It’s been a bit warm!! Just stating the obvious in case you live in a bubble and hadn’t noticed. Extremes of temperature can have a negative effect on Parkinson’s symptoms and lead you to believe you are getting worse when in fact it’s just the weather. Marvellous! This record hot weather can cause dizziness and fatigue. The difficulty with staying hydrated can cause increases in tremors and slowness. The body is using extra energy to stay mobile, however, your Parkinson’s body was low on energy to begin with, so when you require more energy to stay mobile, you will suffer with increased symptoms. Bloody marvellous! Just what I needed when my symptoms are in fact worse and I’m waiting to start new drugs. Just another challenge, and what’s one more??

And so, two nights ago, after virtually no sleep the previous night, I decided to appropriate a fan. We own lots of fans, desk fans, pedestal fans and the turbo fan… On this particular evening, my fan of choice was already in use elsewhere and a piddly little desk fan just wasn’t going to cut it… so the turbo fan would have to suffice. I selfishly set it up on my side of the bed and lay there smugly enjoying the stream of cool air directed primarily towards my position on the bed. After only a couple of minutes of luxuriating in the cool air, and increasing the volume on the tv several times in an effort to hear even some of the dialogue, I decided that maximum turbo was actually too turbo and definitely too loud! So I turned down the turbo ness which in turn reduced the deafening hum, reminiscent of a light aircraft, to that of something akin to a vacuum cleaner. Even at this level of turbo, it was still loud, and the stream of air was still strong enough to blow everything off the bed. I decided I didn’t need to watch tv anyway and instead settled down for a cool and undisturbed night’s sleep. What I hadn’t anticipated was that even on a low setting, the stream of air would be so strong that even if I wanted any sort of cover over me, the fan would instantly blow it off. I also hadn’t predicted the totally unflattering blasting of all of my wobbly bits to the furthest extremes of my anatomy and how that might look several hours later… When I woke up I felt as though someone had removed my eyeballs, dried them on a really scratchy towel that has been washed without fabric softener and dried outside, and then dropped them back into my bone dry eye sockets. I blinked furiously, willing salty tears to soothe the arid scratchiness. My mouth was similarly free of any moisture and left me devoid of speech. I sat on the edge of the bed, enduring my usual morning ritual of waiting for my legs to decide to function enough for me to be able to stagger to the en suite, battered by the persistent stream of cold air, unable to move enough to redirect it or switch it off. Not ideal…

So last night, a change of strategy was required. Hottest day of the year be damned! The turbo fan was retired to the living room and replaced with a much more subdued pedestal fan, positioned at the end of the bed that we both might benefit from the cooling oscillations equally. It was definitely quieter but turbo fan it was not. It was about as effective as a small child blowing out birthday candles… I lay on the bed, willing the cool air to reach me as my discomfort increased. Realising the fan was no match for hottest day of the year temperatures, I resorted to desperate measures. I stripped off and ran a small white hand towel under the cold tap. I then lay on the bed with the dripping towel just about preserving my modesty and the combined effect of that and the occasional gentle blast of air from the fan, meant that I was actually able to get some sleep. It wasn’t great, but it was something. Until Mark pointed out that the sight of me had traumatised the children. Apparently I looked like a dolphin or whale that had washed ashore and the tide had gone out and people had covered it in wet towels until it could be rescued and released back into the sea. Yep…

Bring on the rain!!!

