- 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
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
Monday 12 August 2013: 6 years 11 months on …
Physical: Advantage CBD / Mental: Deuce
Since returning from Bloemfontein at the end of July, it’s been another hectic few weeks!
Firstly, I Discovered on my way to Bloem when I filled up the car that there was no money in my bank account!
I then Discovered that my disability benefit had not been paid into my account by my insurers! So, between my broker and me, it took many calls, emails etc. to get that sorted out. Stress and tension don’t do me any good, and not being paid one’s “salary” leads to all kinds of problems at the bank when your debit orders have to be paid! Thank goodness, I Discovered that just in time, and with some fast remedial work, I was able to minimize the damage. I’m still waiting to hear why it happened – it’s not the first time!
In between that I met with my bank broker, Kyle Jacobs, at the newly revamped South Ender pub in Walmer; Michael Halbert who helps me with my personal finances, Nelson Mandela Metropolitan University meeting to discuss Phillip’s academic future, Nadine van Westenbrugge to help with admin and the Ratepayers meeting to discuss how best to combat non-service delivery in the Metro. I have been diligently distributing protest letters in the neighbourhood!
I had drinks at the Pitch & Putter with Len van Kempen, lunch with Ben Roth and his father at Finezz, brunch with Annette Jones and Liz Findlay at La Boca and Kevin Paul’s farewell party at Finezz before he headed off to the International Swimming Championships in Canada, where he will be swimming this week.
At Bluewaters Café, there have been visits from radio listeners, the Coggers and the Serfonteins.
I have had my home visits from Gill, the Hospice nurse, and Isaac, my weekly chat buddy!
And then there’s a video which Adrian is filming about my life and which will be shown at Mpekweni Sun in September. I am writing the script which also takes a lot of time!
Meetings and calls were made to the Groenewalds in Humansdorp to arrange for Martin (injured in Bloemfontein) and his Dad Adriaan to appear on our radio show last week.
Julian Fletcher has been at the house on Fridays to massage my tired muscles and I have been to see Stuart Dicke twice on Mondays for some physiotherapy and Johnny Raath for some gym work. My weekly haircuts and beard trims are done by Grant at Front Cover in Newton Park (phone 041 363 2529).
Tuesday was the monthly Motor Neurone disease meeting at the Old Grey Club with Stuart Dicke as the guest speaker.
Then there have been a few blogs to write, and updating my blog and web sites with pictures and text!
On Thursday evening I attended Mandy Gurr’s benefit show, Gino Fabbri’s Just Laughter, at the Old Grey Club, with additional background singing by Mandy herself on a CD that I burned off the internet!
And then rugby, rugby, rugby … Phillip’s last school games against Framesby last week and Selborne College this last Friday (Women’s Day). The Boarding House Fundraiser Farmers’ Day was arranged at the same time to maximise profits.
Phill’s team lost to Framesby last Saturday but beat Selborne this week. The First Team won both encounters – with Framesby being an exciting last ten minute charge to win the game and Selborne being a white wash victory for Grey! The Firsts are “flying high” at the moment having come to the end of the rugby season with an unbeaten record against Eastern Cape schools.
I was flying high on Friday, too; after having had a number of the “Jungle Juices” (orange juice and cane spirits) sold at the Farmers’ Market. I’m not too sure what the interactive effects are of my medication and the cane, but for a while there my body appeared to be working normally!
It was really pleasant visiting under the wonderful red Bedouin tent which had been erected in the matric quad to keep us dry from the steady rain which fell on Thursday and Friday. After going home with Sean and Phillip in the late afternoon, I slept right through until Saturday morning!
Congratulations must be extended to Niekerk and Ingrid Ferreira, all the boarder parents and the boarders for having arranged such a vibey and, I hope, a profitable Market Day!
On Sunday, we had a quiet restful family lunch at the Chartroom of the Yacht Club in the Port Elizabeth harbour.
Today is a blog write day, a visit from Iain Fyfe, ex-Grey teacher (Sean’s u15A rugby coach) visiting from Hong Kong where he has taught English for the last six years – he left just after I became ill and was happy to see me still in such “good” health, a visit to the physio and the gym and something more mundane like getting the roof repairers in to check on the leaks in the stoep roof!
This has been just another “quiet” week in my life – the week that was!
I need more Jungle Juice (and Carbolev and Lyrica) to keep me going!
Monday 24 May 2010: 3 years 8 months on …
As you can see from the countdown clock above, I have been ill now – or at least aware of my illness – for three years and eight months. For the first six months of my “being ill”, no-one knew what was wrong with me. During that period, the medical voyage of discovery took me in Port Elizabeth from the chiropractor, to the physiotherapist, to the neurosurgeon, to the radiographers for CAT and MRI scans, to the neurologist and then in Cape Town at Tygerberg Hospital / Stellenbosch University Medical Faculty, to the head of neurology there.
