Normally when something happens that bothers me, I rant, I write, I reflect, I rationalise and I put it behind me. Sometimes I revisit those episodes in my life to remind me that I have learned from them. Sometimes I revisit them to remind me that I am a better person in spite of them. I choose how I react to the things that happen to me. That is what defines me. Right or wrong, good or bad. I own the choices I make. Sometimes you react instinctively to something which may not be the reaction you would necessarily have chosen if you’d given the situation a bit more thought. But that’s what makes us human. Sometimes our heart overrules our head. That happened and now I’m sad. I’m sad because I feel hurt. I’m sad because someone took advantage of me and disregarded my feelings. I’m sad because I tried to help. I’m sad because I’m allowing it to eat away at me and ruin my day. And I’m sad because I’m sad. I have chosen happy for so long, I’d forgotten how this feels. So it’s time to take back some control. And make some changes. Things happen for a reason and I think this happened to tell me something about myself. I’m not the person I thought I was. But that’s OK. I can make some adjustments and refocus on what is important to me. Hmmm that sounds selfish when I read it back… I cannot be this sad version of me. It’s making everyone around me sad because I’m so spectacularly good at playing the victim, and that’s not fair. Time to shake it off and do something about it! I choose happy… I just need to tell that to my face… With that in mind, I’m taking a social media break. No attention-seeking, ‘I’m leaving cos the world owes me a favour’ posts, just a necessary, soul-restoring break. I’m not sure how long for. People who need to contact me know where I am and I’ll probably keep my blog updated because this is part of the healing process for me. I’m sorry if I sound dramatic but that is how incredibly hurt and sad I feel. Bring on annual leave and the puppy and new adventures… two more shifts…

I need to counteract this misery with something happy, amusing, positive…. Erm…. Something positive! I finally got my repeat prescription updated! It took way more effort than it ever should have, and some veiled threats which I’m not proud of, but miraculously, three weeks later, it’s now done! In the meantime I have developed dystonia in my right hand too which is pretty impressive and annoying in equal measure, so hopefully that can now be addressed too. Either that or I need to find a use for a contorted hand?! Happy! Today is my dad’s 79th birthday! I’m seeing him for the first time in 2 years in September. Good reasons to be happy! Funny… funny is eluding me today. So I’ll go for another positive. On Saturday we have a kitchen design appointment. Fingers crossed this is the one and I will finally get my dream kitchen, or a decent version of it. It wasn’t until we began this process that I appreciated how important it is for me to get this right, or how much kitchens cost!! I thought our savings were generous until we started getting quotes… We are also getting a quote to replace all of the flooring downstairs! Operation Future-Proofing for Parkinson’s is firmly underway. I could look at that negatively because we even need to consider this stuff, but I’m excited because I get a new kitchen with all the bells and whistles and lovely new flooring!! Win-Win!!

I have been doing some intensive training with Obi before we get the new pup. Indoors he is fine and we have no issues. Outdoors he has no recall and has been poorly socialised because of Covid and my own anxiety. So we took the bull by the horns and tried to address some of his issues. I watched videos and read everything I could and tried to recall what we were taught at puppy training. However he is a dog of little brain who develops rapid onset deafness when distracted. This increases the difficulty of the challenge I set myself, tenfold. My aim was to improve his walking on the lead so he was less reactive to other dogs and also to improve his recall. With that in mind, I bought a sort of dog training utility belt to keep treats and poo bags and the DooKee and leads of different lengths. I know, you’re all jealous! But it frees up my hands for dealing with his antics. Training is going well 😳🙄🤦🏻‍♀️🐶🤪. It now takes us about 2 hours to do a walk that normally would take an hour. But his recall is brilliant because he doesn’t actually leave my side… I await the dietary advice from the vet when he’s put on 10 stone from all of my ‘training’!! Obviously I’m joking… Just call me Barbara!! And I’m getting another dog?!!!

So I’ve been interviewed and photographed by the lovely Scott who works in Communications. He was very interested to hear about my little book of poetry, and how that came about, and also working through the pandemic as a bit of a vulnerable person. We talked about all sorts of stuff, particularly dogs, so who knows how the final article will read?! Watch this space.… if my face doesn’t appear on a PC near you soon (there’s a scary thought), I’ll post the story on here. I might just do that anyway because it’s not everyday someone writes an article about you…

I have a new job role at work. Ward coordinator. Who knew I had an interview in me?? And more importantly, who knew I could score the most points at interview?! Not what I was expecting at all! The job is not massively different to what I did before but a bit more of a cohesive team to take ownership of the wards, and a few more bits and bobs to embrace. Together we will achieve great things!!

