141 So near …

This is a special post for you patient Parkinality subscribers. I thought you should be the third to know (after the Surgeon and me)

 So near …

For me May 2022 turned into an A to Y of emotions (no zebras yet).   From agitated to anxious, hovering over hysterical, through to yikes.  I was finally given a date for my brain operation.  Deep Brain Stimulation (DBS); electrodes implanted into my brain during a seven hour operation.  It is not a cure and Parkinson’s Disease (PD) will continue to degenerate, but one of the things it should do is allow me to reduce my medications, thus reducing their associated side effects..

Prose has escaped me at this stressful time, forgive me whilst I turn to rhyme.

The theatre is booked, the hats are packed.

Musical or who dun-nit? No, nothing like that.

In the theatre I plan to sleep throughout the ‘show’.

Don’t tell me the plot, I really don’t want to know.

After surgery I don’t intend painting the town plain red.

I hope it’ll be multicoloured with polka dots instead.

I’d love to eat what I want and then give a cheeky wink.

I’d like to walk without looking the worse for drink.

Periodically paranoid.

Occasionally optimistic.

I’m impatient to live my life.

I just want to get on with it.

The Parkinality Poet

Spiralling emotions combined with a whirlwind of organisation made the perfect storm.   During May I attempted to plan for every eventuality from the depressing to the essential, from the sensible to the ridiculous.  In rare moments of calm clarity the operation is a no brainer (punny).  I am being offered an incredibly specialised procedure which could improve my quality of life for a short while.  

There are no guarantees that the operation will happen until it’s happened.  As there are no guarantees how the surgery will affect my symptoms.  So many unknowns which are out of anyones control.  

The day of the surgery has finally arrived.  I will cut the waffle and get to the point.

10pm – packed my hospital bag.

11pm – repacked my hospital bag.

Midnight – last morsel of food consumed prior to fasting before operation.

3am – transferred my repacked bag into another bag.

5am – took first Parkinsons’s medication of the day.

6am – depart for hospital.

7am – arrive at hospital.

Mid morning – operating theatres reprioritised for immediate emergency surgery.

12.30pm – my DBS operation postponed.                                 

Deep breath … I think we need an intermission, in the form of a random retro ode.

White sliced loaf.

Warm processed ham.

Pink blancmange.

Semolina with jam.

Peddle pushers.

Drainpipes.

Riding on your Chopper.

Delighting the Angels with an orange space hopper.

Have I lost the plot?  Maybe I have.

Or has it slipped down the back of one of the rads?

In the good ole days we listened to Jam and ate loads of jelly.

In the good ole days there was always something decent on the telly.

I’m thinking back to a time in the past.

When the world didn’t move so fast.

A time when we put a man on the moon.

But to change tv channels we had to cross the room.

Today everything is on a cloud in the sky,

Intangible and virtual, we’re really not sure why.

I’m finding it difficult keeping up with this pace.

I promise I’ll pack light when we move to outer space.

The Parkinality Poet

… and exhale.

The chain of events which led to the postponement of my surgery could never be planned for and was totally outside everyones control.  At the end of the day my operation was planned and elective, and not an emergency.

The NHS is an amazing place, always ready to greet people with a smile, often in impossible circumstances.  Hospital staff are unflappably flexible, their days spent repairing humans and releasing them back into society. 

Time for another ode …

Thank you

Always a smile hardly a frown.

Even though some days must get them down.

Never fussing just efficiently here.

Pulping up pillows whilst lending an ear.

Press the button the bell calls them in.

Bed pan, blood pressure could be anything.

Constantly here for you always on call.

Day or night it doesn’t matter at all.

Caring for every single person here.

Each day helping to alleviate fear.

Mopping your brow, feeling your pain.

The next day returning again.

The Parkinality Poet

My bag will remain packed and I am ready and waiting for the new date. 

