Take a leap of faith

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

: Photo by Studio 7042 on Pexels.com

Next steps: a reflection

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.

A problem shared is a problem halved

Little post today. But wanted to highlight another off-shoot from one of PD’s anxiety non motor symptoms which is catasrophizing. It is really scary when it strikes. For me it manifests when minor physical things occur – a twinge quickly becomes something serious in my head and then the panic sets in. I have to be really tough with myself to bring the anxiety down and feel in control again. I find this behaviour accelerates when I am stressed or tired. I now recognise when these these thoughts intrude to take care of myself a bit better emotionally and physically. It also really helps to talk to someone about your fears as well. Don’t be afraid of expressing your thoughts. The more we talk the more we can cope with PD and the better those around can support us on this journey.

Thanks for reading and have a great day.