Category: THE BLOG

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 …

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

 

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 ….

 

 

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 …

 

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.

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 …

 

 

 

 

 

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).

 

 

 

 

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 …

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

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