Which has caused me a difficult dilemma. I’ve always said that I wanted to be a specialist midwife in the field of mental health/safeguarding/drugs & alcohol but now that the seemingly perfect role has come up, I’m not sure I do?! I’ve thought about it long and hard and this new job as mental health specialist probably won’t be what I want… I may live to regret this decision and I may apply anyway to prove I wouldn’t have got it, but at this moment in time, I don’t think it’s for me…. At times like this, I wish I had a crystal ball!! Part of me thinks I should be content with my lot and not try to complicate things, but part of me, the ever growing Parkinson’s part, thinks what if…?!

Despite all of the good stuff I’ve got going on, I’ve given in to my angry side. To be honest, I think I have been perfectly well-behaved and rational about the whole thing, considering I could have lost it!! GP surgeries. I get they have a difficult job to do, especially at the moment… but some of their policies and procedures are down right ridiculous!! I saw my lovely Parkinson’s nurse in July. She increased two of my Parkinson’s drugs. She wrote to my GP shortly after that appointment to ask for the relevant changes to be made to my repeat prescription. I get 5 items every 28 days which I pay for. I do have a pre-payment certificate but for the purpose of this argument, I pay for my prescriptions… so when I received my copy of the letter, I checked on the NHS app and no changes had been made. I attempted to contact the surgery to discover you now have to ring between 12 and 2 pm to discuss medications. It was after 2 pm. So I rang back the next day, to be told the system was down and anyway the woman who deals with medication was not there. Great. I rang the following day and the phone just rang and rang and rang. When I spoke to someone else she said she didn’t have authority to help me…. The following day I was at work so could not ring. In desperation, as I now needed to order a repeat prescription, I called in at the surgery on my way home from work. The very helpful receptionist told me the woman who deals with that had gone home. I told her I wasn’t leaving until someone offered me some help. Everyone behind the little plastic screen lowered their heads, imagining I was about to kick off. I didn’t. There was no point. The receptionist offered me a bright pink post it with an email address on it and told me to try that, really, what did I have to lose?! I sat in the car and ordered my repeats at the old dosage and penned an email. I’ll copy part of it here so you can appreciate the tone and intent of my email and then the spectacular response I received… all identifying features have been removed but it went a bit like this

To whom it may concern,
Over the past week, I have tried in vain to contact the surgery to get my repeat prescription updated as per the recent letter detailing medication changes from my Parkinson’s Specialist Nurse. I work, and phoning during certain hours is difficult. When I have managed to phone during those hours, there has been no one available who has been able to make the necessary changes, or even to take my call, so why have specific times?! I have even called into the surgery in person to try to resolve this, to no avail. Emailing is my last resort. As you are no doubt aware, Parkinson’s medication is part of the Critical Medications list and doses should not be omitted or delayed. In an effort to get my repeat prescription updated to address my current symptoms, I have delayed ordering my next repeat. Unfortunately, this now means I will only just have enough medication to last until it is issued, and also have another month’s supply of the incorrect dose. As someone who pays for their prescriptions, which will be lifelong and still only issued every 28 days, I find this disappointing. My Parkinson’s nurse is waiting for me to feedback to her about the effectiveness of the change in dose but I will be unable to do so because my repeat prescription has not been changed. I hope this can be rectified at your earliest convenience, or if not, I can be advised how I can achieve this, as I feel I have tried everything now. I look forward to your response. Kind regards, Clare Gill

Hi Mrs Gill,
Many thanks for you email below,
I have looked on your medications and can see that your repeat prescription was issued yesterday and has been sent to the Pharmacy.

Thank you for your email. I know my prescription has been issued because I ordered it. However it has not been updated with the changes as detailed in the letter from my Parkinson’s nurse which is actually my issue if you re-read my original email. I hope this can be rectified as I am left without the correct dose of my drugs to address my current worsening symptoms. Kind regards, Clare Gill

Hi Mrs Gill,
The last letter we have on your records is from your Consultant Neurologist and the clinic date is 14.1.2021. Would you be able to tell me which Hospital you are with for your Parkinson’s so I can contact them for the most recent clinic letter

I’ll leave it there because my further correspondence is just me getting more and more exasperated and them doing nothing!! Am I wrong??!!!! I’m so cross that I’ve essentially wasted another month’s prescription because they’re simply not getting it!! They’d obviously looked at the last letter from my Neurologist and then asked me where I receive my care???? Beggars belief!! And people wonder why GP surgeries get such a bad rap?! Totally deserved in this instance!!! Answers on a postcard if you can suggest a way I haven’t yet tried to get my repeat prescription updated with the correct doses????? Mrs Angry of Branston.

My boys are at their grandma’s. She very kindly took them to Dundee for a few days so Joe could see whether he really does want to go to uni there. And apparently he does. Marvellous. Nice little round trip for us if he gets a place… Still got time to put him off …. They are coming back tomorrow and my few days of peace will be shattered. I’m almost grateful to be at work… I did say almost!

