74. Just Diagnosed?

I realise we are a trillion billion zillion words into this tome, but I thought it worth slipping in a ‘ave you got it’ ‘just diagnosed’ page.

Firstly ‘ave you got it’ …

I lived with a lot of little symptoms, before my left arm stopping touch typing.  I was made to go to the doctors and get a referral.  All I would say is persevere, unless someone has seen PD before. You need to see the right person, as shock horror it is not just a tremor.

There used to be a sign in the doctors saying ‘do not come in with more than one condition at a time’.   Ridiculous, PD is so many seemingly unconnected symptoms.

My first symptoms, left hand intermittently stopped typing, left arm shook occasionally, left hand sometimes had difficulty twiddling a fork.  left leg had problems tap dancing (really).

Take any appointments you are offered – take them.  The more people you speak to the more information you will have to deal with this ‘thing’.

Don’t feel hassled into starting medication straight away, speak to nurse, consultant etc. Take advice.

This is directed at the newly diagnosed.  This is merely my opinion/advice of what I would say to myself in hindsight.

Every hour someone is diagnosed with Parkinson’s (the joke about being woken a 2am has already been patented by someone else 😉

If you ‘switched on’ Wednesday 11 April 2018, Global Parkinson’s Day, then crickey you must be thinking ‘wow wee Parkinson’s is the most popular, fashionable, talked about thing in the galaxy.’  ‘We’ are all over the computer.

Thursday 12 April 2018, you will be faced with the stark reality of, apart from a relatively few (in the whole scheme of things) people blogging, campaigning, reporting about PD, it is a niche disease . Especially if you happen to be young.

Be careful when you google – there are a lot of people out there who appear to be knowledgeable but may well just be a lass at home like me, and at least I admit that I know nothing and am learning all the time.

Your life has not ended, it has just got a tad more complicated.

Anyone newly diagnosed who has come across this blog may be a bit overwhelmed by the information and waffle. if you want to read from the beginning please go back and click on 2017 in archived blogs and then read if you wish.

As a wistened old sage of 50, and nearly 6 years of PD experience : a few pieces  of food for thought

Day of diagnosis, remember …
You are still the same person as yesterday, only better armed, the ‘thing’ which has been worrying you has name, someone believed you – phew’
Don’t panic
Don’t google

It is not terminal (you die with it, not of it)

There is medication which can manage the condition and various ways of managing the condition.

You will find you have instant membership to a close nit community

How, Who and When you tell people, is a personal thing.

When you first get the diagnosis only tell ‘definite people’, ie you can’t ‘un-tell’ someone. Someone who you definitely want to know, this could be your mother, or Bert who works in the Banana Emporium I will not judge you.  You can’t tell Nosey Nora from Number Nine about the PD as soon as you get home, and then wonder how the whole neighbour hood knows before you’ve  cooked your oven chips.

Make an appointment with your GP for a weeks time.

Don’t google
Don’t give up any activity
Don’t give up exercise
Don’t give up anything
The moment of diagnosis has not changed you,
You are still the same person as yesterday, only better armed
You now have knowledge
This ‘thing’ has a name
You are not alone
‘You are not ill you have a condition that needs to be managed’

Day seven after diagnosis :
See your GP around this time
Ask about PD nurse
Not every health authority has a Parkinson’s Nurse. However, it is worth asking as if there is a breakdown in communication, you might not be told. Always ask.
Ask some questions about Parkinson’s specialist Neurologists :
Not all Neurologists are Parkinson’s specialists. Most do general neurology and have a specialism. So if possible ask about a Parkinson’s specialist neurologist.

Parkinsons UK

Spotlight YOPD (young onset charity)

The Cure Parkinson’s Trust

Hey hum Diddley dee

onwards and upwards

73 : Parkinson’s Awareness Month 2018 Round-up

The dog didn’t eat it, the cat didn’t wee on it, I have no excuses.  Sorry for the tardiness of this blog.

How do I round up this Global Awareness month of April 2018?

I have thought about it for a while

PD has totally taken over my life.

