I have been asked to speak at a seminar at Curtin University's School of
Nursing here in Perth, Western Australia.  The seminar is aimed at raising
the awareness of health professionals to the needs of PWP and it is my task
try and give the PWP's perspective.  I am posting the text of my
presentation to the list as it maybe of use to others as a template. If
anyone wishes to adapt it to their needs,  please feel free to do so.

Dennis


PD – An insiders view

(Ask them to clench their hand into a fist and hold it like that)

I am Dennis Greene, and in case it isn’t obvious I am a PWP.

I am married with two daughters aged 18 and 11, and I was diagnosed 11 years
ago when I was 37.  4 years ago at the age of 44, Parkinson's forced me into
early retirement from my job in retail management.  In April 1997 I
underwent a pallidotomy at Sir Charles Gairdner Hospital here in Perth  as a
means of combating the debilitating dyskinesia I was experiencing.

My task today is to try and convey to you something of what it is like to
experience PD.   I must stress that not for nothing has PD been called a
designer disease.  No two PWP have the same symptoms and everything
I say will be true for some PWP but not for others. Even what is true for
me today may or may not be true tomorrow.

Another thing to keep in mind is that in the early to middle stage of PD,
medication can, and for most of us does, reduce the severity of symptoms.
It is as the disease progresses through late middle stage into end stage
that problems with symptoms and side effects start to occur.

So let’s see if I can throw some light on PD’s terrible triplets, tremor,
rigidity, and bradykinesia.

TREMOR
I am what is sometimes referred to as a B type PWP, which means I don’t
experience much tremor. It also means of course that I don’t have PD’s one
great visible signal.  Consequently I keep coming up against members of the
public who query my diagnosis.  I can’t say that I blame them, I questioned
it too at first, and on the very same grounds.  But over the years I have
spoken with, and corresponded with, many whose tremor dominates their lives.
They find themselves frustrated at not being able to perform the simplest
tasks.  Meals, for example, can become a nightmare.  I have heard tales of
food flung across restaurants, of drinks ending up on shirtfronts, of
cutlery redistributed at random across the table or the floor, or used to
beat out an involuntary, syncopated rhythm on the plate. Even as mild a
tremor as I experience can result in a sort of halo of scraps around my
plate. And that little lot is just mealtimes.  Still to come is every other
thing you use your hands for; shaving; putting on makeup; turning the pages
of a book; scratching an itch; signing a cheque; touching a loved one.
Parkies are a resilient lot and many of the stories are told with a
self-depreciating humour and a fine sense of slapstick.  But the sad fact is
that these are not occurrences in a 90 minute movie, these are the
relentless, all pervading, day in, day out reality of many PWP who laugh
that they may not weep.

Because it is so visible, tremor is the cause a many a PWP avoiding what
they see as the embarrassment of social occasions.  And it is embarrassing.
If anyone doubts this I invite them to “give” themselves a pronounced tremor
in one hand  - something like this (DEMONSTRATE)- and spend a day with it.
Go shopping, discuss your purchases with the shop assistant, meet with a
friend in a public place for coffee and conversation, catch the eye of
strangers in a queue, sit next to someone on public transport or a park
bench; and see how you go.  Good luck.

Speaking of reproducing the affects of PD are any of you still clenching
your fist?  If so please stop.  Concentrate on how your hand and arm feel,
and then imagine how they would feel if the clench went on for hours at a
time.  Welcome to the world of the rigid.

RIGIDITY
There seems to be a perception that PD is painless.  This has not been my
experience.  That “interesting” cogwheel or lead pipe effect that health
professionals love to detect in my joints becomes for me taut muscles that
not only ache of their own accord just as your arms and hands probably do,
but also causes poor posture, with all of its attendant backache.   Rigidity
also robs me of true relaxation.  I can remember what it was like to sit
back in an armchair and feel the tension drain out off my body; I can
remember the sensation of feeling my limbs go floppy, but I no longer
experience it.  Instead, when sitting on a chair now, I experience the
curious sensation of pulling away from the chair even as I sink into it as a
dead weight.

This apparent contrast in sensations is the result of an overlap with the
third leg of the PD tripod, bradykinesia.

BRADYKINESIA
Bradykinesia or slowness of movement is like one of those little Russian
dolls that nest inside each other.  Its effects just keep on coming. They
include:

- The inability to start a movement (freezing)
- The slow execution of a movement
- The slowing down of an already slow movement until it stops and a freeze
   ensues
- Reduced arm swing
- A shuffling walk
- Difficulties with speech
- Difficulties swallowing
- Bowel and bladder problems
- Reduced body movements
- Reduced blinking
- Reduced facial expression.