I had a conversation recently with someone who asked me how I was. I generally lie because it’s not a simple question to answer. So a generic ‘I’m fine’ or ‘I’m OK’ usually suffices. People don’t really want to hear all the specifics of your degenerative disease, do they?! They are asking to be polite. They don’t know how to respond when you share the reality of it. So it’s better not to. I’ve learnt that. Anyway, for some unknown reason, I decided to share on this occasion. Over share probably, knowing me. I talked about the constant pain that doesn’t respond to analgesia, explained dystonia and dyskinesia, the reasons I can’t sleep, the scary cognitive symptoms I’ve experienced recently and my on/off issues. It wasn’t for sympathy. I don’t need that. I was just trying to paint an accurate picture of my life. I could have added so much more!!! The response?! ‘If I were you I would just cry all day’… I was shocked. I wasn’t expecting that response at all. She went on to ask whether I’m on anti depressants because I must be so miserable?! I’m not as it goes. Miserable, or on anti depressants… But now I’m left wondering… Is my life so bad? As a casual observer, am I doing this all wrong? Just because Parkinson’s is progressive and degenerative, do you have to give in to it and fall at the first hurdle?? Do you have to live an unhappy life because other people believe you should be unhappy? Don’t get me wrong, I have been in a very dark place because of Parkinson’s, but I think it’s natural to go through that grieving process when you get any sort of devastating diagnosis. And it is devastating. My life has been taken from me. I am restricted and it will get worse. BUT… I also have a great life. I can still work and drive and do a lot of the things I want to do. I have accepted that the things I can no longer do are simply not in my future. And I have discovered hidden ‘talents’ (questionable?) which are taking my life in a new and different direction, which is serving only to make me happier. I have a very supportive family and amazing friends and dogs! I have so much to live for and so much I still want to do. Why on earth would I waste my time sitting crying my days away?! I have bad days, who doesn’t?! But bad days don’t make a bad life. And nor does Parkinson’s… just saying! And I dare anyone to tell me, ‘It could be worse!’…. That has to be the single, most unhelpful comment anyone could ever make. And don’t tell me I’m ‘lucky’ it’s ‘only’ Parkinson’s… spend a day being me and then tell me how lucky you feel! Actually, I am lucky. Lucky that I’m not negative and miserable. Lucky that I have some wonderful people in my life to pick me up when I’m down and help me to achieve some pretty amazing things. So yeah, I’m lucky… very, very lucky ❤️🌈

That’s all I wanted to say really… I have news to share on Friday 😉😳❤️🌈. Because my life is so bad yunno…

What a funny old day. I’m writing this primarily to document the weird health-related stuff so I can keep track of what is going on with me. It’s so easy to blame everything on Parkinson’s… I mean anything brain-related must be Parkinson’s, right?! My Parkinson’s nurse told me that the symptoms I’m experiencing are not necessarily a sign that my Parkinson’s is progressing, but equally, they could be. As I experience different things I become more and more convinced it is progressing. I wish they would just tell you. I want to know!! I think that’s probably why I’m subconsciously future proofing my entire life. Getting stuff done while I can. I hate that my life has come to that at 48 but at least I can still get some stuff done. My ongoing issue with my right leg is yet to be properly addressed. My GP won’t adjust my medication until they get a letter from my Parkinson’s nurse…. And that generally takes around 3 weeks. It’s Ok, it’s not as though I’m in pain or anything… I’m beginning to wish I’d just opted for the pain meds but gabapentin or pregabalin are not your average pain meds and are not high on my list of meds I want to take. Have you seen the side effects of those drugs?! So yeah, I’m dragging my foot again, the dystonia is agony, and yeah you can hear me coming… my walk is distinctive. I’ve been told it’s something that can be managed but not fixed. Great.

Today’s new symptom was a little bit different. Something I have never experienced before, and to be honest, it frightened Mark and I… is this what I’ve got to look forward to?! Anyone who has me as a friend on Facebook would see that I’ve been fairly active on there today. Lazy day off with time for a bit of photography and a bit of poetry writing. So I wrote a post about random acts of kindness and wrote the poem attached to that post at the same time. It was not pre prepared. I then got on with my day and pegged some washing on the line. I came back to my post and read the comments and then went to put another load of washing in the machine. When I next looked at that post, it had changed. The poem was not the poem I had written. It was completely different, longer. I wondered whether people were commenting on an old post maybe?! So I went on to my profile to see where my original post had gone and also to try to work out why they were commenting on an old one?! But there was only that one post. How had that happened? How had my poem changed?? I definitely hadn’t written the one in front of me… but there was no other post. Panicking just a little bit that I had finally totally lost the plot, I told Mark. Mark didn’t know what to think. Was I having delusions/hallucinations? My poem couldn’t possibly have changed so I must’ve written the one in front of me, but it was so unfamiliar! Not knowing what to think, I carried on with some housework. And the next time I looked at my post, the original poem was back! Relieved but also disturbed, I honestly didn’t know what to think. Delusions and hallucinations are a well known side effect of the drugs I take. Let’s face it, drugs that act on your brain have to have some sort of effect…. Bloody scary though. So easy to convince yourself that you are going mad. I hope it’s a one-off because I was tired or something but I suspect that it probably won’t be…. Not sure how that fits in with being a normal functioning working adult?! I know you’re all going to think it’s not that bad and you’ve all experienced something similar, and although the rational me would probably say the same thing… but this was different and scary.