Onwards and upwards

140. Another couple of columns

Hello, cooeeee, sorry to interrupt, but another couple of newspaper columns for your perusal. I am many many things, from Effervescent to energetic to daft to doollally, but I am not lazy … I am merely being down with them there kids and rather than wasting world resources and writing a new blog I am recycling and reusing my newspaper column, thus saving the snails the squirrels and the whales.

Going out with Parkinson’s

Do not attempt if you are crossing the road, driving, operating heavy machinery or have Parkinson’s.  First wearing a pair of socks on each hand, put on and tie a pair of lace up shoes. Now stand up, ensuring you are near a chair to steady yourself.   Next, point your toe and (attempt to) walk; alternating, toe first, heel second, chanting ‘toe, heel’ keeping your legs straight.  Welcome to Walking with Parkinson’s.

Every time I think I have outsmarted Parkinson’s Disease (PD) it throws another spanner in the works.  The current spanner is a new problem with my mobility.  My knees will lock causing me to tilt forwards onto my tip toes.  My toes ‘glued’ to the floor, I find it impossible to move forwards.

However, I have had a breakthrough.  I suddenly realised I was using my feet incorrectly.  Leading with my toe rather than my heel. Once I started leading with my heel and consciously thinking ‘heel toe’, raising my knees, I can occasionally restart my walking.   

In my mind my new way of walking feels exaggerated and awkward.  I half expect to see oversized long red shoes on my feet whenever I catch sight of my reflection walking past a shop window, just needing a red nose and squirty flower to complete the look.   However in reality I am walking normally.  Walking, which had been automatic for over forty four years, now requires huge concentration. 

You know when you need to pop out for a loaf of bread but you’ve used up your dopamine hoovering the stairs? Nor me, I am more likely to use up my dopamine dancing to The Time Warp.  Undoing the toothpaste, finding keys, scratching my nose, so many tasks and so many movements within each task.  Dopamine is required to get those messages from my brain to my muscles.   As dopamine depletes, my symptoms become even more unpredictable and I become increasingly unreliable.    When trying to attend activities I often give up and stay at home.  I apologise to all those people I have let down.  

Determined to remain active and mobile as much as possible, there are a few things which help me when out and about. 

Sunflower Lanyard 

https://hiddendisabilitiesstore.com/shop/sunflower-lanyards.html

It is unnecessary to shout ‘wheelchair’ when entering a disabled toilet because people can see the person has a disability.  As I’d rather not announce ‘continence problems’ when going into a disabled toilet I wear a sunflower lanyard.  The sunflower being the symbol for hidden disabilities.  

Radar key

I have discovered that mere mortals can access those huge toilets behind the secret locked doors.  If you do need an accessible loo, a radar key, available from many charities, will unlock these toilets. 

Blue Badge

Watch as friends fall over themselves to be your designated driver.  Disabled spaces are often larger and near the venue.  You don’t have to drive to have a blue badge.  The badge belongs to the person not the driver or the car.  Take a look at your council website to see how to apply and whether you meet the criteria

Travelling safely to Hospital appointments

I don’t drive and public transport is difficult to negotiate.  I have so many appointments with PD, Crohns and a new eye problem (don’t ask), that friends can’t always help out.   I have discovered door to door hospital transport.  The service will get me safely from my sofa actually into the waiting room and vice versa.   An essential when symptoms are kicking off and I can’t concentrate, walk or interact clearly.   Services might differ from area to area, so speak to your doctors surgery.

The support group 

The support group is somewhere I always try and go even when PD symptoms are kicking off.   No week is the same and there is no obligation to take part in the activities.  We meet on the last Thursday each month (12.30-2.30pm) at Wiggly Willow Club House, Hockerill St, Bishop’s Stortford CM232DW.  Contact Claire.uwins@mac.com for more information or get involved in any way.  Come along for cake and a cuppa.

