145. Award winner

Column I wrote after winning the award. Originally appeared in local paper, Bishop’s Stortford Independent.

I’d be exaggerating if I said I’d lost them all as I did manage the odd ‘crikey’ and ‘thank you’.  However, even now, back at home, I am still lost for words.  So, what on earth happened to me in a marquee in January, to incite this reaction?

Warning … I am about to do something very un-British and blow my own trumpet

Drum roll please; I won the ‘Person of Courage’ award on Friday 26 January at the 2024 Indie Awards evening .

To see it written down is a shock, but to rewatch it on the live facebook stream is just surreal.  Me courageous?   I haven’t scaled the highest mountain or swam the deepest sea.  

When the awards ceremony was announced, as in previous years, I sent a cheeky message to the editor of the paper, Paul Winspear, to ask if there was space for a random contributor to the newspaper (thats me) to attend.   He came back to say that, yes, I could attend and I could bring a guest.

But I nearly didn’t attend.  My plus one was going to be the ‘wise(ish) man’ but I had ‘kindly’ donated my streaming cold to him and he wasn’t well enough to join me.   I had been to previous award ceremonies and knew it would be a good evening and so my daughter, Catherine, rushed back from London to be my plus one.   

The elephant of the evening was of course, Parkinson’s Disease (PD), which, as usual, was intent on trying to disrupt my enjoyment.  Regular readers will know that PD raises its ugly head at random times during the day.  It’s first target was the journey to the venue, which was too short for a taxi, but, as it turned out, too long for me. 

I learnt a while ago that ‘time’ is something which PD hates.  That is given enough time I can usually achieve most things.  So I left over half an hour for what should have been a five minute walk.  I felt a small victory when we arrived at the venue on time.  

On arrival, desperate for a familiar face, I spotted young friend Jane in the crowd.  Pleased to see her I asked her in what capacity she was at the evening.   She explained to me that she was a competition winner.   She seemed to be following me, as she was also sitting next to me at the meal table.  PD robbed me of my sense of smell a while back, otherwise I might have have smelt a rat.  I found out later that there was no competition, and she was actually there as she had nominated me.

We had a lovely evening, seated with those who run Jackson Square shopping centre, who, it turned out, sponsored the award.  This was ironic as shopping is one of my dopamine inducing activities.  I was also able to ask my million dollar question when should I start queueing for the new TK Maxx store being built in Jackson Square.

After a great meal, during which the catering company seamlessly catered for my dairy and gluten intolerances, the award ceremony began.

We watched many brilliant short films with many deserving winners.  Then when Paul Winspear announced the penultimate category, Person of Courage, everything went a bit odd.  I heard that someone named ‘Julie Walker’ had won.   It took me a second to realise, that was me.  What was the first thing which happened when all eyes were on me?  PD decided to try and show off and pull my mouth about so I looked like an odd gurning person.

Paul gave a lovely speech, over some photographs of me from the six years I have been writing for the Indie.  I went up after the speech and accepted flowers and a lovely, glass award which for damage limitation David carried.  During the photographs I had another small victory, managing to overpower PD, forcing the odd gurn into a half decent smile for the camera.

Thank you to Paul Winspear for his lovely words, Jane for the nomination, the management of Jackson Square for sponsoring the award,  Catherine for being super-sub, David for being Paul’s glamorous assistant and for the lamination.  Also thank you to everyone at the Indie for their unwavering support in publishing my waffle each week. It still amazes me that a middle aged woman with no journalism experience is still let loose on a page of the local paper.    

144. One hundred and forty four

Just 36 away from the full monty.

I’ve written 75 column for the ole paper of news … 31 are on line here

https://www.bishopsstortfordindependent.co.uk/search/?q=Parkinality

I have joined the core group who are organising world Parkinson’s day for Parkinson’s UK.