Despite that little blip, I got on with my lazy day. The dog and I were out for ages while I messed with my camera, trying to get those elusive bird photos. I’m not sure why I’m so bird obsessed as I’m also particularly bird phobic! Obi ran round looking for the fox he’d spotted last week while I tried desperately to take photos with a dog poo bag in one hand and retractable lead and roll of poo bags in the other. The heron screeched loudly overhead as Obi disturbed his resting place again, but I’d stupidly replaced my lens for a large zoom lens and it couldn’t adapt quickly enough to my hurried demands marred by poo bags and a dog hurtling towards me at speed. I don’t know what he thinks he’ll gain from unbalancing me but it’s a regular game on our evening walks?! I did get some shots of the geese flying to their evening resting place, but that shot of them flying directly overhead remained elusive for another day…. And why did no one tell me about the hidden sprinklers on the golf course??? We cut across the golf course as a short cut home only to get an unceremonious soaking when the damn sprinklers turned themselves on in some secret random pattern. Just when you think you’re safe, another drenching from out of nowhere! It’s a good job that local people are used to seeing me in some strange predicaments… wet T-shirt competition for one?! Nothing usual about that!! As long as me shrieking my way across the golf course as the icy jets of water hit me is not on CCTV anywhere…. Even the dog was laughing at me!!

Oh my goodness, I’m so excited!!!! Meet Pinky! Name to be changed and currently under discussion…. Isn’t she adorable??

Because I like to do things the hard way she’s currently located in the Ukraine but she will be joining our crazy household on 21st August!!! She’s only 5 months old but looks as though she will be smaller than Obi when she’s fully grown… but then again, who knows??? She could be a Great Dane!! She was found next to some rubbish bins with a couple of other pups who may or may not be siblings so absolutely no idea of her heritage. That’s what makes it all so much more interesting. I can’t tell you how excited I am! Obi’s not going to know what’s hit him 😳😂. I do hope they will be best buddies though… what could possibly go wrong?? Is this how it starts, I wonder… first one dog… then two. Where will it end?

In other news, I also bought a new car!! I am getting an automatic to extend my driving career. Mark wanted the floor to open up and swallow him when I asked the lovely salesman if he would be able to show me how to drive it?! Well, it seemed like a very sensible question to me! So in October I will have a nice, shiny new car to match Mark’s! My requirements for a car are very different to Mark’s: Will it get me from A to B? Has it got a winter pack? Can I fit two dogs in it? Job done. I’ll have it. When they started talking about horses and mild hybrids I switched off. I just hope I can tame the horses…

Happy days! 🌈🌈🌈🌈🌈🐶🐶🚘

And just because I can…

A quick update on my neurology appointment today, but more importantly, the inevitable, embarrassing incident which befell me… I can’t seem to set foot in that hospital without doing something ridiculous. It’s almost a subconscious need to prove that I do have a need to be there, more so, to see a neurologist… a ‘normal’ sane person would never behave like me!!

So after a busy, hot shift at work, much of it spent standing under the workman’s tube to gain maximum comfort from the cool stream of air issuing from within, I finished early to attend my neurology appointment. Now to back track a little, I had spent my shift wearing chub rub shorts under my uniform because of the ridiculous heat and my crazy decision not to wear tights, but had no need for these under my normal clothes afterwards, so I had taken a clean pair of knickers to change into before my appointment. So there I was, dressed in an all-in-one jumpsuit affair which zipped up the back. In hindsight, probably not ideal in any circumstances, but more so for a hospital appointment. I arrived with time to spare and surprised myself by being able to find a parking space no trouble at all! I figured I’d have plenty of time to nip to the loo before my appointment time, gathered my essentials, and headed for the main entrance. As you enter the hospital, there are some public toilets. Seizing my opportunity, I nipped in. At this point, it occurred to me that an all-in-one item of clothing which zips up the back was perhaps not the cleverest decision I’d ever made, particularly as I had no one with me to zip the bloody thing up. Too late! Ablutions complete, I attempted to squeeze all my wobbly bits back into place… something was preventing me from pulling it up… I spun round in an effort to see what the problem was but that just unbalanced me and slammed me clumsily into the wall of the cubicle. The tuts of the people waiting were clearly audible. I tried yanking it but it was totally stuck, just below my midriff, the lace on my nice knickers clearly on show. Red-faced and flustered, and without really any forward planning, I burst out of the cubicle, bra (thank goodness it was a good one!), nice pants and wobbly bits on show, much to the sheer terror of the solitary little old lady who was trying to manoeuvre her mobility walker through the tiny gap between the sinks and the door. I appealed to her good nature and asked her whether she could help with my zip?! She was like Mo Farah leaving those toilets! Not a word nor a backward glance. I mean, under the same circumstances I probably would have done the same if I was her!! So I shuffled back into my sweaty, airless cubicle and had something of a brainwave. If it wouldn’t go up, it would surely go down?! I managed to yank the whole thing off, undo the stuck zip, put it back on and do the zip up! I even made it to my appointment on time… impressive, or what?! Probably more impressive if I’d just done that in the first place…

