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.

35. My Music Playlist

(I know, I know, this is a one off maybe)

Music is literally a lifeline – I carry my headphones and ipod/phone everywhere.  Music has got me out of a lot of PD situations.

  • Silent discotheque in the living room at 2am – unfortunately PD doesn’t sleep.  So a new ‘thing’ is my left arm kicking off which is twaddle in the middle of the night – dyskenesia.
  • When I freeze walking, music can get me walking again.
  • When my mood crashes and I my eyes leak for no apparent reason … Music lifts my dopamine mood.
  • When I seize up I flail about and darnse madly to loosen up.

And so many other situations.

Music is so important… lots of things I do revolve around it :

  • Carrying my headphones and ipod/phone everywhere.
  • Weekly Karaoke in a local pub (I literally clear the bar, I assume they are dashing to see if I am available on Spotify).
  • Attending darnsing classes.
  • Watching and darnsing to local bands.
  • Learning piano and bass guitar.
  • Incorporating darnse and walking backwards and sideways in ‘getting from A-B’ (vital as I am not allowed to drive atm on the advice of my Consultant – just another nail in the twaddle).
  • And obviously ‘writing the Musical’ … more about that later.

So if you are a pwp (that’s not a ‘polite Wolverhampton penquin, but a ‘person with Parkinson’s), it is worth listening to a few tunes to see if they help.

This list is my list, which I am adding to all of the time …

And also some of the tracks have rude words in them …

In much the same way as someone must like twiglets otherwise presumably they wouldn’t be sold … music is very personal.

Anyway tis rude to copy …

So please create your own playlist …

Disclaimer – these songs help me, but I cannot be responsible if they have a different/no affect on you.  They help me to walk, relax, lift my mood – if they make you sneeze, eat squid and/or file your bank statements then, although the final one is useful, please try something else.

 

Trainwreck 1979 – Death from above 1979

Mr Brightside – The Killers

The Globalist (specifically at 4.23) – Muse

Psycho – Muse

Vertigo – U2

Rock Lobster – B52s

Kiwi – Harry Styles

Five Colours in Her Hair (US version) – McFly

Take Me Out – Franz Ferdinand

Can’t Stop – Red Hot Chilli Peppers

I Only Lie when I Love You – Royal Blood

Figure It Out – Royal Blood

Na Na Na Naaa – Kaiser Chief

 

LES

Step Ball Change

34. (Almost)(Definitely) The Final Blog Post

This blog has had a loyal and eclectic following and I thank you all.

There have generally been two reactions to my blog, much like marmite … people either love it or hate it.   Actually to me, as someone who has never tried marmite, then it would actually be three reactions.  The third being people who have never looked at the blog.  If you know anyone who falls into this third category then do your best to sell them a blog about ‘an incurable degenerative neurological condition’.

I have enjoyed writing it and feel very proud of what I have achieved.  Feedback is that it has helped many people living with PD and those around them.

I have now been diagnosed for almost five years.  I have heard the term ‘five good years’ bandied* about when referring to the first five years after diagnosis with PD.

*as far as I am aware ‘bandieing about’ is not a medical or legally binding term.  As I may have mentioned everyone is different with regards to PD symptoms.  So please if you have had a rubbish first five years, I apologise.  But may I just say that if your goldfish dying has made the past five years difficult then it probably has nothing to do with PD (unless you have an exuberant tremor)

Just to recap, starting this blog I set out to :

  • Raise awareness
  • Let people know they are not alone with very random symptoms
  • Keep a journal
  • Share tips

I feel I have achieved these aims.

Since diagnosis, I have :

  • Achieved so much in the past five years
  • Learnt new skills
  • Become more confident
  • Made new friends
  • Learnt not to fret about small things
  • Realised I should do things today and not put off until ‘one day’

Just a tad annoying that I had to be diagnosed with a degenerative neurological condition to realise these things.

The next paragraph may make you switch channels, but bear with me you have read 20,000 words another few won’t be difficult.

To Everyone*

  • Live for today, but not to the detriment of tomorrow
  • Treat yourself as you would a best friend, with kindness and respect.
  • Don’t put things off … ‘one day’ is a very busy day

*including you

I feel the blog has reached it’s natural conclusion and I would like a new project … so what now?

To cut a very long and interesting story frustratingly short (for you) I will briefly explain in a few bullet points :

  • Chance meeting
  • Musical collaboration suggested
  • Over 20 original song lyrics now written
  • Currently working on a Musical about Parkinson’s

So keep an eye out for the new musical about a degenerative neurological condition …

Fantastic.