And I have mislaid my sense of humour. What on earth is that sentence doing ‘all making sense and the like’. Where has the wittiness gone, the analogies, the jokes, jests, and Jessie’s. Is it under the table, or on the floor, or has it rolled out of the door …

Well I think an ode or several are called for, ‘cooee cum by’ :

PD 

We might shuffle and shake, whisper and whine

About this called PD, it’s with us all of the time

We get some brief respite, every now and then

When we briefly forget, until it returns again

We want to raise awareness, remove the stigma and fear

On World Parkinson’s day, 11th April each year

We are informing, we’re not making a fuss

Please take a minute, to think about us

We are a person living in fear

On the inside, we are the same as last year

So don’t judge this book by it’s cover, think about what you can do 

To spread awareness, to light up the world blue

Lumbered

I was lumbered with this flaming disease at 44 years young

I decided straight away I didn’t want it to spoil my fun

I spend my time raising awareness, I write about what its like being me

I write a blog and a newspaper column, which I call Parkinality

I don’t want sympathy, I try not to complain

I don’t want people tilting their heads, thinking ‘Isn’t it a shame’

World Parkinson’s Day is important to us

It is a day when we can all share why we are unreliable and unpredictable

It is important to make people aware

So don’t judge this book by it’s cover, on the inside I am still me

To us every day is World Parkinson’s Day

And I am still trying to find a rhyme for degenerative neurological disease

Under the table and rolled out of the door and under a bush, and now my poor meatball is nothing but mush

143. And Breathe

So here I am a hybrid human … this is not how it should be. I am quite down atm. Infection in my bonce, emergency operation 6 weeks of antibiotics, which are interfering with my PD medication. But at least i have. Hope …

Cope

Wondering

Waiting to see

How you will cope 

Without me

Without me you struggle

Without me you fear

The future unknown

You listen but don’t hear

You look but don’t see

You touch but don’t feel

Without me 

Life doesn’t feel real

Taken for granted

Overlooked ignored

Without me 

Life is a void

You think I’ve gone

Left for good

I am still here

Simply take a look

Patiently waiting 

For the time

You check your pockets

I check mine

Amongst the fluff 

And sticky boiled sweets

You’ll find me

‘Hi, I’m Hope happy to help’ 

Open your eyes

Take a look

Reaching out my hand

Feeling your fear

You’re never alone

I’m always here

142. I am now a hybrid human

sorry with knobs on. You don’t even get a chocolate hob nob for being a long standing reader of la blog. I don’t even tell you when I’ve had the operation. Well I have and here are the newspaper columns to elaborate on the goings on …

62. Diagnosis is like a concrete boulder being slung into a peaceful stream  

Reassuringly, I could still wiggle my nose and was still 5’8″ tall the day after being diagnosed with Parkinson’s Disease (PD).  My PD nurse was trying to be positive by saying that nothing changed when I was diagnosed.  After months of medical appointments, with what seemed like unconnected symptoms, I no longer felt like a hypochondriac; this ‘thing’ had a name,

The impact of a Parkinson’s diagnosis is like a concrete boulder being slung into a peaceful stream.  The Wise-ish man, in one of his Wise moments, said; ‘There is more than one victim’.  The initial impact causing ripples affecting others; my children now had a mother with Parkinson’s, my parents a daughter with Parkinson’s, and my friends a friend with Parkinson’s.

Why do I write?

I am often asked why I write.  It helps me to work things through, whether writing about a bad experience or attempting to turn a stressful situation into an amusing anecdote for the column.   I hope it also raises awareness, understanding and empathy, so that others living with PD and their families feel less alone.  If writing ever causes me stress, then I will stop.

Turning stress on its head 

When PD is kicking off I often attempt to see the funny side of a difficult situation.  

For example; I arrived for an MRI scan stressed.   Walking was difficult and I was switching ‘off’.  I was helped into the scanner by two nurses.  About an hour later the nurses returned to help me.  I was fairly confident I was now switched ‘on’ and I was feeling mischievous.  The nurses braced themselves to help me, I hopped off of the table and strode towards the door announcing ‘Cured!’.  I did go back and explain. 