It is now the end of Parkinson’s Awareness Month,  Thank you to all those who read my column and contributed towards awareness in some small way.  From offering an arm to someone unsteady on their feet to donating to one of the charities.  

Another Column … read one get one free

Parkinson’s Awareness Month April 2022

Tin of soup, tin foil, tinnitus … rubbish gifts for a rubbish Tin Anniversary.  Monday 11 April is World Parkinson’s Day and April 2022 is my tenth Parkinson’s awareness month.   I’m not celebrating, and I am definitely not thinking; oooh fifteen more years and it’s silver.

As Parkinson’s Disease (PD) degenerates, life becomes more difficult to negotiate and the list of people I need to thank, and apologise to, gets longer.

Thank you to the many people who, when I am having mobility problems, have offered, amongst other things, their seat, their arm or a piggy back (really).   Apologies to the times I have refused a seat because I might fall off of it when dyskinesia is kicking off, refused an arm because I need to use both walking sticks for balance and refused a piggy back for health and safety reasons.  However, please continue to offer as there will be times when I need help, but I will still decline the piggy back.

Thank you to anyone who has ever held the lift door open for me when my walking has been bad.   Apologies for the times I have dragged myself past the lift announcing confidently ‘I can do stairs’.  On reaching the stairs I then stride up them as if nothing is wrong.  I’m not being rude.   Often walking up stairs, walking on a striped carpet, stepping over the cracks in the pavement, are all easier than walking on flat plain ground.  I think (and don’t quote me on this) it is something to do with the brain cueing the edge of the step or the line on the ground which initiates walking

I try to avoid lifts if at all possible.  Changing direction and narrow doorways can cause my walking to stutter and freeze, so negotiating a lift doorway can be problematic.   For some reason lift sensors are only set up to identify moving humans.  Inevitably when I freeze the doors shut on me and I am left unable to move.    The doors repeatedly rebounding off me as they stubbornly try to close.  I’m convinced that The Lift and PD are laughing at me behind my back, but that might just be my paranoia kicking in (paranoia can be a side effect of the medication)

Thank you also to the shop assistants, taxi drivers, delivery drivers, receptionists, medical workers.  In fact anyone in customer service working with the public who has ever lent an arm, ear or a shoulder to someone who needs extra help.

But … there’s always ‘one’.

The ‘one’ this month is the driver who took obstructing the pavement to a new level.  I was walking home, when suddenly a van started to mount the kerb.  I was slightly shocked and looked up at the driver who proceeded, with exasperation on his face, to gesticulate with irritation, waving me out of the way.   Unless he was deep undercover he was neither about to give birth nor delivering a kidney.  

Finally here is, in my opinion, my most useful top tip for people living with PD.  One of the many incredibly frustrating symptoms of PD is the way it affects the actions which seem unimportant until you can’t do them.  I’ve found that changing the style of the action can help.  Confused?  These examples should help explain; 

Difficulty stirring your tea?  Try changing the direction you move the spoon.

Difficulty waving?  Try waving like Royalty, unless you do already, then try waving like a child.

Difficulty wiping up the crumbs from the table?   Try  … actually don’t try wiping the table.  Walk backwards to the pub instead.   When I can’t move forwards often changing moving ‘style’ can initiate movement.  For example, walking backwards or my own style of ‘dance walking’, incorporating the occasional jazz run, will often help initiate movement.

This year I have, again, produced a short awareness video in the hope that it will give people more understanding and will therefore become more tolerant of the confusing symptoms of PD.   Also, in the hope that occasionally a neurologist might view it and it will add to their understanding.   There should be a link on the Indie website and facebook page.  Take a look at the video, but then watch some comedy for some light relief.

139. A couple of columns…

I have primed the engine, pulled the starter motor and started up my column again. So here below are the two latest columns for your soporific amusement.

Bishop’s Stortford Independent Newspaper columns.

