Hope you don’t mind my butting in as it were but I noticed your comment about holding a cup. In case you are not aware there are cups with non standard handles and there may be something in that category that helps. The DLF have quite a lot of info on cups, this link will point you in the right direction.
Thanks for info got 3 cups packed away 2my late father never used but grateful for tips anytime
Pete
Parkinson’s is…….
sit in hospital corridor,
posters on the wall,
each one shouts Parkinson’s,
then I hear nurse call.
Neurologist ready,
just walk across this room.
You don’t swing your arms,
feel gathering gloom.
Parkinson’s is ……
Truly unfair,
Why pick me
Not someone else out there!
Take away my freedom.
Make me dance alone.
Change my personality.
In my head, I’m on my own.
Parkinson’s is ….
A tablet,
a little brown pill.
I wish that it worked,
Maybe one day it will.
Trying to be positive,
Hope crowds will respond,
And that someone is waving
A large magic wand!
This was my version which I have tried to tidy up as it did not come out as I intended when I first posted it.
Parkinsons (my version anywav)
P. Pain not just physical but mental too, we all endure
some not as much but others a lot more I am sure
My legs hurt most of all, its there in the morning when I awake
and can remain all day, regardless of the pills I take
A. Another annoying symptom to add to the list. How many more?
Stumbling about with feet that shuffle and stick to the floor.
Slurring my words, losing balance and falling over as if I were drunk
My face seems frozen with an open-mouthed, lost look as in a blue funk
R. Regrets, I only have one. Bringing Mr P to my wife’s door
50 happy years she has given me, she deserves so much more
We were happy, enjoying etirement together until he came along
it’s not an easy task looking after me now, I hope she can remain strong
K. Kindred spirits on the UK Forum help keep the faith and reduce the hate
that hate dwelling inside me for this condition, I hope I can reciprocate
There is always someone there with words of wisdom and advice
to lift you when feeling sad and down, it is no paradise
I. I was awarded the title “Master” of my craft during my time on the tools
good with my hands, proud to have achieved such a high standard
That was before Mr P. came and stole my dexterity, the thieving bastard !!
Now my handwriting is like an Eight-year-old scribble and I feel like a fool
N. Next, its a worry, what the future holds is a mystery I can not postpone
I have changed so much its frightening, I am sure I`m in the Twilight Zone.
Gone is the confident retired businessman who looked back with pride
Now I dribble, struggle to walk, can hardly talk. I just want to hide
S. Sorry, sorry, sorry I am fed up with saying sorry
I feel like the guy on TV when everything he touches “turns to skittles”
Like many other sufferers, Mr P. is not the only reason I visit hospitals
They are great places and do a great job, I am not having a go, sorry
O. Only time will tell what happens to me, as I battle this mysterious condition
Fight on I must, there is no other choice, it remains my mission
To overcome whatever that thief throws at me, I will strive to Toendure
My tanks are almost empty, I only hope it is not long before they find a cure.
N. Not all of my symptoms have been listed, there are far too many to mention
I am also confused at times trying to separate the condition
from the side effects in the cocktail of medication.
I think that it needs a qualified Doctor or perhaps a Magician
S. Sorry, sorry, I seem to remember writing this before.
There it is up there. Did I tell you I sometimes forget?
Please don’t tell me of any mistakes or the fact this last bit doesn’t rhyme
I don’t care that it’s been done before.
** This is Parkinson’s (my version anyway)**
Sorry its stilll not right but im sure you get the gist.
Mal.
Helpers
No one in my family asks
I need help to do my tasks
They never offer to lend a hand
Or even try to understand
They never know how I feel
Or how I, m coping
They think I, m fine
But they don’t know what, s on my mind
I have a new family now
That I can call on
They are here on the forum
If ever I, m down or feeling low
I know just where to go
They mean more to me
Than they will ever guess
Without them all
I, d be such a mess
Petec
A STAND: ON WORLD PARKINSON’S DAY 2019
This is Parkinson’s, come and see
All these leaflets, spread before me.
You have Parkinson’s, what’s in store?
Take a look at this and much more.
Information is flowing out,
Spilling to the floor without doubt,
For you to peruse if you’re there,
For you to peruse if you dare.
Our information stand has come,
To make aware of troublesome
Points et al ,to everyone
Concerned with PD; it’s no fun.
This is Parkinson’s, come and see -
A balloon for you, one for me.
