Hi All,
 
Barbra's note about her upsetting donation request is perhaps
symptomtic of problems which bedevil charities working in this area.
 
So I'd like to share these with you, although please understand these
are not necessarily shared by my Father, or the Parkinson's Disease
Society of the UK. (trustess can't have personal opinions under UK
charity law)
 
Please don't think I am flippant in this. I don't want a mailbox full
of flames because you feel I misrepresented you personally. This is
what things look like from a slightly broader view (from someone who
has seen the very worst sufferers, and the very best).
 
When a charity does an advert/direct mailing, there are two
conflicting aims:
 - to get as much money as possible, which is generally done by
   portraying your "clients" (sufferers) as poor, unfortunate, pitiful
   people etc. This scares the hell out of the sufferers who read your
   advert.
 - to educate and inform your clients and their relatives. This means
   portarying the condition in a more positive light. This makes the
   giving public think your condition isn't all that bad, so they will
   give their money to someone else.
 
How to reconcile these is very hard, and is often the subject of
vigorous debate. Personally, I feel adverts are in 3 catergories:
- information for general public (so they feel comfortable with
  sufferers)
- information & hope for sufferers and their relatives
- support seeking (for money & help)
 
If adverts could be nicely segmented and targeted, life would be fine.
Unfortunately, you can't put at the top "don't read this is you are a
sufferer", so people end up reading upsetting adverts.
 
There is also a problem with a progressive disease, and more so with a
problem like PD which varies so much from person to person. Your
average newly-diagnosed sufferer probably doesn't want to see the
extreme effects of the condition. (and to be fair, they may never get
that bad). But the worse sufferers know different.
 
This leads onto another problem, which we can call "the middle third".
(although the proportions don't matter, and if anyone has any feelings
on the exact proportions, I'd be very interested)
 
- roughly a third of Diagnosed PD's are still active, medication works
well etc. Often there a few sumptoms. These people are not active
within societies, although they may have joined out of the "goodness of
their heart".
 
- after a while the symptoms get worse, and start to encroach on the
person's life. This is where they get angry, and start to fight back.
Often they get involved in some sort of voluntary organisation, and
are absolutely essential to the running of them - these are people
with the motivation and ability to get involved.
 
- the condition prgresses, and it gets to the point that just living
is hard enough. Often their spouse has had to give up work to look
after them. Voluntary work is just impossible. These people are in
most need of help, and yet do not have the strength to shout for it.
 
(Note that people can stay in one stage for a long period of time,
perhaps never moving on.)
 
This means "the PD world" is dominated by the middle third. The worse
third often get forgotten:
  - paid charity/health workers never see them because they hardly
    ever get to see them.
  - the middle third activists don't know they exist, or don't want
    to know.
 
A terrible situation arises where all these voluntary bodies think
they are working so hard, and doing so well, and they are missing the
really needy.
 
Few people who see the latter stages of PD (in a loved one) have the
will to remain active within the PD community after that person's
death. So the people who have the knowledge dissapear.
 
(personal note. I have seen this latter third, perhaps I am overly
biased. A year ago we "found" a couple who we in absolutey terrible
circumstances, the sufferer hadn't been downstairs in 2 years, and the
carer was on the verge of a breakdown. Sure, he should ask for help,
but fighting the system for attention requires more mental energy than
most carers have. This sort of situation is what really worries me -
how often is it repeated? These are the people who need help - not the
vocal minority).
 
This brings us onto a third point. The dreaded research Vs Welfare
debate! (a humdinger of a topic if ever I saw one). Vastly shortened
discussion because I have a lecture, but I am sure you are all
familiar with this.
 
Where should effort go? Welfare, or Research? In what proportions?
Fine, we all need a cure, and as soon as possible please. But there
are people in desperate conditions, who need help now.
 
The welfare/research arguement has been going as long as there have
been charities. And still it is unresolved.
 
----- (end of philosophy)
 
These problems have been around for a long time, and are the source of
much trouble and strife within the PD community. Everyone has (a
fairly extreme) opinion - but as yet, no one has any answers.
 
 
Thank you for being my sounding board! Any comments?
 
 
Simon
 
 
>From: Barbara Michalak <[log in to unmask]>
>Subject:     Re: Re(2): Hello and Any ET's out there
>
>When my mother started having symptoms and seeing doctors, they would only
>say, "PD is one possibility." She thought they were trying to conceal the
>truth from her, and by coincidence she got a donation request in the mail
>asking for money for PD, and listing the most terrible symptoms ...
>drooling, loss of control, confinement to wheelchair (if I knew who did
>that I would flame them; certainly no reputable oranizations.)
.......
 
>
>Certainly symptoms progress, but not with the speed and inevitable
>severity the donation request cited.
>
 
 
Simon Coles
[log in to unmask]
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