Published January 2022 :

Despite being as anti social as is socially acceptable. Despite making visitors do a lateral flow test.Despite continuing to swap traditional greetings for an elbow/shake hybrid.The Wise-ish man and I tested positive for Covid.   

We had managed to give Covid the slip for almost two years. However on 3rd and 4th January 2022, within 24 hours of each other, the second line on two lateral flow tests confirmed positive Covid results.  We had followed the rules and had both jabs and the booster.  Rather than being panic stricken, I was quite calm.   I had resigned myself ages ago that at some point The Virus would track us down.

Over the first few days it felt like Covid had been to the ‘Pick n Mix’ aisle of the ‘Symptom Supermarket’: including headache, sore throat and exhaustion, to name but three.  Each symptom was garnished with a sprinkling of Parkinson’s and Crohn’s, both of which seemed to be competing with Covid for attention.  Although, at least Covid couldn’t steal my sense of smell; Parkinson’s Disease (PD) had taken that years ago. 

At time of writing we were required to do PCR tests after the positive lateral flow tests.  As neither I, nor the Wise-ish man, ride a motorbike, or drive a small van or car, we could not do a drive through test.  We ordered PCR tests by post and booked a courier to collect them.  Sent on Thursday, returned on Sunday with a positive result and the instruction to isolate until Friday 14th.

Then my Covid symptoms changed: a continuous cough which would not shift, interspersed with, what felt like, an elephant sitting on my chest and a total loss of voice.    The stress caused the Dystonia in my feet to join in the party.  A call to 111 and they despatched a ‘blue light’ ambulance to check me out. 

I was worried that I might have to go to hospital.  I was concerned that PD symptoms would make me appear inebriated, which is fine at 10pm in the pub, but slightly inappropriate in hospital,   Also, now that Covid was affecting my vocal chords, I was worried about not being able to speak or make myself understood.  I’d picked up a couple of phrases of sign language from watching Rose and Giovanni on Strictly, but I didn’t think the sign for ‘applause’ would be particularly useful in hospital.   However one fear about going to hospital was removed, at least I wouldn’t catch Covid.

Thankfully I didn’t go to hospital.  The paramedics were extremely thorough and I was given a clean bill of health (apart from the obvious), and told to take paracetamol and rest at home.  

As Covid symptoms declined so did the state of the flat.  Yoghurts were eaten with forks, as dirty china and cutlery piled up in the sink.   The floor became a meal map of dropped food.   Lovely friends and family delivered shopping to the doorstep.  One friend in particular left a much appreciated roast dinner and casserole.  Trinity Pharmacy efficiently delivered our medication.   

So, how did we get Covid? 

We did go out over Christmas and New Year and we had a good time.  I began to think that we should have stayed in, but I know that would not be good for our mental health.  I am scared that there are still so many unknowns surrounding Covid.  I am also concerned about the plethora of armchair experts who have learnt all they know about the virus and vaccinations from social media.   

Therefore I have made a conscious decision to direct concerns and questions to the most appropriate expert;

… to seek advice from Mary Berry about how to make the perfect Victoria sponge.

… to ask Penelope from ‘Penelope’s Pick n Mix’ how much it is for a quarter of sherbet lemons.

… to listen to qualified scientists and medical professionals for the current advice on Covid.

Both the Wise-ish man and I are now testing negative.  Although concerned, we will be venturing out again and we will be wearing masks.  We will continue to do lateral flow tests regularly and will ask visitors to do the same.

I am left with a croaky voice, making communication frustrating.  So, if you see two people, with rollators, waiting outside different pubs, it is likely to be due to miscommunication rather than an argument.

Stay safe.  

Published February 2022 :

Apart from superheroes, who are contractually obliged to wear a mask, I seem to be one of the few people still wearing a face covering.

After recovering from Covid, despite being apprehensive, the Wise-ish man and I had two options; go out or go mad.  On our first outing, after half an hour, I rushed home in a panic, imagining clouds of Covid swarming like bees in every corner.  Despite gradually increasing in confidence, I’m still very much aware Covid is still around.

