Archive for June, 2011

I’m now back to crawling on the floor.
Freeze and can’t move to adjust my muscles to get comfortable.
Muscles on my left bum are flat when medication is low so they don’t support me enough to keep me sitting up, standing up etc.
I’m extremely ill at this moment in time and wish only for freedom from pain and struggle whatever it takes.
I want to be at peace with myself and the universe.

Ruth Nicholson

Struggle with PD symptoms
4.30 pm Struggled continuously to regain a comfortable position in vain.
Agony and torture.
Involuntary spasm of mainly leg and gluteus and neck muscles, also affected spine and mechanisms of swallowing. Breathing erratic.
Balance nil.
Dexterity, manipulative skills, speech etc affected.
I lean to the left and shuffle when walking.

Arms weak, almost useless.
Freeze and become statue like.
Cramp of toes and legs chronic.
Sleep very little exhausted.
Nauseated.
Constipated.
Retention of urine at night.
Tooth decay, rapid tooth decay (side effect of Clomipramine).

Ruth Nicholson

It feels as though I’ve been put on the rack
So tight are the muscles in my limbs and back
Joints painful because they’re over stretched
Cramped aching muscles, make one feel wretched
Feeling useless, vulnerable, angry, frustrated
So desperately lonely, and so isolated
So alone in this illness, how to explain
Describing the agony is beyond me, words fail me
I think sometimes the solution to this problem must be
To sleep forever, not to wake and to suffer
To slumber in comfort, relaxed, blissful relief
Happy and peaceful, no more worries and grief

Ruth Nicholson

PD chose me, I didn’t choose it
No one in their right mind would choose to be ill
But it happens sometimes in spite of our will
Who would choose to be disabled, like living in a sack
Well, there’s always the exception, like the hypochondriac
I think that even they would shrink from having PD
Cos if your incontinent you hardly dare sneeze
So embarrassing to blot ones copy
Or dribble in a way, that’s smelly or soppy
To lurch in a manner to one side or another
To shuffle like a sand dancer, with one foot in the gutter
Fine tuning gone, digits out of control
Slamming down on the loo, disappearing down the hole

I can’t decide now, how fast or slow, I move
Can’t enjoy dancing can’t get in the groove
Feet and arms do as they please
What’s the matter, did I freeze
Like a statue, suspended in space
Like an alien not in the human race
Can’t tap my heel down on the floor
Got no rhythm, and what’s more
When I want to dance it doesn’t happen
But PD takes me over, and I’m stomping then I’m clapping
Never when the time is right
As for the romantic side of life, it’s Good Night
Can’t relax enough to cuddle
Cos my muscles tighten, like some jigsaw puzzle

Can’t stride forward or even hurry back
Coordination’s what I lack
Please don’t stare or sympathise
Cos now I’ve come to realise
Dancing in the ballroom fashion
Can’t be done well not with passion
So I’ll pretend that all is well
And come from hiding in my shell.

Ruth Nicholson

A pain in the neck is what I’ve got
The trouble is it hurts a lot
Rigid muscles keep it taut
My neck won’t move when it ought
There seems nothing I can do
To make my muscles work or move
I feel quite sick with the pain
Believe you me its quite a strain
Can’t stretch or bend as normal now
My spine I think’s forgotten how
The nerves which run down both my arms
Are causing me to be alarmed

They hardly work, quite weakly, so
My hands and fingers grasp too slow
In fact sometimes they don’t respond
To handle things seems far beyond
What’s possible for me to do
Frustrating in my point of view
Can’t fasten buttons, buckles, zips
Can’t clean my teeth, or move my lips
I feel as though I should be dead
My body’s gone but not my head
My legs are following the trend
They don’t move either, won’t stretch or bend
My spine is rigid, painful, failing

Its so depressing, no good wailing
Got to manage while I can
I’m neither good to God nor man
While in this state of hopelessness
What an end to life, who could guess
That tragedy was in my path
Had I know this, I’d never laugh
At others, fate chose should suffer stress
And end up in this utter mess.

Ruth Nicholson

The toileting seat was grossly uncomfortable and I was sitting lopsided with my spine curved and neck looking to the left, very painful indeed.

My legs and bum were harshly pushed onto the loo where the seat nipped the back of my thighs causing long bruises. Adjustment may be in order or a notice put on the wall to say, ‘Careful this seat may cause bruising by nipping the skin when being pushed onto the loo’.

Ruth Nicholson

I just want to be comfortable
I just want to be comfortable enough to get on with my life, e.g.
Go to the loo
Get dressed properly
I’d love to attend meetings, parties, birthdays, all family special occasions
Watch the television
Draw, write
Anything rather than struggle with PD symptoms and pain
If you would like to swap to see what it feels like, I’m your person.

Ruth Nicholson

Some bossy people presume they can dictate to the vulnerable or ill or weak in society
I would never try to force or dictate to another free human being to make them do my will
There are certain types eg the medical profession in particular
Seem prone to do this since they are used to giving instructions to staff and patient and expect everything done to the letter

Dictation, some are worse than others I fear
You must do this or that precisely, my dear
Follow directions to the letter
Only then can we make you better

When we’re ill making decisions isn’t easy
But we’re free to decide yes or not as it pleases
Don’t allow anyone to completely take you over
Make us do their bidding
Who do they think they are, and who are they kidding (Mr Hitler)
Circumstances at times make us vulnerable
Surely no one should think they have the right, not if they are honourable
Our rights must never be violated
We are all free to do and think for ourselves, should be accepted not berated
Laws are made for all of us to follow
There are times when life seems so hollow
Its then we need a new path to follow
In our mutual interest we need to cooperate

Some folk would take over without discussion or debate
So what I say to them is on your bike don’t be a bully
Full of hate and never will I praise your actions or call you a mate

Ruth Nicholson