Motor Neuron(e) Disease

Thursday 30 June 2011: 4 years 9 months on …

Since it was reported that ex-Springbok rugby player, Joost van der Westhuizen, has been diagnosed with “probably” motor neurone disease, I have received numerous queries regarding the illness.

Here are some interesting points gleaned from WIKIPEDIA: 

“The motor neurone diseases (or motor neuron diseases) (MND) are a group of neurological disorders that selectively affect motor neurones, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body.

Terminology

MND refers to a group of diseases that affect motor neurones. In the United States, MND is more commonly called amyotrophic lateral sclerosis (ALS), or Lou Gehrig‘s disease, after the baseball player.

Signs and symptoms

Symptoms usually present themselves between the ages of 50-70, and include progressive weakness, muscle wasting, and muscle fasciculations, spasticity or stiffness in the arms and legs, and overactive tendon reflexes. Patients may present with symptoms as diverse as a dragging foot, unilateral muscle wasting in the hands, or slurred speech.

Diagnosis

The diagnosis of MND is a clinical one, established by a neurologist on the basis of history and neurological examination. There is no diagnostic test for MND. Although an individual’s progression may sometimes “plateau”, it will not improve.

Treatment

Currently there is no cure for ALS.

The lack of effective medications to slow the progression of ALS does not mean that patients with ALS cannot be medically cared for. Instead, treatment of patients with ALS focuses on the relief of symptoms associated with the disease. This involves a variety of health professionals including neurologists, speech-language pathologists, physical therapists, occupational therapists, dieticians, respiratory therapists, social workers, palliative care specialists, specialist nurses and psychologists.

Prognosis

Most cases of MND progress quite quickly, with noticeable decline occurring over the course of months.

MND is typically fatal within 2–5 years. Around 50% die within 14 months of diagnosis. The remaining 50% will not necessarily die within the next 14 months as the distribution is significantly skewed.

Professor Stephen Hawking is a well-known example of a person with MND, and has lived for nearly 50 years with the disease. (Morris Schwartz, of “Tuesdays with Morrie” fame,  also had MND (ALS).)

Mortality normally results when control of the diaphragm is impaired and the ability to breathe is lost.”

Keep Moving!

Tuesday 28 June 2011: 4 years 9 months on …

Corticalbasal Degeneration is a disease that eventually prevents one from moving. Full stop!

Right now, almost 5 years into this trip, movement becomes increasingly difficult for me.

I need to thank those people who assist me every day to keep going – literally! :

(in no particular order)

Jonathan Raath at Greenacres VA – biokineticist (for putting up with all my swearing)

Soena O’Kennedy – masseur (for making my hands and feet feel “lekker”)

Julian Fletcher – sports therapist (for finding all those deep down aches and pains)

Dr Rod Butters – GP ( for just being there, and the home visits!)

St Francis Hospice, and especially Sr Gill le Roux, Sr Janice Malkinson and Jenny Nickall (for the weekly visits and your untiring support and concern)

Janine (from Andre’s Hair Design, Newton Park) – Hair and Shaving (for making me feel and “look so” good)

Good Fellas (Jonathan Bishop and Byron Breetzke) – for moving me around town (even if I haven’t been drinking!)

Nadine van Westenbrugge – for helping with the admin

Spec-savers (Bryan Dowley and Tim Seaman) – for helping me to see where I go!

I remain deeply indebted to all of you.

Thank you!

INVICTUS

Friday 24 June 2011: 4 years 9 months on … Game ED!

INVICTUS

(from the Latin meaning Undefeated or Unconquered)

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

English poet:  William Ernest Henley (1849–1903)

At the age of 12, Henley fell victim to tuberculosis of the bone. A few years later, the disease progressed to his foot, and physicians announced that the only way to save his life was to amputate directly below the knee. It was amputated when he was 17. Stoicism inspired him to write this poem. Despite his disability, he survived with one foot intact and led an active life until his death at the age of 53.

The poem was written in 1875 in a book called Book of Verses, where it was number four in several poems called Life and Death (Echoes). At the beginning it bore no title. Early printings contained only the dedication To R. T. H. B.—a reference to Robert Thomas Hamilton Bruce (1846–1899), a successful Scottish flour merchant and baker who was also a literary patron. The title “Invictus” (Latin for “unconquered”) was put in the Oxford Book of Verse by Arthur Quiller-Couch. 

