Category: THE BLOG

Happy New Year 

There are a few things I’d like to do this year.

I want to get on with my life and not live in fear.

I’d like a man in a white coat to drill into my brain.

after he has shaved my head so that I can be ‘me’ again.

I want to write poems filling page after page.

Wear a sparkly dress then perform them on the stage.

I want to sing karaoke with my man in the chapeau.

Dance like everyone’s watching boogie, sway and pogo.

I’d like to spend time with friends having a laugh and a good time.

Holiday with my girls. I just want everything to be fine.

This poem isn’t the greatest. one I’ve ever writ.

I’m impatient to live my life.I just want to get on with it.

1 January 2021

‘They’ say we should be careful what we wish for. Well sod you ‘they’ I would be very happy if I got what I wished for this year.

This pandemic thing is getting in the way of everything. On borrowed time anyway (as we all are, it’s just that those with a disease/wake up call, have had it shoved in their face). To say I feel sorry for those who haven’t had a wake up call would be a bit ridick. I would give (almost) anything not to have Parkinson’s Disease. But it has certainly made me all to aware that we have to live our lives now …

Well Covid lockdown restrictions has put ‘our lives on hold’

Or has it (dot dot dot)

Now the rest of this blog post could be a bit random as I am writing as I am thinking what to write, so no plan of action …. dangerous.

Okay ‘Covid lockdown restrictions has put our life on hold’ … discuss. This should be rewritten as ‘Covid lockdown restrictions has put ‘life as we knew it’ on hold’.

If it had actually literally put ‘our life on hold’, we would be in suspended animation for the duration of lockdown, not ageing or wrinkling at all, we would emerge from lockdown the same age, height, and in the same clothes as we went in.

So I feel the need to re write that phrase … ‘Covid lockdown restrictions has made us rethink how we live our lives’.

We have had to think outside the box … how to maintain relationships when not seeing friends and relatives, how to carry on learning when schools are shut, etc etc.

Now don’t get me wrong I am not happy with this, not ‘ appy at all Mr ‘iggins’.

Since lockdown begun I have …

Got engaged …oooo

Am in the process of moving house …. ooo

Trying to keep Crohns under control

Trying to keep hospital appointments for prospective possible brain op later this year

Now lets address these one at a time.

Crohns – is kicking off something chronic (bit of a joke as it, like PD, is a chronic disease – whoop if i get three I get a cuddly penguin). Alcohol seems to cause it a lot of problems as does stealing Mr J’s twirls (that is what it sounds like). So no gin and no sneaky chocolate. To be serious for a mo I am (mainly honestly) very good and will be punished by The Crohn if I have a sneaky twirl so it is just not worth it. ‘They’ are looking at escalating my medication which is to be honest mighty crap … Parkinson’s, to me, takes over so much of my day to day life that for me it is my priority to keep those symptoms under control just to live my life. However, I have now realised that I need to pay the same attention to Crohns. This is yet another Chronic Condition which tbh at the moment is starting to affect me more and more. I need to give it some priority and get it under control.

Parkinson’s has reached a pivotal point. Side affects from meds are getting worse and the Three M’s (movement, mood, motivation) are swinging between being maddingly happy, madly moving and annoyingly motivational to being moody, morose and motionless. Dystonia stops me in my tracks often using a wheelchair to scoot round the flat.

So my Neurologist is putting me on the list for Deep brain stimulation … DBS … basically this year i hope to have my head shaved and electrodes implanted in my brain.

Sooo ho ho … not a good time with that Covid thingy to be going to hospitals, but i need to and i have to take appointments between lockdowns.

I need a Blood test to assess my crohns situation

I need a series of assessments for DBS

Flip so watch this space i have already had one dbs assessment and am awaiting another three.

So important are these i need to write a separate blog …so i will tell you another time

Keep safe, keep well, keep on rockin

Hindsight is a wonderful thing. The rights to a fly on the wall documentary of Christmas morning would have made a slightly wonky documentary for channel twaddle.

When does a crubbish day become a comedic anecdote? …

Before I begin a couple of points before someone puts pen to paper, makes a few legible marks and posts off to the powers that be.

