135. What has Janet been up to?

I have been away … not literally obvs …pandemic paranoia and all that. But I have been neglecting the ole blogerooni.

I have been busy thinking … lots on my mind.

Parkinson’s has been continuing ‘yawn’ … continuing to table* up my life and to be honest it is dull. Deterioration, dyskinesia, dystonia, Doris the duck … dull dull dull. Sorry sorry sorry. There is only a certain amount of deterioration one can write about and you read. So, in case you were concerned, I am still deteriorating. No new news, no nothing.

Until now …. trumperty trumperty trump – thank you Nellie

*to maintain this blogs PG rating I will continue forthwith using the world ‘table’ instead of a more expressively intense expletive.

So, I have had confirmation that I am on The list for DBS (deep brain stimulation) … if you want more information please look at the Parkinson’s UK website. I am gathering information on a need to know basis, ie I need to know what hat I will be wearing after the operation to cover my bald head, but I don’t need to know how they put electrodes into my brain. In the meantime I will be having my hair cut in a pixie/elf/old lady hair cut to preempt the shock of a shaved head after surgery.

Over the past few months, as well as thinking, I have also been going through a series of assessments to see if I am a suitable candidate for the operation. To save time, brain power and typing ability I will cut and paste the newspaper column I wrote about the assessments …. here


Parkinality Column May 2021, Advanced treatments

Don’t be alarmed if one day you see me skipping down the street with drawings of rabbits on my shaved bald head **.  I hope it will be because I have successfully had brain surgery, an advanced treatment for Parkinson’s Disease (PD).  I’m sure even the most patient, empathetic reader of Parkinality will have started to wane.  Over eight years of dyskinesia, dystonia and degeneration and PD still has no cure.  I’m currently being assessed for my suitability to have Deep Brain Stimulation (DBS), 

First used to help PD in the 1980s, this is a definition from the European Parkinson’s Disease Association (EPDA) website… 

‘DBS therapy uses a small, pacemaker-like device to send electronic signals to a precise area in the brain that controls movement … via very thin wires. Stimulation of these areas appears to block the brain messages that cause disabling motor symptoms and so can provide greater symptom control’ 

The aim is to allow me to ‘shop without dropping’ and to ‘write without wobbling’.  It should enable me to reduce the amount of medication I take, lessening the side effects.  It is not a cure and in time my medication will need to be increased again.  However in the short term it could give me a few years of improved ‘dancing and dusting’.  The decision to have brain surgery is not made lightly. I’m currently being assessed to see whether I am a candidate for surgery. 

Motor skills assessment.  This is to assess my movement when I’m switched Off (unmedicated) and On (medicated).   I’ve taken PD medication, 24/7, for over seven years and being unmedicated was a real concern, I didn’t know what would happen.  It is vital that the reduction of medication is gradual and carefully supervised by my PD nurse.  It would be extremely dangerous to stop medication abruptly, without specialist guidance.  I took my last tablet at 5am on the day of the assessment, by 8am I was depleted of drugs, switched Off.  Thankfully the car journey to hospital, although difficult, was relatively uneventful.

In the waiting room, unrestrained by medication, it was party time for PD symptoms.  This was definitely an example of; ‘don’t judge a book by the cover’, on the outside I was a ‘disaster novel’, on the inside, I was still ‘me’.  Desperate not to be judged by the other patients, I tried to explain that I wasn’t always like this. When I write ‘explain’, I mean shouting and slurring, whilst simultaneously rigid and writhing, muscles contorting and my face gurning with Dystonia.  

Finally, my Neurologist wheeled me into the consulting room.  I was put through a series of physical tests, including walking and standing. Unmedicated they were incredibly difficult or, in some cases, impossible.  I was videoed for the assessment, apologies to the ‘bleep’ operator.  I was allowed to take my medication over lunch and I gradually switched back On.  Now fully medicated, I was reassessed and I found the same simple tests, simple.

