45. Roll Over Dystonia

Okay, another new word …. Dystonia.  Let’s see if Wikipedia knows this one …

‘Dystonia is a neurological movement disorder syndrome in which sustained or repetitive muscle contractions result in twisting and repetitive movements or abnormal fixed postures.  The movements may resemble a tremor’.

Yep, that’s about right.

Dystonia is something that anyone can suffer from (I know we try and not use the word ‘suffer’ for it’s negative connotations, but in some cases it is necessary).   It is a disorder in it’s own right.  People living with PD can also get it as part of PD.

Aside : great, now I get disorders within disorders –  which to be honest is unsmashing.

After five years of new symptoms appearing, I have found that the introduction of a new PD symptom seem to take the following course :

  • A slight acknowledgement of my body whispering a symptom, blink and I missed it.
  • A feeling of ‘flipping heck, could this be something new?’
  • Then gradually the new symptom getting more frequent and more aggravating.
  • A feeling of, to be honest, sometimes panic, and usually tears.
  • I then try and turn it round into a challenge, ‘how am I going to deal with this new Game Show round?’
  • I hopefully find a coping strategy.
  • A few months later it is a hilarious anecdote.

Time is a great humouriser ….

A bit like saying :

  • 1970s : (this was really not funny at the time, no sniggering please) : At primary school, everyone chatting about a new television show I hadn’t been allowed to watch.  To stop me going further down the ‘coolness ladder’, I vaguely gave the impression I knew what everyone was on about.  Playtime – and we did what it said on the tin, ‘we played’.  Everyone was set to ‘play’ Charlie’s Angels, a new cool American show about sassy flicky haired crime fighting girls.  I couldn’t quite believe it when I was being asked to be the main part – it was a sure fire bet that Charlie was a great part (no sniggering).. I couldn’t believe it  …  I was brought down to earth with a bump once the game began.   Think about it, if it needs explanation ask someone over 50
  • 2017 : hilarious anecdote in my disease diary, okay now you can laugh.

So, just to remind you, I can find no humour in this at the moment.

I have been getting dystonia in my left foot for a while. As typing a bit twaddley atm a few bullet points :

Starts without warnng
Whilst out and about
Left foot when it started
Toes curl and clench
Then foot turns and twists
All involuntary
Doesn’t hurt, but toes and foot twist harder and harder
Unable to walk on it, in fact can barely stand
Legs still bend and swinging

Recent twaddley developments :

Started happening in right foot as well.
The other morning started feeling it in my foot before I got up.

Dystonia has been challenging me for a while and frustratingly trying to think of a way of cracking this new Game Show Round.
The outcome is not being able to walk, however it is not a rhythm thing, the usual music tricks didn’t work.   Remember it is a brain problem, rather than a physical problem.

Then one day :

Dystonia in left foot struck on way out one evening
Flipping heck (stronger expletive used).
Then started going in right foot
This was serious …
Okay stopped walking, the ususal music trick doesn’t work so I thought hang on a minute singing???

So put my headphones on with a tune from a suntanned 80s double act who asked everyone to Choose. Life, and sang at the top of my voice.
Feet unlocked instantly.  This surprised me, but I didn’t flinch, or pause, I carried on singing and ran to my destination.

Ho-flipping ray

PS : I also get Dystonia in my face at times of extreme stress …

44. The 2.53am Ode

Okay, it is 2.53am – yes PD disrupts sleep I’m afraid.  About to take some meds, but in the meantime wrote another Ode.  Will be interesting to see what it reads like in the cold light of day ….

 

Lydia Smithers was the girl of Ralph’s dreams
She was beautiful and sold ice creams
‘Cornet or cup’ she would always say
As she whirled the ice cream in her beautiful way

Ralph passed by her van every day
To buy two ice creams, he gave one away
He went out of his way by over a mile
Just for a glimpse of her beautiful smile

The extra ice cream was for the last in the queue
Who from past observations he always knew
When the van drove away, there would always be
One person left, sad, and ice cream free

One Sunday Lydia’s dad took her to one side
He had something to say before he died
He said, look after the business and make him proud
Sell ice creams and play the music loud

After he passed away, come rain or shine
Lydia sold ice creams, but gave me mine
She no longer asked for any money from me
For the ice cream and flake which was 99 p

When I asked her why I didn’t pay
She told me about the very day
When I had come to the aid of her dad in the street
When he staggered and PD whipped him off of his feet

She said, I was a lovely man
Who stopped and helped beside the van
Where her dad sold ice creams every day
Whilst others turned and walked way