…
Balloon expands before your eyes,
And big enough, it now tries
To lift off from the ground, to view
Life with PD; it could be you.
Down below, the world passes by,
Impatient waiting for that guy,
Who can’t seem to move out the door,
Is caught in crowd, falls to the floor.
Across the road, in a food shop,
No one has time to wait and stop,
While at the checkout, woman pays,
And this one of her better days.
Hurry up, the shout from behind,
We’re in a hurry. Do you mind!
…
With Parkinson’s, time flies past,
Invites you on its list, the last
To be consulted on th’issues
That matter,while you grab tissues,
To wipe the flow, from off your chin,
Of dribble, making you cringe within.
Others look on and wonder why
Time is spent on these girls and guys
Who look just like the village fools
And just ignore life’s finer rules.
They bend forward, much too near…
Their whisp’red words you cannot hear…
This is Parkinson’s, come and see…
Read these leaflets, they are free.
Not my choice
It, s hard to explain
To those unaffected
What Parkinson’s does
When you get it
Bit by bit
It causes more pain
Something is wrong
With the wiring of your brain
You scream out loud
At the top of your voice
I can’t help it
This was, nt my choice
If only you could tell
People why you are unwell
They might understand
And lend you a hand
It, s often help you need
Not standing and staring
Just some understanding
And a little caring
Petec
TAKE THE PILLS ( To be sung to the tune of I Belong To Glasgow - With apologies )
…
I belong to Parky’s
Dear old Parky’s realm
Well, what’s the matter with Parky’s
Is no one there at the helm
I’m only a common old PD lass
As anyone here can see
But when I get a pile of pills every day
Parky’s belongs to me.
…
Me and a few of my buddies
One or two pals of my own
We went out for the day and I really must say
None of us ever once moaned
None of us said a bad word
And that’s the reason I’m here
We were plagued by this one and that one
Our happiness turned into tears.
…
There’s nothing in not taking your pills
And feeling self righteous maybe
If the pills you take not - you perhaps have not thought -
Made you feel better, you’d see
There’s no harm in taking an odd pill
It makes you feel so much in charge
It gives you a feeling that you can conquer all
Even with the bullies at large.
Great poem. And song x x x
Parkinson’s is permanent
Parkinson’s is permanent,
You cannot cure it with a knife,
So, if diagnosed you must accept:
It’s now with you for the rest of your life.
If you just accept this fact;
Then very swiftly move along,
You can prove to all of those doubters,
That you can cope, and all of them are wrong.
I won’t pretend it’s easy,
And daily challenges you will face,
Simply try to do the best you can,
And the joys of life you can still embrace.
You’re better than this disease,
And I will prove it if I can,
Still working after eighteen years,
I couldn’t dance before Parkinson’s:
Now I just can’t seem to stop
Brilliant!
Disco-Knesia
I went to a party,
And the music was brill,
But when the music stopped:
I just couldn’t keep still.
Dancing to the rhythm,
Of the Parkinson’s beat,
I still looked very awkward,
As if I had two left feet.
Yes Disco-knees-ia
Has given the chance,
To show I’ve no rhythm,
And that I’m no Lord of the Dance:
…But that I’m not worried about it, not one little bit;
Because as long as I’m dancing:
I couldn’t really give a
Shhhhh.…Now that would be telling!
Hywel GRIFFITHS Q.P.M
Symptoms of PD are many it’s said,
Because some unseen doesn’t mean in our head.
When April’s over symptoms won’t go to bed,
So here are ones I’ve experienced and read.
My PD awareness symptoms A - Z.
A for Anosmia goodbye sense of smell,
You also feel Anxiety and Apathy as well.
~
B is for Balance on level ground feel wobbling.
Bradykinesia is slow movement like a 6p Steve Austin.
Breathing even takes a bashing.
~
C’s Constipation a waiting game woe.
Cognitive issues feel like an heavy blow,
Your confidence may just pack up and go.
~
D has a few symptoms which we can mention,
Start with Dystonia painful muscle contraction.
Dysphagia affects swallowing causing.
Reflux, , choking and chest infection.
Dyskinesia involuntary movement often a
side effect to medication.
Depression and Dementia sadly felt with condition.
~
E is a symptom that is kept taboo.
Shh listen Erectile Dysfunction to me and you.
Eyes start closing at times watering to.
Emotions and feelings can become public view.
~
F brings Falling out of the blue no warning,
Fatigue just hits Morning, Afty or Evening.