Dispelling stereotypes 

If the Aliens ever complete their report ‘The A to Zee of observations of Life on Planet Earth’, sandwiched between, Octagons (eight uses for eight sided shapes) and before Queen (bees and the band), there is every possibility you could find the following stereotypical definition.  Parkinson’s Disease is a (currently) incurable degenerative neurological condition affecting older men with a tremor.

If you are shouting at the page ‘Parkinson’s Disease is not just a tremor and that Parkinality bird is not an OAP’, thank you, some awareness has reached you.

To Inform

Exercise is important for everyone’s mental and physical health.  It is also essential in the management of PD.   Like most people I need motivation to exercise and, with the increasing cost of petrol and pancakes, gym membership is expensive.

Everyone Active is currently offering free membership to everyone living with PD, all you need is a letter confirming diagnosis.  They are also offering free membership for a carer/friend to join you by being linked to your card.  As an added incentive membership includes a discount in the cafe.

The support group now meets monthly at the Grange Paddocks cafe, where they also hold Nordic walking classes.  Clock cricket, which at £3 for an hour session, is held weekly.  It is played seated, is good fun and is accessible to all.  Relaxed swimming and table tennis are also available.  Email Claire Uwins for more information about all these activities   claire.uwins@mac.com .

Parkinson’s UK Charity 

Parkinson’s UK are a charity offering vital support through their helpline and website.  They also campaign on behalf of those living with PD.  For example for free prescription charges and the ‘get it on time’ campaign about medication – read more about them here. 

https://www.parkinsons.org.uk/news/prescription-charges-england-frozen.

https://www.parkinsons.org.uk/get-involved/get-it-time

The ripples from that diagnosis boulder have reached my daughter’s boyfriend.  He is running the London marathon to fundraise for Parkinson’s UK.  As he says in his just giving page, he has ‘been able to see first-hand the impact Parkinson’s can have on someone and those around them’.

Thank you to him for undertaking this huge challenge.  Although I’d much rather PD was cured and he could use his training time to eat snickers.   But it isn’t and he isn’t.Parkinson’s UK rely on fundraising to support their work.  Here is the link to his Just Giving Page.  Please, donate if you are able, and share the link to create your own ripples of awareness (other chocolate bars are available).

https://www.justgiving.com/fundraising/callum-jolly1.

Published : June 2022

And now what you have all been waiting for … the BRAIN OPERATION

63. In and out of hospital for an eight hour brain op in 33 hours

I am always honest in my writing but I usually wrap honesty up in an analogy,  it was time to cut to the chase.*

I was given a new date for my operation straight away.   This time I didn’t tell many people.    I had got myself so worked up in May attempting to prepare for every eventuality, that in June I was in denial.  I couldn’t take the stress of being canceled again.  So the realisation that the op was in two days time was a huge shock.

Emotions were seeping out of every orifice.  I turned to those who I knew would be there in times of stress, who I knew would listen without judging and who would guide through my complex emotional roller-coasting maze. The Samaritan’s are always there 24/7 to guide you through difficult times.  They didn’t tell me what to do they ‘just’ listened.

321, I was back in the room and people were shouting at me to wake up.

Prior to going into theatre the risks  of undergoing brain surgery had been explained to me. This was major.  It wasn’t fiddling round with an ingrowing toenail (apologises to any toenail fiddlers).  It was eight hours of surgery on my brain.  A lost foot would be inconvenient, a lost head a slightly more serious dilemma,  On the other hand to me personally it was eight hours of unconsciousness, of nothingness.  For all I knew they were carving an intricate representation of my foot in a cornfield. They certainly had time to.

So what had happened over those eight long hours?  In my best Lloyd Grossman voice; ‘The clues were there’.   I had had the longest shortest haircut.  When  I went into surgery I had a space cadet hair cut, when I came out, some eight hours later by the Gregorian calendar, I had a space shave.  The surgeon had to shave my head in theatre to lower the risk of infection.  

