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Subject: Recognising ON and OFF

A number of people have commented recently on going Off while shopping or
walking round the Supermarket.

One point which occurs to me, as anyone who has sat in a car waiting for
someone to come out of a supermarket will testify, is that people spend
twice as much time as they think they do in supermarkets, and are therefore
at greater risk of going Off.  ( And I can see the outraged replies already
for this -I'm only joking, honestly).

More seriously, you need to realise that when we do go Off (and in later
years it can happen very quickly, we are paying the penalty for forgetting
to take a tablet 30 to 60 minutes previously. By the time you actually go
Off, the damage is done, and you must resign yourself to at least half an
hour of being Off.

It is a sad fact in my case, and probably others as well, that the 5 to 10
minutes before I go Off are probably the most relaxed, symptom-free minutes
that I have had for a long time. However, the penalty of half an hour Off
is too much.

There is only one available treatment which can produce an almost
immediate effect on symptoms when in the Off condition, and that is
Apomorphine, which is injected into the muscle (Not a vein), and which has
nothing to do with Morphine. My neurologist has suggested that I could
carry some around as an emrgency back-up, and I'm thinking about it (I
dislike injections). The effects of Apomorphine only last for about 30 mins,
so it is not really suitable for all-day use.
  In the UK (I don't know about the USA, some people with advanced PD are
using a built- in pump to deliver a continuous supply of carefully metered
apomorphine, and this seems to be effective when even levodopa cannot cope.
  It would be best described as a useful backup, especially for the younger
PWP who is experiencing difficulties with medication.

Regards, Brian Collins