Dennis,

Thank you so much for your piece on what it is like to have parkinsons.  I
frequently find myself at a loss when trying to explain "HOW IT FEELS"!!!!,
and am always on the lookout for info that can potentially make others
around me and thus myself, more comfortable with this intruder in my life.

Diane Leeds

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From: Dennis Greene <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Subject: Re: Parkinson's. What's it like?
Date: Tuesday, November 17, 1998 3:21 PM

Michael,

> Does anyone know of a
>Web Site or list messages that describe what it is like for different
>people?  I think I have seen some good descriptions on the list but now
>that I need them I can't find them!
>
Below is the text of an attempt to describe PD, which I have delivered
twice
now.  On each occasion it seems to have been well received.  It is aimed at
health professionals so you may need to modify it for a general interest
group.  Please feel free to modify and use it if you think it will suit
your
needs.  (Note: this version contains a section on the difficulties of
communication with PWP which was not part of the earlier version posted to
the list some months ago).

Dennis.


PD – a personal view
by Dennis Greene

Good  morning.
(Get them to clench a hand into a fist.)

I am (biographical info)

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 of us have the same symptoms and everything I say
will be true for some PWP but not for others. Even what is true for me to
day 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,
often dramatically.  It is as the disease progresses through later 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. 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 although I don’t have personal experience of tremor, I do have
experience of dyskinesia, which has similar practical and social problems,
and I have spoken and corresponded with many whose tremor dominates their
lives.
They find themselves frustrated at not being able to perform the simplest
tasks.  Meals,  can become a nightmare.  I have heard tales of food flung
across restaurants, of drinks ending up everywhere but in the mouth - 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 a page
-
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 humor, 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.

Tremor, being so visible, is the cause of 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 symptoms 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, or
days, or years 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 is for me taut muscles that not
only ache of their own accord just as your arms and hands just did, 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.

But there are two areas I do want to explore with you, because they
directly
impact on your own interaction with your Parkinson’s patients.

The first area that 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 to continue
looking 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 your hand to stop 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 second area that I want to draw your attention to is one which affects
your perception of the PWP as a person.  The mask like face and slow moving
body of a bradykinetic PWP are easily recognised. What is not so easily
recognised is that the lack of facial expression, body movement, blinking,
and spontaneity combine to send a message in body language that is
potentially offensive to you, the recipient.

People in conversation with a PWP often form the opinion that the PWP is
not
interested in, or even listening to what they are saying. They are not
getting those little encouraging nods, no smiles are forthcoming and the
PWP
could even be looking slightly away from them, making no apparent effort to
turn towards them or make eye contact. This can be interpreted as rudeness,
lack of cooperation or even stupidity. Even people who are aware of the
problem have difficulty with it.

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 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 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 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 seconds away or 5 minutes – 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?
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