I’m not myself at the moment. It doesn’t take a genius to see that. I’m sinking. Sinking under the weight of worsening symptoms, stress, anxiety and a frustrating delay in getting my perceived miracle cure. I have a progressive, degenerative disease, I know that. By its very nature, it is going to get worse. I know that. By the point of diagnosis, around 50% of the dopamine-producing cells have already been destroyed. I know that too. It’s only a matter of time until more symptoms become evident. I read that 3 – 7 years after the onset of symptoms is when most people notice a worsening of symptoms and progression of the disease. And that’s where I am… 3 years from the onset of symptoms. So why am I surprised? Why have I been thrown into this downward spiral of depression, when I knew it all along? 9 months since diagnosis. 8 months since the start of treatment. It should’ve been longer. I wanted more time. I wanted to be as good as I could be for so much longer. I’m devastated. And angry. It has hit me so hard that things are never going to be better than this. I think, as ridiculous as it sounds, I am grieving for the life I had and the life I will never have again. So I apologise for not being myself. I’m not even sure who that is any more… I apologise for the tears, unwanted and futile. But I don’t apologise for anything else. I am struggling so much. My life has changed so much. And I can’t remember when it happened. Subtle changes, creeping in almost imperceptibly but when you examine the bigger picture, their impact has been huge. I worry so much about the irreversibility of these changes. I’m starting another drug. Hopeful that this will be my miracle. I have so much planned for ‘when I can’, and now I’m truly fearful that that day will never come… And the NHS being what it is, I probably won’t even start this drug for another couple of weeks – I have it on good authority that the letter to my GP has been dictated but it will take 3 weeks for it to be typed and posted, and then I have to wait for the prescription to be issued. But that’s OK because I’m not struggling or anything… First thing in the morning, I literally cannot walk now, the pain and stiffness is like nothing I’ve ever experienced before. The past few mornings have really scared me. But the new drug will sort that out, won’t it? So please bear with me. And please be patient with me. I am fragile and scared. And I’m doing my best, my very best, and I’m acutely aware that often that is not good enough. If I’m slow it’s because I literally can’t go any faster. If I’m miserable it’s because my life is being snatched away from me and replaced with a battle I can never win.

And yet, I refuse to be beaten. I can’t walk in the morning, the pain is unbearable, the fatigue is dangerously ridiculous, my symptoms are spreading to my left side and I can’t even do all of my physio now… I wonder which category comes after ‘Elderly frail’??!! Give me the drugs and the supplements and the weird, wonderful and crazy ideas… I’ll try them all. Anything to give me even just a semblance of normality. If I could walk to the bathroom when I get out of bed, that would do. Or if I could stay awake for more than an hour when I get home from work, that would do too. Or if I could cook a meal without dropping a boiling pan or flinging ingredients all over the floor, I’d take that. I’ll take anything that is an improvement on what I have now. I’ll even take the mostly unwanted side effects, the compulsive behaviour an hallucinations. That’s got to be better than this…

But when you see me, those symptoms will be hidden. Temporarily masked with drugs and determination. I have to be alright. Miserable but alright.

I was going to apologise for moaning after my recent vow to focus on the positive, but I’m not sorry. I hope this will be a cathartic exercise for me, writing it all down and admitting to myself all of the things I had been hiding and denying. Recognising that I can’t go on like this any more. And if it isn’t, at least there is gin!!

I’ve started this post a few times and deleted it. I’m in a hole, a dark place with my health. There is no quick fix, but I realise that reading about my woes constantly is no fun for anyone. It doesn’t mean I’m okay, rather that I’m choosing to focus on the positives, and there are still plenty of those…

Today is my wedding anniversary. Mark and I have been married for 19 years, together for 26!! Three houses and three babies later and here we are. We’ve stuck together through good times and bad and our relationship has evolved into something akin to a comfy pair of slippers. We are a pair, one useless without the other. We are a little bit creased and a little bit worn out but we work better together than we did when our relationship was shiny and crisp and new. We’ve worn each other in and fit comfortably together in our little family. Love you Mr Gill xx

My kids keep me going. Last week, I got home from work one day to find Sam playing on one of the games consoles with another boy from school. When this boy had gone home, Sam came to find me to ask me whether I minded him bringing this boy home with him. He said Tom is having a difficult time at school and he wanted to support him. This kid who struggles with social relationships and has had the toughest time at school himself, was being a brilliant friend!! I’m so proud of him and the young man he is becoming. He recognised this boy was struggling and put himself in the firing line of bullies by standing up for what he believes is right and just and fair. I love him for that. The kid who lacks empathy does a much better job of being a friend than all the ignorant bullies who don’t…

