This year has been nothing short of transformative. A period of time that has laid every one of us bare to the vulnerability that is surrounding and inside each and every one of us. Within our man made constructs and belief systems we have been pulled up short and made to face a very deep kernel of truth that nothing is assured and life can be turned on its head in a heartbeat. I have seen real pain and fear reflected in the faces of others that before was confidence and stability. This has resonated massively within me and I’m sure it has with many others across the world who, on a daily basis, look uncertainty and mortality in the face as they quietly battle their individual disease be it mental and or physical. There is no judgement here-just a recognition and a sense of solidarity, maybe just maybe everyone feels the same fear which is a huge awakening and ultimately finds the same courage to fight another day and find the beauty within.

So, I had it all figured out!

This was going to be my year of freedom. Finally after years of being torn to shreds by Parkinson’s Disease I was going to emerge from my post-operative chrysalis and show everyone my beautiful new wings and fly in any direction my mind and heart chose. I had concerts booked, a literary festival was being considered, little breaks here and there. Of course none of this has been able to materialise and who knows when my plans will. In reality though I think my idealised view of this year was always going to be ridiculously sugar-coated with a smattering of hysterics. In truth re-winding to October 2019 (my first surgery to implant the brain electrodes) I had no road map to life beyond the surgeries at all. How was I meant to feel? I’d never visited this situation before and in truth I was terrified of surgical complications. I had to make it through for my family. This was as far as my dopamine deprived brain would stretch.

They worked their magic and gave me a chance at life again

They did and for that I will be eternally grateful as will my family. The surgeries were taxing beyond belief for me. My blood pressure was bouncing up and down after each and the frustration in trying to stabilise was a bit harrowing. My bladder stopped functioning again and each time something went wrong I gritted my teeth and prayed that I was going to get home soon. The care I received was beyond anything I ever dreamed I would receive. I mattered to them and I was held suspended in a little healing bubble until I could walk safely out of the hospital. I eventually did just that at the beginning of November and cried tears of joy upon leaving. I was going home. I was in pain, my hair had been removed but I was safe and ecstatic. I was also relatively symptom free at this point because my Parkinson’s had been stunned into submission as a consequence of surgery. I had a few weeks of blessed reprieve and within that time I slept, ate ravenously, talked, planned, ate some more and slept a whole lot more with the backdrop of a looming festive period. I could hardly believe my luck.

New Year – New Me!

Yes, but not in the way I had envisioned. We plan, we assume, we have certainty. Even those of us who really should know better! Life taught me a sharp but important lesson in this. Live in the present it really is all we have. In truth I feel like I have crammed a decade of life into a six month slot and at times that has been unbearable. The Universe has taken from me and has given in a way that leaves me breathless with its capability and I am truly, truly humbled and acquiescent in its wake.

Look a new way

As I type I have just needed to medicate… I still type…my at times cumbersome fingers flit across the well trodden trajectory of the keys. They do not fly as they once did but the very fact I can keep a physical and mental momentum to the task in hand is miraculous to me. I do feel like the butterfly in truth I touched upon before- freshly fledged with still wet wings unable to take flight so my sugar coated ambitions were not completely fantastical after all. As I move forward into the second half of the year I feel calm, mindful and hope if I can use that word. Yes, hopeful in a way that I was too scared to feel before. My neurologist has a plan. A strategy to free me from my prison. I will continue to be a student of life, a respectful life partner of Parkinson’s Disease and above all else I will start to honour myself more fully engaging all the good offerings the world has to offer and respectfully saying no to those things that do not honour me in a positive way. In so doing I will become the person I have longed to show the world all my life.

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

I’m feeling a bit impatient. There is so much in the pipeline just waiting to come to fruition but I’m having to wait for things to naturally evolve. I’m very much a sit and think things through carefully kind of person but then when I make my mind up on something it’s full steam ahead. In so many ways my ability to focus and think things through carefully has eroded as my Parkinson’s Disease has progressed.

I struggle to stay focussed on any one thing for any period of time.

My once methodical ability to start and complete a task has almost disappeared.  I find it hard to believe that only a few years ago I was completing a BA (Hons), working through a teacher training course, was heavily pregnant too and although I was blissfully unaware had started to tremor and experience rigidity in my fingers of one hand which I now know was Parkinson’s Disease manifesting. I remember at my graduation ceremony standing proudly with my tiny baby in my arms as I wore my cap and gown thinking my family was complete, my current studies were complete and I was planning how I was going to juggle work, bringing up my young family and factoring in an MA at some point too! I really thought my life was of my design and I had lots of exciting things still to achieve.

Well fast forward to now and I realise that all it takes is one major life event to change all of that.

So now I repeatedly forget passwords, struggle to stay focussed with books even though I have been a book worm for as long as I can remember. From the moment I wake to when I go to sleep my mind tends to flit from one thing to another. It doesn’t impact my life in a major way at this time. I’m still able to outwardly do everything that needs to be done. I am aware that there has been a massive shift in my own head even though I can cover it well so it’s an awareness I’m quietly monitoring at this point in my life. I know my limits now and actually that’s ok. It means that in any one day I can half plan many things and some may be completed, others may be remembered and completed in the near future and others may be forgotten about completely.

It’s another aspect of the condition which has to be recognised and accepted.