You will be happy to hear that I have no intention of taking you in detail
through the whole exciting range of symptoms.  It takes little imagination
to empathise with the balance problems of someone who moves his feet two or
three inches at a time, and like the clenched hand it is easily reproduced
by any of you who wants to.  I’ll touch on swallowing problems only to say
that drooling is yet another dampener on socialising, if you will pardon the
pun, and as the bowel and bladder problems experienced by PWP are hardly
unique to them  I will bypass them here even if I can’t in life.

What I would like to look at are some of the problems associated with
freezing, initiating movement and slow movement itself.  In particular I am
going to concentrate on why we PWP seem to have such trouble at times
responding to the simplest request.  The brother of a friend of mine
complained to me once that my friend, a PWP of many years standing, wouldn’t
help him with a carpentry project.  “All I want him to do is stand there and
pass me things” he said.  And on the face of it he has a legitimate
complaint. For the Person WITHOUT PD what could be simpler.   Glance around,
identify the screwdriver, pick it up and pass it over. Easy.   Not so for
your PWP. That simple request is in fact a litany of things to do because
each step of the way requires an individual decision. This simple 4 step
process becomes something on the lines of:

- Think about request
- Decide to respond
- Decide this requires you to look for screwdriver
- Instruct yourself to move your head (or perhaps your whole body) to the
left in order to look there for the screwdriver
- Instruct yourself to move your head or body to the right in order to look
for the screwdriver
- Look at each item in turn and decide to keep looking because it isn’t a
screwdriver
- Find the screwdriver
- Stop looking (this doesn’t need a command – stopping comes naturally)
- Instruct yourself to reach towards the screwdriver
- Instruct yourself to stop your hand over the screwdriver
- Instruct yourself to lower your hand onto the screwdriver
- Instruct your fingers to close around the screwdriver
- Instruct yourself to lift the screwdriver
- Instruct yourself to turn towards the carpenter
- Instruct yourself to walk towards the carpenter
- Left – right – left -  right - left …………….
- Instruct yourself to hold the screwdriver out to the carpenter
- Instruct your fingers to release the screwdriver
- Instruct yourself to turn away
- Left – right – left -  right - left …………….

And as you move away you hear him asking for a hammer.

And all of this under the pressure of knowing that someone is waiting for
you to get on with it.

I am not suggesting that we PWP not be asked to do things – I only ask that
allowance be made for how hard we are working.

THE “ON/OFF” SYNDROME
I made mention earlier of the problems with medication encountered by middle
and late stage PWP.  These include dyskinesia, hallucinations, dystonia and
the “on /off” syndrome.

Dyskinesia, the involuntary movements associated with an overdose of
levodopa is enough like tremor in its effects so as not to require repeating
except to say that its presence complicates the already complex enough
business of getting the meds balance right.  Dyskinesia has ruined many an
otherwise good on period. It adds RSI to the list of ills we face and sends
some of us, myself included, down the path to surgery.

Hallucinations are beyond my ken.  I haven’t had them and hope never to.  I
am in no way qualified to speak on them so I won’t.

I am however well acquainted with dystonia and the ‘on/off’ syndrome.  In my
case they are connected because I experience dystonia as part of the change
from ‘off’ to ‘on’.  It’s another painful part of supposedly painless
Parkinson’s.
About the only worthwhile thing I can find to say about feeling my left leg
go rigid and then into spasm with the toes and foot trying to curl into a
ball and the leg itself trying to twist out of it’s hip, is that better
times are a-commin. They may be 5 minutes away or 5 seconds – but they are
a-commin.

Those of us who experience the ‘on/off’ syndrome live a Jekyll and Hyde
existence, changing in minutes from someone capable of just about anything,
to someone who has difficulty doing something as simple as passing a
screwdriver.  If this is frustrating for those who deal with us, think how
frustrating it is for us.  I used to try and live my whole life during my
‘on’ periods but there is to much life and not enough ‘on’.  Now I do the
best I can with my ‘offs’ and sometimes I do nothing at all with my ‘ons’.
Except enjoy them. What else are they for?


+++++++++++++++++++++++++++
Dennis Greene 48/11
[log in to unmask]
http://members.networx.net.au/~dennisg/
+++++++++++++++++++++++++++