The poem has Influenced the arts ever since.

In the 1942 film Casablanca, Captain Renault, a corrupt official played by Claude Rains recites the last two lines of the poem when talking to Rick Blaine, played by Humphrey Bogart, referring to his power in Casablanca. The irony in the reference is that the theme of the poem refers to self-mastery, when in fact all of Renault’s power in Casablanca is merely granted.

In the 1945 film Kings Row, Parris Mitchell, a psychiatrist played by Robert Cummings, recites part of “Invictus” to his friend Drake McHugh, played by Ronald Reagan, before revealing to Drake that his legs were unnecessarily amputated by a cruel doctor.

While incarcerated on Robben Island prison, Nelson Mandela recited the poem to other prisoners and was empowered by its message of self mastery.

The poem was used in a voice-over by Lucas Scott in the television series, One Tree Hill.

Canadian poet and singer-songwriter Leonard Cohen recited the poem as an introduction to his own song “The Darkness”, during a couple of shows on his 2010 world tour, most notably at his State Kremlin Palace show.

In Napoleon Hill’s book, Think And Grow Rich, this poem is quoted and discussed. Hill added that, we are master and captain, “ . . . because we have the power to control our thoughts”. We are warned that this “power”, alluded to in Henley’s poem, “ . . . makes no attempt to discriminate between destructive thoughts and constructive thoughts”. Napoleon Hill explains that the conscious choice is laid upon the individual and suggests that the poet left others to, “. . . interpret the philosophical meaning of his lines”.

The poem was important to Oklahoma City bomber Timothy McVeigh, who recited it on the day of his execution.

Novelist Jeffrey Archer quoted the poem in the first volume of his A Prison Diary series ‘Hell’ which recounted his time inside HMP Belmarsh.

“Invictus” is also a 2009 biographical sports drama film directed by Clint Eastwood starring Morgan Freeman and Matt Damon.

The story is based on the John Carlin book Playing the Enemy: Nelson Mandela and the Game That Changed a Nation about the events in South Africa before and during the 1995 Rugby World Cup, hosted here following the dismantling of apartheid. Freeman and Damon play, respectively, South African President Nelson Mandela  and Francois Pienaar, the captain of the South African rugby team, the Springboks. (1)

The 1995 Rugby World Cup Final was played between the Springboks and the New Zealand All Blacks at Ellis Park in Johannesburg exactly 16 years ago today on Saturday 24 June 1995.

For three weeks, prior to this big day, we had lived through World Cup euphoria (something similar, although not quite as big, as last year’s Football World Cup).

Together with friends and family, we had planned a day of festivities around the Final and which would culminate in that South African tradition of all traditions, the all-important braai!

Well, we never got to participate in the events planned for the day.

Pera was six months pregnant and due at the end of September 1995. (We previously lost a second son who had been still-born in November 1994.) Early on the morning of the Final, I woke up to hear her screaming in the kitchen. The baby (at 26 weeks) was threatening to come out and I rushed her to St George’sHospital, where we spent the rest of that day. The doctors managed to prevent the birth, Pera remained in hospital and late that evening I drove up Cape Road on my way home.

Everywhere, the fires were burning, people were partying in the street and ecstasy, excitement and exhilaration pervaded the country. We had beaten the All Blacks 15 points to 12 and the World Cup was ours – the rugby kings of the World! (To this day, I have never watched THAT game in its entirety, but, of course, I have many times seen the photograph of THAT drop goal that sealed the game in our favour and which hangs in just about every boardroom and pub in this country!)

It was a tremendous boost for our fragile new democracy born in 1994 and barely one year old!

But talking about births … for the next two weeks, the baby threatened to be born. On the night of 6 July, with Pera’s gynaecologist, Dr Caras Ferreira, out of town, Dr Ivan Berkowitz was hurriedly called from a formal dinner to St George’s Hospital when, once again, it was touch and go. He arrived at midnight in his tuxedo and bow-tie.

(I knew Ivan and Harriet well, and we have remained friends to this day.