Brain inspection.  I was apprehensive about an MRI scan during the pandemic, however the waiting room was empty and Covid rules adhered to.  The scan was noisy, a bit like being in a rubbish space invaders game.   Forty minutes of scanning where, for some unknown reason, I sang ‘Knees up Mother Brown’, whilst imagining I was shooting aliens.  This distracted me and probably amused/concerned the nurse who was operating the MRI scanner.

Other assessments included wearing a ‘special watch’ (probably not the technical name) which monitored my On/Off times and sleep patterns.  I also had mental arithmetic, written tests and completed forms about my non motor symptoms.

I will find out soon whether I am suitable for DBS surgery.  However, the pandemic will inevitably delay any surgery.

Fingers crossed.

Stay safe

** Why would I draw pictures of rabbits on my shaved head?  Because from a distance they will look like hares.   

So I have failed/passed the assessments and am now ‘waiting’

Over and out for now

134. Dance and Donate

Dance and donate to Cure Parkinson’s with Souled Out Summer.

On Saturday 27 March at 4.45pm The Intermission with Andy and Julie will be ‘on virtual tour’, opening Souled out Summer on Facebook live.  

Tune in via the Facebook page at 4.45pm to hear a bit of banter and some Parkinality Poetry.  Then from 5pm the DJs from Souled Out Summer will be unleashed, spinning vintage vinyl, from the 50s, 60s, 70s.

No need to book a taxi or babysitter – this is a virtual event and a fundraiser for Cure Parkinson’s.  So why don’t you click the just giving link and donate whilst you dance in the dining room, listen in the living room, pogo in the parlour.  All money raised will go to Cure Parkinson’s to fund their vital work to speed a cure for this awful disease. 

Diagnosed with Young Onset Parkinson’s Disease at 44, Julie has lived with the disease for 8 years, and her partner Andy, diagnosed 49, has lived with PD for 15 years.   It is a chronic degenerative condition and currently there is no cure.  During lockdown charitable donations have been lost through the cancellation of so many events they desperately need our support.  

https://www.justgiving.com/fundraising/sos21-spinoutspecial

133. ‘Un’

Undignified uninvited unfair unfathomable unimaginative unfortunate uncomfortable undescribable unreasonable just flaming unfair unhelpful ungainly

This is getting ridiculous

Off and on like a switch, a proper switch, not a faffy dimmer switch. Lockdown, to be honest, is becoming some sort of mini hell, and I don’t mean a Menopausal Italian Job – although I would like to blow the flamming doors off and bound meaningfully back to Top Shop … just remembered as if life couldn’t get much worse – no proper Top Shops anymore – I’ll have to go elsewhere for my Pret, Blouse and Tattoo.

And breathe

Really finding it difficult – and with all due respect – and this is not a very pc thing to say … it is ‘not the same for everyone’.

End of speat

132: My Greatest Fear

‘My Greatest Fear?’ interesting question Mr Obelisk. ‘Is becoming invisible’

When I say ‘My Greatest Fear’. I am talking with regards to Parkinson’s. It is a ‘given’ (not sure what that even means), that ‘the usual’ ‘fear’ things are already on my ‘Fear list’, ie anything involving wild animals, arachnids, frogs, ufos etc etc ‘

My greatest fear is becoming invisible and being ignored. I don’t mean invisible in a ‘superhero way – as ‘Invisibility Girl’ and I don’t mean ignored as in ‘not being chosen for the netball team’.

‘Please don’t judge a book by it’s cover’

This is becoming more and more important as Parkinson’s progresses.

I wager that most people want to be involved in society, acknowledged as a human.

When I am over moving I get quite a lot of attention, (just to clarify; I am not attention seeking, I just want to be a member of society, and if given a choice I’d rather have attention for something other than having PD). Many people are lovely and will offer help, some people will cross the street, some people will get accidently hit with my walking stick. Many friends ignore the Parkinson’s symptoms and just treat me as a normal person. But generally people notice `I am present, I am a member of society’

However if I am frozen, in many situations I am ignored, whether intentionally or unintentionally. And very quickly could become invisible and feel like I am not a member of society. Although many good friends who understand PD ignore my still exterior and treat me as a normal person.