Firstly even in tier zillion I am allowed to ‘do’ Christmas with Parkinson’s. Believe me if I could shake Parkinson’s off I would . No apologies for the use of the word ‘shake’ as a punny pun. Puns are sometimes all I have to bring the positivity to my day. I can assure you that, even when I appear ‘normal’, Parkinson’s is still with me, it never ‘pops to the pub’ or, more likely in these lockdown times, ‘pops to the ‘Offie’ to buy a four pack of Artois. However in reality actually neither will happen as I often lack the confidence to go out, so if it doen’t arrive in the supermarket delivery order ‘we ain’t got it Mr ‘iggins’

When I am ‘normal’ I feel clear headed, dexterous, athletic, super, smashing and great. I could prepare a meal whilst dovetailing some carpentry and whipping up some Angel Delight, whilst grooming the gerbil. So just cooking Christmas Day lunch whilst sipping a schooner of sweet sherry would be a doddle.

On the other hand I more often am mumbly, fumbly and bumbly.

So erring on the side of caution, I purchased Christmas lunch, please put your fingers in your ears (and a pineapple up your nose) frozen and (yikes), pre prepared. I thought if I did feel Tipperty top on Christmas morning I could always learn a new language in my spare time whilst the prepared meal cooked.

To cut the waffle I will bullet point what happened

Firstly … overslept … I never over sleep. Now when I say oversleep, I obviously still woke to take medication and to check Today’s Special Value on QVC on the tv in the night. But I woke at 8.15am … meaning I took my first morning meds an hour and a quarter late.

Let me explain (please) -‘nighttime’ in PD meds world to me is between 1030pm and 7am, I take different meds at night and take my first ‘proper’ meds at 7am. So this oversleeping meant my timings were all ‘out’ for the day. I had to alter my alarm system which stressed me all day.

my meds were on a bad morning, never really kicking in. I even omitted protein from my morning eating in the hope that my meds would work okay. (protein often interferes with their absorption), so a banana had to pretend to be a special smoked salmon platter for breakfast. Believe me when I say that there is a reason why a Banana Impressionist never won Opportunity Knocks,

Preprepared Christmas lunch was a necessity. I left myself some sprouts to peel to fool myself into thinking I had done something. But they took me the whole morning to prepare, doing a couple and then resting. I wasn’t carving each into a nativity scene figure. Merely chopping the bottom off of each and removing the outer leaves (i realise other sprout methods of preparation are available).

Then sudden dyskinesia meant I burnt my leg on the oven door, and had to spend the rest of the day with cling film and frozen peas tied round my leg. NB please check with a medical professional if you burn yourself, I am not a Burns Doctor in the same way as I am not a Neurologist.

I am boring myself now so I will sign off.

…. it is only twenty four hours later and it is already turning into an anecdote, and the leg burn is merely a scar.

So actually, all things considered we had a good day and ate, drunk and was twaddley. Life and my ability are unpredictable, but at least I have my health (… doh)

PS I wonder if I could insert into Parkinson’s job profile … compulsory two weeks holiday to be taken at my discretion …. unlikely, but actually has anyone with PD ever asked. Then it could ‘do one’ on Christmas Day.

Les

Janet Bric-a-Brac’s Paraphernalia coming soon …

‘Cynthia was drooling over the rugged be-leatheretted motor bike delivery guy.’

There are two dictionary definitions of drooling and I wager that most of you (I am required to say ‘most’ as there will always be ‘one’) will be imagining Cynthia lusting after him and not dribbling on him. 

 ‘… with great pleasure, perhaps in an exaggerated or ridiculous way’

https://www.collinsdictionary.com/dictionary/english/drool

OR

‘ … with saliva drops slowly from their mouth.’

https://www.collinsdictionary.com/dictionary/english/drools,

You might ask ‘what the flip is ‘she’ on about now.   Where ‘she’ is me, a person with Young Onset Parkinson’s disease.

So I’ll write it quickly …

drooling is one of my new Parkinson’s symptoms.

So what’s ‘Cynthia’ got to do with it?

Well, in an attempt to keep your interest  I am continually trying to jazz up Disease. But as things progress it is getting more difficult. In the early days twas simply, the (yawn) ole classic ‘Parkinson’s diagnosis? Career change to cocktail waiter or shaker maker tester’.

If I’d put  sialorrhea (medical word for drooling) as the main heading, then drooling at the top underlined in bold would you have read any further?  Most of you wouldn’t (I know ‘one’ of you would).

But jazzing up drooling … it’s not great.

Okay enough ‘jazzing’ lets ‘cut to the chase’ *

• This phrase apparently originates from the days of silent films when the audience would shout out ‘cut to the chase’, ie the end exciting sequence of the film, often the chase, and cut out the long winding story. get straight to the point.’