Joseph is the only one of my boys who truly recognises some of the challenges I face. When I’ve done a shift at work, I get home and I cannot function. My body literally shuts down and I crash. Every day, without fail, Joseph makes me a cup of tea and asks if there’s anything I need him to do. Then he does the things that crop up that I don’t even ask him to do… The cat vomited on the stairs. Sam and Tom would look at the vomit, step over it and pretend they hadn’t seen it. Not Joe. Joe knows that when I’ve sat down after work, there’s no getting up again for quite some time. So he cleans it up. No moaning or complaint… even asking for advice on the best way to do it. He’s going to make someone an amazing husband one day. And he’s so funny! He knows just when I need to laugh. When you think things are bleak and you’ll never smile again, let alone laugh, you need Joe in your life…

Tom is my insomnia buddy. His colitis wakes him up in the early hours and we sit drinking tea together and putting the world to rights while the rest of the world is sleeping. Tom tells me everything. The things he tells me about his friends and the relationships they have with their parents shocks me to the core! Maybe I’m naive, but I’m so grateful for my lovely boys and the amazing young men they are becoming. I’m grateful for the wonderful, open relationships we have and that they know they can tell me anything. Although some of the things Tom has told me will scar me forever and I could happily have lived my life without knowing them. 😳😂

I read an article somewhere about training your cat to be a pill reminder. Genius idea!! I happen to have four cats. What could possibly go wrong? The idea is that you regularly give your cat treats at the times you need to take your pills, so that eventually the cat learns to ‘ask’ for the treats at those times, and therefore reminding you to take your pills. There are several flaws with this plan…

1. Kitty

Most annoying cat on the planet. Howls all day regardless of treat consumption. Zero usefulness as a pill reminder.

2. Sesi

Amazing cat. Most suitable candidate. But spends long periods outside and rarely feels the need to miaow. Therefore usefulness as a pill reminder is similarly limited.

3. Maude

Fat. Scared of everything. Only miaows for Joe. Untrainable.

4. Olive

Wicked. Only comes home at night. Very greedy. Stunningly beautiful though. Useless as a pill reminder.

5. Even if I could train a cat, I’d probably give them the treats and still forget to take my pills…

So I think the answer is to get a puppy… I’ve convinced Mark now… I just need to save up because puppies are not a cheap commitment. I’ve researched cage training and clicker training and the best breeds to leave home alone, and decided that we had dogs, well a dog, when I was a kid and we didn’t worry about any of that and she turned out ok… well, she was a man-hater but that’s ok 😳😂. It’s a work in progress…

My anxiety is ridiculous… This morning I woke up at the crack of dawn in a blind panic about the welfare of the families of the birds and rodents my cats kill. I was actually sobbing at the thought of these little furry and feathered creatures having an innocent family member taken from them by my blood-thirsty cat! I mean, do birds and field mice even have families?? Does anyone miss them when they don’t come home because they’ve had their lives cut short by my murderous moggie? I’m acutely aware that I need to get a grip… this is my life right now, a blur of mostly irrational panic attacks and work-induced anxiety, pretending to be ‘fine’, masking worsening symptoms and then dealing with the post-work, fatigue-induced crash, followed by crippling insomnia. My life on a plate… interspersed with much needed child-related hilarity… thank god!!