I was sitting in the garden in the summer, quite happy, thinking about lots of things, brain super busy and animated; a proper interesting human being on the inside. I suddenly became aware of my physical self and realised that I had been sitting there unmoving for about 20 minutes.

I then started to think about how I must look like from the outside, still and unmoving in both body’s and face. Many peoples initial reaction could be that ;

I am as blank on the inside as the outside.

I am a boring human being.

I am not noticed at all and have become invisible.

People don’t bother interacting with me as I appear disinterested.

In the garden, even though I was on my own, I imagined I was frozen in the pub and tried desperately to force my mouth to form a smile, or a wink, or raise an arm, anything to let the outside world know I was still present and a participant in society. Even trying to speak in a frozen situation is a challenge. My mouth becoming smaller and volume quieter.

So, please please don’t judge people with Parkinson’s by their outward appearance.

So for that reason when ‘they’ finally release me back into society, I imagine emerging blinking, shuffling and rattling* wearing a neon tabard.  The tabard will be fitted with a scrolling LED display which will alert people to my mood).  *(one thousand and five tablets in lockdown and counting).   So Grumpy, Happy, Dopey, Bashful, Smellie   Obviously I am not medically trained so Doc will become ‘Excited’ and, for obvious reasons, Sneezy replaced with ‘Irritated’

During lockdown the rest of life might be buffering but Parkinson’s continues to impact on every aspect of everyday life.  Declining dopamine production continues to disrupt messages from the brain to the muscles to move.  Body movements such as striding, sewing, waving and walking, and facial expression, such as speech, smiling, winking and whistling are all increasingly affected

‘First Impressions Count’

The other day I did have to go to a hospital appointment unmedicated as part of the assessments for an advance treatment.   Yes, unmedicated, over seven years of unbroken medication, I had no idea what would happen and I was scared.

Diagnosed over eight years; Changing PD symptoms, increasing medication and it’s side effects, mean I am now being assessed for DBS (deep brain stimulation).

DBS involves seven hours of brain surgery to implant electrodes deep into my brain to stimulate dopamine production.    The result, a shaved head (which I intend to cover with drawings of rabbits)* and the ability to significantly reduce my medication, and associated side effects.   The device is powered by a battery implanted under the skin, controlled by a blue tooth hand held device.  This is not a cure and Parkinson’s will continue to degenerate.  However it  should give me a better quality of life for a few years.   

The first assessment involved me being tested at my worst and my best.   This involved arriving at my appointment unmedicated.  The gradual, careful reduction of my meds over several days, supervised by my nurse, was vital.  It is dangerous to stop medication abruptly and without specialist advice.

We were an hour early.   I was in a wheelchair, rigid and upright, but with dystonia (involuntary muscle spasms)  contorting and twisting my neck and back.  Desperate not to be judged by the others in the waiting room i tried to explain what was happening to me. When I write ‘explain’, I mean shout, mumble and sing, whilst writhing about.  Years ago I would have avoided myself.

My consultant put me though a series of physical tests which were incredibly difficult or in some cases impossible.  I was allowed to take my medication and I gradually switched back on.  After lunch I was medicated and I walked into the appointment pushing the wheelchair, retook the physical tests and was able to complete them all.

I have other assessments to go through.  I await the results and then hopefully a break in lockdown to enable the operations to restart.

Although first I have to get the Crohns under control … as always I am on the case and new medications starting next week for Crohns.

This lack of facial expression which with PD is often ‘affectionately’ known as the ‘mask’ is very distressing.  Mask wearing. has meant that the whole world are experiencing a tiny bit of what people with PD have to go through.  Although I don’t put my mask in the bin at the end of the day.

I have now had the first Covid vaccination and hopefully there is light at the end of the Covid tunnel.  Although I didn’t have it early because of the PD. It was because of the new kid on the block – Crohns. I am now clinically vulnerable as I need to go onto an injectable immunosuppressant, so I will be vulnerable for the first few weeks on that medication.

I had a few random symptoms after the Covid jab which worried me, so I was advised to have a Covid test.  I was sent a home swab test. I first had to do a swab test from my throat and nostril.  A challenging procedure requiring dexterity. However the swab was not a problem in the end. The big challenge frustrating with fiddly fingers was building the actual packaging of the swab, in two bags and then have to build a flat packed box.  The results negative … phew.