Drooling, a word I usually associate with slobbery dogs is now being assigned to me (rude).

I understand when selecting a dog breed, you can now type in your specific requirements; so, for example, non shedding, non drooling, sociable.

Different when picking a friend  …

Now I only shed a little, I am sociable and but now apparently I occasionally drool.

Not befitting a fifty two year old ‘young lady’.

Confused?  Let’s go back in time and I’ll tell you how it started…

The other week, I suddenly found saliva dripping from my mouth. and leaking out of the sides of my mouth (sorry).

Oh flip. 

Now I had ‘read’ through the grapevine that drooling could be a PD symptom.

My reaction? In my mind I imagined making a papier-mâché head of myself (bear with me).    Then I imagined, due to travel restrictions due to lockdown. that I googled, ordered and obtained delivery of a sand pit and plunged my papier-mâché head into it (not to be recommended, hence the much safer papier-mâché.  NB I made it doubly safe by making it imaginary).  

It would have been quicker, safer and cheaper, rather than ‘burying my (imaginary papier-mâché) head in the (imaginary) sand’,to have asked my medical professional.  

This was worrying me and delaying talking about this new worry achieved nothing.   In my experience the worry wouldn’t just go away.

Then I read the other day via social media that the EPDA (European Parkinson’s Disease Association) were doing a survey on drooling and Parkinson’s — I realised that the grapevine must be true.

So, if I am going to write about this then, with my grown up fedora on, I thought I had better have a little peak at the EPDA site, as I knew they would give me the information in a non-scary factual way.

I was glad I did, lots of information and advice.

The drooling in PD (now bearing in mind at time of writing I have only read the first bit) is sometimes down to too much saliva (which is required for food digestion), or/and not enough swallowing to remove the saliva from the mouth.  Oh and leaky lips.

Not enough swallowing/leaky lips?  We know that PD is the breakdown of communication between brain and muscles. Swallowing and mouth operation is a combination of muscles which automatically get rid of the saliva from the mouth.

It is an automatic action like walking which my brain has decided to give up on intermittently.

Flip… so one piece of advice is to practise.  To swallow before I speak to get into the habit of swallowing.

say no more.

In fact, rather than me misleading you,  I will ‘say no more’ and leave it to the EPDA to eloquently and accurately describe and advise.  Also if you have worries then speak to your medical professionals

The ‘burying my head in the sand thing’ doesn’t stop a symptom, merely delays learning to help yourself and live with it.

So as not to go into a spiral of worry, I will think rationally.  I am taking action when my body is whispering* (we will ignore the brief ‘burying the head in-the sand’ thing, albeit imaginary) so I can start to do something about it.

• I should explain that in my experience I find that before introducing a new symptom, PD whispers a symptom, ie it happens intermittently, I am aware of it but it happens only once in a while.  Then in time the occurrence of the symptoms appears to build up gradually to become a full bonafide symptom. 

So one two three …. swallow …. or is it a wren (sorry)

Unfortunately I cannot give you any top tips about how to manage drooling.  Neither do I have any anecdotes written with a sprinkling of humour, disguising an undertone of fed up ness.

You, much like a wildlife presenter when they first spot a ‘less spotted star jumping bird’ doing star jumps, are ‘lucky’ to be joining me on the first step of my ‘drooling journey’

Plan of action

Don’t panic … do something. Talk to someone.

Speak to your medical professional

Read …

Epda https://www.epda.eu.com/about-parkinsons/symptoms/motor-symptoms/eating-swallowing-and-saliva-control/

And complete the EPDA survey on drooling if you would like to help.  Information on this link. … https://www.surveymonkey.com/r/EPDA_sial_EN

Les

Ps back to Cynthia.   Of course Cynthia could be carrying out both drooling dictionary definitions simultaneously…

I still have a ‘Soup Sont’ of Class left, a tiny bit, but not that much. I believe I have blasphemed on a minor scale within the body of the blog … for which I have apologised, but none in the heading. So asterisks in the title rather than hard swears.

This is shit (apologies). Thank you oh Parkinson’s – you are really flipping (other swears beginning with F are available) rubbish. You’re ‘aving a larf’, ‘you’re pulling my leg’, ‘you cannot be serious’. Dyskinesia at night – flip flip fliperty flip (I repeat other swears are available).