I don’t like to ask for help. I don’t like to admit to myself or anyone else that I’m not coping… that I can’t achieve the self-imposed standards I’ve set for myself. I don’t like to let people in, to see the person I don’t want to be, the person who is not good enough. But equally, I realise that no one benefits from this ‘me’, let alone me. So after much procrastination and denial, I decided that I am the only person who can fix this, can fix the version of me that isn’t working for the rest of the world. And selfishly, I don’t want this to be my life any more. Mark is in denial. Denial that I have Parkinson’s. Denial that it will get worse, that I will get worse… that it has got worse. He thinks if he doesn’t talk about it and if his expectations of me don’t change, then we will go on as we were… But I have changed, already quite considerably. Deep down he knows that, whether he accepts it or not. Voicing my concerns to him would be a fruitless exercise, so I don’t. Voicing them to anyone else is so much more difficult. It’s like admitting your failures and then being judged for them… So I’m reluctant to reach out and ask for help. My fragile state of mind can’t cope with anyone else telling me I’m not good enough. Don’t you think I know that now?? The inevitable prospect of never being good enough weighs heavy… It took a long time for me to pluck up the courage to phone my Parkinson’s nurse. I know I put it off for far longer than I really should have done. And to what end?? I struggle on for longer than I ever needed to. My specialist nurses are wonderful people, so reassuring and understanding. They get it. They get me. I know they are paid to, but they are so much more lovely than they get paid to be. I’d barely finished my sentence and she said, ‘Don’t worry, I have an idea’… and that was all I needed to hear. I’m not crazy, OK, so I’m not more crazy. It’s not all in my head. My struggles are real and recognised and somewhat treatable. I’ll take that. Two telephone conversations later and I have a prescription for another drug to hopefully address some of the issues I’m having, and an appointment to see her because she’s worried about me. And almost instantly I feel a little bit better. I did have to fess up to Mark that the new drug may make me lash out in my sleep and act out my very vivid dreams, but that’s a small price to pay surely?? He sleeps like the dead anyway so he probably won’t even notice… Parkinson’s drug’s are wonderful, treating one set of undesirable symptoms caused by your deficient brain and replacing them with a whole load of crazy ass side effects caused by your still-deficient brain. Oh how they laughed…

So I’m hopeful that this new drug will be my miracle and I won’t try to throttle Mark in his sleep. I’m hopeful that by treating some of the worsening symptoms I’m having, this will have a positive impact on my life overall and everything else will improve because of this. I’m hopeful…

And if Mark is reading this, I’d really like a puppy… I’ll link the studies on the positive impact of dogs on the overall health and well-being of Parkinson’s patients as necessary. I’ve chosen a name ❤️🐶..

Life is hard sometimes, really hard. To get up every morning and carry on as ‘normal’ takes every ounce of strength you possess. You wonder how you can possibly carry on… Well today I couldn’t. Today I cried loud, snotty, ugly tears. Tears of despair. Tears of defeat. I’m done. Today I can’t do Parkinson’s. Today I can’t do all the crap that life throws at me. I can’t carry on the pretence that everything’s ok. It’s not ok. It’s very far from ok. And I’m sick of feeling like this. It’s a miserable way to exist. But what is the alternative?

I learned this week that I’m not the person I thought I was. In my head, I imagined that people see me in a certain way, that I present a particular image to the world, but apparently that is not the case. Don’t get me wrong, I’m well aware that I’m an acquired taste, sarcasm and misery is not everyone’s cup of tea! I get that. It takes a special kind of person to put up with me, let alone like me… But I didn’t think I was a horrible person? Well, how wrong can you be?! Discovering that has had a catastrophic effect on me. I’m devastated… It makes you sad, deeply sad. It makes you question everything. I begin each day now with massive anxiety, permanently on the verge of selfish tears. The wobble I have before I can force myself out of the door and into the car to go to work, gets bigger each day. And now, instead of believing I was doing OK at work, I believe I must be the weakest link, the person no one wants to work with… Every shift I manage to work is a challenge, a challenge to get to the end of the day, a challenge to keep up with my colleagues, a challenge to do my fair share, a challenge not to give in to the symptoms which refuse to remain hidden and threaten to overpower me at any given moment… And now that is not enough. The truth does bloody hurt. But who’s truth is it???

