49. Yawn – not another night time ode

Sleep problems are another symptom : yawn (literally).  Wasn’t going to post this, but then thought I would.  This blog can’t be a laugh a minute …


My mind is awake, my body is asleep
Reached 4,453 sheep
Still no rest, no let up in this buzz
My brain is awake, yet it’s full of fuzz

I want to sleep, well I think I do
But my brain doesn’t seem to want to
My body is stiff, my arm is in pain
I just want to feel human again

The nights are long, the nights are low
I should have been asleep long ago
The day is bright, the day is cheery
Are we there yet, I want to say ‘nearly’

Why in this world of speed and light
Is the night so dark, it doesn’t seem right
The day works so unbelieveably well
So why does the night feel like hell

We make use of the day, of the light
Why do we waste the other 12 hours of night
The door closes at the end of the day
And is shut until the night slips away


Then this ode appeared …. (and no I can’t work out how to type in single line spacing with carriage returns, without doing bullet points.  What do you expect it is now 4.27am).

  • Stop moaning you silly old cow
  • What on earth are you moaning about now
  • Sleep deserts you, well hard luck to you
  • What are you expecting us to do
  • Just get on with it, stop harping on
  • Flaming heck, it’s another song


  • Others are awake, they really must be
  • It really can’t only be me
  • If that is true, which I am sure it is
  • We should all stop getting in a tiz
  • Just because it is dark, we shouldn’t stop
  • We must strike when opportunities knock
  • 1am coffee, 1.30am brunch
  • 2am art class, am I suggesting too much?
  • Football match at 3, studying at 4
  • That is the night I long for
  • We can then choose to wake or nap
  • At times to suit, what do you think about that?

Over and out …


48. Excuses Excuses

I used to be early – it was incredibly frustrating, no one was ready when I arrived.

Now I am always late – it is incredibly frustrating, everyone has left when I arrive.

My councillor, (not the political kind), has given me the following advice  :

Don’t say : ‘Sorry I’m Late’

Do say : ‘Thank you for waiting’

Making a negative into a positive statement.

However, whichever way you dress it up, I am late.

Pre PD, I used to plan to within an ‘enth of the day.  I would plan meals and life in advance, never a ‘ready meal’ (yes, I was quite annoying).

The unpredictability of Pd, and the non motor symptoms, including fatigue, apathy, lack of motivation and difficulty in multi tasking, all mean that ‘doing life’ and getting ‘ready for life’ takes a lot longer.

Living with PD has many excuses for why I might be late.

  • a) Lost my keys,
  • b) Lost my phone
  • c) Was choosing cheese (really – indecision is part of  PD, and ‘I did and I was’)
  • d) Putting jewellery on – fiddly clasps are a nightmare
  • e) On the telephone – I like to talk.
  • f) Untangling head phones (really)
  • g) Distracted – walking along the road.
  • h) Can’t be bothered – apathy (not laziness)
  • i) Really can’t be bothered or see a reason why I should go, nothing personal.
  • j) I am like an indecisive moth, flitting from one thing to another, especially prevalent when on a deadline, I know I’m late, but I’ll just ‘watch some paint dry’.
  • k) On the internet, still looking for the perfect handbag.
  • l) Staring into space.
  • m) Refreshing the Sale page on a shopping site, watching for more reductions on a blouse I have no intention of buying.
  • n) No motivation to do anything.
  • o) I have fallen asleep in my lunch (really).

oh yes and motor symptoms are twaddle and I am ‘off’ … e.g. walking

These non motor symptoms are NOT laziness …

So for ease (and mystery) I may say, ‘Thank you for waiting, please refer to (f) with a dollop of (j)’

Ho hum, must go and sharpen a carrot.

47. PD Warrior : Exercise

Exercise is really important for people living with Parkinson’s

Sometimes a boring sentence says it all.  I didn’t want to ‘joowsh’* up the sentence by adding a joke, just in case someone misunderstood and didn’t exercise.

*to joowsh, I joowsh, we joowsh, you joowsh

To reiterate :

If you are an exerciser, please continue to be an exerciser

If you are not an exerciser, please become an exerciser

Before I get heckled – I know that people are at different stages, have different symptoms/progression.  But even a teeny tiney amount of exercise must be possible for (almost) everyone, even a stretch of the upper tricpricales.

NB exercising does not always mean a marathon, or 1,000 squat thrusts a la Superstars, it can mean a brisk walk, or some seated exercise stretches.  Please consult a medical professional before exercising, you don’t want to add an injury to the insult that is PD.

Now is a time for an admission.  I used to incorporate exercise into every day but I have let exercise slip recently and (not sure if it is a coincidence) but things are getting more difficult.  And then a new symptom popped up which a weakness in my knees with zipping pain.