Ten years prior to this, in June/July 1985, the Grey First Eleven went on the first Grey overseas cricket tour to England and Holland. Darryl Berkowitz was Headboy of Grey in that year and a member of the touring team that I accompanied, together with Rod McCleland, Keith Crankshaw, Dickie Ogilvie, Neil Thomson and Charles Pautz. We sold tickets for that dreaded VW Golf and raised funds together with the Berks (and all the other parents) and also had our return party at their home in Conyngham Street.

It was so good to meet up with many of the members of that touring team at last year’s and this year’s 25th Reunions at the school. And, as I write this, the Grey cricket team is once again touring England. We wish them good luck and happy travelling!)

Anyway, Ivan explained that Pera would have to remain in hospital for the rest of her pregnancy, and that if he did not deliver the baby soon, we would lose either Pera or the baby.

And, so it was, on the next morning, Friday 7 July 1995, sixteen years ago, that our second son (and we had previously been told by the gynaecologist to expect a girl) was born by caesarean section at twenty seven weeks and weighing 1,3 kg. Our previous son was due to be called Phillip, so this baby was named Phillip John. He spent the next two months in the incubator at the hospital, and cost the medical aid about double the price of our very first house that I had bought!

Phillip John Lunnon (our Dr Phil!) celebrates his sixteenth birthday in two week’s time. Now, at six feet and three inches, he is the tallest in the family, beating me at six feet and Sean at six feet and two inches!

He is our fighter – our very own Invictus.

There have been times that I did not think that I would make it to his sixteenth birthday but I, too, am a fighter.

I thank whatever gods may be
For my unconquerable soul.

I am the master of my fate:
I am the captain of my soul.

[ (1) From Wikipedia]

CRAIG CONDON – A Tribute by Mandy Hall Tuck

This tribute was read on “ED is in wED” – broadcast on AlgoaFM on Wednesday 22 June 2011

 

18 June 2011 

Dear Ed 

My name is Mandy.

I stay in Uitenhage and listen to your programme every week and receive your emails.

I would like to share with you something that happened this week in Uitenhage….

It’s about a young man named Craig Condon. He celebrated his 21st birthday this year in February.

Craig was born with muscular dystrophy, a beautiful baby with huge eyes and a lovely smile. He was in grade one when he was diagnosed.

He has an older sister, Kerry Lynne, who is 26 and is now blind and has celebral palsy.

Craig has been an awesome young chap, and living in a close community, everyone knows him.

His mother is a hairdresser, and when you visit the hairdresser, he would come in and out in his motorised wheelchair – just a normal teenager, wanting the latest games, hair styles and enjoying life.

He went over to Disneyworld,  Florida when he was 8 and just last year some wonderful friends paid for him to go on a cruise around the Mediterranean Sea and to visit Derby in England, where he met a young man with the same illness.

What a wonderful young man, always a smile, despite knowing that he would never walk again, and that one day he was going to pass away.

He passed away on Youth Day last week, aged 21.

I pay tribute to his parents, Michelle and Allan, my sister Kerry and my niece Trevlyn for always being there for Craig….nothing was ever too much trouble for them.

Everyone is going to miss Craig so much. We are so thankful for the 21 years that he spent with us all.

Thanks for listening and I wish YOU all the best, knowing like Craig did, that every day is a gift.

Thank you and God Bless

xxxx

Mandy Hall Tuck

 

Who Painted the Moon Black?

Sunday 19 June 2011: 4 years 9 months on … Advantage ED

Father’s Day 2011!

This has arguably been the saddest weekend of my entire life.

Over the last two years, I have written a great deal about the wonderful days spent at St Francis Bay. Yesterday morning, we were headed there again for the weekend.

After the recent rains, the world was green and clean. Coming over the rise just before the descent into the Gamtoos River valley one gets to see Jefferys Bay in the distance, and because it is so clear today, beyond the Bay of J is the beauty of Paradise Beach, Aston Bay, St Francis Bay and, at the farthermost point, the peninsula of Cape St Francis. What a splendid sight on this magnificent warm winter’s day!

