58. Sleep Update …

I have left it a few days before posting again … so that I can update you on my sleeping.

Spoke to my consultant again … and I am now trying the following night time regime.

Bedtime : Sinemet Plus

If wake in night : Madopar dispersible

If wake around 5am : Madopar dispersible

Start usual day meds around 7am


This seems to be working, ish – I am still waking in the night.  But getting to sleep and returning to sleep is much better.

So we will see …. ho hum Diddley dee

I won’t be posting many of these medication blogs – they are in my opinion too personal.

I have shown that everyone reacts to medication differently and has different symptoms.  Also that  tweaking meds a little bit can have a huge impact … so speak to a medical professional if you are having problems, don’t wait until the next appointment.  A small change can make a big difference.

Lecture over —- les

57. Sleep (the morning after …)

Important : read blogs 55 56 57 all together … important

A reminder – blogs 55 56 57 confirm that everyone is different – my response to the meds was different to some and the same as others with PD.  Speak to a medical professional before changing anything.

I am fine …

Read blogs 55 and 56 first …. otherwise this is not going to make sense (does it ever?)

Took a Madopar dispersible at round 6am, slept a bit, and then took my normal meds.

Crickey the night was twaddle

Sorry to subject you all to that. …. It is not like that all the time, that is the worst it has been.

As I warned the ‘next five years’ is getting difficult to write about, and read about.  But I have to write about the rubbish bits otherwise it is not an honest blog and whats the point of that.  Also one of my aims is to let people with PD know they are not alone with twaddle. – bad times are the worst times, especially during the night.

So the Madopar Controlled release at bedtime was not the miracle I was hoping for.  Just shows everyone is different.

I think the Madopar Controlled Release for some reason did nothing to help the PD.  So I was experiencing full on PD symptoms throughout the night.  Everything  kicked off to the extreme.   (now for some people Madopar controlled release will work – everyone is different).

I will go back to the Madopar dispersible at bedtime (doesn’t last long, but at least I got sleep).  That seemed to help, not perfect, but to be honest, it is never going to be.

I will also speak to my consultant and update him.

Everyone is an individual where PD is concerned – including symptoms and meds and progression etc etc.  Most important thing is communication, keep the consultant in the loop, don’t make it up or think you know more than the professionals – I know I don’t know everything I can only describe to the medical professionals how things affect me.  They can then offer their advice and help you out.

I will write this down as I will forget … and tell the consultant.

Onwards and upwards … still going strong …

Phew … and rest

Important : read blogs 55 56 57 all together … important


56. Sleep (not the return of…)

Important : read blogs 55 56 57 all together … important

please read in conjunction with blog 55. sleep

I am okay btw don’t panic just felt need to update …

this is real life pd not dressed up with humour I’m afraid

Flip flip flip

some rubbish time in morning and had to blog

took new med madopar controlled release expecting a miracle nights sleep and flip flip flip

no sleep …. no relief from pd and loads of symptoms kicking off in waves

freezing gait, muscle spasms, pain in legs, sweating hot, now dystonia


this is turning into a warts and all blog (no warts yet)

okay and will speak to medical professional later

new meds will wear off soon  – thats good

then I  can take my usual day ones


Important : read blogs 55 56 57 all together … important


55. Sleep

Important : read blogs 55, 56, 57 all together

Okay this is one of those posts that needs some small print :

This post has lots of references to medication in it … this always makes me a bit concerned – please DO NOT change anything without speaking to a medical professional.  You don’t want to ‘do yourself a mischief’.  I am not a medical professional, details may be inadvertently completely and utterly wrong.

Please don’t copy or do anything similar, because you WILL be different.  I am writing this to show that PD meds are not an exact science, they are very personal.  What works for one person, won’t for another and vice versa.

We are all different …. a bit like, a ‘Velour Duffle Gilet’ – I can wear it with aplomb … others will just look like a wally.

By all means read this blog post but then either :

  • Metaphorically screw it up into a ball and drop kick it into the waste basket*

*waste basket for those who are younger, in the ‘olden days’ we used to throw everything in the waste basket, unlike today when rubbish not only has to be sorted, but has to be washed up first.  Crickey, next we will be ironing rubbish (which at best is marvellous, at worst dangerous).

  • Take it with a pinch of salt and slice of lemon – just read and think ‘that’s a bit interesting I will speak to a medical professional”

PD doesn’t sleep, it doesn’t need a rest.  The meds manage PD, but the disease bubbles along in the background, when they work they are amazing.   However I know that meds will probably switch off at some point.  PD symptoms picking it’s moment to break through the medication.

I have only needed nighttime meds for the past few months.

