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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) --------------------------------------------------------------------------------------------------- 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.