Four years ago today I was diagnosed with Young Onset Parkinson’s Disease. I say me but in reality my whole family was. It’s hard not to remember every moment of that appointment with my consultant. Seeing the scan image of my brain on the monitor screen with obvious damaged parts. Now I’m no neurologist but my eyes kept creeping back to the monitor screen as he talked thinking this is not good! Back then after being presented with the diagnosis the doctor’s advice to me was, “take the tablets then forget you have Parkinson’s” and “now we know the enemy we can do something about it” and “don’t go to any meet ups yet. I really would advise against it at this stage”. I took all of this advice on board and now looking back can understand in the main why all of these advisories were given to me.
Initially, my honeymoon period with the disease and my new medication regime was painless. I had heard somewhere that the honeymoon phase could last 5 years. I had no reason to doubt that my PD wouldn’t be slow progressing so I looked forward to many years having a somewhat easy ride. Well, here I am 4 years post diagnosis, almost 10 years under my belt in all and I can honestly say this year has been tougher than I ever could have predicted.
I so want to post an upbeat post today about how I’m still kicking PD’s bum and life is great inspite of the challenges it poses, but sadly, I can’t lie, I just can’t. The reality is there have been more than a few days where I’ve felt so overwhelmed by the constant bombardment at the hands of Parkinson’s Disease that I haven’t known how to make a path through to survive this monstrosity. The future has felt so bleak I’ve questioned my ability to take this on. As always, throughout the extra tough days when I physically couldn’t muster the strength because I’d been up most of the night fighting with my own body and or motivation to get showered and deal with the day Dean has been at my side, helping me sit up, helping me to the bathroom, feeding me, holding down my leg whenever it twists painfully, holding me when it all gets too much and wiping my tears. A day very rarely goes by when he doesn’t promise to sort this for me and reassure me that a cure will be found in my lifetime. I would be lost without him and never ever take his love for granted.
So, I now take copious amounts of levodopa and it just isn’t giving me enough coverage. I’m exhausted trying to spread the meds out so that I have enough functional windows in the day. I medicate every 2.5 to 3 hours and it’s still not enough. Agonists don’t work for me so what to do!?
I am praying that I am a suitable candidate for Deep Brain Stimulation surgery. Although I’m very nervous and the thought of having wires running from my brain and down my neck to a battery pack distresses me it’s got to be better than a future without it. There are no guarantees with it and of course there are risks but if it works the rewards could be massive! In the meantime I’m going to be giving Apomorphine a go. A drug delivered into my abdomen via a needle that I will wear all day. I’m not looking forward to this either but I’ve got to do something. It’s 2018 and yet the solutions seem so barbaric!!! not to mention intrusive!!!
As I move into my fifth year I am hopeful and I pray that the surgery is a success and I can regain the quality of life I had years ago. Thanks for your continued support, keep spreading awareness and keep the conversation going and one day a cure will be found xxxx
Parkinson's: Always Moving Forward 
You are brave beyond belief as you endeavour to cope with the insidious condition that is Parkinsons! Hugs x
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