me and parky

There is a disease they call Parkinson

it’s symptoms are very clever

they appear slowly and silently

but grow and stay forever

It’s been with me now nine years

add 2 years more fermenting

the honeymoon’s drawing near an end

and I fear there’s no relenting

We’ve been asked to mark Parkinson’s disease

in whichever way we’re able

so I’m giving my two pennies worth

and putting it out there on the table

One day as I was pouring tea

a rattle of the cup alerted me

to what I thought was a nerve gone queer

never thought there was anything to fear

and whatever way I held a plate

that little shake my hand would make

the same as when holding a pen

just my right one now and then

but slowly my writing seemed to go

from fast and big to small and slow

what started off so tidy and neat

became a scrawl at the end of the sheet

it never bothered me to much at the time

still thought all was fine

until I started a college degree

then problems really hit me

I began to write the lectures down

but my arm and hand would not go round

as others sped across the page

I couldn’t get passed the title stage.

so on to the computer

I did try but my finger

couldn’t right click

and I didn’t know why

such everyday actions

like abc

were ceasing to work

and crippling me

anxiety came next said hello to me

and made himself at home on my knee

little did I know he had been biding his time

just the next symptom along the line

yes each one brought another

they came plenty and quick

but the strong lingering smells

were the hardest to stick

for whenever a strong smell

floated through the air

for days in the nose

that strong smell would repose

then as quick would go away

to come back another day

as strong as ever

oh that Parkinson was clever

forever in your airways

forever in your mouth

afraid to talk to anyone

case that dam smell would just pop out

or when you began to do a task

the concentration would go so fast

so onto another one you would flow

until a dozen tasks were on the go

do you finish them

no not ever

you just put into bags

and revisit them whenever

and when all are in bed

you’re up full of beans

night is day

to your brain it seems

but wait there’s more

your fingers keep locking

one leg ‘s going round and round

something shocking

your walking with your knees bent

your ankle thinks its twisted

your knuckles are swollen and lumpy

your hands are stiff and fisted

your neck and spine get weak

you try to move your feet

they talk about the cog wheel reaction

it feels more like you’re in traction

but that auld parki he’s so clever

he changes symptoms like the weather

so an ongoing mixture of this and that

can keep you up or knock you flat

then just as you thought

things couldn’t get madder

you’re in the supermarket

and you just can’t gather

what were you there for

what will you get

3 hours later and

you’re not finished yet

then fumbling at the checkouts

you’re trying to pack

but it’s all made worse

by the queues at your back

feeling so awkward

and very very slow

you’d love to shout out

and let everyone know

“I’ve Parkinson I can’t help it

I’m not what you see

I’m really quite clever

this is not the real me”

and just because you don’t see

me shake or sway

it’s cause the meds are

keeping those symptoms at bay

but it’s the ones inside

that no one can see

that are slowly stopping me

from being me

so if I look around

with a silent plea

please sense my need

and help me

for that parki pack

weighs heavy on my back

and like a clinging vine

It will grow in time

but keep looking for me

beneath that weight and clutter

i’ll be there amidst the

shakes, the swaying and the stutters

the indecisevness, anxieties,

the trails of unfinished tasks

the endless sleepless nights

and that miserable parki mask

and I’ll be laughing like I used to

and carrying the same dreams

I will still be that same person

I will not be what I seem ………

37 Replies

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  • This Poem is an absolute Gem, and should be sent to every Neurolgist that treats patients with PD.

    Thankyou for the pleasure of being able to read it.

  • Thankyou ousted I appreciate your reply very much...glad you liked it

  • I absolutely agree with owdsod. This is one of the most moving poems Ive ever read about the grip PD has on our lives and I think GP's should get it as well as neurologists. Thank you.

  • Amen to that!

  • Inkyorian...thankyou I wrote it two years ago but never had the confidence to show anyone only my family. Poetry can be a very personal thing so I appreciated very much your reply . Thanks again

  • That's just beautiful and so aptly describes what we face. If only others would read it too perhaps they'd realize what we go through.

  • good one! thanks

  • A really great poem, Marmaduke. Really great. It pretty well sums up what we all are living through. thank you for printing it! And God, please look out and bless all of us fighting "Parki".

  • This is brilliant it, it totally sums it up. Thank you I will pass this on to people who say to me "your not shaking you look really well"!!! They have no idea.

  • You summed it up quite well for us PD ers. It is a constant battle for all of us and we are in this struggle together ---may we persevere and defeat this insidious and invidious disease.

  • Thanks all of you. I'm really happy you liked it and much appreciate all your comments....

  • Thank you for this. It describes what it means to have Parkinsons so much better than I ever could. I am going to show this to my family in the hope that they will have a better understanding of what it is like to be a member of the Parkies clan.

  • Thankyou court. I don't think any other disease has such a mixed bag of symptoms. I tried to encompass them all at the time to give my family an insight of what having the disease was like but as we all know the symptoms are ever changing, ever increasing and unless you have the disease the full impact can never be completely understood. I wrote one more reflective piece at the time after spending a few hours in the garden. My favourite pastime. I'll put it up for anyone who may like to read it sometime.

  • It is probably true that no two people have exactly the same symptoms, Some days I can almost, but not quite, forget I have Parkinsons. But the next day I feel terrible. It is very hard to live on a knife's edge. I look forward to reading your other piece.

  • Awesome poem. I loved it. And sooo true.

