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.

RIP JOOST – UNFORTUNATELY NOT MND

I have read a lot of vitriolic notes regarding MND over the last few days. (See my own previous blog).

Once I have garnered more strength o ver the weekend, I will write again.

Watch this space.

In the meantime enjoy PJ Powers and remember that, unfortunarely, we are not a World in Union.

Speak soon!

http://m.sarugbymag.co.za/?postslug=/blog/details/pj-powers-sings-the-world-in-union#/pj-powers-sings-the-world-in-union

RIP Joost van der Westhuizen 2017



©2017 Edward C Lunnon | ill 10 years 5 months | Advantage CBD

Today, we had one of our infrequent MND support group meetings at the PE St FranciS Hospice.

And, I am angry!

The land, indeed the world, is awash with tributes pouring in for the late Joost van der Westhuizen.(if the media is to be believed!) And rightly so!

Don’t get me wrong. Death is so final, so permanent, and no one, except those nearest and dearest, experience the loss and the sadness so intimately and so emotionally. We all experience it at some time or another, but never all at the same time. Don’t tell me you know what I feel, or how I feel, or I am so sorry about your loss , we share in your grief …  A few days later, all is over and forgotten and the closest are left filling the emotional gaps.

So, as much as we can, we, too, extend our sympathies and condolences to Joost’s family and friends. We say we are sorry. We know how it feels to lose loved-ones to death.

But why does it take a Joost to get ill or die? Why an Ed or a Bongani or a Dave or a Mandy .. Before he became ill, I did not see the same enthusiasm about or interest in  MND. After the memorial service on Friday, I guess it will all disappear!

I am angry! The President and his ministers issue statements like gone roo soon, loss for the country, he set an example, he led the way, Captain Courageous, … but why not the government? The Caprains of Industry?  Surely, there’s is the responsibility to lead the way in finding a cure. In helping us, in making life easier for us, in eradicating this scourge from our society. Why should it have been Joost’s responsibility?

After all, he’s a man. He’ just a man.

I am angry because our government turns a blind eye. They can’t look after 94 psychiatric parients, let alone the 240 odd MND  patients in this country. There is no money budgeted for MND research – in fact, there is no research facility in the land. We are dependent on family, friends, corporate donations and the goodwill of the community. Not even medical AIDS assist because these Neurological illnesses are not defined as prescribed minimum benefit illnesses in terms of health legislation.

I am angry because come next Monday, I will still be cared for my my family and my health careers from the Hospice, I will still be fighting for my medication to be paid for by the Government Medical Aid. There will still be no meaningful research done in SA, there will be no cure, and we will be learning to cope with this death sentence that has been dealt us, without any meaningful assistance from the government.

I am angry because despite all the good words about Joost (and I guess they are all true – I don’t know, I never met the man!) nothing is said about Bongani, a member of our group who also passed away this month.  Surely, living with MND is difficult enough, but couple that with living in a shack, not having electricity or running water, or a plate of food and only the hands and love of his wife Ro assist him. I will never forget the sight of his wife feeding him crum for crum from our plate of sandwiches …surely he should also be saluted for his courage , his fortitude, his perseverance . In many ways, he was a far bigger fighter than Joost – a Captain Courageous.

I am angry that the J9 Foundarion, despite being lauded for its community assistance, did not respond to correspondence regarding  sufferers plight and their needs. They selectively assisted people to encourage their marketing needs. What research have they undertaken, I most respectfully ask, and howdoes that help me or Anne or Mandy or Bongani or ….?

I am angry because the so called awareness of MND that has been generated by the Foundarion still leaves the general public including yourselves in the dark. Even the press releases were contradictory in terms of the illness.just ask yourself how much do you know now about MND that you did not previously know?

I am angry because I guess it’s just not your problem. It doesn’t affect you. After all, you don’t have MND! Joost was chosen, and Dave and Anne and Keith …

I am angry because despite Joost’s team talking on TV about the MND research wing named after Joost, in reality there is nothing, not even a Welcome desk at any facility in the country.

I am angry because thousands of women (and men) will attend Loftus Versfeld tomorrow. Because they knew Joosr?, no! Because he helped them, no! Because of his exceptional athletic ability, possibly! Because of his good looks, his piercing blue eyes, his erstwhile six pack, his abs, many!  Let’s face it, ugly people like myself and others start off at the back of the queue. Life is just easier for the bold and the beautiful. I am angry.

Will those people attendingcontribute to MND research, help other parients, set up trust funds, build clinics? I doubt it! I am angry.

Where are our so-called Friends when we need them? If there’s money to be made they’ll be there. Otherwise the ll grace rhe pages of our newspapers and organise more meetings and make more speeches and take more pictures!

Yes, I am angry!