This is getting seriouser.

Thursday … frozen all day, in between times had bradykenesia … nothing to do with Jen’s ex, this is slowness of movement. Sounds okay but it really isn’t.

Friday … dyskinesic all day, brief respite in the evening, and then kicked off at around 4am Saturday morning — superflippingsonic.

I’ve had enough of this. Humour has deserted me. Excuse me whilst I go to the back of the room and give myself a pep talk.

‘Snap out of it … don’t spiral think positive count your blessings and so on and so forth. Oh go on then write a flipping poem.’

I shall count my blessings, 
On my fingers and toes,
Will I get to twenty?
I'll give it a go.

I have my 'health',
Well that's an immediate fail,
Not a good start,
I should go straight to jail.

We'll call that a false start,
And speak no more of it,
I shall try and think of twenty reasons,
why my life is not shit.

Kids and friends
Tv, reclining chair
oh yes and I still have
All my own hair

I have a roof over my head
When I sleep I still dream
And I have hidden in the cupboard,
a Fry's Chocolate Cream.

I have memories of good times,
Before I had PD,
And I will continue to have good times,
Afterall I am still me.

I like to be silly and weird, 
Tell rubbish jokes,
Drink gin, eat chocolate,
Maybe one day I'll try and smoke.

Fifteen done,
Okay another five,
When I karaoke and dance,
It feels good to be alive.

Parkinson's has given me,
New friends who understand,
They never tilt their head,
But they do hold my hand.

So, I think that's twenty,
Well, there's certainly enough,
I'll go find that Fry's Chocolate Cream,
I'm no longer in a huff.

Over and out
No longer dyskinesic and only 44 minutes until curtain helpline opens.
Hwooph ... 
LES

What makes me write this blog? A rhetorical question – no answers required on the back of a beer mat.

Why am I sitting here at silly o’clock thinking; oh I know what I’ll do I’ll tell the ‘world’. Well half a dozen people possibly, how crubbish I feel?

When I started this blog …. please don’t glaze over – crickey I’m turning into someone who harks back the whole time ‘I remember the time …’ So I will attempt to stop doing that. In fact, kidz, whenever you think I might use that phrase please shout ‘Oh no you don’t missy’ …sorry getting confused with panto.

ho hum it will be a sad day when I have lost the ability to waffle.

Okay so to ‘now’, right this second. Sitting typing in pain with – drum roll – the new chronic condition which is Crohns. Flipperty flop this is truely rubbish.

So eating with Parkinson’s is complicated. The problem is the tablets take the long route to the brain – the scenic one, which avoids motorways – via the stomach.

I swallow the tablets with water. They go into the stomach and have to find their way to the brain without losing their power. Their route is hampered by challenges each trying to weaken them; think ‘amusing gameshow’, with the tablets being hit by pieces of fillet steak whilst trying to climb up a tree from the stomach to the brain. (Protein, if eaten near taking my tablets, will interfere with the absorption of my PD meds, meaning when/if they reach the brain they won’t be as affective).

Then throw in another chronic condition – Crohns – involving food. So this is a gameshow with knobs on. The PD tablets arriving in a stomach which is also inflamed with Crohns inflammation due to a reaction to some foods.

Then add the excitement of ‘The Unknown’, which is always a good one. PD is full of unknowns, but so is Crohns.

I do know that different foods/drinks kick off Crohns. But I don’t know which ones. And everyone is different.

Now I must bear in mind that this blog is not Crohniality, so I shan’t go on about it. But to be honest I don’t know much about it at the moment. I have started to work out a few foods which I seem to be able to eat and many I can’t, through trial and error, I am now gluten and dairy free which has made a huge impact on controlling the Crohns symptoms. BUT there is a lot more to work out.

Crohns and Parkinson’s can kick off at any time and anywhere without warning … and sometimes combine their efforts.

At silly o’clock in the morning. Life is really not great when my Crohns kicks off and my constitution and digestive system becomes painful and sporadic. And at the same time the Parkinson’s medication doesn’t absorb properly and moving and walking is really difficult,

But on the flip side Life can be really great; when I am in the pub taking part in the quiz and the world is aligned and the Crohns and PD are asleep under the table.

Of course these two scenarios are as likely to be swapped, ie rubbish in the quiz with all my symptoms kicking off, and then feeling tip top (and knowing the answer to question 12) at silly o’clock in the morning.

