So how did I become a parky? Well looking back post diagnosis I first starting noticing symptoms about 2 years prior, difficulty writing and using my computer mouse at work; overtime my right arm getting less useful; struggling with brushing my teeth, putting on my make up, putting on socks, buttons progressing to tiredness like I have never experienced before, rigidity and slowness of movement (literally moving like a slow mo movie scene).
After endless tests and subsequent referral to a neurologist I was told the words ‘you have Parkinson’s disease’ ….. well what the hell was that? In my ignorance I just associated it with ‘old people & shaking’ … it just didn’t sound good from his tone and look of pity on the neuro’s face as he said the words. Cliché as it sounds it was like time stood still and I was stood at the side of the room looking in at this scene, I could see the neuro’s mouth talking but none of it made any sense.
I was told I would be started on medication straight away and this would be for life; I left with a referral note for a blood test (to rule out Wilson’s disease) and a recommendation to look at a website (Parkinson’s UK). I am not sure how I walked out of that room to be honest, I just remember stepping outside and feeling the fresh air hit me and bursting into tears! Thank goodness I had taken my other half with me that day as I had been to all previous appts alone (thinking it was nothing to worry about).
Here is my personal Facebook post 1 week post diagnosis (names and items adjusted to protect privacy):
So here goes nothing….it’s a long one so please bear with me x
A week ago at the age of 35 with two young boys (4 & 1) and 2 weeks from returning to work following 14 months of maternity leave I was given the news I had Parkinsons Disesase (PD) as you can imagine this came as a complete shock and was totally unexpected.
I have been experiencing symptoms for around 2 years but to begin with they were so mild and few and far between that I ignored them for the most part and obviously going through pregnancy last year I put a lot of it down to that (it was a tough pregnancy). However they were still there once having baby and began to progress quite a lot to the extent it was becoming noticeable to other people, therefore I finally took myself to the doctors. I had numerous tests including MRI scan, blood tests, which all came back clear so I was referred to a neurologist who carried out further tests including a nerve end electric test and observations on my behaviour and movement.
My main symptoms: Restricted use of my right hand side (especially my right arm), slowness of movement, Rigidity, Fatigue, constipation, sleep & speech problems plus others.
I am due to start on medication tomorrow (this will be for life) to manage my symptoms, I am hoping I cope with these well as they can have their own side effects!! I am also being referred to a specialist PD nurse and for a specialist brain scan.
Sleep, rest and attempting to avoid stress are vital to managing this condition (not easy at this point in my life!) ….my GP has agreed that I need to postpone my return to work as I was already feeling the normal anxiety and stress about returning and juggling kids and home ect….so for now I can focus on getting my head straight, getting used to my meds and spending some extra quality time with my family. I will need to make some adjustments to my life and lifestyle and need to get better at asking for help and knowing my limits.
There is one thing playing on my mind though, as there is no definitive test for PD just a list of indicators the neuro looks for there is a small chance the brain scan could be ‘normal’….what does this mean? Do I still have PD or not? As I still have all the symptoms…my neuro seems certain enough to start me on meds now rather than wait for the scan results….confused and anxious about this!!
Why am I posting this? Therapy? Getting it out there? Awareness?
It is a part of me now for the rest of my life I don’t want it to be a ‘dirty’ secret so to speak, I am also very conscious of how I move and come across right now which increases my anxiety especially if people don’t know, it’s not something to easily slip into conversation, so now it’s out there.
I am trying to get on with things as best I can and focus on the positives (there are so many) it could be a lot worse!
It isn’t life threatening but it is life changing.