Parkinality, I defined it as Parkinson’s Personality. It was suggested the other day that it could mean Parkinson’s Reality, which actually I am starting to prefer.  Although I must accept that PD is a part of me now, I am forever trying to stop it taking over. So calling it Parkinson’s Personality means PD may think it has a proper zone in my personality alongside, daft, chocolate and eclectic.

Whereas, PD is definitely part of my reality, everyday is affected by it and it influences everything that I do, it is not part of my personality.  Clear as …

Life doesn’t end on diagnosis, it just gets more complicated.

Looking back over my posts during Awareness Month, there is a theme running through them.   You will have heard how crap the nights are, and how rubbish it is when my meds stop me walking.

This blog could easily have ended up a bit like the 24 hour news channels.  The general public are initially  excited by this, but are not sure why.  They will probably still only actually watch 20 minutes at News at Ten, the rest of the 23 hours and 40 minutes are white noise, and they often have to pad out stories in order to fill the time yawn.

  • In 1955 the half an hour news report may incorporate 10 stories, one may be;
  • ‘Pencils need Sharpening Shocker (headline).  In Sulleygrove Primary School, several children had told their parents that the pencils were not sharp at school.  Several wrote to the headteacher.  Pencils were sharpened.’ – item end and next item begins,

 

  • Same news story in 2018 and ten stories in all covered, but this time 24 hour news rather than half an hour.
  • ‘Pencils need Sharpening Shocker (headline).  Sulleygrove Primary School was opened in 1950 by the Queen of Old England Town (acting).  Giles Postlewaters, roving reporter went to Sulleygrove to interview the oldest, but still aliveist, resident who remembered that day.  (Cut to black and white vintage footage of visit, and 1 hour interview of Giles Postlewaters interviewing residents).   And so on and so forth….  The actual cliffhanger, that of the sharpening of the pencils appears after about four hours of filler VT.

 

As I may have mentioned PD affects everything and every activity.  I could write a 24 hour commentary on day … for example starting every day with :

‘Took meds at 6.30am, laid there impatiently for half an. hour, wanting to get up.  But trying to judge when meds will be working so I can walk, rather than fling myself from wall to piece of furniture.  In meantime do leg exercises, bending and stretching in bed trying to get brain messages working.  Tried to get up at 7am, struggled downstairs, meds part kicked in.  Really struggled right knee hurts where physically trying to drag foot.  It’s at times like this I find it really difficult.to remember it is a neurological problem and there is nothing physically wrong with me.  Finally drag myself downstairs it is 8.30am and I have been trying to get up since 6,30am.  Run a bath to try and unlock back.  So still not ready and it’s for not trying.  Pre PD used to be at the gym at 6.30am (I jest not), I love the early morning.  Walking to the gym used to feel like we were living on a film set a la Trueman Show.  Walking calmly but with a purpose, lots of people gathering to open up the world for the day.

i.e., Madge emptying post box, Reynold replacing lightbulbs, Dulcie cleaning windows, Rimpo delivering milk, etc etc

Each day generally starts like that.  But that would get very wearing if you had to read it every day (heaven forbid, it is certainly wearing actually living it)

Whilst reading the following bit pop the following album on you turntable, Affinity Formation, Long Hard Road – I especially like Blackbird.  (for those under a certain age play on your phone on spotify),

week commencing : Monday 2 April

  • Went to see a local band at a local pub, they were rather good.
  • PD Awareness Event, Wednesday : Boxing Day, not literally.  At a gym in London.  John Conteh there. Organised by Spotlight YOPD (young on set charity) and Rooney’s Gym.  Boxing is the new sensation, which could rewire the brain.
  • Column in paper this week
  • Pottery painting with family
  • Out to dinner wth girlfriends

week commencing : Monday 9 April

  • Alexander technique : used as a relaxation technique, and movement/posture
  • Went to have Hair done
  • World PD day :   Up to London for Cure Parkinson’s Trust event.  Research lecture and meeting and having a catch up.
  • mega bad day on sunday – PD wrecked whole day.

week commencing : Monday 16 April

  • Pilates
  • Parkinson’s UK lecture
  • Tennis
  • Column in paper
  • Dinner
  • Counsellor
  • Music night PDUK fundraiser.

week commencing Monday 23 April

  • Alexander technique
  • Pilates
  • Away at friends
  • PD Support group mtg
  • Watching Dance show

In amongst these things I also did the usual :

  • Making meals. (who am I kidding, M&S, takeaway. Waitrose, Tesco Express)
  • Sleeping a little (generally disruptive in the night, more likely to sleep in WH Smiths at 3pm than in the night … )
  • Writing (blogging and newspaper column)
  • and generally doing the things everyone does
  • I generally don’t have the motivation to do anything gardeney or cleaney.

