Hi you all!
I recently sent a question (a couple of questions actually) to this forum
and want to thank you all for the wonderful response. It makes it all
worthwile if one can share on a (literary) global scale - all the feelings
that I thought was unique to me gets verbalised by other P'sWP and this has
the effect that I feel more "normal"!
The rest of this E-mail is a copy of my original question, with reaction to
that from Dr Charles Meyer and with my response. I place this because it is
a way of sharing.
(From Charles:) First let me ask some questions.
1. Do you have private or governmental insurance or a combination?
I have private insurance - a pension and
provident fund with disability benefits to the extent of a lump sum payment
and a subsequent monthly income of about 75% of current income. I also have
an anuity with disability benefits.
2. If you receive these benefits will you have enough (with savings,
spouse income etc. to live on in a reasonable fashion?
Yes - at least for a number of years, not
knowing what interest rates, inflation etc will do in future. (our current
bond rates drift in the area of 21%!)
3. How much do you want to (have the energy and motivation) to continue
work?
Not much - none in fact. It seems as if I
have lost all impetus & drive. Fatigue and lack of initiative is a
constant. I believe furthermore that I should get the opportunity to retire
now for a couple of sunshine years with my wife & kids - postponing the
introduction of L-dopa in the process - before PD takes over completely.
The insurance houses will not agree to this I suppose, but I want the
benefit of the doubt - see your question 4.
In other words if you were in an environment where what you
produced didn't matter would you want to continue working or do you think
its time to quit?
Time to quit. I have such a lot to do - I
have procrastinated myself into a situation where I have enough To Do's & To
Read's for years to come.
4. How much do you think your production has been compromised? Do you
think that your employer is losing money on you? How much does your
employer know about your illness? When was he told? How did he/she react?
I believe I am being "carried" at this stage
by a very understanding line manager. Tasks have been reduced to very
little. My employer is an insurance company (disability benefits therefore
in-house, but in another department) and we are attempting to introduce
managed health care to South Africa. This is a very aggressive & volatile
market and the company do not really want to have to carry some employees.
We have been through a restructuring exercise, with another one looming. I
survived the first, do not know about the second, and is not clear about how
the company will treat me. Retrenchment will be a financial disaster.
Risking it all I decided to play clean and
put all my cards on the table, giving all relevant information to my
employer. I was concerned that the different departments within the
company (e.g. HR and insurance) will make decisions within the ambit of
their own devices, so I wrote a letter to the head of the company, asking
that my plea for disability be looked at holistically. (Placing me on
disability will mean that the payment of my income will not come from the
Personnel department any more, but from the disability insurance. This is
still the same company.) In response to this I have had a good meeting with
management at HR. The jury is still out...
5. Is there a possibility in the job situation and with your insurance
program of working part-time?. I did that for about 8 months and it helped
me a lot in the transition.
It was suggested to me that I assist by
doing some research for my department on the Internet. I will gladly do
this, but my reponse was that I would prefer to to it during disability, on
an As-&-When basis. My line management suggested that we start now already
with a programme where I can do work from home on my "off" days.
Now regarding your questions:
"Kleynscheldt, Gerrit" wrote:
> 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.
Yes it is subjective. And at least here in the States you can be almost
guaranteed a fight no matter where you are in the course of the disease.
It in crucial to have your doctor behind you and to write the correct things
to the insurance company or Social Security. If as you have said your
neurologist does not know a lot about PD find one who does. I don't know
the availability of movement disorder specialists in South Africa but I
suspect that there must be Movement Disorder Clinics in the larger cities.
The job of the physician is to evaluate how the symptoms that you have
interfere with your work as defined by a job description given to him by you
or your employer. He should be relying on you and your employer for the
data.
>
> 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.
Again that is difficult. Remember- and he should too- that loss of
initiative is a SYMPTOM of PD. So is fatigue. Your employer can provide a
lot of the data and it may be to his advantage as well as yours for you to
receive disability - if your production is suffering..
>
> 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.
That is discouraging especially if you have taken pride in your work in the
past.
>
> 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.
Yes I agree- but it won't fly. Unfortunately every check that you don't
get is money in their pockets- and if they are lucky maybe you will die
young and they won't have to pay at all.
> 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.-
I have thought a lot about this. I have done some psychiatric disability
evaluations when I was practicing and had to borrow money from my family
several years ago when my insurer played these games and I wasn't working.
If you answer the questions above I will try to suggest some approaches
which might be effective (but in this business then again may not).
Charlie
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Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
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Gerrit Kleynscheldt
Tel: +27 21 947 8918 (Local 021 947 8918)
Fax: +27 21 947 1521 (Local 021 947 1521)
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