So I’m not much fun to be around at the moment. Yep, even less than usual!! Avoid stress they said. Well tell that to my life. My symptoms are so much worse. In the last couple of days I have fallen over, juggled a cup of tea, and dropped countless things… I have developed a new pain in the palm of my hand and my tremor is relentless… my insomnia is back after thinking I’d cracked that particular nut, and the fatigue is crippling again. Yesterday I went to work. It was busy and short-staffed. When I got home I crashed. Mark woke me up to eat something and then I crashed again, only to be wide awake in the early hours, the perfect time to overthink everything… That is my normal. That is my life. But I look OK, so I must be…

Thank goodness for friends and family, otherwise I’d currently be rocking in the corner of a darkened room, vowing never to inflict myself on the world again. Joseph is home after a week at Barter Books, with an amazing bag of goodies and a vow to open his own Barter Books. It sounds as though they were as impressed with him as he was with being there. He’s currently rearranging his modest library to accommodate the stash he brought home with him. Sam has really missed him and is following him around like a little lost puppy and questioning his whereabouts whenever he is out of sight, despite Joe’s constant ‘are you gay?’ hyperbole… Sam had another first this weekend – he went into town with a kid from school, bought a game he wanted, lectured the staff on the ethics of trying to sell unnecessary insurance to minors, and got himself home again. I’m beginning to believe that the future for Sam is far brighter than I once believed it ever could be ❤️.

It’s my pity party and I’ll cry if I want to…

Everyone has their own source of comfort… be it alcohol, or chocolate, or a pet, or an item of clothing or a specific piece of music. I find comfort in all of those things but ultimately it has to be my slippers. When I’m at home, they don’t leave my feet. When I’m wearing my slippers I know I’m ok. Yes I am fully aware of how ridiculous that sounds… and I don’t care. My slippers are like my super power. I can do anything when I’m wearing them. Or rather, I believe I can do anything… if I could wear them for work, I would! And therein lies the problem. I wear them so much I wear them out. My physio does not like my slippers. People at risk of falls should not wear flippy, floppy slippers. And so with the face of an obstinate, petulant child, I reluctantly bought new slippers. I kidded myself they would be just as good, even better than my old ones… but they’re not. I’m wearing them, anxiously hoping they’ll one day be as comfy as my old ones… the old ones I can’t bear to throw away, because if I do I won’t be able to function somehow… so they lurk by the back door, under the pretence of being my ‘gardening slippers ‘, like that’s even a thing! And the pristine new ones stiffly refuse to mould to my feet, in silent protest of my reliance on them to function… it feels as though I’m being forced down a path I don’t want to go down. The slippers are just the tip of the ice berg. What else will I be forced to give up as I continue down this bumpy, twisty path?? Maybe at the next fork I won’t give up my slippers, I’ll dig in my heels and give the proverbial finger to what might be… Life’s too short for ‘just in case’… if I fall, I’ll get back up! I know how to do that now…