All this twaddle makes me appreciate the good moments. I mean really appreciate them. Hence the slight madness in my eyes on the dance floor when I can suddenly move and I strut my funky stuff.

So I go back to my question Why am I writing this blog? Well certainly as a journal for me. But to help others? Not sure anymore.

When I started this blog … ‘Oh no You don’t missy’ … sorry.

This blog is still about awareness, about how you can still muddle along. How on a day when people say ‘ you look great’ you can still feel rubbish inside, or when people say ‘are you okay?’, and actually you feel tip top inside.

So; Why am I sitting here at silly o’clock thinking; oh I know what I’ll do I’ll tell the ‘world’. Well half a dozen people possibly, how crubbish I feel? I know that a real mixture of people read this blog, and many are family and friends. What I don’t want to do is worry people, but as ‘they’ say in a well known quiz … ‘I have begun so I must continue’ – it would be wrong of me just to write about the five good years with PD, with my slightly mad sense of humour and interesting top tips. It is a roller coaster …

Hokey Cokey special offer for you long suffering Parkinalitors or Parkinalityationisters or Parkinalisters or Parking Wardens … answers on a postcard or back of a sae (wot I hear all the youffs tweet)

A ‘special offer’. You may have heard a murmur (good word) that I have a new book out … well as an introductory offer I am offering my two books and free postage to your doormat or post box or lady in waiting’s house (answers on the back of a horse) … now this is where i go wrong with my writing I end up going orf on a tangent and people drift and mutter and stop reading listening etcetera etcetera.

Where am I — oh yes. Inbox Parkinality and in exchange for the transferral of ten pounds i will send you both books …. postage free of charge.

Introductory offer whilst stocks last.

So in precise and concise words:

Inbox me
I’ll send bank details
You transfer £10
Send me your address
And I’ll post the books to you for free postage
And then 30% of any royalities earned will go straight to the Cure Parkinson’s Trust to find a cure and shut me up (sorry, I mean find a cure).

On your marks get set …. whilst storks last.

Both books poetry which is funny, sad, weird, odd and entertaining. Not all about PD ….

Les

Okay this is a first… this column will have no underlying humour, it will not be intentionally sad and is definitely not seeking sympathy. It is not even for awareness. Being typed on the computer it can’t even be used for wrapping your fish and chips or for folding up and putting under the leg of a wobbley table. So what the flip is the point?

The point is firstly selfishly for me, to record how I am feeling at this point, ie almost eight years after diagnosis. So here goes …

So firstly I would like to tell ‘me’ how things have changed.

Just before diagnosed the symptoms were annoying and definitely affecting my life, but I described them as annoyingly ignorable … in which case they didn’t stop me doing anything they were just ‘there’ being irritating. I decided to go to the doctors when they became annoyingly UNignorable. In my case it was my dexterity affecting my typing. So I was a touch typist typing the final essays for my degree, and it was becoming increasingly frustrating. So although at the time they were UNignorable they weren’t stopping me typing. When my hands were affected whilst typing I could still type it just took extra effort.

I half heard a rumour after diagnosis that I would get ‘five good years’ after diagnosis. Whoop I thought …. five years is a huge amount of time.

It is until I reached the end of it … then the comment has been ‘crickey five years, that flew by’.

But do I have any regrets over that five years … regrets that I didn’t make the most of my (albeit declining) abilities over Those five years?

I can honestly say ‘no I don’t’. Obviously I really truly wish I didn’t have this thing. However it did immediately make me sit up and take action. It changed my perspective on life and armed with knowledge, I went all out to, as i was told, manage my condition, and get on with my life.

Now don’t get me wrong PD gradually deteriorated over those first five years. Once I thought I’d got the hang of living with Parkinson’s it decided to whisper a new symptom, or whisper about ramping up an existing symptom.

This whispering continues today. I find (not sure if this is correct but this is how it seems to me) that PD gives me a warning whisper about a new symptom before it hits me with it continuously.

So an example today is the ridgidiy in the back of my knees. It started as a ‘oooh that’s horrid I haven’t had that feeling before … crickey that is horrible’. To ‘oh flip that is becoming a regular occurrence’. To ‘I hate this’.

I continue to go through the list of ways of coming to terms with a long term condition those are (off the top of my head so some might be missing and in the wrong order).

Acceptance (obviously should be last and I haven’t reached that place yet)

Denial (haven’t really ever been in this, have always thought, yep I’ve got it). I have never had enough time without symptoms since diagnosis to be in denial about having it.