Trying to manage PD whilst asleep is very difficult, because, lets face it I am asleep.  It tends to wake me up that’s when I know I need more meds, by then obviously PD is kicking off, so meds are a bit late.

When I wake up I am not able to move very much, yet my muscles are firing on and off.  Very uncomfortable and lets face it inconvenient, as I then have to find my tablets and take them.  So torch (to check taking correct tablet), meds and water must be nearby.

Sleeeeep Pleeeeeese :

I haven’t slept ‘traditionally’ really for the past few years and the past few weeks have been particularly bad.   When I say ‘traditionally’ I mean, within the socially acceptable hours of between 10.30pm-6am.   So very little sleep at night and dropping off in my lunch and whilst walking around a DIY shop – neither of which are, lets face it, socially acceptable,

Okay after a lot of research, and cross referencing I finally, MIGHT have a solution.

If you are having problems with meds/symptoms then please ring the helpline, GP or speak to your nurse or Consultant.

The following are MY PERSONAL findings :

Firstly for clarification.  Sinemet and Madopar are both the brand names for tablets which contain Levodopa (the gold star mediation).  The difference is that they use a different ‘carrying agent’ to change the Levodopa into dopamine in the body so that it can be used by the brain.  So they contain the same active ingredient, with the aim of having the same outcome, but use a different agent to get there.

Many consultants recommend using a Controlled Release of levopdopa at bedtime, as the idea is that this releases gradually throughout the night.

A brief explanation :

For clarification, brand names are the original version of the medication, made by the company which originally developed it.  After a period of time, generic versions can be produced by other organisations.

So for transparency:

Brand Name : Sinemet, known as Co-careldopa (includes Levodopa and Carbidopa)

Brand Name : Madopar, known as Co-beneldopa (includes Levaodpa and Benserazide)

Okay back to the blog :

Old night time regime of meds :

  • Half sinemet CR at bedtime
  • When woke in night, may take another half sinemet CR,
  • Then start daytime meds around 6.30am

A point worth noting as it is relevant : I have been using Madopar Dispersibles (instant release) for emergencies during the day and occasionally at night,

Every night for a while I have had virtually no sleep, couldn’t settle, pacing floor – written a lot of odes, but to be honest one can’t survive on odes alone.  Resulting in daytime lack of focus, but wide awake, but falling asleep suddenly.   But I started to notice that when I took a Madopar dispersible at night I went to sleep almost immediately – ho hum interesting and confusing.

After some research, talking to fellow people with Parkinson’s, looking on reputable sites, speaking to PD nurse and emailing consultant.

SOME people have found that the carrier agent with Sinemet keeps them awake.  SOME people have found that the carrier agent with Madopar makes them sleep.

DUH – for me – that makes sense.  So Sinemet during the day and Madopar at night!!!

But you MAY/WILL be different

New night time regime of meds, was advised to try as I already had some Madopar dispersible (which is an instant release medication)

  • Madopar dispersible at bedtime
  • When woke in night, may take another madopar dispersable
  • Then start daytime meds around 6.30am

A M A Z I N G – but not perfect obvs – but a huge improvement.  Got to sleep and woke took meds and went back to sleep.  Night a bit unsettled but SO much better.  During the day felt so much better, a bit tired (but in an ordinary way), but more focussed during the day

After talking to the PD nurse, I have discovered there is a Madopar CR (controlled release).  So have spoken to my consultant and I am going to try this at bedtime.  The idea is that this may last throughout the night as it releases gradually, the dispersible is instant and only lasts a short time.

So awaiting prescription and then will try that.

So the moral of this blog.  If things are rubbish … speak to your medical professional.  Don’t sit on your rubbishness until your next appointment.


important – blogs 55 56 and 57 must all be read together – that is important

54. ‘You won’t feel the benefit’ …

‘You won’t feel the benefit’

An annoying quote … I mean, helpful, phrase

‘You Won’t Feel the Benefit’ …. take your coat off when inside or you ‘won’t feel the benefit’ when you go outside again.

The British may be able to beat the eskimos’ number of words for snow :

  • Chilly
  • Freezing
  • Nippy
  • Frost Bite
  • Cripes its Cold
  • Nip in the Air
  • Freezing your Pants Off
  • Gosh, tally ho, you’ll catch your death
  • Icy
  • I am quite un-warm
  • Chill in the Air
  • Do your zip and buttons up on your coat
  • Weather for Arctic animals
  • Cold
  • Well, flaming heck it’s so cold
  • Take your coat off, or you won’t get the benefit when you go back outside
  • Be careful it’s slippy
  • Black ice
  • Snow flakes
  • Hat and gloves perlease
  • Hypothermia ….

