You are important to us …

9 years 7 months ill … Physical Advantage CBD / Mental Advantage ED

I have not written for ages, because of both physical and mental constraints, but also because I’ve been traveling again!

I will try and join the dots …

Yesterday, I returned from Cape Town. It was a rushed three day visit to the Western Cape in order to attend my classmate Derek Lionel Dollman’s funeral. More of that later …

But I had a rushed return too. Straight from the airport, Phillip rushed me to Advice Works to see Ryan Truelove.They are looking at my financial portfolio. It took far longer than I had anticipated and I sent Phillip home. Besides lots of talking, I signed a form to allow them to peruse my financial status ( or lack thereof!).

Darron Nel took me home and then off I went to visit my sister. I fell into bed after supper – exhausted!

By this morning, the beeps had started and the phone calls came streaming in … It was my broker, Discovery, Sanlam, Liberty Life, bank consultant, Standard Bank ,… Suddenly, they were all concerned about my welfare! Some I haven’t heard from in years! Now, I must know that “you are important to us!

Was it me or was it my meager investments they were all interested in?

Bang went my lie in and my quiet Friday morning of rest and recuperation! 

The minister at Derek’s funeral spoke a lot about heaven where, according to him, Derek has gone and where some of us hope we are going … He mentioned nothing of the financial systems there .

It surely can’t be heaven if all those people and institutions are going there too?

It’s Cool in the Cape

9 years 6 months ill | Physical Advantage Ed / Mental Advantage Ed

The horrible south Easter has been blowing in the Cape – the Cape Doctor they call it.

And we surely need the doctor in our family right now. My prayers and good wishes are with all my family members currently in hospital: my sister Ingrid, my uncles Peter and Bully, Sebastians’s Dad …. I have forgotten that I too am ill!

The weather has cooled down too. I like that! And the Cape is always cool … I am home for a few weeks.

Tonight, I speak to the Rotary Club which hosted me to the USA in 1974. And the weekend is the 40th Reunion of the HHH class of 1975. I shall share my story there too. I am Happy, Humbled and HonourED.

Thank you to everyone who makes it possible for me to travel and for the invites that keep coming in for me to share my story.

Hopefully, the more I speak, the more people will learn about this horrible disease of CBD. Someday, a cure will be found.

And in the process, I am blessed to meet up with family and friends who have travelled with me and made up the tapestry of my life.

Yes, the Cape is Cool!

Standing Room Only

But just because you bury something, that doesn’t mean it stops existing. ~ Jenny Han

Ill 9 years 6 months …| Mental Deuce / Physical Deuce

I had my first op on 11 November last year to alleviate the pain in my butt and legs, and to allow me to walk.

Then followed a few weeks of respite over the Christmas / New Year holidays.

On 25 January 2016 I had the second op. All this time, for 6 weeks after no 1 and again after no 2, I have been able to lie down, stand or walk, but NO sitting.

So for three months it’s been standing room only!

Today I saw the specialist, one week earlier than expected. The last visit he said “We are not out of the woods yet!”

Today he said, “Dit lyk goed!” (It’s looking good!”)

I left his surgery with my back brace in my hand, I had my first sit in three months, and Ihad a smile on my face!

My neighbor had given me a lift to the hospital (again!). This time on his 50th birthday. Thanks Dickie for all the lifts and looking after me and for your neighborliness. It reminded me of my 50th birthday, when almost ten years ago now, I received the news that I had corticalbasal degeneration with possibly 5 years to live. And here I’m heading for ten years now. It hasn’t been easy.

It’s a pity that the CBD can’t be healed in the same manner as the back! I’m only too thankful to be able to walk again!

ScramblED Signal

9 Years 5 months Ill | Mental: Advantage CBD / Physical: Advantage CBD 

The last time I wrote about having a junction box that works. I believe the correct name for that junction box is a splitter.