I couldn’t possibly write a post without mention of the Joey Special Walk for Parkinson’s. For me, that day represents such an outpouring of love and support and friendship… selfless generosity of spirit… and of course the inevitable laughter that goes along with any Joey event. And I don’t care what anyone says, it was a Joey event, and a bloody good one at that!! The name, ‘Joey’, might not appeal to everyone but it has evolved and taken on a new and unique meaning when referring to ourselves, and I love it, immature or otherwise!! Joeys are special in a brilliantly awesome way. Anyway, back to the walk… Getting to the venue became the first challenge of the day… my lovely hubby programmed a completely different location into his never wrong sat nav and then shouted at me when I quietly pointed out that the brown signs for Chasewater were pointing in an entirely different direction. It was only after travelling down several closed roads and arriving at the suspiciously quiet sailing club, that he admitted that we might be in the wrong location but obviously that was my fault. Never one to admit defeat, we set off in what we believed to be the right direction, along what looked suspiciously like a footpath, small dogs and children on bikes being hurled out of our way, over walls and into pushchairs, as my now pissed off husband, drove resolutely towards his goal. Three men stubbornly refused to move out of our path and I slid down in my seat, determined not to make eye contact, as they were forced into the barrier to allow us to pass. Eventually, and without death or injury to to any members of the public, their offspring or pets, we arrived at the car park. I had text ahead that my husband was being a twat, to forewarn the awaiting Joey crowd of any animosity between us, perceived or otherwise… but all was well. Karen made her usual grand entrance and then we were off! Retracing the route we had mistakenly just driven, encountering the various dogs, kids and pedestrians who had minutes before, scattered in our wake. We even had the cheek to shake our collecting tins as we passed, a sea of bright blue, generally unfit but making up for lack of athleticism with gossip and laughter…The anticipated rainfall gave way to a grey mugginess making it warm, very warm in fact, causing my cheeks to flush with each step. But we did it!! It was further than I’d anticipated but with every step I had a point to prove, to myself, and to all of the doubters out there who have written me off… I bribed Sam with the promise of ice cream and Joe skipped along commandeering the camera, climbing fences and walls and leaping over the puddles the rest of us tiptoed gingerly around, the promise of a picnic spurring us on, Deb’s dog Lucy, trotting along beside us. When we had completed the lap we sent obedient menfolk to the cars to retrieve the picnic and children racing across the grass to claim empty picnic tables. The tables we commandeered weren’t close enough together requiring Deb to intimidate a poor man and his dog until he gave up a closer table. And so ensued much eating and drinking and gossiping and laughter and blanket-wearing – it was cold!! And a wonderful time was had by all. I would do it again in a heartbeat, yes, even the walk! I had such a lovely day with wonderful people. And we are set to raise a lot of money!!! Since the walk, people have said some lovely things to me. I don’t think I’m special, or worthy of praise. But I do think I am lucky to have some wonderful, generous and supportive people in my life. For that, I will always be grateful.

I’m not having a great week. Since the walk on Sunday, I’ve had a cold. It’s getting better now but it did slow me down. I’m getting up earlier and earlier before work because my symptoms are getting worse first thing in the morning and it takes me so long to get moving. Funnily enough, my insomnia has improved and around 5 nights a week I average 6 – 7 hours sleep which is brilliant for me! The fatigue during the day is still ridiculous but it’s slightly more bearable if you’re sleeping at night. My tremor is making some dramatic and unwelcome appearances and I know I’m just a bit more ‘off’ than usual. Hopefully it’s just a blip because I’ve got things to do, like baking 200 cupcakes to look like breasts…. but that’s a whole other post for another day!

One of the lesser known symptoms of Parkinson’s is cognitive impairment. It is characterised by predominant executive function deficits, attention difficulties, visuospatial dysfunction, slowed thinking, difficulties in word finding, and difficulties in learning and remembering information. Up to 50% of Parkinson’s sufferers will experience some degree of Mild Cognitive Impairment with others going on to develop Parkinson’s Disease Dementia. Hey, something else to look forward to!! I’m experiencing MCI now at a level where it frustrates me frequently and impacts on my daily functioning… it’s annoying and scary and time-consuming and exhausting… so I’ve been referred for specialist intervention. They will need to be good for the challenge that is me!! Don’t worry, I’m getting to the funny story…

So, my Joeys have arranged for us to do our own Walk for Parkinson’s around Chasewater on 9th June. I was there when we planned it and subsequently arranged the finer details of the day (the picnic!) and the fundraising efforts we would undertake. However, despite knowing all of this and agreeing all of the arrangements, in my mind we were walking round Carsington Water, which is a whole different body of water and a different walk entirely! I even invited my sister in law to walk round Carsington Water with us… Then one night, during an insomniac moment I decided, purely out of interest, to Google the walk around Carsington Water… see the image below and imagine my surprise when I noted the distance and the time taken to circumnavigate the reservoir…