Mandy Gurr- Snymann has been trapped in her body for 17 plus years. She posts the following on her Facebook page yesterday:

“As a fellow Motor Neurone Disease patient, I thank God for coming to take Joost home. At last he is free from the body that had become a jail … free from this thief of an illness that is cruel beyond words. May his soul rest in peace. I pray that God will comfort his children, family, friends & carers, bringing them peace. I send my love & thoughts to MND patients that I know & think of those we have lost with fondness xxx

I have a right to be angry!

So it’s the MexTex Border …


© 2017 Ed C Lunnon | Ill 10 years 4 months

Advantage CBD

So the Chinese – don’t you just luv ’em – they built this wall together with the North Koreans as a prototype for you, Donald. You can do it, Donald, they said, you can do this by you and yourself. No need to bring in Mexican labour, may just have to Bill (that’s not Hi-la-ry,s husband) the Mexicans.

I luv ’em, Donald, like you, but we gotta stop the drugs coming over the Red River in sombreros and gondolas. Let them head for Europe and we’ll tax each one that passes by Key West on their water boards.

You, as the President of the United States and, I , Xi Jinping, the leader of the People’s Republic of my Tjaina, we gonna make America great again, and maybe we can get Vladimir to Put-In nice Russian ladies. But not Melania, she has a degree in copy writing from the University of Ljubjana, and she’s gonna remain on Broadway.

Put-in is becoming a Vladi nuisance anyway! He’ spending too much time in the Gym. I guess he is also a Discovely member and has to build up his Voyager miles for his next trip to the  ISS -International Space Station, Donald, that’s not to be confused with ISIS now!

But we can’t have the Russians committing Crimea all over our our beloved mother lands. (By the way has Barrack found his Birth Certificate to prove his mother’s a Hawaiian).

I think the FBI has mislaid my tax returns and Laduma’s birth certificate! They’ll blame it on my Russians hacking again – but they destroyed the documents when they were checking Hilary’s hard drive. No, Donald, don’t get confused now – that’s not Bill I’m referring to … My interpreter gets these things wrong. 

Maybe we should resort to sign language and get that South African that’s so good at sign writing. I’ll ask the Guptas to arrange.

So yes, Donald, sometimes I think I’m going to like you and then I don’t. Sometimes I think I’m not gonna like you and then I do. BUt Maggie and You are gonna get along – no not Maggie – that was the other British woman whose father owned a grocery shop. I didn’t check if she came from Portugal or Greece. Hope we don’t have to send her back!

No, it’s May I was referring to – the one in Red that came to tour yourWhite House. For a moment rhen I thought she had taken the Red Carpet, but it was to impress the communists on Red Square. Good surname she has – fits in with our May Day celebrations!

I’ll have to tweet her to wear it again! She really twittered in that Colour. And maybe she can wear it when she and you come to visit the Queen later this year. It matches your hair Colour, too!

So, Donald, I have to BRexit now.

But, please come fetch your wall …

So, please Switch off the Lights

© 2017 Edward C Lunnon | Ill 10 years 4 months

Physical Advantage CBD |  Mental Deuce

So ronight is the last night in The House!
I’ve been in the house, way back in 1988. But, tomorrow morning we all leave.

The once previously disadvantaged inhabitant makes way for the billionaire!

Please switch off the lights. Donald is coming!

Ja, I found out this week, it’s not easy getting a lift in Life. So I didn’t make it to Aberdeen.

I’ll get there …. I haven’t got my mind to where it should be yet. And worst of all, my eyes grow dim I cannot see … Even though I’ve got my specs with me.. this is possibly the greatest challenge I have faced in the last ten years. I’ll lift myself up!

Yes, we can!

Only now they tell me it affects my eyesight too!

(C) 2017 Edward C Lunnon (ill 10 years 4 months)

Deuce – both physically and mentally … Crawling back!

Please contact me if you know of anyone travelling to Graaff-Reinett/ Aberdeen. I’m in need of a lift for myself and in return can offer you good Company, humoRous Anecdotes, sharp observations, astute Political comment (summarized as CRAP) all in a crystal clear radio voice. Please inbox me … (translated “in die doos”) … Maybe no translation required!

This note appeared on my Facebook page yesterday. Yes, I need a lift, both physically and mentally.

I need to pull the pieces together and get back on top of things. So, I’m looking to go to Dootndraai, the farm (ranch) in the Great Karoo on the plains of the Camdeboo that belongs to my friends, the Ogilvies. Here, at the centre of the  goat farming industry and the fracking and uranium debate, the middle of the arid lands and the drought of South Africa, where 40 degrees c is the norm, not the exception, and to quote Rory Stear, here at the centre of the Universe, I will find the strength to escape, to complete my book, to spend quality time, to be thankful for all the blessings and to drink a few cold ones.