Crickey oh riley, I had heard that ‘The Cold’ – deserving of capitalisation and quotes – was bad for Parkinson’s, but to be honest up until this winter I had thought people were making a fuss about nothing.

Previous winters, I would say :

‘A bit chilly, oooh put another jumper on’

This winter, has been more like :

‘*************%**** cold *****&*********( cold *******&****** cold %********’

Well, shiver me bits …. that’s cold.

I feel like the wind chill is slowing me down, I literally get cold to my bones.  Shiver, which when PD tremor joins in it is quite a sight, I get going like the clappers ?? My knees are slow at bending, and it is almost painful to walk.

So when I go out I am like an onion.  Not in scent, I hope.  Although I wouldn’t necessaily know as sense of smell is something else PD breaks …

An onion, i.e. layers, of thermals.

As Pd progresses, and as the ‘off’ times get more often and more twaddley, I set achievable ‘leaving the house’ targets …

  • Odd socks
  • One glove and one mitten
  • Veronica’s borrowed scarf
  • etc etc

And then if I do manage a pair of socks for example, hoorah!

To be honest ‘leaving the house’ now takes ages.  Trying to find everything, and actually picking a time when meds are ‘on’.  It’s not uncommon for me to think, right off out now.  Spend all my ‘on’ time looking for stuff and getting ready, to switch ‘off’ as about to leave.


LES Soon






53. The ‘Trailer’ Blog


A bit like a trailer for a rubbish film, play some rubbish music whilst you read this and drop melted cheese on your new trousers, whilst putting on your top hat to annoy the annoying person sitting behind you.

I have so much to write about at the moment …

  • Meds changing
  • New clubs/hobbies
  • New symptoms
  • Sleep
  • Cold
  • Night time

Etc Etc

Whoopee PD is changing – new material … woop flipping ee

Oh and I am trying to reorganise the blog posts so they are in categories and easier to find, so the menu page is in a bit of an ‘Admin Flux’ atm – please bear with.

So lots being written, subscribe if you wish …



52. An Important Ode : No Head Tilting

Sometimes I feel like I am on the Truman Show …

I have always said this blog will not include photographs of my lunch. Now I have just realised in a (probably) psychoanalytic (amateur) way, that not including ‘photographs of my lunch’ could mean avoiding writing about things which are not so easy to write about.

Now this is getting difficult, in order to talk about PD properly I need to dig deeper.

Anyone can make motor symptoms into a funny ditty –

  • There was a middle aged lady from Nemor
  • Who had a bit of a tremor
  • She walked a bit dodgy
  • Her knees were a bit wodgey
  • And she was awful at limericks

However, the invisible, non motor symptoms, are more difficult to write about.

  • There was an old lady from donstapation … and so on and so forth

I may appear to be always outgoing, positive and proactive, but that is interspersed with some very low moments.  You may see me dancing on a Saturday night (I do), and then hardly able to walk once the music stops (I can’t).  Those kind of switching of symptoms can be difficult to cope with.

The non motor symptoms, including,  lack of motivation, apathy, depression, crying for no reason, insomnia (and to add insult to injury, consitpation) are all kicking off as well.

Sleeping is so difficult at the moment.

Just thought I’d throw a curve ball ( now is that a boomerang?), and include a very very long ode.

I started this blog to try and explain to friends and relatives, i.e. people without PD, about the symptoms and living with the condition.

The blog has moved on since those early days.   My audience (hark at me, I only ever thought I’d be part of an audience), has expanded and now includes people with PD.

So with this in mind, there will be more … day to day stuff about dealing with PD.

Please no emojis … or head tilting

A rambling ode … written by ‘Janet’

Janet always worried about this and that
About washing up and feeding the cat
Janet was efficient, she got stuff done
Never a ready meal, ironing always done
She helped her friends and ran the home
And was always there at the end of the phone

Five years ago she got an unwanted gift
Which has gradually changed the way she lives
She no longer worries about washing up and feeding the cat
Or about ironing; she never gets round to that
She has lost her spirit, she has lost her drive
She used to get things done, of perfection she would strive

Today, she’s always busy, but things are never done
She never has time – is she too busy having fun?
Fun, that’s an odd word, I bet you’re confused
Fun, you never expected that word to be used
Janet is often seen out on the town
Dancing, singing, and not being down

However life for Janet is often pretty crap
But she tries to keep going and not dwell on that fact
PD has symptoms which could drive her up the wall
Even the meds have side affects, I won’t list them all
So many symptoms, affecting so much of her life
PD is trying to take over, take over her life

Pain, stress and insomnia too
Depression, fatigue, and going to the loo
Tremor, stiffness, rigidity, unable to walk
And probably one day she’ll be unable to talk
Compulsive, impulsive and hallucination
Flaming heck this really isn’t a jolly song