Once in a while, I like to reiterate the definition of Parkinson’s Disease (PD) for new, forgetful and/or disinterested readers.

In people with PD, dopamine, a neurotransmitter, is depleting.  One of dopamine’s responsibilities is transporting messages, initiated in the brain, to the rest of the body to move.   No or low dopamine, no transport for messages, no movement.  Generally people have enough dopamine for life.

A scenario to clarify and/or confuse.

Drizzly Sunday morning football.   Whilst the players are busy on the pitch, dopamine is busy in their brains.  Each brain is working out how to play the four-four-two formation in the Managers team talk.  Messages created in the brain are then transported by the neurotransmitter, dopamine to the muscles, instructing movement, ie legs to run and feet to kick the ball.  Peter, running down the wing, has PD.  He took his 9.15am medication as usual but it has not kicked in and he is gradually switching ‘off’*.  Low dopamine, means he slows, unable to move.  Stationary on the outside but going crazy inside. The ball is passed to him and he misses a sitter. 

*People living with PD are either switched ‘On’, when medication is working, or switched ‘Off’ when the debilitating symptoms break through.

Imagine the excitement on discovering a forgotten bar of Fry’s Chocolate Cream in a top cupboard.  Add; the exhilaration when you receive a phone call informing you that you’ve won front of queue at HMV for a Duran Duran record signing (really).  Add a sprinkling of space dust.  Then multiply that feeling by a million.**. That’s similar to the feeling I get when I switch ‘on’.  It’s amazing, exhilarating, exciting.   I feel invincible.  However I’m constantly anticipating the next switch ‘off’ when the rug will be whipped away from under me.  Hence, when I switch on, my mad rush to do things ‘now’.  **insert your own examples.

In rare moments of near normality, sometimes people comment that I ‘look well’.  I might reply that ‘PD is behaving at the moment’, failing to mention the twenty plus tablets I take nine times a day.  Absorption of PD medication is both unreliable and unpredictable, making people with PD unreliable and unpredictable.  The tablets go into the stomach, but need to reach the brain.   Food, hydration, sleep, activity, affect absorption; I could do the same things two days running and the absorption will be different.  This unpredictableness (is that even a word?) affects every minute of every day, from lacing my shoes to picking my nose.

‘On’ times are getting fewer and shorter, as PD deteriorates and medication and side effects increase.  I am on the list for an Advanced Treatment; Deep Brain Stimulation (DBS).  It is not a cure but it should give me a better quality of life for a short time.

My uneducated, non-scientific description of DBS.

Electrodes are implanted in the brain, connected via a cable under the skin to a battery pack on the chest.  A controller Bluetooths onto the battery allowing me some control over the electrodes which do ‘something’ (probably not a medical term) to the brain, simulating dopamine release. 

Living with PD for over nine years I’ve almost forgotten what it is like to live without PD. I want to wear that cardigan with the fiddly buttons.  I want to apply mascara without stabbing myself in the eye.  I want to cook dinner without dyskinesia threatening to whip lash me into nutting the extractor fan. 

I am trying  to be a patient patient, but I feel like my life is on pause.  

Unfortunately PD is not on pause.     

NB; You could try arguing to the ref that technically dopamine was involved in a foul. However, at time of writing, I don’t believe dopamine can be shown the red card.

       

138. Wallowing

.  

Between you, me and the three people who have noticed…. I haven’t been to a support group, written a newspaper column, posted on Parkinality facebook or written a blog for differing lengths of time 

Even I, self proclaimed positivity person, has been stretched, resulting in a finger stinging twang.

Despite my best attempts at a jaunty smile and heel click, I can’t dress it up – I need that brain operation.