43. The Grovelling Ode

Ip dip sky blue
Which cause should they donate to
Should it be ‘save the emigrating cats’
To be honest I am not sure about that
Should it be ‘save the big old barn’
Frankly, that would be a cause for alarm

A group with money, a committee with cash
A minister with the authority to redistribute cash
In the office, in government or even in the park
I don’t really care, as long as they start
To work harder than they are to find a cure
As I sit waiting, ready and demure

  • Awareness is key
  • Awareness of PD
  • Awareness of me

Yes it’s a time for selfishness
Please cure me first*

*obviously that is just for creative affect.  Please cure, not just me, everyone else with PD too per lease

Janet Bric a Brac
6 January 2018

42. ‘Not that subject again’ Ode

I feel a tad tired, I feel extremely lazy
My eyesight is becoming more and more hazy
I am really not sure if I can walk in a straight line
I promise I am not like this all of the time
I’d rather you didn’t look, or stand and stare
Please don’t judge me – don’t you dare

It’s late and dark, things are not right
By the way, I don’t plan to stay up all of the night
My voice is still wobbly, I feel quite low
Emotions are high, I have you know
At the moment I’m wrecked and feel quite unwell                                                           I need some of that food which I can smell

Are my odes predictable, we need to discuss
Why am I always rhyming things with ‘fuss’
And ‘care’ and ‘stare’ and ‘unwell’ as well
I have noticed that I do seem to dwell
And write about one subject with ease
This one is different it’s about getting drunk

Please note : I’m Not

6 January 2018

Janet Bric a Brac

41. A Deep Ode

Tracey and Tone

Tony and Tracey worked hard at their life
He loved her, his darling trouble and strive
They wanted for nothing, but didn’t have much
They relied on each other, using each as a crutch
Supporting each other, through the austerity years
Coping, surviving, working through their fears

The life they wanted was a life full of hope
Children and a dog, and a house in Broadoak
A very different place from where they began
In a terraced house with a beat up white van
They knew they could do it, they worked night and day
So their dream life would become a reality

They didn’t go out, they saved every penny
A night out was a night in, in front of the telly
The sacrifices they made, they dug their heels in
To save for the future, the day their life would begin
A planner on the wall mapped out the way
They would save for tomorrow, rather than live for today

No-one suggested they should detour from the route
Apart from his mother – she was very astute
She gave them advice, they pushed her away
Ignoring her words, saying ‘please live for today’
She was older and wiser than Tracey and Tone
But all they saw was an interfering old crone

They worked too hard, put their life on hold
When they should have been ‘living’ – but they wouldn’t be told
The date their lives changed was the 19 September
The doctor’s words made it a date to remember
They were happy over the years don’t get me wrong
But now wished they had lived before PD came along

Janet Bric a Brac
5 January 2018

 

40. Rabbit Bedding

Never in a zillion years did I imagine I would ever reach the heady heights of becoming rabbit bedding.

To be honest in the hours I have spent cleaning out three rabbits over a period of 50 years, I had never thought I would imagine that rabbit bedding would be the ”heady height” of anything.

Ho hum … age is a great educator.

I have joined the ranks of royalty, A to Z list celebrities, chefs, coupons, lonely hearts, spot the ball (ask someone over 50).

Sorry if I have lost you, it may be clearer if, instead of ‘rabbit bedding’  I said ‘yesterday’s fish and chip paper’.

Okay enough of the, now standard, waffle.  Let me explain.

I have inadvertently and accidentally become a (sort of) Columnist Journalist Type Person, writing a column for the new local paper every two weeks on living with early onset PD.  Crickey the editor read my blog and asked me.

Flaming heck and lots of other age inappropriate expletives.

What an opportunity for awareness … crickey I really mustn’t mess this up.

I am now about to write my fourth column.  So far they have all been full page, with a colour photo, crickey again.

I now believe I have two different audiences, the blog and the newspaper.

The blog readers, I believe, fit into a retro Venn diagram.  One circle containing people already diagnosed with PD, the other circle people without PD.  And the overlap being people worried about symptoms and making an appointment to see a medical professional to get them looked at.  I am assuming, rightly or wrongly, that the majority of people reading this blog knows someone with PD, has PD, or has some earlier interest in PD.  I very much doubt there will be many people reading this who have decided to read a blog about a ‘disease’ ,  however funny it tries to be.

The newspaper column is putting Parkinson’s under the nose of people who know nothing at all about PD.  They may have purchased the paper for many reasons.  For example; to find out when to prune their petunias, or to find out what ‘monestrosity’ Mr Watkins at number 47 is attempting to get planning permission for.

The blog is preaching to the converted, the newspaper column is bringing in new awareness.

Now PD is a way of life.

