Parkinson's Movement
12,364 members10,987 posts



two weeks after being diagnosed with Parkinson;s Disease I was also diagnosed with a rare neurological disease called "Cramp Fasciculation Syndrome". My Specialist, although very knowledgable' seemed thrilled with my disease. He continually asked me to explain what I was feeling physically but I just could not seem to have the right words to make him understand, so I worte it in a poem...


My life is chaos,

a losing of self

pain is taking control,

accompanied by anger

and tears.


I never use to cry.

Crying shows my

weak side.

I don't like feeling,

I'm all outside myself.

My body won't

let me be.

Just moving through my life

one step

at a time

causes my legs to cramp,

my muscle to twitch,

limbs throbbing as if

they've been deprived

of the air they need

to breathe.

Mornings usually full of

spiritual thoughts,

meditation and

yoga stretches

now only bring

self doubt, loathing.

A filling up of negativity

I've fought my whole life

to avoid.

My hip on which I carried

my precious child

screams with pain,

with every move

it travels across my back

in a tightening squeeze

pushing up into my right flank

until my side is on fire.

Reminding me

every second,

every minute,

every hour,

of every day

that my grandchildren

will only be allowed

to walk beside me

not carried by me,

or attached to my neck

with monkey arms.

The stress,

the worry,

the unanswered questions

cause my neck to hurt

and my shoulders to pinch.

My left leg goes numb,

just out of the blue,

a lifeless limb.

The minutes tick on

as my mind

tries to reason

for the fix.

There have been doctors,

and doctors,







I am so tired.

I am no longer myself.

I cannot be myself.

I am lost.

There is something

wrong with me.

Something my body

won't easily share.

It gets so hard,

so hard sometimes,

so hard

to go on.

I miss laughing.

I miss me.

The artist,

the writer,

the lover,

the mother,

I miss laughing.

I am not a lifeless,

pain filled,

middle aged woman

who has to hire people

to mow their lawns

and help them shop.

I do not want my friends

calling me every night

just to make sure

"I feel Okay"

and is there anything the can "do".

I have always been

the caretaker.

It's just too much sometimes.

My mind wanders

strays off the road,

sees that drop off

to no where

offering a way to leave,

to leave this life

of pain.


my morals,

my deeply instilled

love for life

keep me grounded

on the pavement

that delivers me home.

But the shadows

grow close,

they're whispering

in my ear.


4 Replies

Parkinson's sucks.

Come to this site when you feel down. We are your friends.



You have a sister here.


Thank you for sharing with us.

I have a difficult time writing what I am feeling. I enjoyed the way you can express yourself, can't think of a better word...not happy with the fact you are feeling bad.


Blessings to you JupiterJane and everyone else on this site. We are traveling this road together and it is wonderful we have a place to share our feelings.


You may also like...