The appointment itself was a little bit less eventful… thankfully. Do you think there is CCTV in the toilets?! Never mind… My appointment was specifically to discuss my off times and resultant dystonia. A little definition so you know what I’m talking about: Curled, clenched toes or a painful cramped foot are telltale signs of dystonia. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). For example, dystonia is a common early symptom of young-onset Parkinson’s.

My options are to double the dosage of one medication, increasing the frequency of another medication and starting either gabapentin or pregabalin for the neuropathic pain. So, because I’m only 48 and want to function for a while yet, there has to be an element of ‘grin and bear it’ with the smallest possible tweaks to my medication so I have options for the future. Parkinson’s medication has a limited life span so I don’t want to use it all up now. I have much still to do and when the drugs no longer work, I’m doomed. So, we’re doing the bare minimum to get some effect. This cannot be fixed. Any improvement on the current state of things would be amazing. I’m grateful for the autonomy I’m afforded when it comes to tweaking my medication (to a point). As well as everything I’ve said about the drugs I take, you also have to carefully balance any change in dose with a potential increase in side effects. In this case, compulsive behaviours and dyskinesia. I don’t think we’d notice an increase in my compulsiveness (joke!) but dyskinesia doesn’t sound much fun either!! Another little definition for you: Dyskinesia (involuntary movements) is muscle movements that people with Parkinson’s can’t control. They can include twitches, jerks, twisting or writhing movements. Dyskinesia can affect various parts of the body such as the arms, legs and torso.

So yeah, not the end of the world but not the teeny, tiny miracle I was hoping for either. Definitely a work in progress. And at least there is stuff to try. There’s a rainbow right there! And that little old lady didn’t keel over in fright – double whammy!! Today is a good day!!! I’ll attach some very poor selfies of my attire, after I’d removed my nice bra and soaked my clothes with the ice towel I was wearing in a jaunty fashion… but you get the idea, maybe?! 😳🤦🏻‍♀️😂 Yeah… not great…

How do I still function….?! It’s difficult to take a photo of your whole (wet) self!

I’m sitting in my car in 30 degree heat waiting for Tom while he has his Covid vaccine. Whilst I bemoan my temporary incarceration in the equivalent of a large oven, I have time on my hands to document some musings… you lucky people!!

I’m struggling at the moment. The dystonia I’m experiencing is causing unbearable pain and discomfort. Neuropathic pain is the worst because your bog standard analgesia doesn’t touch it. My options include anti epileptic, anti spasticity medications, or Botox injections into my foot. None appeal really. I already take so much mind-altering medication… but what choice do I have?? It is impacting on my daily life massively. You watch, I’ll go to my neurology appointment on Wednesday and they won’t offer me anything because I haven’t had symptoms for long enough or some other ridiculous reason. I’m counting down to that appointment… literally. The anticipation is too much… as will the disappointment be if I can’t get some relief from this. Parkinsons sucks sometimes. It’s a good job I have so much going on to distract me!

Like the book of 67 tips I was sent recently. I read it in the hope that I would be inspired or educated or something. I was left feeling amused and little else. This book was not written by a PWP as I had imagined it would be, and appears to have been written by a woman who’s mother had Parkinson’s. A lot of the tips were common sense at best. Useful to have them all together in one handy location I suppose… However, the one that tickled me suggested having a pole installed beside your bed, which is not a bad idea, but I now can’t get this image out of my mind…

I’m sorry, but I just find it so funny!! And before anyone points out that she probably meant a different type of pole. She didn’t. This is absolutely what she meant. Every time I think about heaving my sorry self out of my bed to hang seductively from a pole, I laugh until I sound like Muttley and my eyes are streaming and my chest hurts! Thank you for the laugh but a pole will not be on my list of things to do future proof my house! Maybe I’m missing a trick though?!