It is a year since I started the blog.

So I am still here and will blog lots more.  But please bear with me, I have to establish this newspaper column as a reliable interesting informative humorous piece of writing which the readers want to read and the editor wants to continue printing.

So lots to be done … exciting times, onwards and upwards.

Happy New Year to everyone .

PS : If I have a choice, can I furnish the main living area, rather than the ‘wc’.  Thank you.

 

 

 

39. Every Cloud has a Silver Lining

I could get all deep and meaningful here and write :

‘If Parkinson’s were the cloud, the silver lining would be my friends’.

Which actually is true.  However, if I started being ‘deep and meaningful’ now, after eleven (yes, eleven) months of waffle, you may well yawn and start reading a proper blog about the weather.

Much more ‘blog appropriate’ would be the phrase from the advertisement for liquid hops, slightly amended :

‘If Parkinson’s did clouds ….’.

If Parkinson’s did clouds, the weather would be very unpredictable.  It may appear to be offering sunny weather, but could produce torrential rain, and vice versa.  Handbag planning would be impossible with a PD cloud.  Do I need my bag which will hold my umbrella.  Can I get away with a fabric bag, stylish but would be ruined in a rainstorm.  Alternatively do I need a sunhat and suncream.  So many first world problems.

Yesterday, 21 November 2017, was five years since I was diagnosed, and the blog to mark this anniversary was going to be a resoundingly positive one – an annoying ‘high five’ blog.

Starting with the title ‘Every cloud has a silver lining’.  The blog was going to say that although PD is rubbish, I would  list all the things I have achieved over the past five years.   But that would be like reading ‘Dave’, I have written lots about positivity and achievements.

However, the emotions I experienced on the five year anniversary were quite overwhelming.

Just a moment, stop head tilting.  Before you read this blog, can I just say, I am fine now.  To all my friends who helped me yesterday – thank you …

Yesterday, I cried.  Five years is a landmark in PD terms.  ‘They’ say ‘five good years’, and actually I wouldn’t go as far as saying ‘good’ but as I have said in previous posts they have certainly been a lot better than I thought they would be on diagnosis day

As I explained at the beginning, my initial feelings on diagnosis day were ‘relief’ that it had a name and someone believed me.   The words ‘incurable’ and ‘degenerative’ I momentarily pushed to the back of my mind.  I heard ‘managing the condition’, ‘medication to manage the symptoms’.  My consultant also assured me that I would have lots of support.

The day after my diagnosis I went into organisational mode.  Researching exercise classes, contacting my PD nurse, and generally making plans for my new life with PD.  I immediately saw it as a challenge and one which I needed to take control of sooner rather than later.

However, I also:

  • I walked up and down the stairs a lot.  In those early days after diagnosis I was imagining never seeing the upstairs of a house again.
  • Therefore, I started looking on the property pages for bungalows.
  • I booked a big holiday thinking that would be my last opportunity.
  • I thought that within a year I would be in a wheelchair.

However, today, I am relieved to say I would still be able to go on holiday to a twelfth floor holiday apartment in Benidorm

After five years, the only thing (and this is still not definite),  I will have to stop is driving.  When meds are managing the condition I am fine, but when they break through they are distracting.  So the car is locked away in the garage at the moment.

So, back to yesterday, I cried about the past five years and the future.  I rang the Samaritans.  The wonderful lady who answered the phone was amazing, she just listened for nearly an hour.

*******************

Shut your eyes for a moment (not if you are driving or operating heavy machinery).

Imagine a world where you could :

  • Get the best seats in the house at the theatre or music concert
  • Have people offering to help you at every turn
  • Have access to a huge toilet which rarely has a queue
  • Travel for free (or hugely discounted), and you can often take a friend
  • Are able to park almost anywhere free of charge for a long time

So the silver lining I see with PD :

Are my amazing friends – crickey I need you now more than ever.  Obviously I am still here for you all – as long as you don’t need driving somewhere, help with carrying things, or in fact help with anything useful.

  • Disabled seating areas at theatres/concerts
  • The walking stick seems to be a beacon, people smile and offer help
  • The radar key opens 10,000 huge disabled toilets
  • I now have a disabled bus pass, where I and a friend travel for free, and a train pass where I and a friend can travel hugely discounted.
  • The blue badge for parking

So the anniversary day itself was twaddle and not very happy.  The anniversary eve however.

Who would have thought that on the eve of the five year diagnosis I would be at a massive rock concert, being directed past the long queue to get in, sitting in the best seats (the disabled platform), using a huge toilet with no queues, with staff offering to help at every turn.

