Print

Print


> from that, the only thing which binds us together is PD, so perhaps our
> best role is as guinea-pigs? We are good at discussing our reactions to
> meds, and have long ago got used to discussing our symptoms objectively
> and dispassionately; what more could a researchee ask for?

Yes, that is an excellent idea.  Even within our small research group,
three of us have PD, fairly advanced, and we contribute our feelings,
experiences, symptoms, etc. to the group.  As you say, any researcher would
have a treasure-trove of data, if they cared to access it.  My only tiny
worry is, would they be open-minded enough to accept that we know our own
reactions best, rather than just use us as "pin-cushions", etc.

BTW, the archives of this list *must* be a treasure waiting to be
exploited.  There must be a dozen Masters degrees in there, at least.

> One vital factor provided by increased funding is the ability to pursue a
> more varied  range of projects in parallel, rather than putting idas on
> ice because there are no more funds.

Some of  the funds presently available could be better used, perhaps.  I am
really rather tired of reading research papers based on a sample group of
20, or 50, or even 200.

I know time is limited, as well as funds, but the Internet spans the world,
and what would be wrong with developing a project that used its resources
and advantages to establish a research group of, say, 1000, worldwide, with
questionnaires sent and returned by e-mail?  Who's going to be first to set
a new trend in research?

> Because of the limited funds, I believe that the sensible way to go is
> to identify a limited number of the most promising projects, and then
only
> fund research efforts if they can be shown to be relevant to one or more
> of the nominated projects. Note that it has only become possible to
> propose or even consider this type of approach to the problem because of
> the ramge and scope of the ideas that have been asked and answered in
> recent months.

> Here's my starter list, in no particular order : - Any more?
>
> 1) Brain cell transplants - using cultured cells.
>                           - using non-human cells (Pig cells?)
>
> 2) Application of growth factors to encourage self-regeneration of the
> brain

Spot on!  I think that there is no danger of money running short for
research into medication to treat the symptoms, but a little more money for
epidemiological research wouldn't go astray.

Most research starts with a hypothesis, which the researcher then sets out
to prove or disprove. Once one tries to impose pre-conceived ideas on
research into the causes and symptomatology of a disorder, vital
information can be overlooked or ignored.

So our approach is to gather data on a large array of queries compiled by a
multi-disciplinary group.  These include, but are not limited to, physical
symptoms, psychological symptoms, diet, water supply sources, regions of
residence, former occupations, etc., etc.

For example, before we raised the issues in a cross-disciplinary
conference, no-one had thought of the particular problems of PWP's in
relation to personal hygiene, eyesight examinations, dentistry,
anaesthesia, etc.

When our data is eventually complete, it will be fed into a program on one
of the university computers, that will identify trends, rather than compile
statistics. It is non-discriminatory, non-judgemental process, that tests
every combination of parameters, and identifies those that have a
cross-correlation, whether or not this appears to a human at first glance
to have relevance.  This data will then form the basis for further
research.

Jim