Those eight hours had disappeared from my known universe.  I knew a frame had been clamped to my head because my scalp looked like an alien space ship had landed leaving red dots on my head.  Then someone had neatly blanket stitched my head neck and chest.   I didn’t feel or remember a thing.

In the recovery area the medical professional who was charged with looking after me; where ‘looking after’ meant laughing at my jokes.  He must have wondered why he had gone through years of med school to be stuck with guarding a mad woman,     In my words, ‘I was testing out my personality on him’, to make sure my brain worked and I hadn’t lost my sense of humour.  Oh dear.  It wasn’t great.  To those (un)lucky enough to get a garbled message from me, sorry.  To those I didn’t contact please be grateful,  I was keen to note down some of my classic comedy lines, but fortunately for you I had difficulty operating my phone, 

I was finally wheeled up to the ward after about four hours recovering in recovery.  Alice was the lovely nurse who looked after me that first night, who was there when I cried and when I asked for the twentieth time the exact location of my stitches I was so frightened of knocking them.  

Alice was also the lovely lady who showed me my head. I did consider drawing hares on my, I assumed square head, as at a distance they would look like rabbits, or even vice versa.  But actually my head was, spherical and devoid of lapins.  My selection of scarves and hats were hot and uncomfortable and so my head and scars have been mainly uncovered.  

I’d like to apologise to all those I have scared with my alien head shave.  I was released back into society the next day, so 33 hours after being admitted, 8 hours of which were in theatre.   Unbelievable I know, but there are no pain receptors in the brain so the pain was on the outside of my bonce, a couple of paracetamols and I was fine.  So tis done … and so what is the effect?  Like all the best cliff hangers you must watch this space as I will be switched on in August 2022.   

Watch this space

Published : July 2022

64. Preparing for the bit switch on with head fairy’s help 

Scarves, to cover my post operative scars, turned out to be like an apple pie; hot and difficult to tie stylishly on my head.   I hope that anyone who saw me remembered not to judge this book by its cover.  Despite my scarred and shaved head, I can assure everyone that I’m not about to cause an affray.

Whilst asleep in surgery, the Head Fairy left two boxes of equipment and instructions in preparation for the switch on.  People have asked what I mean by being ‘switched on’?  It is literally that; I have a rechargeable handset which my consultant will connect by blue tooth to the battery pack under the skin on my chest, and I will be switched on.  Once switched on and programmed I will be able to adjust the settings in order to control the electrodes in my brain.

As with everything Parkinson’s programming is not an exact science.  There is no blood test to monitor how my body is responding.  It will depend on me articulating to my consultant how my symptoms, hopefully, change and evolve when I adjust the machine and my medication.  So programming is likely to take several visits.  

I will be seeing my consultant in August to give my brain time to recover from the operation.  I’d been told that the post operative swelling sometimes has a positive effect on symptoms prior to switch on, but that as the swelling goes down any affect is likely to reduce (I don’t know why either).

At time of writing, I’ve had a couple of weeks free from debilitating Dystonia (involuntary twisting and clenching of muscles).  Dystonia is a disease in it’s own right which I happen to have as well.   I’m not pernickety, if DBS wants to get rid of other ‘annoyances’, I can provide a list.  Post op I also needed to reduce my medication very slightly.  As with all positives there has to be a negative I seem to have developed an intermittent, but extraordinary, tremor in my left hand.  Medication is now back to pre op levels and the Dystonia has returned.   ‘Insert preferred expletive’.  I must remember to remain positive.

To add complications to the insult which is PD, regular readers will be aware that I also live with Crohn’s Disease.  The fortnightly injections which manage my Crohn’s by suppressing my immune system had to be paused prior to the brain surgery.  My body needed every bit of immunity to fight any risk of infection from the operation.  The Crohns, briefly released from the constraints of medication, had started to kick off.   I am now back on the injections and reining back in the Crohns.  