PD is twaddle, we know that.  If you have PD please make your life slightly less stressful by applying for the disabled badges/passes etc which will help you.  I was reluctant to begin with, and for a tiny minute I thought I shouldn’t tell people as it was embarrassing.  However, I am now embarrassed to tell people about the special treatment I get … well I wasn’t that embarrassed when watching the top band in the special seating.

I felt more like a VIP than a VDP

Onwards and upwards

PS : I have a feeling I may have inadvertently turned into Dave (the tv channel, not the bloke in the petrol station).  I think I may have repeated myself from a previous blog.  Ho hum.

 

 

 

 

 

 

 

 

 

 

 

 

 

38. Invisible Symptoms

I will subtitle this post in a ‘Friends’ style as : ‘The one that’s not particularly witty’.

As I’ve said before non motor symptoms are a major part of PD.  They are sometimes more difficult to deal with as they are invisible.   They include :

Apathy, Anxiety, Depression, Mood Swings, Constipation, Loss of Sense of Smell, Speech Slurring …. to name but 7 …

I have written less about these as they are more difficult to deal with.  Although dovetailing them may be interesting  … I could play Symptom Snap :

  • Constipation and Lack of Sense of Smell
  • Slurring Speech and Mood Swings
  • Apathy and Anxiety could may work as in ‘I can’t be bothered to be anxious’

Enough of that …

Neighbour warning … music about to be played very loudly and the Halloween sweets consumed.

 

 

 

 

 

37. Advanced Treatments

Small print :

Over the past five years I have gathered a lot of knowledge about PD, in fact it could be said (and it has been) that I am an ‘expert patient’.   However  I am very aware that a little knowledge can be a dangerous thing.  So I know some things, but not enough to be qualified to give advice.   In fact, the ‘next 5 years’ is probably going to be more complicated, and the PD symptoms and meds more bespoke.   So any worries please ask a medical professional, and please don’t change any medication/routines without checking.

Back to the blog :

You know about my love of words, you have experienced my made up words, waffle and meandering blogs.  However there are some ordinary words which become quite emotive when connected with PD.

A long overdue digression …

In my opinion the internet is smashing, but also simultaneously not smashing.  It goes without saying it is good for watching cats falling off of settees (obviously with the proviso that none were harmed in the making of the film – sofas are expensive).  But it does mean we don’t have an opportunity to delve into our minds and think things through, ‘how old the dodgy rockstar is really’, ‘how heavy is the world’, all that information (and more) is available at the swipe of a phone.

The same applies to the definition of words.  I could easily look up ordinary words on the internet and cut and paste the dictionary definition.  However some ordinary words when associated with an incurable degenerative neurological disease become quite emotive to me.  I won’t go as far as saying I am redefining the English language, Messrs Roget, Collins and English, have nothing to worry about.

  • ‘Advanced’

I, personally,  have always thought of Advanced as a positive word, for example :

Advanced training course : it is a step up from the Basic course.

Advanced guitar lessons : a high level for people who already have some basics and are heading for advanced pieces and improving their playing ability.

However ‘Advanced’ when applied to anything PD I see as a negative.

I have been referred to the Advanced treatments at my hospital.  So, presumably this means my condition is advancing.  Apparently my PD is complex, because of the combination of meds and symptoms.  As you would expect from me by now I am doing everything I can to seek information and support to help me deal with this.

(NB please be assured that a lot of the time the meds are keeping the symptoms under control and I am tipish topish (I do take a lot of meds).   However for parts of everyday the meds switch off randomly and then the symptoms breakthrough.  So smashing meds are doing what they should, but not smashing they switch off).

DBS (Deep Brain Stimulation) and Apomorphine are two advanced treatments, I could cut and paste definitions from the NHS website, but then you can do that yourself (I suggest you look them up and speak to medical professionals about them).

Below are my clumsy descriptions of two complex treatments (remember I am not a Neuroscientist)

Deep Brain Stimulation (DBS)

During a 7 hour operation, electrodes are inserted very carefully (obviously) and precisely into the brain.   One in each side of the brain, each of which are responsible for each side of the body (to make things more confusing the left side of the brain operates the right side of the body and visa versa).    These are controlled by a remote control which bluetoothes onto the battery, implanted under the skin in the chest.  A cable then runs up the neck to a junction box behind the ear and connected to the brain equipment.

The electrodes stimulate the part of the brain which is broken to encourage connections to send messages between brain and body to gain movement again.  Medication can usually be reduced.   I have seen people who are very debilitated by the condition and on high meds, have their meds reduced and an amazing affect on their physical condition.