  • why would I draw pictures of bunny rabbits on my head?  Because from a distance they will look like hares.
  • Stay safe and sassy.
  • In the words of Gabriella and Troy ‘We’re all in this together’.  

This is me

I have Parkinson's
Three small words
Changed my life

This outer shell
Is not me
Do not stare
Do not judge
Do not pity

This outer shell
Is not me
Ignore the mumble
Ignore the stoop
Ignore the shuffle

Parkinson's bullies me
Tries to control
I stand up
Take it on
I will overcome

On the outside 
I am Parkinson's
On the inside
I am me

By The Parkinality Poet

131. Doh Blooming Song

Hypochondriac?


I wake each day with a bout of flu
I got no sleep and have aching limbs too


I wake each day with the chicken pox
I feel sweaty and lethargic but have no spots


I wake each day with tendonitis
I've hip pain and everywhere elseitus


Doctor Flanrinsto – is not amused
Listing your ailments – he is confused
I have a shaky hand and shuffling walk
The Doctor thinks that I like to talk


'It's a mystery there is so much wrong with you'
'when you are only 42'


I was told, I'm not ill
So why, give me a pill


I was told, I'm not ill
To be honest, I feel ill


I was told, I'm not ill
By a person, who is not ill


‘I am not ill, I have a condition which needs to be managed’
Flaming heck – well, if this is not ill, I am severely damaged


by Janet Bric-a-Brac

130. Difficult Baffling Situation

It certainly is a Difficult Baffling Situation at the moment for the whole wide world.

Pandemic, Vaccinations, Homeschooling, Homeworking, Mask Wearing, Hand Sanitising, Paranoid Androidness, Zooming, Staying In,

My icing on that Crap Cake is Brain Surgery ASsessments and Crohns. Note to self … this is not a moaning column it is an awareness column … it is a very fine line between the two. In fact … sod it I am going in to full blown moan …

Okay assessments involve hospital visits, involve more paranoia (both self inflicted, real, and everything in between).

A digression … I am fed up with this game … my life revolves round blooming illness …. i spend the day taking tablets, reading labels, managing the flipping symptoms so that I can find a spare 2 minutes when everything is working to actually brush my teeth. Brushing my teeth is often unachievable …

Please shut up (not you … me) loads of people have stuff going on … I have the reliance on others, I hate the feeling of being out of control, I hate feeling this way. But ho hum I need to snap out of it.

I certainly don’t want sympathy … I just don’t want to be ill anymore … it is getting very tiresome.

Sorry I will zoom off and come back later when I am more Positive….

PS I am fine just a moment of down ness …. normal annoying positivity will return.

Keep it real

Stay safe

Eat Spam

129. Today … Quandary

Today I am in a quandary; how much of my life should I include in this blog? What are my parameters? I don’t include my family or friends, afterall I chose to write this blog, they haven’t chosen to be written about. Also, I started it for Parkinson’s Awareness, not for Me Awareness, promising that I would not include photos of my food. It is called Parkinality not ‘ParkinandeverythingthathappenstomeInality’ .

Let me explain …

Don’t you just hate those ‘know it alls’? Those people who dole out advice from ‘their personal experience’? Who latch onto a phrase, repeating it at every opportunity.

”Act when your body is whispering’

Sounds familiar?

Am I talking in riddles?

What am I on about ????

When diagnosed with PD in 2012 it was a shock but I had a tiny amount of acceptance as Parkinson’s was now my ‘thing’. I had always thought that everyone has a ‘thing’, and PD was mine. I was armed, dangerous and ready for the challenge with my amazing support team.

Importantly I had ‘acted when my body was whispering’. Meaning my PD symptoms on diagnosis were, although very real, relatively mild and so I was relatively strong and able to deal with those early years following diagnosis head on. I learnt and discussed and became (a proper medical professional called me) ‘an expert patient’.