In the car there was silence. Behind us, you could hear the hum of the wheels of the Venter trailer that we were towing. It was empty because the purpose of the trip was to collect the last of our belongings from our house in St Francis.

Our holiday house has become the latest casualty of my illness.

Like a thief in the night, the CBD has slowly been taking away from me. First it was the use of my left hand. Then it took my job and my ability to work, to earn an income and to make a contribution to society.

Slowly it has taken not only my physical and mental abilities, but also my independence, my self-worth and my self-esteem.

It reminds me of the total lunar eclipse that we had witnessed on Wednesday night. On a clear dark cloudless night, we had slowly seen the fullness of the bright moon disappear as the shadow of the earth moved across the face of the moon. After about an hour it became totally black!

(On a “lighter” note, someone said the moon was being switched off for three hours in response to the national load-shedding call by ESKOM to save power! Another comment was that VODACOM had paid millions to turn the moon red as a part of its recent advertising campaign to advise the public that it had changed its corporate colour from blue to red!)

Be that as it may, it was the longest total lunar eclipse seen in the last one hundred years. At the slowest of paces, the darkness crept across the moon until eventually there was a total blackout.

It is just like my CBD – at the slowest of paces, it is stealthily and silently taking more and more.

And now, it has started taking our possessions.

As the disease has progressed, it has become increasingly difficult for me to keep maintaining two homes – from a practical operational point of view but also from a financial perspective. And so, on the Easter weekend at the end of April we decided to put the house up for sale.

I don’t think any of us were prepared for what happened next. Bearing in mind the economic situation right now, and the fact that almost every second house in St Francis is “For Sale”, we did not know what to expect.

But early on Wednesday morning, Freedom Day, we had two prospective buyers view the house, and by lunch time the second viewer had made an offer to buy, which we accepted!

Tears rolled freely then. The paperwork was signed, but it would take a while for the transfer to go through, so the reality of the decision didn’t really hit home.

Not until this weekend. As the transfer is imminent, we needed to move. Suddenly, reality set in.

The weather was perfect. Those warm, windless picture-perfect days in St Francis when the reflection of the houses in the canals results in one not knowing which the top is and which the bottom is of the photos that you have taken! It made our decision to sell and the packing-up process so much more difficult to accept.

I have kept blaming myself. I have let down my family because I did not adequately prepare for an eventuality such as the CBD. I had always hoped that the boys would have continued with the traditions of No 6.

We have so many happy memories from our years of visiting here:  from the first red and black blow-up boat with the plastic oars, through Rusk with its 15HP Johnson engine to Rolls with the 125HP Mercury; from the paddling through the ski-ing and wake-boarding, from the canals through the river to the sea, from the skottels through the braais, from the fishing through the tanning and beach walks, from the empty house in winter through the “House (and garage) Full” at Christmas and New Year!

As a family, we have been so privileged by the experience and have been even more privileged to have been able to share it with so many of our family, friends and neighbours. They are too many to mention here (I will include my nephew-in-law Sebastian, only because he asked me to), but hopefully most have signed the Visitors’ Book that we have kept over the years.

In amongst the packing, it was a special treat on Saturday evening, and we really value the kindness, when our neighbours supplied a pork “skottel – braai” dinner to celebrate the “Last Supper” at No 6.  Mike and Jenny Rishworth (from No 4) and Brett and Jenny Parker from across the canal arranged the evening and joined us (and Pera’s brother Paul and his wife Debbie). Thanks so much for the evening, but even more, thanks for your friendship and the many happy memories. We know you will keep an eye on No 6 for us.

I did not sleep much on Saturday night. There were too many thoughts going through my diseased mind and too many tears sliding over my cheeks. Sunday, Father’s Day, was not much better. Seeing the boys walking around taking their last pictures and posting them as their profiles on Facebook , made it even more difficult for me.

I had never imagined that one could become so attached to a place and to a house, and that it would be so difficult to say goodbye to a memory and a thousand dreams.

I had also never imagined that we would have accumulated so much over the years. So much so, that we will need to go back again to collect the rest (maybe just an excuse for one really last visit to No 6 later in the week!)

