Hello everyone,
My name is Simon Coles, I am currently in my final year at the
University of Surrey, Guildford, UK, studying Information Systems
Engineering.
My mother was diagnosed with "Parkinsons" (quotes impotant, see later)
in 1985; she died in 1991.
My Father, Derek, is currently on the Council of Management (&
Trustees) of the Parkinson's Disease Society of the UK. He was
chairman of the Society from 1991 to 1993.
Before reading the following, please remember I am not medically
qualified; what follows is the result of what I have been told by
Doctors whilst Mum was alive, and what I have learnt since. This is
still very much an open research topic. You should not infer anything
about your personal circumstances from this note - MSA is thankfully
very rare.
Mum suffered from a condition called Multiple System Atrophy (MSA).
This condition is a rare form of Parkinson's disease, and is
occasionally grouped with a few other things as "Pakinson's Plus".
- MSA predominantly occurs in young onset patients (Mum was
45 on diagnosis).
- It occurs in approximately 8% of patients.
- It cannot be diagnosed until the post mortem
- It typically presents itself as a severe case of
Parkinsons.
- the deterioration of patients is generally quicker than
would normally be associated with Parkinsons.
- They don't know much about it.
We were also lucky enoguh to be accepted on the Appomorphine drug
trials run by Dr Lees & Co. at the Middlesex Hospital, London.
Appomorphine has just been approved here in the UK, and for some
patients (*not* all) has produced some benficial effects.
As a consequence of this, I have experience of Parkinsons, especially
the more severe cases.
My final year project (which I am halfway through) is to develop CANDI
(Communications Aid for the Nuerologically Disabled), a hand held
device which helps severely disabled people communicate with their
carers (this inability to communicate was perhaps the most upsetting
thing for Mum). CANDI is basically an "Intelligent Typewriter", which
tries to reduce the amount of movement required by the Sufferer when
typing (using some prediction techniques to guess what they will say
next). We found most communications aids unsuitable becase Mum
couldn't operate the keys anything like well enough.
CANDI also has some other interesting facets; I will write a short
introduction and post it to this list soon. Your comments will indeed
be welcome.
CANDI is based on the Apple Newton; it is my intention to give it away
free. It won't be ready before the end of 1994, but if anyone would
like a half finished version I would be happy to mail them the
package.
I hope I can share my own, and my family's experience with you, so we
can help each other.
Simon
--
Simon Coles
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**** Nobody else listens to me, so why should you? ****