Now 9 years diagnosed, PD symptoms are ramping up to warp speed. I am almost at the top dose of medications, meaning I am dealing with their side effects. PD now affects all aspects of my life, from putting on my socks, to making pancakes, to sleep, to walking, to talking, eating, scratching, tap dancing, nodding, waving, opening the fridge, skipping, writing, shuffling cards…. etcetera.

I am now facing brain surgery this year … DBS … deep brain stimulation …. to manage my symptoms. I am facing a series of assessments and if suitable hope to have my head shaved and electrodes inserted into my brain.

I might appear to be being a bit blasé about the brain surgery, but to be honest I’m not. However I have had a few years to come to terms with the inevitability of advanced treatments. I am learning all the time and although I am still scared, I am not totally petrified. And I hope that the treatment will reduce my medication and allow me back some of my life for the next few years (although PD will continue to degenerate).

I am now having a bit of a reverse deja vu moment. Hindsight is a wonderful thing, and I did in hindsight have the benefit of hindsight but I failed to act on it.

Again, my body had been whispering new symptoms for a while. I kept half heartedly listening to the whispering but, unlike PD, I acted in a weak, wimpy way. I acknowledged symptoms but underplayed them, I went through the motions (excuse the pun) of visits to GPs had blood tests, stool tests, stays in hospital, suffered a myriad of symptoms but this time I wasn’t proactive. To be honest I was scared. And anyway I already had my ‘thing’. It seemed greedy to have two.

2021 I am having to come to terms very very quickly with the fact I have another chronic condition – Crohn’s has now given up on whispering, skipped shouting and is now screaming at me.

Crohns is now impacting on every aspect of my life. It is serious and it has to be dealt with.

I am now living with at various times; chronic constipation, pain, weight loss, bloating and toileting urgency. Which have got to the point when they cannot be ignored.

I have now been told my Crohn’s is severe and am being prescribed injectables to try and get it under control.

Things are majorly twaddley …

PD symptoms and injections are not a match made in heaven ….

Ideally my Crohn’s needs to be under control before the brain operation takes place.

The injectables will be immunosuppressants – not great during a pandemic … meaning I will need to super shield.

I need to have a series of hospital assessments to ensure I am suitable for the brain op – visiting hospital during a pandemic when I don’t drive and am taking immunity compromising medication is not the greatest

I am petrified.

One day I will use a proper swear … until that day fukinshtinitus.

But I am on the case …. a little late, but better late than ….

Flip

So the point … yes there is one.

There will be others who will be challenging me in the Top Trumps of Disease Championships. Who will be living with Pd and dealing with a myriad of other twaddle.

I still don’t intend including photos of my gluten free pasta and dairy free ice cream. Parkinality’s remit will be subtly expanding, to Parkin(andotherstuffIthinkisappropriatetoinclude)ality

Best foot forward

Clean foot back

And do the Ho ho ho keee ko keee

If you find my marbles please post to me ….

128. This is getting difficult(er)

I started this blog way back in January 2017. I started Parkinson’s way before that, but the ‘official’ documented date was November 2012. Now into my ninth year of living with this ‘condition’ life is, inevitably, getting difficult(er).

When diagnosed I immediately walked up and down the stairs a lot and planned a super long haul holiday. I arranged a New Year’s Eve party and booked a weekend away for my pre Christmas 45th birthday. I contacted Parkinson’s UK and rang the local Pilates teacher about rehab for PD ‘sufferers’.

When I say ‘immediately’ I obviously don’t mean in the car on the way back from the hospital. I saved those jobs until the next day.

‘Immediately’ I told the children and rang everyone I knew (my criteria was friends/relatives who I could ring and just say ‘its me’ and they knew my voice so well they didn’t need explanation). (Again, when I say ‘immediately’ I mean when I got home). All knew I had a Neurology appointment. I just rang and said ‘Hi I’ve got Parkinson’s Disease’. It was literally (almost) as quick as that. In hindsight, a little cruel, but I thought I could tell everyone and move on and get on with my life.

My life I knew would never be the same, but at least I had a diagnosis. Despite being told by my Nurse that ‘I wasn’t ill, I had a condition which could be managed’, I immediately had a wake up call. Not that I had been slacking up until that point, but the thoughts of becoming a Dalek over the coming months led to me enjoying the stairs whilst I could.