  • thankyou jocee

  • VERy logn and v moving

    dont give up yhoru wiritng

    lool JILL

    :-)

  • thankyou jillannf6....i love writing especially poetry, but funny enough i think it started after my pd diagnosis. they do say when one thing is taken away you recieve another. or maybe you just don't know what your capable off until you have reason to say something. i felt at the time that no one had an idea of what living with pd was like and i just needed to get it all down on paper. once i started the words just flowed. thanks again everyone for all your kind comments

  • Absolutely love your poem, Thankyou for sharing your words. It speaks so well of what our bodies go through.:-) so well written...

  • Absolutely brilliant!! And i see myself. in every line.....

  • There is not much different I can say or add to what has already been said but I had to say Thank You -

    Although I'm not quite as far down the road as you are you have described many of the the effects of PD and exactly how I feel about them It's a sad fact that the only people who can really understand the impact of PD is someone else with PD - even our closest families and fiends do't really understand.

    I think Owdsod s right but don't stop at Neurologist start with copy to Downing Street and the Minister for Health and work down to the people who have face to face patient contact

    You have a rare talent and I guess its an outlet for the frustration and anxiety which go with PD - don't stop and please let us see more

    Best wishes

  • Blondir...thankyou for reading my poem and taking the time to share your thoughts on it. I'm so glad you liked it. It was wrote with such good intent at the time but has been laying in a draw this long while. Apart from "reflections" the only other ones I've written are humorous ones based around friends and neighbours that probably only they would understand. But you have all given me such encouragement that I will continue to write.....

  • Hi Marmaduke123

    By some strange quirk of fate my next door neighbour has PD -- in fact it was she who told me to go to my GP and demand to see a neurologist - so an hour ago I printed a copy of your poem and took it round to her - we read it together in tears . It is powerful writing when everyone who reads it can connect with it - a gift not to be wasted - I'll be looking out for more

    Best wishes and Thank you

  • Hi Marmaduke 123,

    WOW! You have said it all. Thank you for every word of it. And now, a favour please. May we have your permission to show it to others who are not on HealthUnblocked. For instance, we are having a Soup & Sweet Fund-raising event in May when Parkie people will be talking to non-Parkie people about what it is like to live with this wretched disease. It is amazing how many people have no conception of what Parkinson's is like and assume that it is an old age problem. As I wrote at the beginning, your peom says it all.

  • Thankyou esrob.....my original intention when writing the poem was to get out there the numerous vast diverse things that were happening to me. My understanding of pd before it hit was that of a singular disease with two symptoms attached - shaking and an inability to walk straight....but I have experienced everything from not being able to move my arms at all through to restless legs, the inability to sign my name, anxiety, constipation, involuntary movements, falling asleep at innapropriate moments, nausea etc.....to many to list and I thought to myself this is ridiculous that people have not been given this insight for what's becoming a fairly common illness. I felt driven to get all this on paper during one of my sleepless nights with the thoughts that if the people that knew me listened to what I was telling them that it was a start and maybe at some point I would send it to a pd magazine. And then I thought well only people with pd would read it would it serve it's purpose.? Another symptom, undecisiveness. But I see a positive affect now as you are the second person to ask can they use this poem to enlighten people. So, sorry for the long reply and to get back to your question can you use my poem, yes I would be delighted and thankyou . I hope it helps the cause .best wishes.x

  • Thanks so much for giving us permission to read your poem as well! It's an amazing piece. You should get it published!

  • Shalom from Israel

    Feel like it's a must to read your poem.

    I'm only in the beginning but it gives me the understanding of the journey .

    Thank you .

  • Cead mile failte yossi555....lovely to hear from you. Thanks so much for sharing your thoughts on me and parki. Glad it helped in someway. Of course Everyone's journey differs, I suppose depending on the inherent genes and how the disease reacts to them . But thankfully there's a good many common symptoms that we all share and that we can talk about or else we'd think we were going mad . Ha ha! ..I've even given up on the clutter, don't even bag it anymore just walk over it and still there's not enough hours in a day! So funny as it's the complete opposite of the way I used to be. But think I'm getting used to it. Can't say the same for my hubby though but at least we're still laughing . Take care and Keep in touch x

  • just joined the group tonight and read this. It made me feel I'm at home instead of feeling alone. Diagnosed 10 years ago aged 39. Thank you for writing this.

  • That's a lovely thing to say wobbley thankyou...welcome to the website. Only a year since I joined myself but I feel I've got to know a lot of lovely people from whom you can learn a lot of things.So never feel lonely someone will always reply to you.So young for you to be diagnosed with pd, I was 47.

  • I know it's been awhile since you posted this, but this is perfect. I will be showing this to everyone I know that

    doesn't understand. Thanks!

  • thankyou laglag for your kind words. it was such a lovely surprise to hear my poem is still being read. Many thanks for posting x

  • Thanks for bringing this back Laglag

  • You're welcome GymBag. I wish I was so talented in writing poems.

  • thankyou gymbag i appreciate your comment very much...

  • Marmaduke

    I was looking at inkyorion's profile and saw what she wrote after reading your poem. So I had to read it too! Thankyou, loved your sentiments and more with each verse.

  • Hi hi

    koi ..thank you for taking the time to respond to my poem ...I'm so glad you took something from it. It's a lovely feeling to have positive feedback especially after so long. You are very kind thank you again. ."

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