Someone needs to take control of me. I’m dangerous when I’m left to my own devices. I get ideas and do things without really thinking them through. Fortunately the heatwave we are experiencing has slowed me down significantly. So I spend the day lolling around and reserve my best ideas for the hours of darkness. Like dying my hair. I’ll just leave these here…

It was like a chainsaw massacre in the shower 😱🙈 Luckily I only managed to get a little bit of dye on the cream paintwork! The dye washes off your skin eventually, right?!

I’m back at work on Wednesday after 11 days annual leave. I feel guilty having time off when the girls who are working are dealing with not enough staff and this insane heat! However, I have to take breaks when I can get them or I won’t be able to continue to work at all. I’m sorry. It will be just the same when I go back as it is now only I’ll be moaning about the heat and my chub rub pants. Are they supposed to make a noise when you walk?? You can definitely hear me coming… from quite some distance! I mean, I wouldn’t know a thigh gap if I walked through one, and chub rub pants are designed for us larger ladies who have thighs that are well acquainted with one another, but I’m generating enough static to run many, many photocopiers!! I’ve ordered some proper ones from a more reputable source but they are lobster red… let’s hope I don’t have an accident. It will look like a baboon’s backside sticking out of a hospital gown…

I wrote a very long and boring post about a day in the life of someone with YOPD i.e. me! It was SO depressing…. So I ditched it. From a ‘raising awareness’ perspective, it was OK, but in terms of reader experience and engagement, it was dire. And this is from someone who tries to focus on the positive! Jeez imagine if I was in my bleak, depressed ‘woe is me’ phase?! However, I do just want to make a point on the back of that very boring post, and that would be simply to appreciate the the small things and not take anything for granted. And I mean anything! What I wouldn’t give to be able to turn over in bed, or balance on one leg (you do this more than you realise… try stairs without being able to balance on one leg), or sleep for more than four hours, or just put my knickers on without twenty minutes of thinking time and forward planning, eating what I want when I want, having the energy to do whatever I want to do, not having to plan my day/life around ‘on’ and ‘off’ times, remembering to take medication every few hours, planning meals to fit in with that… You know what, I could go on and on and on but I’m boring myself now! You get the picture. We all have things that we take for granted and things that we wished we didn’t. I can’t change aspects of my life but I can choose how I look at each day and I have so much I still need to do! My ideas are getting bigger as that remaining rational part of my brain is quaking and thinking, ‘Oh Lordy, what is she up to now’?! Watch this space…

With that in mind, we’ve been looking at cars. We spent two hours yesterday driving Kieran crazy with my many, many requirements in order to future proof my car and extend the length of time I can drive for. The staff in the showroom were visibly twitching every time I touched one of their shiny new cars to test things that no one else in the history of car retail had ever needed to test. How many times did I need to heave myself out of the car, or pretend to lift things in and out of the boot, or check where my arm would rest in various situations or raise and lower the seats?? They were glad when I went shopping and left Mark to it!! I can still drive but a number of things make it painful and difficult, so I want to address those. Switching from a manual gearbox to automatic seems the most obvious change, but there are others like the height of the car and even the shape of the seat. My perfect car is beyond my budget so I have to decide where the compromises will be made. It’s difficult when you know your health will deteriorate but you don’t know how much or how quickly… so while I was pondering important life choices, Mark bought a new car. Just like that! Bit rude…. so if any of you know of any cars that have flat front seats and a boot with little or no loading lip, let me know.

I spend a lot of my time exploring different genres of music. Music can be very helpful in keeping PWPs moving or getting us going again if we experience ‘freezing’. I do all of my physio to music and now Fiona will get me to aim for so many sets of each exercise per song. The beat and tempo of the music is obviously important, but I prefer to listen to certain instruments and the lyrics also must appeal. I’m currently obsessed with Run Through Walls by the script. Alexa is so fed up of me asking her to play it she ignores me now. I’ll share the lyrics because I can relate to them, so, so much. Bar one verse, this song could have been written for me…. You’ll see why.

Run Through Walls by The Script.