Weakness – a word that has worried me.  I haven’t had that before.

The original name for PD was The Shaking Palsy – shaking is self explanatory, palsy means weakness.

Everywhere I turn there is evidence that exercise is crucial in managing PD and I should see it as vital like taking medication.

On with the blog :

Pd Warrior is a new high intensity exercise class specifically for PD.  In an earlier blog, I wrote about going to the PD Warrior training course for Physios in London Town.  Well, we have finally found a local course.

Being (virtually) a non driver, and having a disabled bus pass (with carer pass), we got a free bus ride door to door.

Subsidised fee on the class – so doing well.

But then obviously we blew the budget on the cafe …

A circuit set up in a local leisure centre, overseen by an absolutely amazing, top notch, professional, yet friendly,  physio* (yes, the physio does read the blog), including :

  • Cycling
  • Rowing
  • Stepping  over low hurdles.
  • Boxing
  • Throwing a soft ball against a wall and catching it.
  • Throwing scarves in the air and catching.
  • Doing squats
  • Stretching a band

All seems quite ordinary and tame, however for maximum impact we needed to :

  • Use big movements
  • High intensity, pushing ourselves for a few minutes on each station
  • Incorporate multi tasking – for example naming alphabetical lists whilst exercising

It was brilliant, some bits more difficult than others.

Top tips :

  • When you are wearing boxing gloves, and your opponent is wearing ‘the hitting at’ boxing pads on their hands.    Look your opponent in the eye and … when the opponent starts to sweat, ramp it down a notch 😉

Thank you tout la monde

Over and out …





46. Support


I have written about support before, but I think it is such an important topic I am going to write about it again.

  • Everybody needs somebody
  • If you haven’t got it you won’t get it

Support is needed for many things:

  • emotional support
  • finding out about benefits, legal standing
  • finding other people with Parkinson’s
  • finding out about the symptoms/meds for Parkinson’s
  • finding out about research opportunities and support connected with them

I  haven’t felt alone since Diagnosis Day, five years ago.  This is partly due to a postcode lottery of PD nurse* and PD support in my local area – both of which have been great.  However, I do think it is also partly due (and I am blowing my own trumpet here) to me being very proactive in seeking out support.

I realise that not everyone wants to explain to the person next to them in the theatre that they are sitting next to someone with a degenerative disease (I have).  From my perspective this not only raises awareness, but also makes me feel a bit less self conscious of my squirming and tremoring arm in the theatre, rather then sitting there trying to hide it and not enjoying the show.

As this ‘thing’ advances I need support more than ever, it would be very easy to sink into a negative world.   I am aware that not everyone wants to write a public blog or give talks to raise awareness deal with PD.

*I no longer have a PD nurse … hope to get a new one soon…

However support comes in many guises … not many people want to shout ‘I have PD’ from the rooftops (not done that yet).  But there does appear to be something for (most) everyone.  Some people want a quiet coffee, some want a support group, everything is available, but it sometimes takes some research to find it.

Support lines are brilliant.  There are a few things I have found out when ringing support lines :

  • you do not have to know what you are ringing about
  • you do not have to have a plan of what to say
  • none of the support lines I have spoken to seem to have a time limit
  • you can say goodbye and put the phone down at any time (to be honest you don’t even have to say goodbye – the person on the other end of the phone has been trained not to be offended).
  • you do not have to be suicidal to ring the Samaritans


  • Support Lines :
  • Confidential (read their small print), can ring and just chat, no one needs to know.  There are various types, PD specific I have used on many occasions, but they are not 24 hour.
  • I will now mention the ‘S’ word which is available 24 hours a day.  I am obviously talking about the Samaritans, literally 2am and someone is there on the end of the phone, not judging, just listening.  I have rung them on several occasions as the nights can be very difficult.  And in fact just knowing there is someone there can make me feel calm and supported


  • Local support groups :
  • for emotional support and practical support in a safe environment.  To discuss and seek support from people who understand, ‘they get it, because they’ve got it’.


  • Medical professionals :
  • for medication support and treatments.   They are brilliant but their main concern is the bit of me that is broken, emotional support comes from elsewhere.


  • Charities :
  • source of lots of information and links to other help.


  • Citizens Advice :
  • this is obviously outside the ‘PD world’.  So don’t expect them to understand PD, ‘they haven’t got it, so they won’t get it’.  But they can give advice on many things, benefits etc.


So there is something for everyone, the most important thing is that people shouldn’t feel alone.  If you haven’t got the support you need speak to your GP, PD Nurse, Charities.

I have phoned the support lines, The Samaritans, am a member of the local support group, and have formed the infamous Dagenham Dancers (neither from Dagenham or strictly speaking Dancers).





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.