However, I don’t get anywhere near the amount done that I used to.  Not only the PD physically stopping me.  But also apathy, easily distracted, lack of motivation.

So busy bumble bee week with PD awareness.  Divided our time between Spotlight, Cure Parkinson’s Trust and Parkinson’s UK.  Met some lovely people.  Lots of writing.  Eating etc.  Off to Comedy show tonight.

 

La de dah

LES

lovely gg les

 

 

72. oooh it’s May let’s have a new disease

WARNING : IN THIS BLOG I QUITE BLATANTLY ‘MISLAY THE PLOT’

Flipping heck, flipping heck, flipping heck

I think that says it all.

Even though I am fifty zillion words into this blog, I do remember my roots (no jokes about the hair please).  In the beginning, I was not ‘the word’.  However, I did promise that this blog would be many things but not a Whodunnit.  Anyone who whispered that the blog could be described as : odd, niche, artisan, smelly, waffley – off with their heads (obvs only dermatological ones)

I have OsteoArthuritius in my right hip and I am distinctly, rip roaringly, unchuffed.  I am so unchuffed I have decided to miss-spell it on purpose – see that ‘sussed it out’.  Hear ye I will hence forth in this post call Parkinson’s, Plimpigtons, that will really get up the nose of the word processor – ‘ner sussed you out too’.

(An apology, this is all degenerating into rubbish nonsensical twaddle ..)

The ode about pain, a lot of the problems in the night with waking, is due to the pain in my right hip I had ignored it for a long time as it was ‘just the Plimpigtons’ causing problems.  About a month ago a humungous pain in my hip made my eyes water, (and I am quite butch (in a floaty feminine way).

On the case as usual, I went to see a Hip Guy (I will treat my audience wth some intelligence and won’t insult you by making the obvious jokes)

X ray showed severe degeneration, bone on bone.

I have inadvertently got another disease .  OsteoArthuritius has very skilfully elbowed it’s way into my blog.  Cheeky blighter.  Don’t worry it is not going to take the limelight away from the main event.

Ho hum Diddley dee I must be over 173 with two ‘older person’ conditions – both chronic, both incurable, both (apparently) manageable.

So I may mention, moan, or just inform you of this new ‘condition with which I live’ from time to time.

Hip replacement on the cards …

LES

Over and out

PS – this is a massive PS, but I am making it less massive by putting it as a PS in the tiniest print I can manage – this new condition means I have to stop tennis.  I know.

 

71. The ‘Hole in my Bucket’ Ode

Lists should be on fridges, in bags, and in Santa’s sack
Not in buckets, I believe there is something wrong with that
Why write a list of things to do before you die?
Are the things on the list so important?   If so, why?

Climbing Everest, walking on water, tea with the Queen.                                        Are these on your bucket list?  Are they really in your dreams?
Do you really think you will enjoy the adrenalin hit?
A quick thrill – each one over as quick as a wink

Making a cup of tea, when you want one                                                                       Up early, walking, admiring the rising sun
Going to meet your guy, without a second thought
Shopping with your friend, buying more than you ought

Eating steak, without worrying about your meds
In fact,  doing anything, without planning ahead
My list is not in a bucket, as mine is full of holes
(I am afraid for this line to rhyme it is going to end in ‘moles’)

If I sound as if i am preaching, then I really am not
Or maybe I am.  But actually I don’t care a jot
What is on your list, or what you keep it in
I don’t mean to be rude, but I would file it in the bin

You can still have adrenaline rushes, if that’s what you need
But don’t forget the other stuff, the things that help us breath
The tiny things which happen – don’t let them float away
Pause, think, listen, enjoy and appreciate each day