Hi, I was thinking about all those loved ones who have just spent Christmas in nursing homes and got to thinking about how to explain Parkinson's to someone who hasn't seen it yet and came up with this poem.
I wrote this at 4am this morning. When I went back into the bedroom I was in a flood of tears, and Don held me close.
An introduction to Mr Parkinson (disease)
I may not move I scream, I fret, I ache inside
I may not speak I cannot shake him off
But in my heart I know he’s closing me all down
Your company I keep I hate him, hate him, cannot move
I can hear you, I can talk This last despairing cry is felt
I reply but you can’t hear me Along my veins and motions
I am trapped inside this shell I feel your kindness closing in
Please help me; I am here I need your hand, your compassion, your You
I feel the things I always felt But not your pity, Hear me now
The joy, the sun, the laughter Your compassion I can cope with
I do join in as much I can It’s the turn away, your head, your manner
It is this shell I cannot move These are what wound me now
I try to do the things I can I try so hard to be of use
And despair of those I can't I know I cannot get there
I love to be involved and needed But if I stop and give in now
Even though I cannot smile or frown What then would my role be?
I am me inside this shell Sometimes I can, sometimes I can’t
I haven't changed my years I’ll help you with me when I can
Your brusqueness wounds me in my soul I need to feel that I am needed
While inside I drown in tears Desperately
I know you mean well by your smile You can help me, do not shout
But the me inside is crying My muscles shut down more
I cannot help you lift me up Just accept, as I endure
I feel like I am dying This cruel Parkinson’s “On” and “Off”
This Parkinson's is like a curse
It binds me in its fold
But sometimes, just sometimes
It can release its deadly hold
And then I can a small walk make
A smile, perhaps a chuckle
I feel alive, but then He comes
And shuts me down - Noooooooo
For Don with all my love, Jocelyn
Written: Saturday, 6th December 2008
I wrote this at 4am this morning. When I went back into the bedroom I was in a flood of tears, and Don held me close.
An introduction to Mr Parkinson (disease)
I may not move I scream, I fret, I ache inside
I may not speak I cannot shake him off
But in my heart I know he’s closing me all down
Your company I keep I hate him, hate him, cannot move
I can hear you, I can talk This last despairing cry is felt
I reply but you can’t hear me Along my veins and motions
I am trapped inside this shell I feel your kindness closing in
Please help me; I am here I need your hand, your compassion, your You
I feel the things I always felt But not your pity, Hear me now
The joy, the sun, the laughter Your compassion I can cope with
I do join in as much I can It’s the turn away, your head, your manner
It is this shell I cannot move These are what wound me now
I try to do the things I can I try so hard to be of use
And despair of those I can't I know I cannot get there
I love to be involved and needed But if I stop and give in now
Even though I cannot smile or frown What then would my role be?
I am me inside this shell Sometimes I can, sometimes I can’t
I haven't changed my years I’ll help you with me when I can
Your brusqueness wounds me in my soul I need to feel that I am needed
While inside I drown in tears Desperately
I know you mean well by your smile You can help me, do not shout
But the me inside is crying My muscles shut down more
I cannot help you lift me up Just accept, as I endure
I feel like I am dying This cruel Parkinson’s “On” and “Off”
This Parkinson's is like a curse
It binds me in its fold
But sometimes, just sometimes
It can release its deadly hold
And then I can a small walk make
A smile, perhaps a chuckle
I feel alive, but then He comes
And shuts me down - Noooooooo
For Don with all my love, Jocelyn
Written: Saturday, 6th December 2008