The truth of today - 40 years on!

I have written a poem. It’s not positive, its not about how good life can be - its about my life at the moment which is very emotional and difficult. So please dont read it if you dont like the subject. I hope that it lets others know they are not alone.
I am me!
I am what you see!
But is this the truth of the matter?
I have definitely become fatter!
My hair has changed colour from red to multi shades.
I live in a Parkinsons haze.
Only a handful of people know how I have changed.
How my brain is like an old telephone exchange,
Pulling wirings out from one connection.
And sending them in the wrong direction.
Yet my body thinks its all okay,
So I mutter, stagger and sway.
I don’t understand what people say to me.
I cant get the response normalised and free.
I have always been shy.
I am very sensitive and easily cry.
I never finish projects, they get put away for a later date.
Brown and official envelopes sit unopened – I don’t want to know my fate!
I cant travel far without organising everything down to a tee.
All because my bladder malfunctions and a big problem is wee.
I forget – everything – especially names,
Guess the name is a popular game!
Getting dressed or undressed is such a feat.
Especially trousers and socks on the feet.
Sometimes I am filled with fog,
My feet become stuck in a sticky bog.
I cant think, I can’t make decisions,
My eyes play up and I get double vision.
So I am me – its clear to see – I am a conundrum!
Its not all bad, it can be fun,
I grab at opportunities to escape,
to feel the pulse of life, dumping my parkinsons cape.
But I am me and I am her,
With this poem they concur.
Then lets not forget the menopause!
How it hit me, floored me and made me crawl.
It upset my medications, it upset the ventilation.
All it gave me was ramifications,
And a load more manure than before,
Luckily my husband manages to put up with it all.
So I am a complex creature – I’ve only touched the surface here.
I’ve tried to make it all clear,
That Parkinsons is not just a shaking hand or a frown on the face,
It is a life torn apart and put into the egg and spoon race!

The Breeze July 24


This is great Breeze and you did what I sometimes do ie give a warning before folk get into whatever I have writtenso so they can choose to read it or not. I personally see positivity as the main tool in my box to manage my Parkinson’s but this is not always understood. It’s not about, to use your phrase, ‘… how good life can be’ I don’t look at life through rose coloured specs and I am only too well aware that there may well come a time when it all catches up with me and I will see my life much as you have written. No coping strategy comes with a 100% guarantee, and some successfully manage their Parkinson’s by raging againt the hand fate has dealt, others will constantly read the latest news for any sign of a cure. I recognise the truth in much of what you have written and it is written with a powerful voice that is difficult to argue against. I have often said here on the forum there is no right or wrong way to live with Parkinson’s only the way that suits the individual; to my mind this is a powerful piece of writing which records both eloquenly and honestly your view which you are perfectly entitled to do but I did notice that in the midst of all you have written about the complexities of living with Parkinson’s, a glimmer of positivity does manage to escape ‘…It’s not all bad, it can be fun…(and) luckily my husband puts up with it all…’ An interesting and thought provoking piece, I hope you will write more.
PS In case you are not aware if you want to read a whole raft of views on living with Parkinson’s, and all aspects of life in general which together probably cover every emotion known to man (and wman lol) have a look at the creative corner and if you want to see some evidence as to how a moment in any given day can turn that day around have a look at Today is a good day.

Thank you Tot for taking the time to respond to my poem. I wrote this poem to catalogue how things have changed and because I wanted people to know the truth about living with PD. This last year has been especially hard – emotionally and physically and the PD in my body has had a party.
I am a very positive person normally – I believe it has been my positive thinking and actions that have kept me going over the years. However small the event or achievement is – it feeds the brain with a will to live. I have been knocked to the floor (not literally) so many times but I always pick myself up and start again. I am very determined to fight my corner with the medical profession and use Reiki Healing and physio to help me with this,
However because PD has had a party recently, it has allowed the negativity to get a root system grown - a root for realisation of my situation, a root that makes me acknowledge how precious time is, a root that drains energy, a root that makes me scared and so on. Thus the poem.
No one really understands – Life doesn’t stop because I am ill.
I have written a lot about the illness and other matters. I used to write on the forum a great deal but that was about 20 years ago. I write a great deal of poetry (well not so much these days) – I use the pen to get my thoughts, ideas and feelings out of my head and down on paper. Well, it’s the keyboard being used, I cant hold a pen for long enough. So thank you again ,

I can emphasise with what you write absolutely. I am 14 years, at Christmas it will be 15 years past diagnosis. I am doing well at the moment but I can’t help but sometimes think that I am borrowed time - I didn’t expect to be this well this far down the road. The only certainty for anyone with Parkinson’s is that, to borrow your phrase, at some point Parkinson’s will have a party with all the implications that brings. I hope you will start to post some of your writing on the forum again. You painted a very graphic picture and almost brutal in its honesty. But you gave people fair warning so they don’t have to read if, but such posts can help some see their own situation from a different perspective. Finally I would say you may be feeling like a ton of bricks has hit you recently, but you are still here, keeping going - Parkinson’s may be having a party at your expense at the moment, but you are still at that party. Parkinson’s may have scored a few points, won the odd battle - but definitely hasn’t won the war.

Thank you for the poem Breeze. It really does sum up one’s experience of this disease. It is so true that everybody’s Parkinson’s disease is different but your emotions and battles are very clearly portrayed in what you write.

I am about 10 years into my journey with Parkinson’s. I find it a very lonely journey as although people sympathise it is so difficult to empathise when the whole spectrum of symptoms and difficulties is so great.

My wife is wonderful and supports me totally but sometimes I feel so sorry for her. This disease not only drains me emotionally but all those close to me.
Sometimes I fight the disease and try to drag myself in a different direction from the path it wants me to take. But most if the time I, as it were, sit in the passenger seat and allow the disease to take me to places of suffering only know to it itself, I think you will understand.
I do not like what I read that you wrote because I hate to think of the suffering you obviously experience but I if you cannot tell the truth here then where can you.
So thank you and I wish you many little victories.

Hi Breeze,
Wow that was really stunning.
How you managed to encompass all your feelings, hurt, happiness, joy, tears, laughter in that poem was simply amazing.
Thank you.
:slightly_smiling_face: :upside_down_face:

Thank you Drew 1 for responding to my poetry. I did hesitate in making the decision of posting it - I am a positive person and work hard at maintaining a positive mood and this is the person that most people see. That is only half the story.I think it is important that the truth about the illness is known - especially the mind problems. It is a very lonely illness, you cant escape it and our partners have a lot to cope with. Friendships are difficult to keep to, I have found, because I forget to keep in touch! Thank you for responding - it makes my decision worth while. Breeze

Hi Clive V. Thank you for responding. I seem to have the ability to write poetry - it always rhymes and the words just come to me. Its good to hear you enjoyed it. Thanks