Dear Gerrit,
Welcome to our select society. I am particularly glad to meet another South
African. I was born and grew up and lived in Johannesburg  till my mid
twenties. And I spent many a happy summer with my aunt in Cape Town. I am very
interested to know about the PWP community in South Africa, because my
relatives there seem so uninformed, and have no understanding of my situation.
Also, I have often wondered whether anybody ever investigated the ar ea where
I lived to see if the incidence of PD was maybe unusually high - I lived quite
near the Dynamite factory, and their side product was fertilizer, and the air
was heavily polluted with ammonia, and it has been postulated that this might
have been a trigger factor in my PD! (What a sentence)
Be that as it may, it just feels good to hear a voice from back home.
Hilary Blue (49,32,24)


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Kleynscheldt, Gerrit wrote:
>
> 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
>
> Please note the following:
> Because e-mail can be altered electronically,
> the integrity of this communication cannot be guaranteed.