I am still fortunate that I do get flashes of normality, very occasionally those flashes can last a couple of hours.  But generally walking, talking and dancing are disappearing and those invisible symptoms are dragging me down …  

So I am trying to pull myself together and have started writing poetry again … entering competitions and doing some art.

I’m trying not to wallow and at this moment in time I am sitting on the exercise bike typing with one finger whilst listening to Popmaster not feeling too bad ish 

Wallowing Ode 

I stink I smell

I’m not doing very well

Not washing every hour

Not washing every day

I should simply 

Shut up and go away

I should brush my teeth

I should comb my hair

But do you know what 

I really don’t care

I don’t care what I look like

I don’t care how I feel

Just look me in the eyes

What you see is real

I’m not sweetness and light

I’m not full of positivity and cheer

I’m a sad person full of fear

I am fearful of each day

When I awake from my sleep

The thoughts in my head

Would make a grown man weep

They slither round my brain 

Like a continuous snake

And do you know what

They are real not fake

My future is desperate

My future is bleak

(Yes I am aware) 

My eyes have started to leak

I should turn the music up

Dance around the house

Attempt a volley and an ace

Am I a man or a mouse?

Actually I am neither

I am scared and more

(At time of writing) 

Crying isn’t against the law

A funny one to lighten the mood …

Nope 

137. Bring on the drill matron

Gone are the heady days of …. Oooh tennis is a cure … the halcyon days of karaoke gets me moving … the counting the distracting the running the whoopperdeedohdah another day another trick to beat this damn thing.

Now I am worried … truly worried. I do leave the house, I do go out, I do ‘dance’, I do eat, I do drink, i do shop … i do laugh I do smile I do banter.

But … would I chance going out alone??? Would I chance a lot of things?

As I said in the title ‘bring on the drill matron’…

Apologies … misery guts here will go and sit and eat crisps

LES

136. My futile* attempt at humour

Futile = pointless

Humour = well I’ve forgotten what that means

Sorry really can’t think of anything positive to say. Actually that is a fib … probably about six (yes about SIX WHOLE SIXES) times a day I am tip topish. That is when each time equals about 10 minutes. Maybe a bit of foot buzz, or arm tremor, but almost totally tip topish … then I am invincible a million miles an hour woman … cleaning multi tasking the lot positive happy whooppeeeeddddoooodah

But the rest of the time is crap, the other 2,456 times a day I am awful … the rest of the time I either have Dyskenesia, Bradykenesia, Freezing, Dystonia, Tremor, Constipation, etcetera etcetera. And this has nothing to do with Disco dancing with Brad in the freezer (see futile attempt at humour). Sometimes these symptoms are blindingly obvious, sometimes they are hidden up meh jumper, out of sight, but definitely not out of mind.

So at the briefly occasional, and oh so frustratingly short, times I am switched on – ‘why am I having a brain op?’

At the million times I am switched off – give it to me now … get the drill matron.

Had my hair done proper short apparently ‘I look 20 years younger’ so that will be four years old then … again I refer to ‘futile attempt at humour’.

So an ode I wrote recently – depressing alert.

I THINK I DO ODE

The future flashes … fluctuating

We glimpse the future, we know the past

When did the world start to move so fast?

We know the past, we reminisce

We hanker after the good times

We can never regain

We must never regret

But should we forget?

If we forget, we will never remember

How it was before PD

If we forget, we will never remember

How it was before this ‘thing’ took over me

If we forget, we will never remember

How it was before PD

The good times

How it was when I used to be ‘me’

Thoughts overwhelm

Thoughts engulf

We remember the good times

We forget the bad

We forget the times, I thought I was going mad

Rose tinted spectacles

Blackened and dark

Seeing the past 

When did the world start to move so fast?

We compare, we contrast

When did the world start to move so fast? 

Now is constant, now is real

Can’t you see?

Now is me

We hope 

We pray

That today is a good day

We glimpse the future

The unwritten truth

The path to nowhere

No one knows

But I think I do

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’.