To be absolutely fair this column should alternate between being called Parkinality and Crohnsinality.  However a record of the frequency and consistency of my poo does not have the same opportunities for humour as will she/won’t she be able to walk across the room – okay maybe it does.  

On Saturday my head had another outing, this time sensibly covered by a hat to protect my scalp from the sun.  It was the Stortford Heroes concert on Sworders field.  Very well organised, we took advantage of the offer of extra assistance.  They allowed us to drive into the field, where we were looked after by the brilliant volunteers.  It was an opportunity for my youngest daughter and I to groove to The Hoosiers which we had watched in almost the same spot ten years ago at Cazfest.  

The recent high temperatures played havoc with my Parkinson’s medication and my symptoms went haywire.  It is important for everyone to stay out of the sun and hydrated.  Here is a link to some information from Parkinson’s UK.  

https://www.parkinsons.org.uk/information-and-support/keeping-cool-summer

PS

I have written before about there being more than one victim in a Parkinson’s diagnosis.  There is also more than one victim in a DBS procedure.     

Thank you in particular to my daughters who have been amazing supporting me through all the ups and downs of living with PD.

Thank you also to the wise ish man for his patience and wise moments, supporting me when I am a particularly Paranoid, soon to be, Android.

Published August 2022

65. Lifting the lid on the day Lavinia got some support

Lavinia was in a state of flux,  She had been doing her best for 10 years attempting to manage deteriorating Parkinson’s Disease (PD); organising, sorting and dispensing medication as it arrived in the brain. 

After years of the same old routine, where as PD deteriorated, medication was increased, 27 June 2022 was a date etched on her mind.  This was the day of the brain surgery, when Lavinia’s ‘brain office’ was invaded, and her faux cheese plants replaced with electrodes.   Six weeks after brain surgery the rods were switched on.  As they glowed, a delivery of reduced medication dropped into Lavinia’s brain office.  Lavinia was now flummoxed, she was working with less medication, in conjunction with rods controlled by an outside force.  This was going to take some getting used to.

Confused?  

Anyone else imagine there are tiny people in their body working hard to keep you burping and breathing?  Just me then.  Allow me to introduce, Lavinia, my brain operative, who helps me make sense of  the copious amounts of medication I take.

Ten years ago I had gone from not even thinking a paracetamol would work, to having to trust and rely on medication to help me brush my teeth and put on my coat.  With long term medication use, the associated side effects and the medication’s unreliability with food absorption, PD was becoming increasingly difficult to manage with medication alone.   Hence the introduction of Deep brain stimulation (DBS) implanting rods deep into my brain, creating an alternative method of managing PD.

If Lavinia is confusing you, and you prefer your information unencumbered by analogies, then here is my attempt at bullet points to describe what happened when I was switched on.  I have been waiting for this moment for so long, I am (almost) lost for words.

Firstly allow me to clarify to everyone who has asked;  it wasn’t a Z list soap star, it was an A grade neurologist who switched me on. 

  • I arrived at the appointment, virtually unmedicated, in a wheelchair.
  • My consultant logged onto the device in my brain on his laptop.  
  • He waggled my left hand and asked me to wave with my right hand.
  • He altered the settings of the electrodes on his laptop until my left hand waggled satisfactorily – not too floppy, not too firm.
  • He then swapped to my right side, connecting his laptop to the rods in my brain. 
  • He adjusted the rods as he waggled my right hand and asked me to wave with my left hand.
  • As he altered the machine my vision ‘went weird’ (not a medical term) and I felt nauseous.
  • He changed the electrode settings until the hand waggling and hand waving was satisfactory (and I stopped feeling sick).
  • I was able to walk on limited meds and the machine set to low levels of stimulation.

I was told to take one tablet and I returned after an hour to see how I was coping.  On the advice of my neurologist my medication has now been reduced and the settings on my DBS machine set.  I will return in a month to see how I am getting on.