Before any readers book themselves in for the op – just think for a moment a BRAIN OPERATION … mmm not to be taken lightly.  This treatment is not suitable for everyone, certain symptoms it will not help and the patient has to be put through lots of tests to ensure they are suitable.

Anyway ho hum, I am in the system and may be on the list. It may be on the cards in a few years time – watch this space.

  • Apomorphine

This can be in two forms – epi pen for emergencies, and constant stomach pump infusion for continuous infusion of the meds.

I realise now that the words ‘can’t walk’ is quite a difficult thing to understand.  The ‘I can’t walk’ problem which I have had before, when my legs won’t bend, I have actually learnt a few tricks to get out of and get walking again.  Including music and walking backwards.

However the dystonia I get in my foot is really debilitating, it has been in my left foot on and off for a while, but now my right foot is whispering this symptom.  It feels like my foot is being wrung out, it twists and contorts and the toes curl up and scrunch all of their own accord.  I can’t walk on it or bend my foot.  The epi pen should get me out of that with the injection of the new drug.  However, I am also researching non-drug ways of getting out of it as you will appreciate I would rather not take another med.

So advancing treatments for an advancing condition.  So thank goodness for those clever people.

Thank goodness, indeed.

  • A brief ode :

‘Drugs’ or ‘Meds’ which word would you use

When talking about tablets, which should I choose?

‘Meds’ is probably the best out of the two

The word ‘Drugs’ scares me and probably you

Sensibly I should say ‘I need my ‘Meds’, and be calm

But often people tilt their head and touch my arm

Much more mischievous, I am sure you will agree

Is shouting ‘I need drugs now’ at afternoon tea

The ladies who lunch all stop,  tut and stare

I ignore them and act like I don’t care

I then stand and attempt to cross the room

Before my drugs have kicked in – far too soon

I will stagger and shuffle and fall about

‘I need more drugs now’ I randomly shout

This little bit of fun amuses and helps me

Gets me through the day when I feel twaddle-y

 

 

 

 

 

 

 

 

 

 

36. The Next Five Years

Due to public demand (where the word ‘public’ means half a dozen people), I am continuing with the blog.

If you have just ‘switched on’, I should tell you that this is the start of the ‘next five years’ (ie years 5-?).  For the ‘first five years’ please scroll down the menu back to the first blogs, January 2017 onwards.   I would recommend you read the first blogs to get some background, rather than jumping straight into the ‘next five years’ which will be rubbishier and (dare I say it) scarier.

Disclaimer :

I have come to the conclusion that I have been dithering about continuing because the PD is gradually getting both different (positive) and worse (negative).   The blog posts may well become more difficult to write and read.

If you have been paying attention you will already know the rules about sympathy and head tilting.  Some of you, (you know who you are), have ignored this and have still ‘head tilted’.   I am confident, however, that most of you will have thought ‘she reads positive’ and thus avoided head tilting.  However, now is the time to forgive the head tilting and to start the next five years with a clean sheet.

I should warn you that I think the next five years may test even the most staunch ‘non head tilters’.    I am not being melodramatic, I have tried to prepare you for this.  I have slipped in the words ‘degenerative’ and ‘incurable’ into many of the blog posts.

I will be (even more) honest with you.  The ‘first five years’ have been okay ish to write and I have enjoyed writing most of it.  Even the walking twaddle, it is rubbish and upsetting, but actually rethinking walking, and walking backwards through Leicester Square with friends is actually quite amusing (ed : stop right there, some eye leakage did occur).   This compares with today’s problems, for example a recent incident when in the darkness in the high street, dystonia hit my foot and I couldn’t walk at all … I was with a friend, but still scared and cold in the pouring rain, I couldn’t walk at all, backwards, forwards, upwards, downwards or sideways.

Please don’t feel you have to continue reading.  In much the same way as I don’t believe you should force yourself to walk through the London dungeons (I didn’t), or through the glass shark tunnel at the aquarium (I didn’t), or to continue reading a really really long book that you hate (I didn’t).

When reading the following blog posts, please bear in mind I have a really supportive family and lots of very patient friends.  I am under a really brilliant medical team at a top hospital who are ‘on the case’.  I am involved in the charities which are a vital source of information and support.  I am also involved in the local support group.  So all in all it may be twaddle but I am dealing with the twaddle with fellow twaddlers, those who understand, those who don’t (but try to), and those clever people who are trying to understand and cure this flaming thing.

So the blog continues.  I will continue to attempt to communicate and raise awareness of living with an incurable degenerative neurological condition, with as much positivity and humour as I can gather in a bag of colour blind hedgehogs*

*Obviously this is not true (hedgehogs are probably not colour blind).

** Two points if you can name the tv show this is a (rough) quote from.