Over the next five years life continued. I was told that with PD I would have ‘five good years’ and I didn’t turn into a dalek in those first twelve months. The world continued to turn. My symptoms were annoying, gradually interfering more and more with my (and my friends and family’s) lives. There is definitely more than one victim. Difficult for me but difficult(er) for those around me as new symptoms slowly emerged.

Some friends disappeared subtly, some in a flurry. New friends appeared and some acquaintances became wonderful friends. Life was changing slowly and subtly,

I started the blog in January 2017 because for some reason I felt the need for a project. With mixed encouragement I started the blog, invented the word Parkinality and showed it to a local theatrical genius who I held in high regard who really liked it. The rest, as ‘they’ say (whoever ‘they’ are), is history.

I won’t bother writing anymore background. You can go back and read the ‘first five years’, all written as tidy, organised, humorous, in hindsight, essays. When does an upsetting incident turn into a humorous anecdote? I found them easy to write and got a good reaction from everyone. Which in hindsight wasn’t ‘everyone’. I quickly realised those that liked it commented to me; those that didn’t kept quiet … their mothers obviously having told them ‘if you can’t say anything nice, then don’t say anything at all’.

Then the blog went a bit feral … grew a beard (along with my hormonal, menopausal self) and PD symptoms started getting more demanding and interfering.

I now realised the first five years were a doddle ….

Well, maybe not a ‘doddle’, but certainly ‘a walk in the park’ literally having completed annually a sponsored walk to raise money for Parkinson’s UK, one of which was at Chatsworth over 10 miles …

So life continued. I continued managing the condition but, try as I might, I couldn’t stop the roller coaster that is Parkinson’s. I could ‘manage’ quite well, having taken up piano, jogging, tennis, and many other, in hindsight, annoyingly positive new projects and achievements. I say ‘annoyingly’ because those who were further advanced never commented but may well have thought …. make the most of it …. and I am ‘happy’ that I did. I can honestly say I have no regrets (apart from having Parkinson’s, obviously).

On diagnosis that same nurse said ‘I was the same person I was the day before being diagnosed’. Young Onset Parkinson’s (diagnosed before fifty) is, in the main, slow progressing. Five years after being diagnosed ‘I was still the same person, but more knowledgeable, more determined and more focussed ….’. Parkinson’s had become an irreversible, inrefrutable part of my life. I no longer got the odd half day of respite. generally it was there constantly, never giving me a break…. it had become part of me.

Hence Parkinality – Parkin(son’s) (person)ality, it had become part of me. People with Parkinson’s are all different, and all see it differently. Some might say it is not part of them it is an interloper which follows them. Some never accept it, some fight it, some try and ignore it. I have ebbed and flowed through many feelings, however in the main, tried to make allowances, whilst trying to control it.

Parkinson’s is constantly trying to get the upper hand and take control. In the early days, much like a baby, it was relatively easy to be in control and be the grown up. However over time things changed. I changed and Parkinson’s changed. I constantly try to stay several steps ahead, however as PD is getting faster and more agile, I am becoming tired and slower.

After all that deep meaningful stuff I will let you have a snack and warm drink … then I will write again. It is important I refer occasionally back to the reasons for writing the blog. It is not a place for waffle and twaddle (apart from when it is). I feel a responsibility to inform and tell honestly my experiences. This blog is open to public viewing, is shared and subscribed to. I certainly don’t want to misinform, underinform, scare or put a gloss on this crubbish disease.

I write honestly. The next blog will cut much of the twaddle but will honestly tell how things are now. Those that don’t wish to read, its fine to put your hands over your eyes. I often feel the need to write humorously so as not to upset people, but that is a tad silly and to be honest, at nine years is becoming impossible. You are, after all, reading a blog about a (currently) incurable degenerative neurological disease. Expect to be informed, upset, and hungry. It is not a laugh a minute … more a giggle every four days and a Belly laugh the first Thursday in the month,

To be continued

127. 2021 Thoughts and Stuff for the year ahead

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