It is not an exact science and it is only through trial and error, my Neurologist getting to know my brain and me articulating how I am feeling between  appointments.  After all over a month, I spend about half an hour with my neurologist, the other 743.5 hours I manage PD alone.

So what has happened?    I do not have a big switch on my head nor flashing lights announcing I am switched on or off, so the unaware might not realise anything has changed.  In the past if you have bumped into me by the bin store looking tip top ish, it is likely I have chosen to use my brief ‘on’ time to put the rubbish out.  I hope that the introduction of DBS and the reduction of the medication will, not only, mean I can put the rubbish out whenever I wish, but I can then choose to skip into town to buy more bin liners.

Published August 2022

66. Spill free bar visit the aim with an order of positivity

It is now nine weeks since the DBS operation (Deep Brain Stimulation), when, during 8 hours of brain surgery, electrodes were implanted deep into my brain to help control my Parkinson’s (PD).   I have now been switched on and had the initial programming.   My positivity is being tested.   I’d looked forward to this moment for years.  I’d imagined that after having DBS surgery and being programmed, I would excitedly announce to the world, that the change in me was miraculous.   I imagined proudly proclaiming that I was now able to, amongst many other things, immediately return to tennis, brush my teeth at the traditional times, and button and re button my cardi with the fiddly buttons, as many times as I wanted to.

However things are not perfect and I must remember that this is neither a cure nor a quick fix.  The Wise-ish man had the surgery seven years ago and he is constantly reassuring me that it could take several visits to the Neurologist to programme the device to optimum levels. Despite this I am an impatient patient, but for my and the Wise-ish man’s sanity I must concentrate on the positives.

Morning races round the kitchen have been cancelled as I haven’t needed to use the wheelchair in the house since the machine was switched on.   I have not had full blown dystonia (involuntary muscle spasms) nor dyskinesia since I was switched on.  Much to the chagrin of folically  challenged men, my hair is growing back quickly and thickly.

A major positive is that since switch on day, when the rods in my brain were set to low levels of stimulation by my Neurologist, and, under his advice, I reduced my medication by seven tablets, the move to becoming a hybrid human has been seamless.   From a practical point of view I cannot ‘feel’ where the control is coming from, tablets via the stomach, or electrodes directly into the brain.  Credit must go to Lavinia, my (imaginary) brain operative, who has coped well, so far, with the transition to managing my PD with medication and machine.  

An imaginary brain operative, may seem silly to those with a sensible head on their shoulders.  However, the combination of being diagnosed with a (currently) incurable degenerative neurological condition at the age of 44 and having to come to terms with relying on taking medication for life understandably proved difficult to come to terms with. 

Over the years whenever a new type of medication was introduced, I would feel awful.   I would take yet more medication in the form of anti sickness tablets for a couple of weeks, until my body got used to the new type of PD tablet. Imagining that Lavinia was running around my brain in a state of flux making me feel dizzy sick, whilst she worked out what to do with the new medication, helped me.  Delegating the management of the condition to someone else, albeit an imaginary person, went a tiny way to relieving some of the stress.  However, even an imaginary friend has her limitations.  I am responsible for ensuring I have a supply of medication in the house, and that my handset and power pack are always charged up,

Negative points are briefly listed below, so that I don’t dwell on them:

I have been getting fascial dystonia when I am stressed.

I am still switching on and off with no warning.

I am still freezing.

I have developed a tremor in my left arm since the operation.

My hair is growing back grey and not a beautiful brunette.

I must listen to the Wise-ish man, relax and allow my body and brain time to recover from, what was a major operation.  I go back in a couple of weeks to be programmed again, and I will report back.  Hopefully then I will need to brush my hair and will be able to carry a pint of Guinness and a gin and water back from the bar without spilling a drop.   

Published September 2022

So that’s the story (if only it were only a story, and not real life), so far.

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