DBS as it’s more commonly referred to. At my last hospital appointment it was suggested to me that this procedure would be a very wise move for me and would give me a good 10 – 15 years. It is important to say that in no way does DBS halt progression of PD but it can greatly mask the motor symptoms. How amazing would this be! I would be able to wake gently each morning instead of the frantic thrashing arms that I currently have. I wouldn’t have to plan every aspect of my daily living around when I was expecting to be on or off. Oh how I miss the fluidity of life.

A lot to get my head around

The thought of DBS is difficult though because when the brain surgery is carried out I would be awake and every instinct within me says Noooooo! But I’ve seen the amazing results and I want that too. In reality this year is crammed with life stuff….house renovations, family etc but I do believe that I will be having an introductory talk next year and who knows it could happen soon after. For now though I will continue on as before and try inspite of the disease make each day count as much as I can, afterall, there is always someone somewhere worse off and I still have much to be thankful for.

Thanks for reading as always x