I read it. Then I read it again. Panic rising as it quickly dawned on me that there was no way I could walk for 4 hours… and it would inevitably take me 4 hours because I’m slow… even with my sticks I’m slow, like an abnormal load on the inside lane of the dual carriageway… What possessed me to agree to that?? More importantly, what possessed the Joeys to choose such a challenging walk?? I was confused. What we had discussed was a leisurely stroll around a lake then a picnic… this was reading as something akin to a marathon! The plan to do a second ‘lap’ after the picnic was beginning to feel like a sick joke. I read it a third time and I felt the colour drain from my face and beads of sweat form on my forehead as I realised I would have to tell the girls I couldn’t do it…. After all the planning and meetings with agendas and minutes (you think I’m joking!), I’d have to drop out. It would be like cancelling the main event leaving only the support acts ( sorry girls, it’s the best analogy I could come up with…). I shook my head to clear the insomniac fog and in that moment, I remembered that Cat had said that Parkinson’s UK had needed to know how far we were walking and she’d told them 3 miles!! Something was clearly amiss… I heaved myself out of the indentation I’d created by spending much of the night on the sofa, and staggered stiffly into the conservatory, scrabbling around in the dim twilight, desperately trying to find the agenda from the last Joey meeting… Disaster! No mention of the location of the walk, although the walk was mentioned. In desperation I scrolled back through pages and pages of group text conversations but still, the location remained a mystery. Then a lightbulb moment!! Thank goodness for Mrs Shenton and her minutes!! She is a credit to the beavers! She had emailed the minutes of the last meeting and there, in glorious, bold, black font, was the word Chasewater. I read it several times to ensure I wasn’t mistaken (again!) and let out an audible sigh of relief. Imagine how stupid I’d have looked if I’d cancelled because it would take me 4 hours to walk it… Imagine if I’d decided to do it anyway because so many people had sponsored us and I couldn’t let them down… I’d have been at Carsington Water wondering where they were, and they’d have been at Chasewater wondering where I was… it’s lucky my sister in law is working that day and can’t do the walk with us because I’d have sent her to the wrong location too… Thank goodness for insomnia and infrequent lightbulb moments or I’d still be oblivious now. Even when Chasewater has been discussed before, I’ve clearly been hearing Carsington Water. I am a liability.

I now have a small notebook with me at all times so I can document important stuff as soon as I’m told it, before my defective brain cells allow it to float gently out of my head, never to be accessed again, until some random insomniac moment. What’s my name??? Actually that’s a very good question!! Below is a picture of my name badge that I wear for work. It clearly states my name. It’s even spelled correctly ( but that’s a whole other discussion for another day!)… so why, at work do people call me Gill??!!!! Is there any wonder I’m confused?!

I used to drive 200 miles every time I wanted a haircut. Then I’d pay top salon prices to have the hairdresser I’d known for years cut my hair. I always loved how he cut it but even I could see how ridiculous that was. What forced the change in habit was him going to Brazil. Yep, it took him leaving the country for me to even consider that I might need to find a hairdresser a smidge closer to home… I researched local hairdressers, asked people for recommendations and tried to get an appointment, somewhere, anywhere, which proved to be an impossible task. I’m not precious about my hair. It grows quite quickly. There’s plenty of it. So in terms of what I needed from a hairdresser, my needs were simple – someone who can cut short hair, which looks ok, with minimal effort from me. No one fit the bill or had any appointments… so I ended up at the hairdressers in the village. It’s one of those proper little old lady salons where the same little old ladies go week in and week out, everyone knows everyone else and there’s a special offer on a shampoo and set on a Tuesday and Wednesday… you can see how I would fit right in?! But I love it. For the village gossip, the haircuts and the price! £12 for a wet cut and a blast with the hair dryer!! What’s not to love?? Today I arrived early for my appointment, mainly because I couldn’t remember what time it was. I sat in the seat in the window listening to the conversations between the hairdressers and their more elderly clientele… The lady before me didn’t want a blast with the hairdryer because she was going to the gym… hmmm she had a good 20 years on me and yet here she was, infinitely more spritely! I was ushered through to the basins to have my hair washed. The lady who washes your hair is rather rotund, voluptuous in fact… the gap she has to stand in to reach the sink is minuscule… let’s just say there is more of her than this gap can easily accommodate and so, consequently her breasts and stomach rest on your arm and shoulder for the duration of your hair washing experience… I don’t mind a bit of physical contact but they really should look at moving that sink! It’s not even worth raising the issue of the near-smothering from a bingo wing while she’s scrubbing the back of your head when you’re only paying £12… is it?! Within minutes the razor was out and I now have significantly less hair. You can tell it’s an older ladies salon because I’m too tall, even with the chair as low as it will go so I have to slouch down in the seat like some sort of depressed teenager… A quick blast with the hairdryer and I’m heading to Bird’s for a post-haircut elephant’s foot!! Far preferable to a post haircut gym session… however I’m a little bit disappointed that I’ll never find out what the GP said to Marjorie and I didn’t get to hear the conclusion to Jean’s bunion story…

