No Rest in Peace for MND – the fight continues


11 years 5 months ill | ©2017 Ed C Lunnon | Advantage CBD

Eleven years ago, on 8 February 2006, I was diagnosed with CBD, a terminal, incurable neurological illness.

Imagine the following: you have a fancy motor car that suddenly starts shaking and shuddering. You take it to the garage, ask the mechanic to diagnose the problem and to repair the car, BUT the bonnet (the hood) is welded closed and cannot and may not be opened.

So, together with other mechanics, they take the car for a drive, observe the shaking and shuddering in various situations, and eventually tell you what they surmise the problem is. It’s not the wheels, nor the shock absorbers or the springs, nor the tyres. By default, it can only be a problem with parts in the engine, but because they cannot open the bonnet, they are unable to repair or replace the faulty parts. So they put pieces of foam rubber in various places to curtail the shakes, more padding in the seats, and tell you to drive slower and shorter distances. Eventually, the make-shift repairs fall apart, and the car stops working.

Similarly, my body started shaking and shuddering, and by default, eventually,I was diagnosed with a neurological illness, a problem with the nervous system of my body housed in the brain and which cannot be accessed, repaired or cured. There are a number of these neurological illnesses, each with a name to describe the symptoms that are observed, and with various make-do medications that are applied to make the ride a little easier. But, eventually, all the makeshift repairs no longer suffice and my body stops working and I die!

(In the USA post death brain autopsies indicate that more than 50% of pre-death diagnoses are incorrect! In SA, post-death brain autopsies are not done.)

Let’s discuss the analogy further.

When my car begins to give problems, I have to pay for the car to be tested. Furthermore, I pay for the new parts and all the labour. And, as the problem continues, I have to pay more and more out of my pocket in order to try and get the vehicle to work. If you are wealthy, you have no problem in paying, and maybe even just throw away the old and get a new!

For their vehicles, some people have a maintenance agreement, and certain things, maybe not all, are covered by the contract. If you can prove it was a manufacturers fault, you may be able to claim from the manufacturer or dealer. The “maybe not all” parts are paid for by yourself, and if you don’t have enough money, you have to beg, borrow, or steal!

Some vehicle manufacturers have an ombudsman or a club or group that you can discuss your problem with and get advice, but they are under no obligation to pay for your repairs or replace your vehicle. They simply give advice.

Similarly, when my body plays up, I have to pay the medical costs. Some people have medical AIDS that assist with certain costs and possibly not all. The balance comes from your pocket, your family, your friends, or some or other benefactor.

If you feel aggrieved by the situation, you may approach the ombudsman, or possibly some group that has been established to help you with a particular problem.

If there is no such group, then some people create a group of their own, to help themselves and possibly other people with similar problems in the future.

The reality in South Africa is thar medical AIDS do not have to cover neurological illness costs and normally don’t.

The Motor Neurone Disease /ALS Associationof South Africa is a voluntary charitable organization to provide assistance where able, but is under no obligation to pay your bills.

If you don’t like what they do, you start your own assistance organization, such as the J9 Foundation, Family Trust Fund, The Hospice, Friends of Motor Neurone Disease Association and many other such voluntary, charitable associations.

But, ar rhe end of the day, none of them are obligated to assist you. You are responsible for your Medical care and costs.

In most civilized first world countries the government provides health care for its citizens.South Africa does not fall into this category. So make sure thar you have made provision for your medical costs, especially if they happen to be a costly affair such as MND.

In reality, and from a financial perspective, one can only hope and pray that you are taken sooner rather then later. Besides having to watch over the medical concerns, which are horrible in themselves, the financial aspect creates a further milieu of concerns.

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One comment on “No Rest in Peace for MND – the fight continues

  1. Pingback: No Rest in Peace for MND – the fight continues – Featured Blog

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