Category: THE BLOG

Firstly apologies, this is a bit of a, ‘hark at her’ post …

*in a proper (kind of) published writer way … I need to preface this by saying excerpts of this will be seen in other publications.

Now if. you think, lazy/crazy lady, why can’t she write new copy (technical or wrong term – delete as applicable)? Well in this case there is only really one way of saying some things – I could change the word order to make it different but would that things only confuse.

‘Ere we go …

April 2018 is Parkinson’s Awareness Month and I am asking you to join the campaign. Don’t worry you won’t have to chain yourself to any railings, burn any undergarments, or make a placard.

Instead, I am asking you to please use the hashtag #UniteForParkinsons on social media and the corresponding Twibbon on your social profile, Facebook or twitter.

I sense a divided readership. In an Information Venn diagram, where there are three groups.

• Those who dash away immediately and carry out the instruction to the letter.
• Then those who are a little perplexed at what Mr Ross is going to do with the ribbbon.
• Finally those in the overlap who have heard the word, but are a little scared they will break their computer.

Anyone who definitely knows what I am talking about, please pick a book and go and sit quietly on the carpet and await further instructions. Everyone else, please read :

In simple terms I believe that a twibbon is a computer frame/picture you can (probably ask a child, if you need to) put on your profile picture on twitter or facebook to promote a campaign. Using ’hashtag’ just means putting #UniteForParkinsons on your Facebook page or twitter account.

The instructions can be found here: https://twibbon.com/support/unite-for-parkinsons. You just have to authorize the Twibbon app to log in to your profile, and the logo will be added to your profile picture, on either Facebook or twitter.

#Unite for Parkinson’s is a campaign created and launched by the European Parkinson’s Disease Association (EPDA) and Parkinson’s UK. It aims to raise international awareness of the condition on World Parkinson’s Day (Wednesday 11 April 2018), over 200 years after it was first officially recognised by British surgeon, James Parkinson. Involving countries from Argentina to Zimbabwe.  PD affects more than 10 million worldwide.

So to summarise :

April 2018 is Parkinson’s Awareness Month

w/c 9 April 2018 is Parkinson’s Awareness Week

and the main event :

WEDNESDAY 11 APRIL 2018 is WORLD PARKINSON’S DAY

 

Take a look and/or listen to these :

Parkinality now has a Facebook page :  please like/follow to get blog updates and additional twaddley waffle from me.

Take a listen to this fantastic album on Spotify or I Tunes : Long Hard Road, by Affinity Formation

Take a read of this from time to time : parkinsonslife.eu

Parkinson’s UK confidential support line : 0808 800 0303

Parkinson’s UK website : www.parkinsons.org.uk

Cure Parkinson’s Trust : www.cureparkinsons.org.uk

Spotlight YOPD : (young onset website) : www.spotlightyopd.org

EPDA (European Parkinson’s disease Association) : www.epda.eu.com

Michael J Fox : www.michaeljfox.org

LES

They gathered at midnight, the motley crew
Steve had no idea what they would have to do
He had seen an ad in the local rag
And had immediately grabbed his man bag
The ad was cryptic, it didn’t give much away
Bring a spade, a doily and a bale of hay

It was a strange list, but he did as he was told
Christ, what was he doing – he was 75 years old
Replying to an ad, following it through
He really truly, didn’t have a clue
He was taking a risk, chancing it all
An alien abduction, started to sound normal

Steve finally arrived at a field in Kent
To find a spaceship, where an alien leant
Beaconing to him, to join him on board
For some reason, it didn’t seem untoward
Steve ran chanting ‘eclectic, artisan, niche ‘
Joining him for a hob nob and some quiche

Steve and Malcolm the alien danced all night
Steve was loving the vibe, but try as he might
He couldn’t relax, he couldn’t calm down
He was still wearing his PD frown

Then Steve awoke, rigid, unable to turn
Next the dystonia began to return
Steve was sad, he had left his dream
Where everything wasn’t as it would seem
Where aliens existed, and Steve was free
And it wasn’t all about disease, and sodding PD

‘See no evil, hear no evil, speak no evil’ –   available as a top class ornament appearing on a radiator shelf near you.

In the world of PD, PD has rewritten the rule book again and (with my twirling assistance) created not so much ‘three wise monkeys’, but ‘three twaddley ne’er-do-wells’

‘Speak no evil, smell no evil, write no evil’.

• ‘Speak no evil’ :

Imagine this blog spoken – apologies if this gives you an imaginary headache.