All of that, of course, presupposes that the signal that reaches the junction box is a good one. Those of us fortunate to receive a good DSTV signal into our decoder or explorer or whatever it’s called nowadays, know that we sometimes have the signal interrupted at source, sometimes because of a storm on the other side of the world. In that case, we lose the signal and receive no picture or sound and there is very little we can do about that until the fundi’ correct the problem.

In my case, the signal leaves the brain and proceeds down the spine to that all so important junction box.

However, because the corticalbasal degeneration that I have, the illness in my brain at source, means that there is not a clean signal coming into the system at all. There is a problem somewhere between the action, the satellite, the satellite dish and the Explora.

There are no fundi’s, no,specialists, who can correct the problem. No one knows how or what, and the incoming signal becomes weaker and weaker, the picture breaks up, and the sound softer and softer.

Every now and then we read that someone has found a solution, that Joost is looking so much better, that a miracle cure has been found,that the technicians are working on it, please just be patient, we will fix the problem!

May that day come soon – I have been waiting for almost ten years now for the incoming signal to be unscramblED.

Junction Box


“The way to get started is to quit talking and begin doing” ~ Walt Disney

9 Years 5 months Ill | Physical : Advantage CBD / Mental : Advantage CBD

We have a junction box under the eaves of the main part of our house. A cable runs from the Satellite TV Decoder in the lounge to the junction box, where the signal splits to the TV sets in the others rooms of our house.

In order for all the TV’s to work properly, the decoder, the cables, the junction box and the TVsets all have to function.

Sometimes, however, the TV set in my bedroom doesn’t function. There is no sound or no picture or neither.

More often than not the problem lies in the junction box. The bedroom TV set is functional, the cables are fine and the Decoder is fine! Simply fixing the junction box connections will enable a clear functional picture and crystal clarity sound to appear on my TV set. Eish, she works!

Well, that’s what has been happening in my body over the last year or so.

The nerves go down the spinal column to the junction box at the bottom of my spine. There they split and go down the left leg and the right.

Sometimes, during the last twelve months, the pain in my bum and legs has been triggered by short-circuits in the junction box. The fact that I have not been able to use my legs, has been the problems in that junction box.

So, I had the junction mended on 11 November 2015.

That got the left leg mended and working again. Whilst the work was done on the junction box, the left leg became workable again.

Six weeks went by whilst my junction box recovered from the surgery.

Many people enquire how my back is. It’s not my back that’s the problem. It’s that darn junction box, and when it’s repaired, the pain subsides and my legs work and I can stand up straight and walk again.

After Christmas, the junction box went haywire again and on 26 January 2016, I had to undergo further surgery, this time to get the right leg working and to relieve the pain on that side.

So far, four weeks have passed and the right leg is working and the pain had subsided on the right hand side.

Two more weeks to go, but the specialist says we are not out of the woods yet.

So, I am not allowed to sit for another two week. I may stand, walk, lie down – but NO sitting!

The TV sets in all the rooms are starting to work properly and a clear picture is starting to emerge.

Hopefully, the junction box will continue to work and there will be no more short-circuits.

So, don’t ask how my back is. There’s never been a problem with that!

In my junction box, I’ve had two lumbar decompressions in quick succession, which are performed for trapped nerves. The doctors and the medical aid call it a laminectomy and a laminotomy!

See you soon.

February Fighter


Ill 9 years 5 months …| Advantage CBD | 

On Remembrance Day 11 November I underwent surgery to enable me to walk again with no pain.

That was followed by six weeks of no sitting. Christmas and New Year at St Francis Bay were special days with the family.

Come 2016 and come the pain again.

On return to PE in January I returned to the neurosurgeon. More cortisone but less relief.

Another operation last Monday, and 4 more days in hospital.

Home on Thursday and the first weekend of the repeat six weeks of no sitting.

It’s going to be a long time of lying on my back and I’m not sure I have the strength to fight this anymore.

I’ve been fighting for almost ten years now, and besides the discomfort there’s also the heat. I’m not good at fighting that!

I can’t wait for the dressing to come off on Thursday. Then I can get into the pool and cool down.

