I haven’t blogged for a while. Reasoning behind this? Well firstly life marches on with it’s demands and rightly so. First and foremost I’m the person pre-Parkinson’s diagnosis and I will always strive to retain that me! But also I’ve been slightly reticent if I’m honest. Hmmm tricky one. When starting out on my blogging journey I just felt the need to share and help in any way I could.
As you then start walking the blogging path you quickly realise the impact of putting your thoughts, experiences and fears out there for public consumption.
The vulnerable essence of you is exposed and how people receive it is very much their choice. Equally how they respond is entirely their choice. Love or hate you have no control, but there lies the rub I suppose – the need to share and raise awareness and the instinct to protect and avoid negativity. Very easily on the big old web we quickly just become content but you see behind every blog, comment or share there is a story, a meaning, a person possibly feeling vulnerable but putting themselves out there anyway. On the whole and I mean, 99.9% of the time I experience only positive vibes. So inspite of any doubting or murky vibes that exist out there in the world I’ll press on and share my journey.
Today I feel inspired to share my meeting with my Consultant and the very challenging but hopefully fruitful next stage.
You know being diagnosed in 2014 I forget that in reality I’m about 10 years in with Parkinson’s Disease. Silly that I attach so much reverence to the date all the craziness was given a name. I suppose taking all of this into account I’m actually doing ok. I naively asked the question, “so how do you think I’m doing?” answer: “pretty text book considering how long you’ve had Parkinson’s.” I was reassured but not reassured by this response if that makes sense. So that means I’m not progressing at an alarming rate but also it means that I’m not slowly progressing! a right old cacophony of emotions right there held suspended in a second that I’d have to pick through at a later date.
So next steps:
New drugs initially to complement my current medications. Opicapone, Rasagiline, possibly Safinamide. The reality of any drug though is they come with side effects. Some are manageable others are not and this is the mental mountain we have to climb when a new avenue is presented to us on this journey.
It’s a bit daunting
You see I desperately want to reclaim my lost mobility. I don’t want to switch off and become useless. I want to take any drug that is going to keep me moving but it’s not that easy. So having responded badly in the past to other drugs it is with real trepidation and a deep breath that I take up this new baton. The next stage of this snippet of my story doesn’t end there. Well ok it does for a while if one or some of these drug combinations work. If they don’t then it’s been suggested I give the Apomorphine pump a go. Now this is a different level completely! I’ll have to have a pump attached to me which will take adjustment that’s for sure.
The appointment though for me was sort of a benchmark meeting when suddenly we were having very serious conversations about pathways and procedures that in my head I knew I’d have to have one day but had hoped it wouldn’t be for a long long time.
Deep Brain Stimulation
Yikes there we go those three words had finally been uttered not by me by my consultant. I stared and in my head I’m thinking….did he really just say this would be an inevitable step for me??? and then followed with me asking how soon would be best? Answer: sooner rather than later. I would reclaim a good 10-15 years. How tempting is that!
Wow ok…. wasn’t expecting that!
DBS really does deserve a blog on it’s own I think in the near future. I haven’t processed it yet. What I will say though is I’m not afraid of surgery at all. Been there, done it, got the T-shirt, tea towel and deely boppers lol! It’s the thought of surgeons being in my brain tweaking things and the worry of post-operative complications, infections etc. But those thoughts aren’t for today. Today the sun is shining and I’ve got my life to live.
Thanks as always for taking time to read. Have a great day.
Parkinson's: Always Moving Forward 