OK I may never complete the things I had once hoped to BUT life is taking me on this new journey and I’m trying to embrace it.

Back to my current plans: I have decisions to make about kitchens, windows and landscaping and I’m surrounded by catalogues and online shops pulling my mind this way and that desperately trying to narrow down all of the amazingly pretty things out there and avoid being impulsive just because I can’t order my thoughts as easily as I once could. In some ways it’s annoying but in others there’s something quite liberating in having a mind that is a bit unpredictable and more at ease to take a little risk now and again.

Thank you for reading.

After a half decent night’s sleep waking maybe once or twice I feel tired but not exhausted yay! The birds are singing, the sun is shining through white fluffy clouds, coffee drunk, meds on board and it’s Friday!! But…I can’t move yet. I medicated well over an hour ago but the magic is yet to happen. I hate it with a passion when I don’t get relief within the hour. You see mentally I can manage the off times really well as long as I know I’m going to switch back on pretty quickly.

Being grounded like this is really frustrating and reminds me that this condition in so many ways is the boss.

The amount of times I’ve stubbornly put myself in a situation that I told myself I could manage, knowing in the back of my mind that my meds aren’t working as well they should and therefore I could get stuck…literally stuck on the spot with crippling dystonia usually. I saw an image by an artist called Avogado6 from Japan and it just really struck a chord with me. It’s of a woman and she is lying seemingly unable to move on her side and the batteries have been taken out of her back. Very profound and when I saw it made feel quite emotional. Do take a look if you can.

This is what’s it’s like to have Parkinson’s Disease for me.

I really am only as good as the medication I take. To many people this will seem really odd because when I’m functional and out living my life they would maybe have no clue, no clue at all what was waiting for me a couple of hours down the line. It’s no fun and everything has to be planned. Life is no longer an organic thing with meandering moments. Just as the fluidity of my bodily movements has gone so this is reflected in my life in general. My days are jerky, enjoying the highs and tolerating the lows over and over again. When I think of this it makes me realise that this thing is in my brain causing more and more damage like a forest fire. It totally freaks me out that part if  I’m honest but it is what it is.

So this brings me to Springtime. I’m desperate for the winter to be gone. I obsess daily about the new shoot growth on the trees, on the shrubs and look and look again for evidence of beautiful new growth. Yesterday I spent time in my garden just pottering and looking at the birds as they fed from the feeders we’ve put out for them. It calms me and gives me hope that everything rejuvenates.

Better days are coming and I’ll feel good again.

Because for me that is the essence really of learning to live with Parkinson’s Disease. There are days when I feel dormant and closed off physically and mentally but usually, well up to now anyway, my face turns to the sun, my body starts to move again and my spirit rises and I feel hopeful and happy for the life that I have.

Nature teaches so much if you look.

How to have patience, that things will rally and flourish once more, that life can seem hard and cruel but it can turn around and then suddenly we’re bathed in sunlight once more. I think most importantly for me I find peace amongst nature. Right from the start of my journey with PD when I was off I would sit on a particular seat right by my garden and I would sit and wait for my medication to work. The view of the garden was so soothing to me and it really is an essential part of my coping mechanism. So today I am going to nourish the soil in the flowerbeds ready for the planting that I will be doing in the coming weeks. I am also going to nourish my mind with peaceful and hopeful thoughts, good food, a bit of exercise, some knitting, and a glass of wine later, well it is Friday! My dystonia has finally eased yay!! Here’s to a wonderful end of the week and sunshine-filled weekend for us all.

Like so many before me and many more that will be diagnosed in the future let’s just say it took a while! It took a total of 5 or so years before I was given the official diagnosis. With the sacred source that is Google and an educated guess on my part when the day came it was no surprise although I still felt like I’d been punched in the stomach when it came. You see there was still that seed of hope that maybe I was just suffering from anxiety that was impacting only one side of my body after all, hence the tremors. But no, better get used to this, and fast, I had Young Onset Parkinson’s Disease. So prescription in hand I found myself dazed and constantly on the verge of rising panic sitting in the pharmacy of a large hospital. It took an age waiting for my first batch of tablets. The realisation that I probably would never have a medicated-free day ever again weighed down on me heavily.

Panic rising…get me out of here.

In hindsight I should never have gone straight from the consultant’s office to that pharmacy! Instead I should have gone into a clear space, preferably a beach and breathed deeply, cried maybe, even shouted as the waves kept moving and the birds kept circling and allowed myself that tiny space between the old me and the new me to just ‘be’. Anyway that never happened and I spent that precious time being buffeted by busy people and trying to decide would I need a pill cutter! That was nearly 4 years ago now and it has taken that long to properly adjust and accept the new me I suppose. The grieving process has been tough but I have grown so much as a person that I feel compelled to share my experience of living and enjoying life with Parkinson’s Disease.

Are there difficult days? Yes! Are there happy days? Absolutely!

Life is a journey whatever it throws at us and it’s a better more enjoyable journey if we can share it with people who ‘get’ us. I have found that although there is a big community of folk with PD it tends to exist online rather than face to face within our home communities. This is why blogs are a vital link to share, stay connected, be understood, learn and not feel isolated.

Many thanks for reading and I look forward to sharing my experiences with you.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton