Christmas and Parkinson’s

Is it just me or are the years passing quicker? Living with Parkinson’s disease and the significance of time become more and more entwined as the months and years move on. The concept of time for anyone living with the impact of a degenerative disease is monumental. I heard once and I cannot remember where that this is the best version of me and my condition, now, this very moment. Well, I was told this some years ago so you can imagine the impatience and urgency to cram life experiences in, today as it was back then.

Time! For me, speaking only for myself, is primarily a gift. I feel guilty when my anxiety flares, reducing my enjoyment of each precious moment. I take my meds to mitigate the worst of my Parkinson’s related anxiety but it doesn’t completely eradicate it so I’m left with this gnawing worry which really annoys me because every hour is an hour I won’t get back and over-thinking is a waste but there we are, it is what it is. Time is also a harsh reminder of the parts of myself that are inevitably fading, and that is harsh. Harsh to acknowledge, shocking at times to discover and always, always difficult to put into words. All I know is that more and more household and personal aids are creeping in which is a blessing, allowing me my independence, but also saddening because they remind me of the me last year. What do I do? I buy a lovely throw and drape it artistically over the the chair with the obvious hand control at the side that shouts, ‘She needs help getting out of her chair!!!’ I don’t all the time I want to shout back, just when I’m tired or my meds aren’t at their best! I have no words at this time for my newly installed stairlift… still processing that one but it’s only needed when my hip is bothersome or my balance is wobbly. My motto is if I can I will. I don’t want to rely too heavily on these adaptations…. not yet! It’s my way of keeping a sense of control, a sense of self. Deep Brain Stimulation surgery has afforded me the ultimate gift of keeping my Parkinson’s within the realms of manageable for now.

Looking forward is healthy and 2024 is a big year for me. It is with mixed feelings that I will mark my ten year diagnosis, although in reality it will be fifteen, as my Parkinson’s was undiagnosed for a good few years before. It’s been a journey and a half to get here and when I look back over those years, I’m happy to say I’m doing ok even though the disease is becoming more disabling. Importantly for me even though I do struggle with anxiety and low mood my creativity has blossomed and I take pleasure in making my surroundings as joyful and vibrant as I can. I read books with a deeper understanding of life. I respect that life is not a fairytale with a beautiful ending but I am trying to lean into the experiences of life consciously and glean any opportunities and moments of joy along the way. I am also fulfilling a long-held dream next year with the completion of my Master’s in English Literature. When I’m studying it’s not about my Parkinson’s it’s about me, about the schoolgirl who loved to read and write stories. So lots of hard work still ahead of me in the coming months, combined with the self care required to stay healthy and steer clear of the pervasive fatigue that I navigate daily.

So, a really meaningful gift this Christmas is the gift of time. Time to slow down just for a little while and indulge with real pleasure in the food, the films I have seen countless times (Sleepless in Seattle), fresh air in nature, laughter, catching up and ultimately celebrating this gift of Christmas once more with Parkinson’s by my side making sure I’m sensible at all times…. Parkinson’s, always the party pooper! Wishing you a Merry Christmas and thanks for reading.

Possibilities

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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.

The Time is Now

It has been some time indeed since I have written a personal blog entry. In all honesty this year has been challenging in the extreme for me. Initially I thought my Deep Brain Stimulation surgery would be happening earlier this year but as with a lot of things they follow their own path and all we can do is hang on and have faith that in the end things will work out. The saying “what is for you won’t pass you by” springs to mind this year and thankfully after a long, long wait with a few tears shed along the way I am relieved to say that I now have a letter in my possession with dates to work towards.

So this year, as mentioned, has been really challenging. I have worked with the Huffington Post and Parkinson’s UK as normal which has given me a sense of achievement raising awareness. In all honesty though I haven’t had the emotional strength to write about the more personal stuff. For the first time since my diagnosis nearly five years ago I can honestly say that I feared Parkinson’s Disease was actually going to break me.

Depression and anxiety have been colluding along with my physical symptoms to erode the essence of who I am. It has been challenging and frightening to live this life and if I’m honest it still is. The only way I can describe it is every morning I am wiped clean of any calm or happy feelings. The tank is literally empty and I have to try and climb out of the abyss every single day by feeding my brain levodopa until I’m out of the red. The exhaustion that goes with this is really hard to shake off. Somehow I’ve muddled through countless days trying really hard to hide from my family, in particular Dominic, the horrible sense of fear that has dogged me. Thankfully Dean who has been watching me like a hawk intervened when I crashed a few months ago and took me to see our doctor. Just sharing my anguish, fear of the future and confusion about how I was feeling was a massive weight lifted. Does it take away the reality of progression of Parkinson’s Disease: No! Does it take away the fear of surgery: No! Does it solve all of life’s problems that happen irrespective of my Parkinson’s: No! What it does though is to lay the massive weight that is Parkinson’s down for a little while and let those around me, professionally and personally so that I can get a breath before my journey continues.

So in a couple of weeks time I will look differently, sadly the hair’s got to go and I will have hardware on board and in truth I can’t at this point look beyond this aspect of the process. I know that I will have my first programming session sometime in December. My DBS team have warned me not to expect any miracles for about a year. I am prepared for ups and downs along the way. Following my final screening assessment a few weeks ago and receiving a report based upon the specialist’s finding I was very saddened to find out my Unified Parkinson’s disease rating scale was 119 out of 199. Leave this nasty to its own devices and I dread to think what I will be dealing with in 10 years time.

So, even though I wish I didn’t have to take this route I know it is my only real option to try for a bit of freedom. I have every reason to be optimistic and I’m sure once I’m back home that optimism will start to germinate and grow. So what will I do with myself in the intervening weeks? Dean and I have got to get Christmas sorted so we can literally just roll it out ready to go. We’ve got a bit of decorating to do and I’m filming for the BBC World Service next week for the programme I am doing with them relating to my DBS journey. This is a really positive move for me and makes me feel that something good can come out of my Parkinson’s disease.

4 years and counting

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

photo of head bust print artwork — Photo by meo on Pexels.com

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

city bicycle in the middle of forest trail — 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.

Planning!

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.

Springtime and Dystonia

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.

Apathy Busting Cupcakes

I can honestly say one of the most vague and difficult non motor effects of Parkinson’s Disease is how I view my world and how that then impacts how I interact with the people and situations within it.

I suppose looking back I was always a bit of an introvert with extrovert tendencies! Socialising was always fun and I loved going out, chatting, planning things with friends, clothes shopping for an evening out and then reminiscing fondly afterwards about what a great time I had had… but…. there were often times when I felt a bit overwhelmed. I would feel pretty exhausted after a social event and even times when I felt so overwhelmed that I would look for a reason to cancel. Now the impact of the latter feeling was totally negative – not just a brief reaction but one that would linger and bring me quite low. I never used to be kind to myself, oh no, I would reprimand myself and then go on a huge guilt trip.

Why are we so understanding of others yet incredibly hard on ourselves?

So this pattern would play out. Low confidence wanting to hide away and then the negative thought pattern. In retrospect this insidious process stealthily crept in a number of years before my first motor symptom occurred. I now understand the impact the damage in my brain causes and can register certain feelings I experience as being in direct response to low dopamine. An example is last year when my Parkinson’s wasn’t being medicated adequately enough I would, every morning without fail, have a panic attack. The feeling of doom was pretty huge and I would dread what the day had in store for me. By my lunchtime dose of meds my mood would quickly lift and then the rest of the day would not be spent jumping at my own shadow or breaking out into a cold sweat if someone suggested I walk under a ladder, I should see a lone magpie or God forbid I found crossed knives in the kitchen horror of horrors! All bonkers stuff in a dopamine-rich reality but the thought process when you’re in deficit can be draining to say the least. So all of the overt reactions are quite obvious and in a sense tangible so easier to treat. What I struggle with now are the little nuances of anxiety, my feelings of unwelcome apathy that discourage me from reading the book because let’s face it I can’t be bothered and by tomorrow I will have forgotten what I had read and need to read it again anyway. The walk that I know deep down would make me feel so much better and help clear my head but can I really be bothered to get my coat on, which happens to be upstairs, dig my shoes out and then I may go ‘off’ mid walk and get stuck (in reality this would probably not happen) so do you know what I’m going to stay put!

Parkinson’s Disease is crafty and sneaks in when you’re not looking and talks you out of doing normal things.

It really does! I don’t like this aspect one bit. It has the power to change the colour palette of my day from bright colours to murky smears which I’m sorry I’m just not having! So what can I do? What I do is go into the kitchen and bake and decorate cupcakes. They’re easy to make and no particular skill is needed in creating a sweet, colourful thing of beauty. I think being engulfed by a heady cloud of icing sugar also has restorative qualities for me. Ok I’m messy and my kitchen looks like a scientific experiment has gone seriously wrong at the end of my baking session but I’ve distracted myself for an hour, music is usually playing helping to lift my mood, I’ve produced something my kind family will oo and ah over, also lifting my mood, I get to sample my product (quality control no other reason you understand) and I get to lick the spoon!! What’s not to love. But most importantly of all I feel so much better in my headspace….it’s clearer, the brighter colours are there again. It’s like I’ve pressed a reset button. Ok tomorrow I might be on top of the world rushing here and there in between med doses or I might be grounded again in which case I’ll try to figure my feelings out if I need to.

Thank you for reading.