We have no visible superpowers
Sit in the kitchen and talkin’ for hours
You always show up at the perfect time There’s no one born with X-Ray eyes
There’s no way to know what’s on my mind
But you always say the words that save my life. I’ve got friends that will run through walls
I’ve got friends that will fly once called
When I’ve nowhere left to go
And I need my heroes
I’ve got friends that will run through walls. You may not be superhuman
But you got the strength to carry me through it
My shield of steel when I’m too weak to fight
Yes, you are. And that day my mother died
And you held me up and you wiped my eyes
It was in that moment when I realised. That I’ve got friends that will run through walls (yeah)
I’ve got friends that will fly once called
When I’ve nowhere left to go
And I need my heroes
I’ve got friends that will run through walls You’re always happy for my happiness
And sad for my sadness
– Me off, you’re mad for my madness
Ever since we were young, help me rise from the ashes
If I fall from the sky you’d catch me. ‘Cause friends don’t let you do stupid things
Oh, friends don’t let you do stupid things
Oh, friends won’t let you do stupid things
Alone, alone. I’ve got friends that will run through walls (yeah)
I’ve got friends that will fly once called (yeah)
When I’ve nowhere left to go
And I need my heroes
I’ve got friends that will run through walls Yeah, yeah. When I’ve nowhere left to go
And I need my heroes
I’ve got friends that will run through walls
I’ve got friends that will run through walls
And I’ve got friends that don’t text, they call. When I’ve nowhere left to go
And I need you the most
I’ve got friends that will run through walls

My friends are my everything. Even when I’m doing OK, I still need them. The comfort I get from just knowing they are there is immeasurable. My support, my strength, my comfort, my joy, my hope, my encouragement, my inspiration, my rainbows xx

It’s been a while since I’ve mentioned the hound in any detail. I am chipping away at Mark with my pleas for a companion for Obi. I think he is almost resigned to the fact that it’s probably going to happen. He’s even chosen a name for her, from my shortlist of course – think cleverly nerdy 😉😂 So that means I can have a puppy, doesn’t it?! Imagine the fun we’ll have?! Who needs a puppy with this delinquent keeping the local population entertained and me suitably embarrassed. Ironically, it always seems to be when I’m wearing my ‘Don’t be a dick’ top… Obi has developed a need to bring something home with him when we go for a walk. So far we’ve had, sticks, stones, mushrooms, a glove, a golf club cover, balls, an old lady’s hat, pond weed, a bottle, a face mask, a tissue, a feather, and various unidentifiable objects. His mission in life is to get up close and personal with a heron. It doesn’t seem to have occurred to him that heron can fly?! If we see any of the heron when we’re out, I keep him on the lead so he doesn’t stress them unnecessarily. However, on this particular occasion, I hadn’t spotted a heron as Obi was having a lovely time off lead. We both saw it at the same time, and he looked at me with a sparkle in his eye, and I knew it was too late. He bounded gleefully after the heron who was by now soaring gracefully above both our heads… within seconds both Obi and the heron had disappeared into the trees. It then became like one of those old comedy sketches with me catching glimpses of Obi running in various directions but never towards me! I was left, pathetically calling his name knowing he wasn’t listening. This is why I don’t let him off the lead! Hindsight is brilliant. Sweaty and breathless from dragging my useless leg faster than normal (still couldn’t muster a run, even under these circumstances!) and shouting loud enough that people on the other side of the river could hear, I tried to regain control of my now absent hound… Eventually it must’ve dawned on him that he would never catch the by now distant heron, and he came bounding back, panting and happy and oblivious to the stress he had caused me. I grabbed his harness and retethered him while he saw that as the perfect moment to grab the biggest, blackest lump of pond scum he could find. So there I was, sweaty and limping and dragging a crazed, pond scum carrying hound across the middle of the golf course to cut short his adventure, when he decided to choose that moment to begin to circle me wildly at the extreme of his extending lead. So picture that scene… there was I, spinning in the middle of what had been an empty golf course, but was now seemingly full of golfers with their hands on their hips watching…. As he ran round me I spun to avoid being bound by his lead. As the repetitive spinning began to affect my already poor balance, I may have uttered some expletives… maybe? As we stopped spinning he began to shake his head violently, spraying everyone in a 50m radius with the disgusting pond scum he had clenched in his jaw. Embarrassed, but mainly by the irony of the logo on my top, I dragged Obi across to an area of rough grass, muttering exasperated apologies to the waiting golfers…. For him to then pick up a tree he had found lying in the long grass kneecap me with it, and then proceeding to carry it home as though this was perfectly normal behaviour. And I want another dog??!!!

I couldn’t believe, when I looked back, how long it has been since I last updated my blog! The end of March! And that post, in fact that poem, started something which has totally changed my life. In three months I wrote 30 poems in 30 days to raise money for Parkinson’s UK, published my first book and now I’m writing my second. I’m an author! Well my first book was just an anthology of poetry so that probably doesn’t count, but the next one will be a proper book. Isn’t it funny how things turn out? Never written a poem before in my life and now I’m publishing books! I honestly believe that things happen for a reason and if they are good things you should just go with it and see where they take you. That’s my life plan. And on that note, I want to thank everyone who reads my blog, reads my poems and ultimately bought my book. The support I have received has been totally overwhelming. Your generosity of spirit will stay with me forever. I didn’t publish a book to make money and plan to pay forward the proceeds of the first one to various good causes. I know other people don’t agree with me doing that but it’s something I have to do. Anyway, I plan to retire on the proceeds of the next book…