Bargaining (this for me is a subconscious one. When first faced with this one I said no. However when I think about, every time I donate to a charity, or do a sponsored event, aren’t I not only donating towards a cure, but also saying please I’ve done something good, please get rid of this ‘thing’.

Anger (not at the beginning, but definitely since, and in fact in recent months I now rant and talk to myself and ‘it’ shouting and saying ‘please don’t do this to me’ )

Depression … I don’t believe I get depressed but to be honest i am not sure. I certainly swing between being happy and sad. And i don’t mean sad in a upside down smile way. I mean sad in a spiralling journey of feeling awful that I need to dig myself out of. Thankfully I have been able to dig myself out, although sometimes i need help and assistance from a friend with a trowel.

In 2017, coincidentally, but not intentionally, five years after diagnosis I started writing the blog. Firstly retrospectively telling my little (all true) ‘stories’ about tricks and tips to try and keep the thing under control.

Since then my writing has snowballed and has given me a purpose.

Up until 2017 I was definitely vocal about the condition. Learning very quickly that telling people helped me and them…. so failing at an interview for a shop assistant job just after diagnosis because I was ‘nervous’. When my shaking was due to tremor PD and not nervousness.

Since then i probably overtell, those first five years I told and tried to control PD. Sponsored events, exercise classes, running, diet, volunteering for PD charities, you name it I looked things up, did research, attended appointments, talked to people and did things.

2017 my blog and the end of my ‘good five years’ and when I look back I realise things changed around that time as well. Whoever made that phrase up was correct (annoyingly), certainly for me – and remember everyone is different.

Since then it is becoming more and more debilitating. Walking Stick, Blue Badge, Wheelchair, Walker, applying for PIP disability allowance – all of these things have appeared in my life and has made me realise I am now a person with a disability. When I fill in a form I have to tick that box, When I go to a hotel I need an accessible room, when I go somewhere i need a lift as I no longer drive (due to PD symptoms). So many things.

But I am complicated. For such a lot of the time my PD is present, constipation, freezing, shuffling, crying, shouting, whispering, moving, dancing over moving etc etc. And then occasionally i get tip tops moments/minutes/half hours or so. When there is ‘to the observer’ and actually to me I have NOTHING WRONG WITH ME … like childbirth, awful whilst going through it, but once the event has passed then I forget what it was like briefly and feel invincible and swish and swash about.

Today my PD symptoms switch on and off like a switch. Now i have written about and have videos of me in various types of Symptom State. And have shown how bouncing a ball, music etc can get me walking again sometimes.

I am not sure if I have ever described it to you.

So switching ‘off’ happens without warning. Well, actually with dystonia (the involuntary twisting and clenching in my feet, and now back and neck) I often feel a ‘buzzing sensation in my foot’ which is my warning that my foot is ‘going’. I know I have limited time to get to a safe place as it generally happens when walking. I know that once it starts and gets into its spiral of decline I will not be able to walk on it. I can often still bend my legs, but imagine putting weight on a twisted foot trying to weight bare…. it is precarious and painful.

The other symptoms tend to just appear so all of a sudden typing stops dexterity goes, my legs stop bending, they may slow gradually, but really I don’t realise they are ‘going’ until they have gone, and then I have no idea how long they will be unable to move.

When I switch back on again, either though the next medication or tricking my brain, or just for no reason at all just because it feels like it. That is weird. I gradually realise consciously that i am moving about again. So I could be frozen on the spot, not paralysed, but my legs, for example, could be locked straight and won’t move forwards. When the next thing I find I am buzzing about loading the washing machine and i think ‘oooh moving agian’

I realise it is tempting for people without PD when they have seen this scenario several times to say ‘you’ll be alright again soon’. I know they have good intentions and are trying to make me feel positive but it doesn’t allow for the feelings I get when PD starts to take over. I often think, i just need to get to the kitchen sink, you can switch off then when I’ve made my cup of tea/put the washing on/picked up that sock … none of it important or mind blowing stuff but i can not describe how immensely frustrating it is.

How useless it makes me feel when I need to stop half way through washing up and say ‘I just can’t do it any more’ Friends bustle to take over saying ‘it’s fine I did offer’ or ‘you go and put your feet up’. People probably say ‘crickey make the most of it’. But you do start to feel useless after a while.

