Throughout this journey, I have tried to remain real and honest. That means for me that my Blog can sometimes be – if not negative – less positive than some of my posts.
I have been in a room with other Parkies people and felt that my symptoms are minimal and under control by comparison.
Recently, however, I have noticed some subtle changes. Changes such as where my medication stopped my tremors, now I have incidents of ‘break through’ twitches that weren’t happening before. The ‘twitches’ are sometimes internal, in that they can’t be seen, but I can feel them beneath my skin. Sounds weird and hard to explain.
Also, I have noticed that I am more tired recently. My legs feel heavier and walking a bit more of an effort. I admit that I have put some ‘condition’ on (a few extra kilos) and wonder if this is the reason or whether it is a sign of progression. I have had trouble sleeping and restless/achy legs too. So all together, a few quite subtle changes have been occurring.
I have been happy in my complacency that I only need one tablet three times a day, where others appear to have a cocktail of medications to manage this thing I have christened ‘Parkies’. I have been reluctant to acknowledge these subtle changes, for if I do so, I make them real. If I make them real, I have to deal with them. To deal with them, I have to share them.
So, I have done just that. I have spoken to my Neurologist’s nurse and she feels I need a specialist review. Part of me is relieved my specialist will be able to guide me and offer me support. Part of me, however, does not want to admit that maybe I have progressed – even if just a small amount – in the space of just over a year. I know it is a good thing to be honest on this journey. To seek help from those who have the expertise to help and support me. My logical brain gets it. My emotional brain resists it, because I don’t want to face the reality of a progression, no matter how small.
Let me live in the moment just a few moments more. Let me enjoy being in a stage where the impacts are not too great. Let Parkies be kind to me and allow me a life spent well with those I love for a good many years to come.
If increasing my medications – and any other strategies my Neurologist can give me – and facing up to these subtle changes gives me more quality time to enjoy the life I have to live, then so be it.
It is hard sometimes to be a realist. To admit this thing I call Parkies is my reality. It is something I must do if I am to get the help I need.
It doesn’t always make it easy though…
My journey with Parkinsons 