I read a lot of research. From the bizarrely questionable to the downright ridiculous with all manner of rigorously tested scientific hypotheses in between. I read it all. The ‘cures’ range from a man in his shed with a bucket on his head to vitamin B12 injections, spinal cord stimulation and deeply invasive brain surgery. When it comes down to it, if it works, I’d do it, in a heartbeat, no questions asked… Anything that is proven to give a better ending to the life story that has been written for me, is worth a shot. But that miracle cure remains out of reach, despite the media regularly implying otherwise. Read the actual research!! Not the version of it the newspapers edit to make sales. This is an article I read recently because it enticingly used the word ‘cure’… https://www.irishpost.com/news/doctors-find-cure-parkinsons-disease-irish-dancing-167346?utm_source=facebook. It is not a cure. The severity of some symptoms is reduced. And that’s great. But to elicit anything remotely resembling a cure, I would need to be doing a Riverdance everywhere I go. Michael Flatley I am not! Let’s face it, I’ve only just mastered getting up off the floor, so a perpetual Irish jig seems slightly over ambitious in view of my current skill set… Don’t get me wrong, I totally get how music and dance can help massively to reset the Parkinson’s brain, so I’m not dismissing it. I have a playlist of particular songs I listen to when I’m doing particular activities and it does help. But a rendition of Riverdance every time I want to move seems a little bit excessive, even to me! So no, it’s not a cure. But if it makes people feel better, who am I to knock it?? And maybe one day when my physical capabilities extend beyond maintaining an upright posture, I might just give it a go…. I wonder if Fiona is ready for the challenge of teaching me how to jump again??? There’s a rehab session worth watching!

Mark’s dad, my father-in-law, Steve, was cremated today. It is a little bit alien to me that there was nothing to mark his passing, no act of remembrance. I know that can happen at any time and it doesn’t have to be today, or even anytime soon. It’s just not what I’m used to, nor what is ‘expected’. Maybe it’s good to challenge expectations now and again? It depends who it affects and how… Time will tell whether missed opportunities will create lasting regrets. The rose I bought to remember Steve is doing it’s best to bloom today. Things like that hold more significance for me… RIP xxx

I’m on Annual Leave this week. I’m having a week of catching up with myself and sleeping and loving my little family and doing all those boring but necessary jobs that I’ve put off doing until I had a week off work… No holidays in the sun for me. I get my fix from the photos everyone shares on social media. My time will come… but for now I need this… going to bed when I’m tired, not getting dressed, eating what I want, when I want, furniture shopping, haircuts, blood tests, gardening, spring cleaning, baking, laughing with my boys, talking and listening, really listening, taking photos and making memories, planning little things to make people smile, taking stuff to the tip and charity shop. We all have too much ‘stuff’. Tomorrow morning I have a blood test at 9.07am…who on earth schedules an appointment for anything at 7 minutes past the hour?? How many minutes are allocated for taking blood?? I’m an awkward sod with only one vein capable of evoking the measly few mls of blood required for the sample, and that’s if you can coax it out of hiding in the first place. I can sense I will probably challenge the validity of having a set amount of time in which blood can be taken. On your marks…!