And I leave you with a few interesting things to look up and enjoy for information and entertainment (although a disclaimer, I cannot be responsible for outside websites, I have not checked their suitability for reading/watching and also cannot be held responsible for mistyping the words into the search engine).

  • Spotlight YOPD (young onset charity)
  • Parkinson’s UK (charity site)
  • The Cure Parkinson’s Trust (charity site)
  • Affinity Formation – Long Hard Road (album on Spotify)
  • Jake Thackray (comedy songwriter)
  • Kevin Turvey Investigates (tv comedy investigations)
  • Parkinality (obvs)

Keep well

Dance fabulously

Smile a lot

Enjoy life

Les

x

 

 

 

 

33. Back in the Room

In the words of, Hypnotic Hugo, I’m ‘Back in the Room’

Blog Paused 14 June 2017

Blog Restarted 7 July 2017

I trust this blog finds you well rested and chomping at the bit for more positivity and humour about a degenerative neurological condition.

This ‘thing’ (at the moment it doesn’t deserve a name) has been testing my positivity over the past few weeks.  But a rest and regroup and I’m back on track.

Actually I feel under pressure with this post.  It feels like the first post but with knobs on.   The first post back in January 2017 had no expectations as it had no audience.  This post has subscribers who will get a notification ping in their email.

On with the blog :

To be honest I was hoping not to be back blogging about disease.  I was hoping a cure would be found whilst ‘I was on a break’ and I could start that tightrope walking course.

However, no cure yet.

A brief PD update.

When we last liaised I was generously sharing (aka speating*) about the meds cutting out and having to pull out of the Vitality 10km.   I mentioned that I was moving to a new Consultant, a PD specialist (my first consultant was brilliant and had looked after me very well for the first five years, but we decided that it was time to move to a PD specialist as the condition advances).

*speating –  repeatedly self pitying.   My mini support group, the Dagenham Dancers, have an agreement that we can repeatedly moan or self pity to each other.  No-one judges or moans, and no-one holds back.

I do anticipate a modicum of confusion so I will set the scene which will hopefully make my waffle clearer*

*obviously this refers to making my waffle, as in writing, easier to understand.  It does not refer to either a ‘transparent bread product’, or ‘morning bakery product remover’

You bump into Pauline from number 22, the conversation may go something like this.  The polite and ridiculously superficial conversation would be  : ‘How are you?’ ‘Okay, how are you?’ ‘Okay, how are you?’

You bump into a Dagenham Dancer in a hardware store.  Emotions, all over the place : The speating conversation version would be : ‘How are you?’ ‘Crickey, where do I start, (blah blah blah) drugs (waffle waffle) awful (blah blah blah) spilt the ketchup (blabber) embarrassment (blah blah blah) walking stick (mumble) Veronica Smithers (mutter)’ and continue and repeat.

My new consultant has added another med into my schedule.  Rasagiline.  I know you will have questions, so to save you searching for a sealed down envelope to write them on the back of, I will bullet point some of them :

  • It is a monoamine oxidase-B inhibitor.
  • 1 tablet in the morning.
  • Total of 13 tablets a day.
  • ‘I avoid cartwheels, so I don’t know if I rattle’.
  • Definitely an improvement, but still cutting out in the afternoon.

My consultant has also referred me on to the advanced treatment part of the hospital, to look at the possibility of DBS (deep brain stimulation – yes this does involve drilling into my brain), and the advanced medication treatments.  Not for this week, but for the future.

Again, these conversations and referrals could drag me down, but I am taking them as a positive.  I have to be pragmatic (word of the week).  PD is going to get worse, and I will need these advanced treatments in the future.  So I am now on the list for initial consultations.

Although my new aim in life is to be the poster girl for the first humanoid cured of Parkinson’s.

So I will raise a metaphorical glass to the next 30,000 words.

Onwards and upwards.

All those who have queued round the block all night in the snow for this blog rebirth then step forth and have a butcher’s.

LES

 

32. L.E.S.

27,064 words

88 pages

32 blog posts

Started 31 January 2017

Paused 14 June 2017

Over 50 subscribers

Nearly 900 unique views

Phew

 

I think it is time for a break.

Normal service will be resumed.

‘switch off (your television set) and go out and do something less boring instead’

 

 

31. The London Vitality 10km – An Explanation

The title sounds rather dramatic, however, I feel I really need to give everyone a proper explanation as to why I have pulled out of the run.  Lots of people have generously sponsored and supported me.  I must just add, that my sponsorship is being transferred to another sponsored event for Parkinson’s UK, a 2 mile walk which I am confident of achieving (touch wood).

