- Join medical aid for assistance in case of illness
- Became ill in September 2006
- Diagnosed with CBD in February 2007
- Require medication called carbilev (now 8 tablets a day) and Lyrica (2 a day)
- CBD (like MND etc) is not listed as a PMB illness
- Discovery, however, agrees to cover the cost of carbilev as a chronic benefit but Lyrica has to be paid for out of savings account and eventually own pocket (R400 month)
- Feb 2014 Pera changes employer, so we move to GEMS
- Over the years, the type, frequency, dosage, timing etc have been altered in order to get maximum benefit from carbilev
- They agree to cover cost of generic medicine only (Teva Carbilevo); I have to pay Lyrica out of pocket
- I would have to pay in the difference if I continued with carbilev (R250 month)
- After consultation with dr, patients etc I agree to change to carbilevo (even overseas discussions) and have to continue with Lyrica
- But no carbilevo available for last two months – so pay in the difference for carbilev (and in full for lyrica)
- Despite numerous calls by pharmacist and Pera all over the country they are unable to source meds
- Pera manages to source tablets at DisChem
- However, we are not allowed to buy it there because Provincial is our registered pharmacist with GEMS (may only change that after 6 months)
- So I get involved (pull strings) to move tablets from one to the other pharmacy
- Then Provincial manages to source carbilevo
- On carbilevo since Sunday – experiencing slight shiver – lets see what happens and hope it works!
- All sorted for this month at least (we hope)
- Options: continue as is; get medical aid (legislation) to recognise neurological illnesses as PMB’s; sell of assets; get welfare assistance; donations; apply to become a state patient
With Tove Kane on AlgoaFM
Ed Lunnon has been on the Mid-Morning show 185 times.
That’s really quite an incredible avhievement – bringing as much awareness to neurological diseases as he and Lance Du Plessis can managed on their Wednesday morning interviews.
Ed’s focus this week is for people to consider two aspects that could change their lives for the better.
Dread diseases and unexpected accidents are realities. We can’t know what might happen to us at any given moment and Ed’s advice to the Algoa FM audience today was to put two things in place.
1. Have a salary protector in place
2. Consider what additional income you could set aside to cover unforseen costs.
Costs aren’t limited to medical conditions. Costs involve day-to-day living and if you are medically boarded or you simply can’t work, you nevertheless will still have financial needs and you have to make provision to cover these.
Ed is on the radio next Wednesday 10.30 – it was great spending these last weeks chatting on Algoa FM.
My last check-up in Cape Town was in December last year.
At the time I had discussed with the good professor the painful problem that I had in my left buttock and upper left leg.
Everything else that I experience is uncomfortable but not painful!
We have tried everything – I mean everything! – to alleviate the pain, especially aggravated when sitting or lying down.
He suggested that I should see a specialist in Port Elizabeth who was doing work in this regard.
So when I returned home, I made an appointment to see her.
Only one problem – she is so busy that the earliest appointment I could get was on Thursday 22 August 2013 – eight months in the future!
I asked Dr Britz in Port Elizabeth to see if he could speed up the process and the response I got was that I would be put on a waiting list in case there was a cancellation.
All this time I have just lived with the ongoing pain.
I received a call last month that there was a cancellation and I could visit the next day! As luck would have it, I was busy with a motor neurone disease meeting and was not able to go.
So yesterday the big day arrived.
Armed with my R800 for the consultation, my medical aid card and ID document (which I had been reminded on a few occasions to bring along), I went to see the specialist.
Well, a good lesson for any patient is to discuss the payment with the doctor personally. It so happened that there was a discount involved because I had been there previously. Thank you very much!
The rest would be forwarded to the god of medical aids in this country. I think that soon we will Discover that the funds there have also dried up!
After a thorough examination, it was recommended that maybe a cortisone injection into my hip joint would assist.
It was just a jab of a prick and a little EINA!