PD has it’s own agenda, it has it’s own rules
It does it’s own thing, it has it’s own tools
Janet never knows what PD is going to do
Will she be unable to walk when she needs the loo
Yes, this simple worry is one of many you see
Which preoccupy Janet’s mind, (enough of her wee)

One minute frozen, the next she is thawed
Sorry, a lot of you may now be bored
With Janet harping on about life with this thing
Well you can unsubscribe and just watch her dancing
And whilst you watch you can think to yourself
PD is not so bad, Janet is not on the shelf

But that’s not the real PD, that hides underneath
Is Janet smiling, or baring her teeth?
Janet asks you to stop and think today
Of how you would feel if PD came your way
Would you stay indoors, so as not to be seen
Or would you go out, dance and produce some dopamine

Janet has been living life to the extreme
Of taking an extra med. when she is going to be seen
Often living for today, forgetting about tomorrow
But then too soon tomorrow is filled with sorrow
Tiredness and apathy still strikes every day
As she tries to forget the disease, and make it go away

So Janet promises the rest of this blog
Will include the things people don’t like to speak of
That’s invisible symptoms, and when times are bad
She’s not always happy, sometimes she’s sad
She can’t be positive all of the time
But the blog will still be quirky and sometimes written in rhyme

Onwards and Upwards …

51. A Second ‘One off Daily Blog’ : Keeping it Real, the next instalment

Head tilt and judging free zone please (unless it is in a Mr Cowell BGT way)

small print : very tired atm, night-time a long one, now trying to keep going.

This is a ‘keeping it real blog’

Flaming heck … this will be in bullet points for speed and dexterity problems :

No sleep last night …

Okay now switching to the miracle of rhyme :

Thursday night I had no sleep and PD was crap
Friday was a day of rubbishness – I expected that
It is what happened next which I now need to write
As I finished another day of flipping PD fight

When the evening began, after the bad Friday day
After the Thursday night, when sleep didn’t come my way
What do you think I did, after the day of PD fight
A sensible person would have had an early night

Well, on Friday evening at 9pm
Should I go out, or should I stay in
PD brings with it a particular mindset
Of making the most of every minute

So I went out and met some friends
And watched a band, yes, I’ll say it again
I actually went out, I didn’t have an early night
And I danced and forgot the days fight

Music is a miracle, I’ve said it before
(sorry if I’m becoming even more of a bore)
When I went out, I was struggling, as PD broke through
But undeterred I went out and met friends old and new

The music and chat and the fun that I had
Turned things around – what do you think about that
I laughed and I danced and had a good time
It all came together and the meds worked just fine

So this morning I’m tired and dexterity is bad
But today I am not feeling sad
A good evening was had by all
PD is crap, but I can still have a ball

Ho hum Diddley dee
I went to bed just after 3

Over and out

now very tired and house is a tip


50. A One Off Daily ‘keeping it real’ Blog – Warning fed up and tired

Head tilt and emoji free zone please …

small print : very tired and emotional atm, nightime awful and now trying to keep going.  everyone is different everyone experiences PD, and its symptoms and progression differently.   But the motor and non motor symptoms are now kicking off together.

I did warn you that some of these blogs would have to show it how it is … i.e. rubbish, without an annoying positive spin.  5 years since diagnosis it is more difficult to put a positive spin on some things.

This is a ‘keeping it real blog’

Flaming heck … this will be in bullet points for speed and dexterity problems :

  • No sleep last night – Night time meds all over the place.
  • There are three levodopa meds which are prescribed for different reasons to try and control the symptoms.  All of which are supposed to release in a certain way : controlled release (so gradually over 12 hours), normal release, ‘instant’ release.  Now obviously you will know by now that the unpredictableness of the condition and meds, means that they don’t always work.
  • ‘instant’ release doesn’t always work instantly, sometimes it doesn’t work at all.
  • ‘controlled release’ is very unreliable
  • ‘normal release’ is probably the most reliable sometimes (probably)
  • The unhumourus bit : overnight bradykenesia* awful, at the same time as muscles fireing on and off wanting to move.  Also in a lot of pain with shoulder and hip, problems as a result of PD.

*Bradykenesia : slowness of movement, so difficulty in adjusting position/moving myself.  This is not a made up word.

So my muscles wanted to go go go, and my body was finding it very difficult to move.  Imagine muscles flexing ready for a big load of energy, but body unable to move at speed.  Very uncomfortable and horrible.

I do take meds in the night, but they don’t always work…..

Ho hum Diddley dee.

Having said that, went to tennis at 10am and played for 2 hours – I don’t know either.

Over and out

Now very tired and house a tip ….