In comparison to other people (mainly in the USA) with whom I have communicated, that period of six months seems to have been relatively short. It has often taken years for doctors there to diagnose the illness, so we have actually done extremely well in South Africa. Having said that, there is no test for CBD and so it is an extremely difficult diagnosis to make. There are a number of degenerative brain disorders, each with a different name, that present with similar symptoms and cross-over symptoms. It is only upon death, when a brain autopsy is done, that a definitive diagnosis can be made. It is documented that in more than 50% of diagnosed CBD cases, it has been found that the diagnosis of CBD has been incorrect, and that the disorder / disease / syndrome / illness was rather ALS or Alzheimer’s or PSP or Parkinson’s or whatever!
When Professor Carr informed me that he thought that I had CBD, I was shocked and emotional. On that, my second trip to him in Cape Town, I did not expect to come home with a death sentence hanging over my head. Either, he gave me very little information at the time or else I don’t recall much of that visit in his office on 8 February 2007.
What I do remember, is that he and I cried and that he jokingly said that maybe in five years’ time I would come back and sue him for making the wrong diagnosis, or for giving me timelines that would prove to be incorrect. He also did not recommend that I searched the internet for information, as it would not make for “good” reading, and much of what I would see there could be untested research!
However, the internet has been the source of just about everything that I have since researched in connection with CBD. I have often said that dealing with my illness is the easy part – the difficult part is dealing with all the other side shows that accompany the fact that one is ill. One of these is dealing with the medical fraternity.
My intention is not to point fingers at anyone, but the practicalities of being diagnosed with CBD need some explanation.
I have read comments made by family of other CBD-diagnosed patients that once that diagnosis is made, the patient is simply left to die! As mentioned before, the reality of CBD is that there is no treatment and there is no cure. It would appear that many doctors do not have the knowledge to deal with the illness, and, in fact, there is not much dealing to be done. The disease winds its wieldy way, taking with it your ability to walk, talk, think and use your hands, and nothing can be done to stop it.
In Port Elizabeth, a city of 1 ½ million people, I think there are three neurologists. (I am talking about doctors in private practice and I do not know what the situation is at the public hospitals. Their track record would seem to indicate that the situation there is far worse. Just tonight, the Minister of Health is reported as having said that the Health Department is in a state of crisis!) They have an inordinate amount of work and it takes six months to get an appointment to see the specialist. If anything goes wrong in the meantime, he takes queries telephonically from patients between five and five thirty Mondays to Thursday only. It’s like trying to call a radio station when they have an on air radio competition! You just don’t get through. And, come five thirty, you give up and try again tomorrow. And please don’t get ill on the weekend!
(It is easier and quicker to email the help desk at the Mayo Clinic in Jacksonville, Florida. They do research there into, amongst other things, CBD and often, the response is instantaneous! Jacksonville, by the way, is also a twinned city of Port Elizabeth.)
I expressed my concerns about this communication method to the specialist, and now, we have the arrangement that I fax him my queries and when he has the chance, he calls me back.
Thus, it was that I faxed him last Friday morning about the muscle spasms that I have been experiencing in my left leg, from the toes to the buttock, for the last three weeks now. Also, I mentioned the ‘discovery’ that I had made when injected with cortisone and that having taken away the numbness in my hands.
This Monday afternoon I received my call back. There was not much he could say about the spasms but suggested that I play around with the timing and dosage of the pills that I take – my Pot of Gold – the little yellow tablets of Carbilev that artificially provide my body with the dopamine that my brain cell factory is no longer producing! (My understanding is that dopamine is a chemical that one’s body needs for communication to be effected between the brain and the muscles.)
Give it about a week and see what happens. Many patients with these sorts of illnesses will tell you that dosage and timing of prescribed medication becomes a game of trial and error by the patient and his caregivers. As far as the cortisone injections, well he couldn’t really say anything except concur that it was not feasible to have daily injections of cortisone.
Many people think that, because the illness is so rare, medical professionals are falling over each other to attend to you. The reality is that no one is really too concerned. When we organized a fundraiser three years ago to contribute money to research, I was told, and I understand, that there are far more pressing realities in South Africa than to do research into an illness that one or two people may have!
The reality of simply getting access to medical expertise when dealing with this particular illness (and I am sure many others) is a frustrating and stressful one. Even more stressful is the payment of that access! Yes, finding the doctor and his treatment is one thing – paying him, another.
I don’t know how people who are not covered by a medical aid manage this. But even thinking that your being on a medical aid scheme is sufficient, requires careful attention. I can only recommend that every reader very carefully ascertains their position in this regard. It would appear that understanding your medical aid rules requires a master’s degree nowadays, and when confronted by serious illness, a whole new world of discovery lies waiting for you. An entire blog is required to deal with the intricacies and frustration of medical payments!
Hang, man, even then, living is better than dying until it’s not!
And, yes, until the hangman comes, until then, please forgive us if sometimes we have a hang-up about being dealt this hand that we have simply been hung out to dry.
The challenge for us, at those some times, when you think you have been hung out, is to hang in … and to hang on.
You’ve got to get the hang of it!