Now imagine that you can see that I am wittering away, but can’t quite hear what I am saying, as I am speaking extremely quietly.

Imagine again, that you finally work out what I am on about, only to realise it was a load of waffle.

Apologies for the virtual headache.

I often describe new symptoms as whispering to me when they first appear.  Well recently ‘whispering’ has been whispering to me.  It actually took a friend to point this out, I didn’t realise I was whispering.  I had no idea there was anything different about my voice volume.

In my head I was still talking at a normal volume, but to friends I was whispering.  When I raise my voice, in my head I am shouting, to others I am talking at a normal volume.

In the same way that movements get smaller, the voice gets quieter.   Not sure why.  I could google (responsibly) and find the answer – but I can’t be bothered – sorry, I could make it up, but I did promise honesty.

I am trying to force myself to speak louder.   This is difficult as in my head I am shouting.  I keep asking my friends what volume my voice is.

This is difficult in certain social situations when whispering is called for.  So when I am talking about the couple on the other table in the restaurant, who are texting, ignoring each other, whilst picking out the nuts from a nut cutlet.  I have to trust my friends that I am not shouting.

There are voice exercises, which will help me to speak at a normal volume again – so as always I am on the case, and will investigate that.

Also singing is supposed to be good – so I will continue with the Sunday night karaoke, which is now for medical reasons.

• ‘Smell no evil’:

‘The other morning I could suddenly smell myself’.  Now an odd statement, which was even odder to experience.  In the same way that I didn’t realise I was whispering, I didn’t realise I couldn’t smell very well, until I suddenly could again.

However, I am hoping that is where the similarities end – friends told me about the whispering which I didn’t know about, no-one has mentioned what I smell like.

Again, I don’t know why.  Equally I don’t think there is anything I can do to smell better – apart from applying more cologne.

Ho hum diddley dee – if I’m viewing your house, don’t bother with the freshly baked bread and coffee smell.

• ‘Write no evil’  :

My writing is untidy, and it has got untidier, due to dexterity problems.  I had heard that PD could make writing get more difficult and I had assumed that was the extent of it.  Writing which was untidy.

oooh no – I was wrong, so wrong … the other day my body whispered about writing.  I was writing an ode (as you do) in the old fashioned pen and paper manner.  And gradually I couldn’t write.  I physically couldn’t write.  My pen control got more and more difficult, the ink on the page got smaller and smaller and completely tiny and illegible.

Flipping heck.

So at the moment these new symptoms are whispering ….

PD is truly CRAP. (hope that wasn’t in a whisper)

 

 

 

 

This blog is very niche : it is specifically for people with Parkinson’s.

I promised to write about ‘difficult to talk about things’.  So here goes …. night time is particularly difficult.  It is an area people don’t really talk about.

PD is 24 hours a day, it does not sleep, and I need sleep.

Meds are low in the night, so it is important that everything is organised …

A few top tips ….

 

• Lightweight (in weight) duvet (difficult to move a heavy duvet when meds are low)
• Slidey fitted sheet on bed, which means it is easier to get out of bed.  Try sliding on something slidey, and then try sliding on something UN-slidey.  Available mail order from older people’s catalogues (true).
• Metal grab rail – not sure of the technical term, but it has long prongs which slide under mattress to secure it, and then I have a small grab rail at the side of the bed.
• Meds and water next to bed
• Spare medication and spare water.
• Phone charged in room.
• Torch to see meds in night – to check am taking correct ones.
• Washing up bowl under bed (not for washing up in).  In case I am caught ‘Williamson*’ in the night.  (Explanation probably required :*Williamson refers to Jennifer Williamson at number 24 who is ‘short’.  Why did I not use a famous ‘short’ person, well don’t want them to be cross when they realise what their name is being used in place of the word ‘short’)

** Okay for transparency and  as I promised to write about things which are difficult to write about I will re write this point – in capitals (aka shouting) … to show how unembarrassed I am …

BOWL UNDER BED JUST IN CASE, I AM CAUGHT SHORT, AKA I NEED TO GO TO THE LOO, AND IT IS TOO DIFFICULT TO WALK TO THE TOILET (phew, that was easier to type than I thought)

All of these top tips make for a slightly easier night.

Sleep well ….

 

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

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

 

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

flip

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

flip

Important : read blogs 55 56 57 all together … important

 

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.

PLEASE DON’T CHANGE ANYTHING WITHOUT CONSULTATION,

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

‘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.

Taxi!

LES Soon

x

 

 

 

 

 

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 …