Some anti-inflammatory capsules would round off this exercise in self-discovery and trial-and-error medication. Let’s keep our fingers crossed.
By last night, the pain was a little worse and by this morning, even more so.
Let’s hope it will improve as the day wears on.
And no more sitting for the rest of the day … is this what a giraffe feels like standing all day?
©2013 Edward C. Lunnon
Tuesday 23 July 2013: 6 years 10 months on …
Physical: Advantage CBD / Mental: Advantage CBD
Not many of us are born into Buckingham Palace – in our lifetime maybe some three in 7 billion!
Yesterday, 22 July 2013, saw baby Prince “Edward Charles”* Cambridge, a future King of Great Britain, born into the British House of Windsor.
I will not be here on this earth when he rides down the Mall in London to St Paul’s Cathedral or to Westminster Abbey to be invested as the next King of the Realm. Whether SKY News broadcasts in High Definition to a special wide screen in a comfy viewing lounge in Heaven, or whether one just views from Heaven the goings-on on planet Earth through extra strong binoculars, I do not know.
Maybe one just attends the occasions on earth in a spirit form?
What I do know, and despite the comfortable trappings of the Palace into which this Baby has been born, he, too, like any of us will – wear nappies, teethe, grow up, be educated, experience high days and low days, cry and laugh, become ill (not having to worry about a medical aid!), have arguments, do things that are “right” and “wrong”, be spoken about, celebrate special occasions, attend funerals and weddings, get old, be part of a family, get married and have future kings and queens, and have birthdays and die!
These past few weeks, we have had our fair share of family celebrations surrounding birthdays.
Charles IV (2), Phillip (18), Sean (21) and Granny (80) have all had their birthdays. Last Friday evening, we celebrated Sean’s 21st. Not quite as they do it at Buckingham Palace, but almost, and with similar traditions that go with these celebrations. I made a speech (see next blog), Graeme Clarke and David Bryant (ex school mates) spoke about some of their experiences together, Phillip proposed a wonderful toast to his brother and Sean entertained us with his response.
I was very proud of our sons.
As I was when we watched Grey play rugby against Daniel Pienaar on Saturday. Phillip captained the Third Team and his older, but shorter brother, Sean, was the referee. An occasion to remember, not most of all because a DP player tackled the ref! Phill also ended up being called upon to play the second half for the Second team game! So it was quite an afternoon for us to remember.
Our sons have not exactly grown up in Buckingham Palace but Ryan Road has done them just as well! They are our Princes. Long may they live – at least to see the investiture of the King that was born yesterday.
(* My very personal recommendation …)
Thanks all for helping us to help the Beadons.
This gallery contains 125 photos.
Thanks to Laurie Beadon for taking these pics (c) and for permission to publish them.
Rest in Peace!
©2013 Edward C. Lunnon
Monday 14 January 2013: 6 years 4 months on …
Physical: Deuce / Mental: Advantage ED
Life’s Not just A Walk in the Park!
Last year on 14 January 2012, Loynes Jenkerson and his Walmer Athletics Club staged the first ED Lunnon Walk/Run in the Parks. The purpose of the occasion was to raise awareness about my illness, corticalbasal degeneration, other neurological illnesses and disabled people and to raise funds for The Lunnon Family Trust – a trust fund that I have established to ensure our future family educational and medical needs are covered.
My wish is that this event will continue – even after my death – to continue the good work that it has begun. I rely on my family, my wife and sons, together with Loynes and his Walmer Athletics Club to ensure that this event remains as a legacy.
And so it was that this year’s event, the PG Glass ED Lunnon Walk/Run in the Park was scheduled for Saturday 12 January 2013.
We had spent a week in St Francis Bay and were scheduled to return on Friday morning.
On Tuesday morning, I received a note on Facebook about LyallBeadon who had become paralysed after diving into the surf on New Years Day in Port Alfred. I do not know Lyall but knew his Dad from my teaching days at Grey when LaurieBeadon taught at Queen’s College.