Crickey, this was a huge decision.  It was very easy to sign up for the 10km, just click and fill in a few details, and done.   That is being a bit too simplistic as I honestly did give it a huge amount of thought, it really wasn’t a willy nilly decision.  I trained properly and up until a couple of weeks before the run I was still raring to go and do it.

As soon as I told friends and family that I had pulled out of the 10km, the reaction has been wonderfully supportive.  I asked for no emojis or comments on social media.  As I also frown upon electronic head tilting and the frozen peas (or tinned mushy peas, which I randomly discussed with a random person) would probably damage the computer.

The most common reaction when I told people was that they thought it was the right decision and they were actually relieved as I had been so ‘all over the place’ – that probably isn’t a medical term, but I think it should be.

I have had many amazing emails/texts/message in a bottle/calls/letters and face to face chats*

*For the younger readers I need to clarify that is actually sitting in the same room as someone and talking to them whilst not being distracted by anything else.   Sitting in the same room and texting each other doesn’t count, nor does ‘Multi Gencom**  talking and on your mobile googling, ‘how to remove avocado stains from an antique chaise lounge’.

** ‘Multi Gencom’ – Multi Genre Communication – using more than one method of communication, possibly for different purposes and to different people simultaneously, ie texting and chatting and googling simultaneously.  The obvious danger is ‘Multi Mis Gencom, ie ‘talking’ to so many people at the same time that the conversations get confused in the flux.  For example,

‘Yer Mate Half a Shandy down the Wotsitsnames would be Dandy – on wayz see you slater’ sent in error to Great Auntie Sheila

‘That would be marvellous I do enjoy a bit of crocheting.  And the lavender cushions we made at Creative Company add a glorious aroma to my sock drawer’ sent in error to Big Bill Baloney who you are meeting for a pint.

Anyway(!), on with the blog :

So what has happened?  If you have been one of my marvellous close friends who has supported me in so many ways over the last few weeks, please read the rest of this paragraph.  Please, then switch off the computer and you can go about your daily lives.  In a nutshell – thank you, thank you, thank you – I genuinely don’t know what I would have done without you.

Now, please leave quietly in a single file, please consider our neighbours.  Also, if you are going to the pub, mines a ‘g and l’.

Now they’ve gone I can tell the four of you who are left, the rest of the twaddle.

Meds have been unpredictable for a while.

A recap : PD bubbles along doing it’s own thing and meds ‘control’ the symptoms.  If you are a newbie who has better things to do than read 25,000 words, here is a brief ‘in my words’ description.  The meds for me are miraculous when they work, BUT they are unreliable.  So that can be the difference between walking and hardly walking, smiling and sobbing.

In the couple of weeks prior to the run, meds have been switching off up to four times a day without warning.    This has been scarey as not only do the motor symptoms kick off, but my mood has been crashing.  My mood crashing is not me getting stressed about anything, it is not me consciously crying.  I just start to sob uncontrollably for no apparent reason.   I appreciate that this is very difficult for those who are with me.

People just want to help, but actually there is very little they can do.  Friends with PD know this and I think I have said it before that ‘you don’t get it unless you’ve got it’.  The unpredictableness, the lack of rhyme or reason why symptoms kick off.  However, I have called upon my friends who have come to my rescue at a moments notice, to just sit and be there – thank you.

Slept badly doesn’t necessarily mean a bad day.  Eaten well and hydrated well doesn’t necessarily mean a good day.

The only thing which definitely makes symptoms bad is STRESS (capitals obligatory) which I have written about in blog 5.

Recently I have found that quiet and meditation can calm some of the symptoms.

For me, living with PD is all about keeping going and learning new skills.  but I have only realised very recently that resting and meditating is not a waste of time.  It is essential and makes a real difference – more in a future blog.

Physical Activity + Learning new Skills + Meditation/Rest = Better PD Person

So in summary, a combination of the following were my reasons for withdrawing from the run :

  • The extremely unpredictable meds would make the run even more difficult.
  • No training for two weeks prior to the run.

What am I doing about these problem meds :

  • I have an appointment with a PD Consultant to discuss meds.
  • I am continuing to exercise daily.
  • I am trying to eat more to put on some weight.
  • I am trying to factor some short meditation into every day.
  • I am approaching life with a positive attitude and limiting stress as much as possible.

PD Update :

Randomly the past week has been back to the usual rubbish unpredictableness, I can put up with that.  I wish I knew why the two weeks prior were so so awful.

And actually as of this exact moment I am feeling almost totally tip top (ish) … I love life when everything is in some kind of, albeit wonky, equilibrium.   (Hoping that is the correct use of the word.  If it’s not, I trust it’s not a lesser known expletive).