Me and my Parkinson's - In My Own Words


Me and my Parkinson's -  In My Own Words

I wake in the morning

And all seems well

But within minutes

My body is in hell

I take my medication

And lay very still

Trying to prevent him

Doing as he will

As I lay

My twisted muscles relax

The pain is unbearable

For he is twisting my back

I battle him on my own

For I have no one

Except this disease

I wish to disown

The pain has gone

I can get out of bed

But he will return

I know it in my head

I may look calm on

The outside

Yet I am trembling

On the inside

Every three hours

I take my medication

But I know he is there

Waiting in anticipation

My speech becomes slurred

I cannot walk straight

You see he was there

Lying in wait

Again he will do this

Sometime through the day

Make me lose control

Of my own body he may

My head and my torso

Belong to him

They move and sway

At his every whim

But he will never leave me

We have been together six years

I just take the medication

And try to hide my tears

I carry on with my day

The simplest task tires me out

When I cannot do what I want

Makes me want to scream and shout

I feel all alone

I cannot find a lover

But they will not come

While I am with another

He has robbed me of my family

My job my wife

But I am determined he will not

Rob me of my life

I have a son

But we are apart

So near yet so far

Always in my heart


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27 Replies

  • Beautiful poem..one we can all identify with but thankfully I have my husband and children alongside..I wish you all the best and thankyou for sharing those words which although very poignant, was lovely to read. Keep on writing you have a gift x

  • You are a very loving wife and your husband is very lucky. My wife says the PD has changed me and that is why she left me, but thinking about it I have not changed.

    I believe she just did not want to deal with this.

    First poem I have written whilst having a Dystonia episode.

  • I am so sorry your wife could not handle PD. And I agree, PD doesn't change our essential selves. Also want to say that often it's women with PD who lose their partners or spouse but your story shows the opposite is true. In the support group we got to, we see several wives who are devoted (not the right word), who can stand by their loved one, despite the challenges. This is not how we wanted to live our retirement but gratitude and humor (and commitment and character) is what gets us through.

    I hope you find more people who will stand by you.

    I also think your poem needs to be published.

  • well I must say, that my PD had kept all men away.............. but I just think it is their loss not mine. where do you live Meshakin???? :-)

  • I live in South Yorkshire bout yourself ?

  • south of Tucson Arizona.... a little too far away........ ::-)

  • I hope your family did not abandon you because of your Parkinsons.

    The poem says it all.

    Don't let it defeat you.

  • If they abandoned you because of Parkinsons they were not worthy of being called family. I have found after 15 years of this disease you mind and trying not to think too much about it is the best treatment. You can try and not tink so much about it, do as much each day as possible. Good Luck

  • My son lives in London but I believe my wife left because of it

  • I hope you find or are finding people who will stand by you.

    Many days I find it hard but I tell myself, 'this is my life now.' And I say, "if it were me who was ill, he'd do this for me." I think he would.

    You don't deserve this but does anyone deserve misfortune.

  • No one deserves it, we have all said it why me.

    I was a Paramedic for 23 years caring for other people I would have gone to the end of the earth for my wife but she won't for me.

    Friends seem to be keeping an eye on me more than my family do or am I being paranoid I ask myself !!!!

  • I think there's a lot of grief work people do around PD and also getting older. You got the 'getting older,' PD and a wife who left. There's no way we can pick ourselves up by our bootstraps, but we can connect with others, make new friends, and maybe even find a new partner, if that's what you want. Maybe a therapist can help.

    Who knows?

    "a real friend walks in when the rest of the world walks out" is a saying I like. Those that stand with us, who watch over us, or keep in touch are 'real' friends. Does your son keep in touch? Ours lives 1000 miles away. Still, he could go to 'children of...' support group. Someday I'll suggest that to him.

    Have you written other poetry? Writing for emotional healing is a great way to move on. And in the case of the poem you share, it's very meaningful to others. Maybe subscribe to Writer's Almanac, a free, daily message on writing and writers, with a poem read aloud every day.

  • I like it. Thank you.

  • Your poem is beautiful. I am sad to hear that you face this all alone. I can't imagine what that must be like. Have you sent a copy of your poem to your son? Perhaps he needs to read your words to know what your life has become. Keep writing and sharing your thoughts ......thank you.

  • Thank you Peaches.

    I live on my own now got a council bungalow.

    First poem I have written whilst having a Dystonia episode probably not write one again.

    My son knows but he livesinLondon x

  • Thank you all my son lives in London my profile photo is from his

    Civil Partnership Ceremony and I had a fabulous weekend tiring but good.

    I believe my wife left me because of PD, she says not.

  • Thank you for your words but we are definitely not getting back together

  • i love your poem it is exactly as i would describe dystonia if i were as talented .but since im not i just had dbs two weeks ago.best thing i ever did to kick parkinson in the teeth . i feel my husband was getting very tired of me dealing with this old disease.so we will see now

  • the poem was beautiful. i guess it isn't something i think about to often. but i couldn't write a poem any how.

  • First poem I have ever written and while I was having a bad Dystonia episode, words were just popping into my head lol

  • maybe i will give it a try. but you sure did a heck of a job writing this one. thanks for sharing.

  • well said. I'm lucky I shed my husband before I got symptoms. I'm alone but I cherish my freedom. (knock wood!) Little by little PD wants it, but I'll go down with a fight. (raise a fist :)

  • Can relate to your poem. At the moment I have been lucky with a supportive husband. I find friends have changed towards me, as I can,t do things with them we used to do. Family try to ignore the change in me, also they don,t visit much.

  • Yea same here but some friends have been better just a few and are more concerned than family I just don't understand it really.

  • P, from Parkinson

    P, from Parkinson - said the doctor

    P, from "is it Possible?" - I asked

    well, Probably, that´s it - he repleid

    that Piss me off, well, Pardon me

    what a Pity!

    what a Problem!!

    but, Perhaps, when the worst Part is Past

    you have the Possibility to Participate

    take Pleasure out of this Poem

    it has the P, from Parkinson, all right

    but not a single P, from Pain

    make the Present all yours, my friend

    and Put in it what you Prefer.


  • That is very nice. For me writing the poem let some steam off got rid of maybe a little anger I don't know because I have accepted PD and come to terms with it, some people cannot do both.

    It let me express not just how I was feeling but how so many of us/ you are feeling in a. Way that could not be said verbally. One of my friends said it was Beautiful, Sad, Honest and True all in the one poem I feel that I had to share it, it is important that others who are not PD understand because I don't think they do :-) x

  • I so admire your ability to put it into words...my husband has PD, but his stages are very mild, so far...when I read your words, I realize, with gratitude how lucky he is....right now. I was very shocked when he was first diagnosed, ( three years ago...he is now 76) and cried my heart out...not in his presence, of course, but right then I made up my mind that the problem was not his alone, but ours, as a couple....we deal with it ,day by day, I helped him find a doctor, helped him to learn to schedule his meds...and etc. I will be by his side, as one, for as long as I am able....if our luck is good...his case may not get to an acute degree before we are both called by our Maker. Good Lord willing. Amen.

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