I have often spoken about the “double whammie” that illness and accident brings: there is not only the need to deal with the concerns of the illness but there is also the need to deal with the financial concerns that accompany the illness.
And so, after reading about the enormous hospital costs that were involved to get Lyall to East London and then to Port Elizabeth to the AuroraHospital, and for all his future treatment, I realised that the Beadon family had a far greater need than the Lunnon family at this stage.
I decided then and there that this year the profits of the “Parks” event would be donated to the Beadon Medical Fund.
Through Facebook I was able to contact the family. I got permission to talk about the events on our AlgoaFm programme on Wednesday and to make the necessary arrangements for the donation.
I had hoped to meet Lyall on Friday afternoon after our return to Port Elizabeth. Unfortunately, he was not feeling well and I had planned to do so this morning.
However, early this morning I received the tragic news that Lyall had passed away. I am so saddened by this turn of events. Truly, Life is never a Walk in the Park!
My deepest sympathy is extended to the Beadon family.
In the meantime, Laurie and Stacey, his sister, were at the Run on Saturday morning. I hope all the pictures they took will remain as a reminder of the wonderful occasion.
It was an exciting and electric atmosphere and not even the rain that descended on the prize-giving could dampen the spirits.
My heartfelt thanks go to:
- Lloynes Jenkerson, Colleen Muller and the Walmer Athletics Club
- Zolani Runeli and Yvonne Anderson for arranging the disabled section
- Grey Junior and High School and their staff who assisted and participated
- PG Glass and the Falco Family
- Doug Pudney and Gavin Fisher of Frontier Events
- Alec Riddle and Lance du Plessis
- Stuart Reece
- All the sponsors of the prizes
- The marshals, helpers and traffic officials
- All the participants
- The Press and AlgoaFM
- Anyone else who helped in so many ways
It was truly an occasion where we were
“RUNNING FOR THOSE WHO CAN’T”
RIP Lyall Beadon
©2012 Edward C. Lunnon
Tuesday 11 December 2012: 6 years 3 months on …
Physical: Advantage CBD / Mental: Advantage CBD
Joost van der Westhuizen, ex-Springbok scrumhalf and captain, appeared on the TV programme Carte Blanche again this past Sunday. He has MND – Motor neurone Disease and has appeared on TV a few times and often in the print media since his diagnosis at the beginning of last year.
In the United States MND is often called Lou Gehric’s disease – after a famous baseball player who contracted the disease. In South Africa now, people often refer to Joost’s Disease! I repeatedly get asked whether I have what Joost has!
Thank God for Joost!
Because of his celebrity status he has helped to raise the status and awareness of MND and other neurological illnesses.
But his situation should also raise a number of other issues and many questions.
For every Joost out there, there are hundreds of other South Africans with similar neurological illnesses who not only battle the disease but also need the support system and funds to deal with their battle.
How best can we help those people?
By law, medical aids in this country have to cover certain illnesses. These are referred to as PMB’s – prescribed minimum benefits. A certain number of diseases/conditions (such as cancer, HIV/AIDS, TB etc.) are defined as PMB’s and have to be covered for certain treatment by a medical aid.
Neurological illnesses (other than Parkinson ’s disease) are not classified as PMB’s which means that all treatment required for such illnesses, such as medication, physiotherapy, speech therapy, wheelchairs and other devices, home care, adaptation of homes, etc are not covered by medical aid other than payments made out of a general medical savings account should there be an available balance. This places an unbelievable financial burden on the patient and family.
How best can we be lobbying for the lawmakers to include neurological illnesses as PMB’s?
Joost has a foundation, J9, which is raising funds for research.
Where is this research being carried out and what research is being done?
How best can we be assisting in order to make this research beneficial to all patients?
How best can we be lobbying government to assist in assisting people with neurological problems?
Joostlike! The questions don’t stop … and the answers don’t come!
I hope you understand this:
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