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Hi to all of you!
I joined you verbose lot just before the weekend (and agree with all who
said that the amount of incoming mail is much too many).
I am 43, was diagnosed at age 39, & my wife can - using the exact science of
hindsight - trace signs of PD back at least another 5 years before
diagnosis.  I live in Bellville, near Cape Town in South Africa, and there
is an active PD-society in this country.  I am employed but is looking at
applying for disability for various reasons.

The magic of the Internet has the unfortunate down-side that I seem to know
as much about PD as my neurologist!

It has been interesting to see the comments about the lack of genuine
understanding from the medical fold.  This reminds me about the explanation
of the difference between "involved" and "committed":   To facilitate bacon
& eggs for breakfast the chicken is involved to supply the eggs, but the pig
is totally committed to supply the bacon. Almost every non-PD person gets
"involved" - whereas with PD you are "committed".  Everybody gives advice
etc, but you will sit with your PD now and also in later life.  You owe it
to yourself and it is your personal battle to follow the route that will
best minimalise the PD-effects in future.

I have a question that I have not yet seen addressed anywhere:
In a debilitating illness like PD one is initially able to carry on with
your duties as an employee.  At some point a stage is reached where you are
diagnosed as being unable to work and thus declared disabled.
1.      This cross-over stage seems to be very subjective, depending on the
report by (inter alia) the neurologist, who compares you with the worst
cases that he has come across.
2.      It is very difficult to convey the non-visible effects to an
outsider.  How does the Dr measure exactly how much the arm is numb,  how
much fatigued I am, exactly how little energy I have, how much of my
procrastination can be blamed on PD, etc.
3.      At the workplace I become a passenger, doing work but not performing
well at it and seeing my colleagues get ahead while I barely survive each
day.
4.      Compared to my colleagues of the same age - by the time they go on
pension to a well deserved rest I will be in an advanced state with my PD.
Should the insurer not consider paying the disability earlier so that I can
also have a period of relative sunshine before PD takes a stronghold? They
know that they will definitely have to pay the benefit, but they postpone
their decision, without a visible advantage.

Has anyone thought about this and how is the insurer and/or employer
approached so that the case is looked at holistically and with empathy,
rather than the current and (for them) safer route of clinical reports.

Some thoughts on this anyone?

Regards,

Gerrit Kleynscheldt

Tel:    +27 21 947 8918
Fax:    +27 21 947 1521

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