To all our immediate neighbours, the Macs, the Fishers, the Kemps, the Fouches, the Nortjes, and to the numerous others who crossed our path, our grateful thanks are extended  for so many good times and for being part of the tapestry of our St Francis Bay experience. We eagerly anticipate being your “day visitors” in the future!   

To the new owners, Mike and his family, we sincerely hope that you will treasure it and enjoy it as much as we have, and that you, too, will continue to hoard happy memories at No 6 (and maybe not so much junk as we have!)

And to ourselves, we need to remember that the moon did not stay black forever. After the darkness, it turned to the most beautiful red and then slowly returned to its normal bright shining self (and maybe even looked just a tad brighter after the darkness than before!)

We, too, must now look forward to the next exciting era in our lives that begins today.

 

 

 

 

 

I ASKED FOR STRENGTH …

I asked for strength and God gave me difficulties to make me strong.

I asked for wisdom and God gave me problems to solve.

I asked for courage and God gave me dangers to overcome

I asked for love and God gave me troubled people to help

I asked for everything so I could enjoy life.

 Instead, He gave me life so I could enjoy everything.

I received nothing I wanted.

I received everything I needed.

 (anonymous)

The Golden Ticket to Sun City

Some thoughts to ponder on Youth Day:

Over the last few weeks, there has been much discussion about the use of steroids at school, club, provincial, national, international and professional levels – in fact, in all walks of society.

There are calls for investigation and intervention to take place from school level to government level, and the buck appears to be passed around ad infinitum.

In truth, and in SA IDOLS terms, the use of steroids is but the golden ticket to “Sun City”.

No investigation into the use of steroids will be complete or successful unless complete and thorough research is done into the multi-million industry that makes up the spoils of Sun City!

 Anecdotal evidence is rife about, inter alia, the following benefits at school level:

Sun City for “promising” school boys (and their parents in some instances): Cash approaches to junior school boys at u13 level and large retention “salaries” paid to high school players by professional franchises, bursaries and scholarships, national and international tours (often free for some), many additional days off school and out of the classroom, VIP status, free kit and equipment, accommodation in hotels, meals in restaurants, access to alcohol and clubs

Sun City for administrators, teachers and coaches: Free national and international tours, unlimited free entertainment benefits, lucrative subsistence allowances, free tickets to sporting events and other incentives, free accommodation in hotels and B&B’s, time out of the classroom

Sun City for schools: Marketing opportunities and attraction of scholars and income, access to millions in the forms of large company sponsorships and donations (given and received with tax benefits), prestige status

How much more enticing is Sun City at higher levels?

The question is: Who is really going to through away their golden ticket to Sun City, their key to the door of the treasure chest?

Will anyone really open the proverbial Pandora’s Box?

It’s like expecting Blatter to blabber!

On this Youth Day, what are we creating for our youngsters?  Remember, in the Golden Circle of Life, all that glitters is NOT gold!

The Agony and The Ecstasy

Monday 13 June 2011: 4 years 9 months on … ADVANTAGE CBD

I started blogging in October 2009 after I had fallen down the wet steps and broken my elbow. Those were the last good rains we had in the Eastern Cape. Thereafter, we were placed on water restrictions and for the last 20 months we have not received any substantial rain at all.

We have been restricted to 15 KL water per household per month. In order to stay within the limit, Phillip was made Minister of Water Affairs in our house. He took regular readings from the water meter and advised what we could use and when.

Buckets were placed in the showers and the water thus collected was poured down toilets and used to water the garden. It has been an irritant for me who is already so unbalanced on my feet to try and balance over the shower bucket. I was concerned that I may fall again and break another elbow!

But this past weekend, I kicked the bucket!

That is because we had more than good rains during the month of May. Our dams rose steadily from below 30% capacity. The ground was saturated. And then last Wednesday a “cut-off low” appeared on the weather screens and the heavens opened – almost like a sponge that had been squeezed just above us. From Wednesday morning to Friday morning we had between 100 and 200 mm of rain (depending where you were).

Even our catchment areas got good rain and so by the weekend, our supply dams went from almost empty to overflowing.  The Kouga Dam, our largest, started overflowing on Saturday morning. Of course, with this type of rain comes flooding and devastation, but luckily this was limited to localised areas of flooding.