Often you’re Freezing no extra layers are solving.
Feet are hurting when either standing or moving,
Finger and thumb get a Pins and Needles tingling.
~
G for’s Gait like the song say’s Everyday i’m Shuffling.
Getting dressed actually takes some thought planning.
~
H for Hallucinations free of charge they come natural.
Always the hurt be Physical, Mental or Emotional.
~
I means insomnia no 6 / 7 hours known.
Immune system weakens over time PD grown.
Isolation can grip so please reach out you’re not on your own.
~
J’s just only!!! Joints seizing and locking.
Judgement cast without facts knowing.
~
K’s the kicking due to vivid dreams if succeed in sleeping.
~
L is the Leaning giving things a new view.
Losing abilities and lifestyle try start anew.
~
M’s Muscle Stiffness reduction in movement and pace
Then there’s the Mask called Parkinson’s face.
Memo … Forgot what is next, please watch this space.
~
N brings on Napping any where but my bed.
Numbness to arms & legs as more easily go dead.
~
O is for others in case may have missed.
~
P definitely pain with a capital P
Legs, Back , Neck and more there will be.
Posture suffers as stoop like some trees.
Patience is needed if we struggle and others see.
Bus stops or checkout struggle to show urgency.
Pneumonia a danger if caught by you or me.
~
Q is Quiet how we sound when start to talk.
~
R is Restless leg movement likes to pay a visit.
Restrictions now as abilities have a limit.
~
S = Side effects from drugs of which there’s plenty
includes impulsive & compulsive addictive activity
Sweating excessively sat just watching telly.
~
T for the Tremors face of this condition
causing grief with the constant motion.
Toes start pointing in a different direction.
~
U’s Urinary Tract another hope to avoid.
~
V is Vocal chords weakening also.
~
W is the Writing hard to read as scribbles,
Weeing an issue due bladder troubles.
~
X is for language it often causes.
_
Y = Young onset because yes PD’s not ageist.
~
Z = Zip-a-dee-doo-dah, zip-a-dee-ay.
It could be worse so enjoy the good days.
Hywel — hello, I love that one!
Other side
The last few weeks
Have been so tough
Sure there were times
When I, d had enough
The spirit inside me
Was draining away
The only thing driving me
Was watching Liverpool play
Now it may sound silly
And hard to explain
But that’s what pd does
Takes your independence away
It doesn’t matter
What keeps you sane
Anything to focus on
To get through the mundane
The boredom kills and
The pain does your brain
Together they push you
To the point of disdain
Petec
Cruelty In The Night!
Still awake with the dawn coming soon
A head full of troubles while I listen to a tune.
Painfully hoping that sleep will come visit.
At the same time afraid of the dreams that come with it.
The meds once again have failed to deliver.
Medical science has sold me down the river.
Abandoned me to a lonesome fight against all the hurt.
Feeling vulnerable, naked without even a shirt.
Publicly stripped for all humanity to see.
Exactly what my brain is doing to me.
Exposed to derision, humiliation and mental attack.
Now the transition complete to perpetual insomniac.
Tommy 2019
Washing Hands
__________________
Three years of shaking and
suffering for me.
Three puzzled consultants too blind to see.
Their indifference colluded to leave me in limbo.
Oh I almost forgot they recruited my physio.
My misfortune to be ill or is it just fate?
How will I cope with such a full plate.
They took my life story and twisted my words.
To arrive at a theory that’s just for the birds.
So now they’ll discharge me despite nothing achieved.
Except the stolen hope and the trust I believed.
Whilst they’ve heard my secrets so truthfully told.
Their combined insincerity has left me quite cold.
So I checked their profile and what did I see.
The senior consultant is also employed by the DWP.
Therefore the conclusion I reached is clearly the simplest.
Surely the boss has a conflict of interest.
Fate or misfortune are they just the same?
All I know is my chief consultant is in the politics game.
But fate did let me find a conundrum to be unfurled.
And led me to discover I was being treated by the pilgarlic Pontius Pilate of the
neurological world
Tommy 2019
Cursed
As the days pass by
I sit alone and wonder why
How come parkie chose me?
For the answer I know
Is in my family tree
Who it attacks
It cares not a jot
It, s 50/50 whether
You get it or not
For the generations to come
I hope they do not sucome
To this awful affliction
And that in the future
There will be a cure for this condition
I pray in the future
My family will be free
From the curse
That is pd
Petec