This month we have been getting quotes for my dream kitchen. When I say ‘dream’ kitchen, it’s not actually that at all, it’s more like my ‘future proofed kitchen because I have a progressive, degenerative condition’ but that doesn’t sound anywhere near as exciting. Actually though, it is! We’ve never had the money before to plan a kitchen from scratch, so to have everything brand new and planned for me IS exciting! See what I did there (rainbow!)… So we approached a well-known kitchen design company (W**N) fell in love with the display kitchens in their bright, shiny showroom, arranged for them to come out and measure our kitchen and then attended the all-singing, all-dancing VR design appointment… and that’s kind of where the fairytale ends. We won’t be buying our new kitchen from them. They had everything I wanted. Met all my needs and Mark’s sink fetish… The kitchen they designed was beautiful! But it was way over budget. And all we would be getting from them would be cupboards, worktops and integrated appliances. We would still need to fund everything else. We could afford their extortionate prices but we have better uses for our savings! So the search continues… we’re not in any rush. We’ll continue getting quotes and then make a decision. However, on this occasion, big and shiny isn’t always best!

Surprisingly, I’m also at an all-time low as far as my health is concerned. I haven’t felt this bad since before I was diagnosed or before I started on medication. But, and it’s a MASSIVE but, I cope with it far better now than I ever did. I just wish I didn’t have to. I’m seeing my lovely Parkinson’s nurse this month and I’m hopeful she will address some of the new symptoms that are slowing me down and causing me pain and making life difficult. If she can, brilliant. If she can’t then I have to give some serious thought to the future and what it holds for me. And as depressing as that sounds, it depends how you look at it! I refuse to be beaten by this and I am surrounded by amazing people who support me every step of the way, but sometimes you have to accept that what will be will be. And maybe that’ll be a puppy, eh Mark?!

This won’t be my usual blog post. After a week of reflection and me time and noticing a subtle worsening of symptoms, I have decided to share a poem I’ve written. I’m no poet and it’s very personal so I don’t expect it to be everyone’s cup of tea. And absolutely no grammatical rules have been followed in the execution of this verse. I give you my ode to Parkinson’s…

A little piece of me is missing.

And it’s time now to reflect.

On the impact it has had.

On it’s path of wild neglect.

It happened very slowly.

In fact, at first I didn’t know.

So sneaky and so subtle.

I didn’t see it go.

A tiny little molecule.

With a job of great import.

Little known until it’s absence.

Leads to havoc of all sorts.

A chemical called dopamine.

Can be found within your brain.

In the Substantia Nigra Pars Compacta.

It makes the biggest gains.

But when dopamine is missing.

And those messages are lost.

From nerve cells to body parts.

You have to count the cost.

So why does it matter…

This tiny molecule?

At times like this I wish.

I’d paid attention at school.

Dopamine is responsible.

For more things than you know.

Over time you start to notice.

As you begin to slow.

Thanks to James Parkinson in 1817.

This degenerative affliction has been recognised and seen.

No longer Shaking Palsy.

It’s now Parkinson’s Disease.

Progressive and degenerative.

It silently changes your life.

The plans you made, the dreams you had.

How can you be a good wife?

The symptoms you get, the path it takes.

Are different for everyone.

But the outcome’s the same because Parkinson’s.

Is a battle that can’t be won.

Tremor, stiffness and rigidity.

Become the norm for you.

Unable to write, or carry a drink.

Or even put on a shoe.

You begin to look at life differently.

As Parkinson’s sets the pace.

But acceptance reaps it’s own reward.

And gives you back some grace.

It’s easy to succumb to grief.

And fall into a proverbial black hole.

Diagnosis brings with it no relief.

And a cure is not the goal.

It’s possible to overcome your fears.

And create a life of joy.

Which is a little bit ironic.

As that’s dopamine’s main employ.

Counteract the lows.

Which inevitably persist.

With highs you have to engineer.

Because they don’t exist.

It’s possible to have a life.

Of love and laughter and fun.

It just takes a bit more effort.

And some help to get stuff done.

I may be slow and clumsy.

And my hands may shake a lot.

It doesn’t mean I’m useless.

Or that I’ve lost the plot.

Although I’m often tired.

And simple tasks leave me depleted.

I want to take my place in life.

And refuse to be defeated.

The pills you take are plentiful.

All colours, shapes and sizes.

Trying to control your symptoms.

Their effects are short-lived, no prizes.

You look for anything to help.

Exercise, surgery or diet.

The difference it makes, you’ll never know.

Unless you actually try it.

So my advice would be.

To always focus on the good.

Always look for rainbows.

And get yourself a dog!

A little piece of me is missing.

But you’d never know.

That in fact it’s dopamine.

Because my smile will never go!