So today i have not reached accceptance. The wiseish man has in many ways. When his parkinsons kicks off he will sit and wait, whereas I won’t.

My mood swings at the moment are also horrendous. I would normally describe these as invisible symptoms and maybe if i could hide them they would be. But as you know I cannot hide when I am nervous, PD symptoms kick off., Also.I get incredibly frustrated and shout at PD. A shouting shuffling woman, is not invisible.

So i realise things will get worse, and today is good. I am still going out. I am restrained, hindered, restricted, controlled by Parkinson’s and at times defined by it. But I am still me, I know it will get worse, but I try really hard not to let it be me.

I probably have a tendency to overcompensate. PD can be so visual sometimes that When frozen, mumbling and with a face which will not move I look miserable and awful. When over moving and speaking loudly and I look like a pissed nutter. I do try and overcompensate by maybe overdressing by over speaking by over enthusing as I try to make my personality come through despite the impressions which I sometimes give out.

I realise things will get worse (I realise I am repeating myself), but I hope as long as I continue to ask for help and talk and friends and family and medical professionals are still there for me I can continue.

I am not unique, there are many people with long term conditions in many guises which affect in many different ways. Invisible/visible restricting controlling and restraining. Some may talk about it some may not.

If someone has the ‘ump they might not have the ‘ump they may have an internal struggle you know nothing about. Although you can have the ‘ump and be struggling internally.

My writing keeps me going and talking and performing. Poems and my books may annoying to some entertaining to others, but to be honest I am selfishly doing them for me.

My newspaper column is often difficult to write, but after fifty columns people still seem to read it and I still have people saying to me that it helps them feel they are not alone.

People and writing, friends, family keep me going. I need focus I need to keep going.

Apathy, depression, exhaustion, tiredness, lethargy are all real everyday brick walls,. I can spend days literally not knowing what to do. Others i am a whirling maniac doing everything I can. Often crying often happy often anything at all.

I never know what each day will bring, I never know how PD will interfere.

But i am still doing, being and seeing, hearing, watching, waiting, entertaining , chatting and involving and informing.

I love life

But … PD is completely crap and I really wish it would piss off (excuse me for burping).

To those of you who are new to the blog, and to those who have better things to remember. I think of life as a road trip, a journey is just plain boring, (unless it isn’t, obvs), beginning with a capital letter and ending with a full spot. However we do not rush uncontrollably towards the full stop (unless we do), our life is punctuated by commas, semi colons and colons. To generation z.2 I am talking about; smudged full stops, winkie smilie faces and staring eyes.

In an earlier blog post, a couple of years ago, I referred to these pauses as ‘defining moments’; such as receiving exam results, deciding on tea or gin, taking the left or right turn. These are points in our lives where the decision or action changes things. This could be for better or worse, richer or poorer (yes, that’s one of them), The way we think, act, do, and live our life. This could be good, bad, ugly, or smellie(?)

Applying for the blue disabled badge and buying my first walking stick were my defining moments then. Both involved admitting the effect PD was having on my life and coming to terms with the word ‘disabled’.

Today my mindset has changed, The blue badge and walking stick actually enable rather than disable me. Unless I accidently trip myself up with my diamante (really) walking stick, after parking in a disabled bay outside the wrong theatre.

Today I take my walking stick everywhere, it is a fashion accessory, as well as a walking aid. In the same way as my handbag is, but isn’t. I actually take pride in my walking stick.

Particularly impressive are my folding walking sticks which I ‘whip out’ in a silent Mary Poppins type way. Producing the walking stick from a small handbag, unannounced in a packed pub, the stick unfurls automatically, de-don-king (technical term) into shape. My diamanté one is pure class (well pure plastic to be precise). My, yet to be aired, light up one … ooooh … that could well be unbelievably extraordinary. Plus the other walking sticks; the ‘spotty dog’, ‘looks like bark’, ‘pink shiny’ and so on and so forth.

At time of writing it is June 2020 in the Covid 19 aka Corona Virus pandemic and I have been in lock down since 29 February. Only recently on the advice of ‘The men off the tellie’ and my neurologist I have started to venture out. Four extremely brief walks, not even to the end of the road, are all that I have managed so far.

An aside … During lockdown fitness is becoming a real issue. Legs are an obvious problem, lack of walking due to shielding obviously has an affect on muscle and stamina. However, arms are also a problem. Hours spent making jewellery, knitting, on the computer, and my arms are sometimes stuck (almost literally) in a ‘Tyrannasaurius Rex short armed dinosaur’ position (this will have split the readership … ). Shoulders ache and arms have lost strength.