Of all the things that I have been taken from me by the CBD, what I miss the most is the ability to drive and the independence that goes with that. Just having to ask for a lift, is yet another nail into my fragile emotional state.  Maybe I need a chauffeur! … Driving Mr Daisy?

It’s three in the morning – damn, I can’t sleep again. I know it’s three because I hear the noisy engine of the delapidated VW Golf that delivers our copy of the Herald and the latest in the ramblings and tweets of the Village Idiot elect.

We’ve got Jacob but you’ve got Donald! We sing and you tweet! The problem is going to be when you tweet and we’ll have to sing to your tune …

So, Sean I apologise for falling asleep on your first visit home since you left home. It was good having you back and having that Flying Fish with you. The company may not have been great, but your mother’s roast chicken definitely was! Maybe, if I sleep at night, I will be  better company during the day.

Yes, I’m looking for that lift …

So, Sean has left home!

Ill 10 years 4 months | Physical Advantage CBD / Mental Deuce

(C) 2017 Edward C Lunnon

So, he has left home not because he’s angry or because he’s had enough or because I’ve angered him (at least I hope not).

He’s left home because the time has come for the chicken to leave the nest. Funnily, just the other day I attended a meeting where the discussion was about the impact on the world economy because children worldwide are leaving home later and later in life.

Sean is 25 this year and earns his income from the auto industry. Up until now, he’s lived at home benefitting from his mother’s excellent cooking and Barbara’s washing and ironing, my paying of the domestic accounts and Phillip’s D-I-y skills and unusual sense of humour!

On 1 January 2017, he moved into his own rented flat (just up the road, mind you!)

He now faces the wrath of the world’s economy – and the principles of supply and demand. He faces his own shopping, and domestic chores, and cooking. Thank goodness, his Mom has trained him well. I look forward to the invitation to that first meal.

In the meantime, I giggled at one of the first whatsapp messages we received on our family group chat. It simple read, Jis Mom, groceries are expensive!

It’s a sad time in our lives ( yet another!), but it’s also a glad time. After all, this is the moment for which we as parents have spent the years preparing our children.

The time has come.

We wish Sean all the best fortune as he heads out on the sea of life. May he find the grocery bargains and may the wind often come from behind.

We, and I especially, shall miss you son.

But the time has come. The world awaits you. It is your oyster.

Go well. Hamba kahle.

So …

(C)2017 Edward C Lunnon | ILL 10 years 4 months | Physical Adv CBD / MEntal Deuce

So, it’s three in the morning, I’ve been awake for an hour, tossing and turning, and now I’m writing.

I fell asleep last night in my clothes at about 8pm. My body is tired.

Some fifteen of Pera’s junior primary department were around for supper, and if that’s happening then one knows that it’s the beginning of another new year.

Arguably, Grey is the best school in the province. That makes this the best Junior Primary Division in the province, these teachers the best in the province and Pera, the best JP HOD in the province.

Whatever, the cream of Port Elizabeth’s young boys are placed in their hands at the beginning of each year, and what ever comes out of the pipeline in twelve years time, starts here with theses ladies. That’s quite a responsibility …

Which reminds me that my Sub A teacher ( Grade 1), Mrs Rice, has just passed away at the age of 102.

Now that is something that I would have phoned Ingrid about to share with her, but when I woke up at two, I recalled that I should phone Ingrid, but then I remembered that I couldn’t. She wouldn’t answer! She isn’t home …

Anyway, I digress..

After supper, Pera at her best, I went to lie down on my bed, ready for the Golden Globe awards. I woke at two, … no Golden Globes, no ladies, no pyjamas, and a blaring TV on CNN talking about the Village Idiot.

So now my daily dosage of pills of all colors, shapes and sizes is messed up, the cramps begin and the mind starts playing tricks, the “now I’m getting used to the hallucinations” thing.

But no sleep …

Another New Year: 2017


Ill 10 years 4 months | Physical Advantage CBD / Mental Advantage CBD

(C) 2017 Edward C Lunnon

I have not written or spoken for a long while now. Let me not try and find any reason for this other than just being absolutely forthright. I have been struggling to keep the pieces together.

So much has happened in the last few months and I have not been able to stay on top of it.

Mentally, things are going awry. Physically, my body is taking a pounding. Psychologically, I am not coping. Emotionally, I am in a dark space.

So, as we enter the second week of the new year of 2017, please keep me in your thought and prayers. Let’s hope that it will be a better one than the previous year. 

I need to get back on top, and I will. I promised myself right in the beginning of this journey that I would not let it overtake me. I won’t!

So watch out … I will be back soon and fill you in and what has been happening!

May it be a Happy New Year for us all.