I have to fight the demons and my emotions, too. They are the most difficult.

How I long for those good old carefree days, for good health and good sight, for walking and running, for driving, for holidays and the Western Cape and Stellenbosch, for friends and February flights …

Exactly one year ago I was on top of Table Mountain with the Jones family … It was the start of our Canada adventure.

St Georges Hospital Day 4

Night 3 wonderful on stilnox
Woke at 5
Pills and more pills
Got up and weed … An achievement beyond the bottle!
Dr’s visit. Can go home!
Breakfast X2
Shower Sh#t and Sean to fetch me

Home by ten! …dozed off … Nadine visited … Afternoon nap

Walking … Keep on walking …


St George’s Hospital Day 3

Day 2 was a washout
Night 2 was beautiful on Stillnox
Day 3 I walked! To the shower and up the stairs and visited Ingrid on the 2nd floor! We take our legs for granted. They are a gift.
Louisa from Alicedale and jan moved my bed to the window … My window on our beautiful world. We take it for granted!
I’m dozing off. I haven’t had such contentment in a long while …

Back to Hospital

Ill 9 years 4 months | Advantage CBD | Saturday 23 January 2016

Ten weeks ago, I underwent surgery to relieve pressure on my spinal cord – a lumber decompression – and pain in my butt and legs. Things looked and felt good.

But by Christmas, the pain returned and the walking became more difficult.

For the last two weeks, I have been on cortisone to relieve the pain. Alas, no permanent relief!

So, Thursday saw me at the neurosurgeon’s office again. More surgery has been scheduled for this coming Monday.

The medical aid authorized the procedure on Friday, and I will check in at noon at St Georges Hospital. The instructions are same as last time – nil per mouth from seven am – and no sitting for six weeks after the op!

This is such a disappointment for me. In fact, I am devastated.

I have been told that the risks associated with the second op are greater than first time round, and that the surgery is more painful for both surgeon and patient.

The procedure will take some two to three hours on Monday afternoon. The only thing I look forward to is the anathaesia – that wonderful feeling as the anaethetist inserts the needle and counts down, and somewhere you disappear into the unknown only to wake up a day or so later!

Please hold me up in your prayers, for the surgeon’s safe hands and for full recovery.

In the meantime, today, as America is burdened by a massive snowstorm, we continue to be affected by a heatwave and ongoing drought. 

Hopefully, by next week this time, I’ll be home again and  we’ll be singing in the rain!


RIP Garry Clarke

Wednesday 20 January 2016 | Our 26th wedding anniversary | ill 9 years 4 months | Deuce

Twice in the last few days I have written a blog that has disappeared into cyberspace! I am distraught.

All that remains is Garry’s picture! I guess that’s life. All we leave behind is our legacy and our pictures!

So, third time lucky …

I saw the neurosurgeon two weeks ago today, after returning from leave at St Francis. By then, the pain was once again excruciating. Another xray and MRI scan showed up fluid on my spinal cord, creating pressure and pain.

So, onto steroids and cortisone for a week. That lead to being absolutely pain free by the Saturday.

But, it returned. So last week Thursday I was back with the specialist. Another op in the making …

However he gave me a week’s respite and more pills … Thank goodness my hospice carer takes note because I’m forgetting … Carbilev 10 a day, lyrica 2, betanoid 6, nexmezol 1, tramacet 4, … I’m flying high!

But tomorrow is D-day. And a decision will be taken to operate again or not. The pain is erratic, from none to some. It’s wearing me down!

In the meantime, life carries on. And so does death. During the last two weeks, we have lost so many singers and musicians. All off to the Concert in the Cosmos. And we lost Garry Clarke – Old Grey who matriculated two years before I started teaching at Grey.

He was diagnosed with MS, and despite similar bouts of pain, he always had that smile on his face.

I attended his funeral on Monday, and went to the Old Grey Club afterwards. It was great getting out and seeing so many friends and acquaintances.

I’ll keep in touch, and hope not to lose any more blogs …