I purchased melamine plates to save my china as PD makes me accident prone and I have ceramic floor tiles everywhere. However, I have now even found that when I do lift a china plate my muscles ache … flipperty flop.

Everybody loses stamina and strength with lack of movement and excercise and it takes hard work and dedication to build that up again, but it can be done.

Disclaimer – this is one of those paragraphs where a little pseudo knowledge is a dangerous thing … this is what I think/understand, but it might be wrong …. please check with a medical professional. Also, please check with a medical professional before altering or starting any exercise or new regimes.

However, when people with Parkinson’s (if I understand it correctly) lose strength, stamina and muscle, we not only have an uphill struggle of exercising to try and get back to fitness. We often also might have the problem of our brain forgetting how to do things – ‘use it or lose it’. So we will not only need to rebuild fitness but also rewire/retrain our brain. (If this is incorrect I apologise, if you are revising for your ‘upper class, double back flip post lateral degree in clever stuff’ do not (that’s ‘do not’) use this as a text book, ‘cos it ain’t’).

But it does sometimes feel like I need to retrain my legs. Needing to force my knees up in what feels like (to me) a weird odd walking movement, but to the on looker is apparently ‘just me walking. Apparently I usually walk with ‘silly shuffley steps’. So the big steps feel forced to me but are actually correct. I need to train myself to walk Big, as PD has made me walk Small…. clear as…

My confidence and fitness are rock bottom.

Never one to let the grass grow under my feet (unless it is), I am researching shopping trollies, beepie buttons and wheelchairs.

Three defining moments.

1. Wheelchair … no I am not (at time of writing, 2143 on a wet Wednesday in July) wheelchair bound. However it would be useful to have my own wheelchair on things like hospital visits, if my walking is completely awful. It saves struggling the one hundred mile hike round the Hospital corridors looking for a spare chair, or stumbling to the appointment by foot and walking stick.

So after extensive, and I mean REALLY extensive research .. some might say obsessively ‘really extensive’ research … a wheelchair has been purchased … my criteria was (yours may differ) …

Obvious colour so that it looks different to hospital ones, but not pink obvs – So no one as an excuse for not pushing it. Orange one purchased ….

Braking system … brakes essential (not all have brakes – ridiculous) … attendant (ie pusher) brakes, ‘slow down and parking brakes’. Also brake handles on wheels so that PIW (person in wheelchair) doesn’t have to yell ‘oi I’m over ‘ere’ when left stranded. They can ‘simply’ undo the parking brake themselves and be free-heeee.

Light, but not too light, It has to be stable.

Solid tyres, non burstable, hopefully. Might not be as comfortable as pump up tyres but then it is only a short trip chair and a puncture would be a ‘pain in the tyre’.

Fold down seat back – for collapsing smaller.

Oh yes it must be fold up – easy action with no screws.

Seatbelt for dodgy driving safety.

Filled in side arms (I know what I mean), so that my ‘essential toot’ can be gathered round me when being transported.

Easily put-on-able foot rests. Making the wheelchair lighter to lift when taken off. But I also have the option of using them – again must be easy to put on and off and flip up out of the way for ease of getting in and out.

‘It’ arrived today.

With slightly, some may say, over hysterical excitedness, I released it from it’s box (wearing rubber gloves – the 2020 rigor when receiving post to attempt to prevent virus transmission). Followed by a good handwash.

The wise ish man and I today spent a merry jaunt pushing each other the 2 feet up and down hall both in a dodgy PD state – entertaining in these lockdown days.

So far ‘happy’ with the purchase … it means also in these corona days that we will have our own wheelchair with our own dirt on it and we can (hopefully) be a bit self sufficient when pootling. round the hospital. Unless we both need to use it at the same time… an arm wrestle will have to be the decider.

So I own a wheelchair, whooperdeedooh – bet you’re well jel.

Okay i think that is enough information for one evening …. crickey I either rain or pour.

Rollator ordered

Beepie button forms being posted

I am now dairy, lactose, gluten, wheat, oat, barley, fruit juice, sugars intoler’flipping’ant.

I am not particularly ‘appy

But I am here

I am me

I am

I

LES

WSF

Ger on with it

Live your life

Enjoy it

Bian