It reminded me of the song that we sang as kids at the Methodist Sunday School in The Strand:

 “The Wise man built his house upon the Rock … and the rain came tumbling down.

The rain came down and the flood went up … and the house upon the rock stood firm.

The foolish man built his house upon the Sand … and the rain came tumbling down.

The rain came down and the flood went up … and the house upon the sand crashed down!”

The Herald reported on Thursday 9 June 2011: WEATHER BRINGS MISERY – AND RELIEF!

And isn’t that so true of Life – both literally and figuratively?

In the last few years and months, we have seen buildings tumble down around us in one natural disaster after another – fire, earthquakes, tsunamis, floods and volcanoes! Amazingly, in all the devastation, some people and buildings remain unscathed whilst the rest is obliterated. And after the event, we learn lessons, and we see a brand new coming out of the old, and often the new is better than the old!

We have a Coral tree in our front garden. When I bought the house twenty six years ago, it was a small little tree. Over the years it has become an imposing chunk of nature and a beautiful feature. But in the process, its roots have shifted and lifted the paving and the concrete driveway. Last week, just before the rains came, Wiseman – the paver, came in and lifted all the paving, removed the roots and relaid the pavers – far better than they ever looked before! But the rain came and tested the paving and in some places it was found lacking – so we were able to lift it again and improve it again. Now we have a perfectly new paved area!

That’s how we are forged in life. That’s how we become innovative and inventive and create better lives for ourselves and our children and our world.

The storms of life hit us all periodically and the lives that we build in this world are so dependent on the foundations upon which they are built. Each of us chooses our foundation and daily builds upon it and when the storms hit us, do we succumb to the onslaught, do we just survive, or do we come out of the challenge a better person, bevelled and shaped by the event?

Difficult situations require ingenious solutions; hence the saying “Necessity is the mother of invention”!

And, yes, the storms come after the fair weather, as surely as night follows day, as winter follows summer and as flood follows drought.

I am ecstatic that we can kick the bucket, the gardens are watered, the pool is full and all we now have to wait for is the local Nelson Mandela Metropolitan Municipality to officially lift the water restrictions. The press reports today that it may take them a few weeks to make this decision. (Of course, according to the economic principle of supply and demand, water costs have been escalated during the drought, so one could not expect them to get rid of this cash cow too soon!) It would appear that Port Elizabeth is the only city in the world where one can experience floods and water restrictions at the same time!

But, in my ecstasy, there is also agony.

This past week has become the most difficult time since I became ill. Slowly, the disease takes more and more from me. I think I should be renamed ESKOM – sometimes there is power and sometimes not; sometimes things work and sometimes they don’t! Sometimes, I look so good, and sometimes not!

Now, the CBD is making it difficult for me to sit, because, like all the other unused muscles in my body, the glutes in my buttocks are also atrophying.

When I sit or lie down on my back, it is directly on the bone and causes havoc in my left leg and foot. It is not sore but so uncomfortable. The most comfortable position now is to remain standing, and, of course, unlike a giraffe, I cannot do that all day and night! Last week, Thursday, my leg would not work and as the rain poured down, it became the first day since I became ill, that I remained in bed all day, just trying to find a way of making myself comfortable.

But, on Friday morning, I got up to have lunch (uncomfortably so) with Andrew Barton and Rob Elfick. The sushi at Fushions was good (as always), the Amstels (just 2!) refreshing and the company was excellent. Thanks, guys, for making the long days shorter, and for always being there for me from the very start of this challenging journey.

And now, more gym, more exercise and more walking on the golf course! Last evening, as Sean and I walked along the 5th, him with his golf club, the sun was setting in the west and everything looked so clean and fresh after the heavy rains.

God had washed the windows of our world this past week and we saw that it was good. 

However, necessity demands another invention. So we have to find a way of enabling me to sit down comfortably. That will be today’s task!

 

I asked for strength and God gave me difficulties to make me strong.

I asked for wisdom and God gave me problems to solve.

I asked for courage and God gave me dangers to overcome

I asked for love and God gave me troubled people to help

I asked for everything so I could enjoy life.

 

 Instead, He gave me life so I could enjoy everything.

I received nothing I wanted.

I received everything I needed.

 (anonynous)