Flying High!

Monday 1 August 2011: 4 years 11 months on … Advantage ED (Lyrica?)

Last Wednesday, on our AlgoaFM radio programme “ED is in wED”, Lance and I had the privilege of interviewing Hannes van der Merwe.

He was diagnosed with muscular dystrophy at the age of seventeen.

But it wasn’t his illness we spoke about – it was his grit and determination.

One night, a few weeks ago, he was attacked in his home by four intruders. They ransacked his house, took his belongings, tied him up, put everything in his car, took him, his belongings and his car, went to a number of ATM’s forced him at gunpoint to withdraw his money, then took him to a remote spot between Despatch and Uitenhage and, in the middle of the night in the icy cold weather we have been experiencing, threw him out into a deep ditch next to the secluded road.

Left to die!

But his courage and determination (and luck / chance / God – delete whichever you think is not applicable) saved Hannes.

Some chance pedestrians found him there, and Hannes was saved to tell the tale on our programme. (You may listen to an interview with him on the AlgoaFM website www.algoafm.co.za.)

The previous Wednesday, after my radio show, I met Gabi van Rooyen and her Mom Debbie at Bluewaters Café.  Gabi is a five year old with muscular dystrophy and who faces her challenges with the most beautiful smile on her face. She had been featured in The Herald that morning.

On Thursday evening, I shared a few beers and a few stories with friend and boat fundi Len van Kempen at Dagwoods. I first met Len in St Francis Bay when we bought our boat, Rolls. Since then, he has always been close at hand when we have had problems with the boat.

He told me about our pharmacist, Shaun Kennedy, at St Francis Bay who recently, with others, was dramatically rescued at sea one night from an overturned yacht near the southernmost point of Africa, Cape Agulhas. 

Their stories are just three of many that display true strength of grit, determination and survival – a salute to the triumph of the human spirit.

I am kept going, and kept determined, by these and similar stories of survival – and by more and more drugs.

I am becoming a substance abuser of note – and the latest drug to be added to the list on Thursday is Lyrica (with active substance Pregabalin). Previously, I had faxed my neurologist that the spasms I was experiencing were becoming intolerable. Despite trying every device, cushion and chair in the book, sitting down had become just impossible!

He suggested, like everything else I have used, that we “trial-and-error” a new medication. So when I collected the capsules from the pharmacy, I asked for the paper insert. I’m not sure if anyone ever reads the insert – if they did, they wouldn’t take the medication! – but  I have learnt from all the previous “trials” that I need to prepare myself for any of the possible side effects that these tablets bring about.

I don’t always understand what I’m reading in these inserts but I give it a go anyway.

Lyrica is classified as a central nervous system depressant – an anticonvulsant (including anti-epileptics). It is indicated for the treatment of adult patients with neuropathic pain due to Herpes zoster infections (shingles) and diabetes. It calms the nerve activity in the brain. I see it is also helpful to take it in conjunction with small doses of medicinal marijuana!

The rest of the information I don’t understand, and the list of possible side-effects (from common to rare) takes up a full column of the double-columned 60cm long white sheet of paper!!! Is there anything that may not possibly happen?

Anyway – after five years (almost) of being ill, I’m used to being a guinea pig.

So, at 2 x day – with or without food, let’s see what these do!

On Friday, I was flying high, and I haven’t landed yet! I can sit comfortably and the spasms are currently few and far between and, through all the haziness, I feel like I’m on a trip … to where?…

Well, I’ve been on the go ever since …

Thursday night was Dagwoods – just a few beers on top of the medication!

Friday was a trip to the Home Expo.

Friday night was out for supper at the Cape Town Fish Market.

Saturday morning was the rugby test – SA Springboks against the NZ All Blacks in Wellington, New Zealand.

Saturday afternoon was back to the Home Expo.

Saturday evening was dinner and the musical show The Good, the Band and The Ugly at the Old Grey Club.

Sunday morning was a lie-in until eleven! – I haven’t done that in ages, but obviously needed it!

And the rest of Sunday was spent braaing at the Stapletons.

That’s the way I like it – busy, busy, busy. And when you are feeling good, it makes it so much easier to be able to do things, and when you are able to do things, it makes you feel good, and so the upward spiral continues. How long will this high last? I don’t know, but long may it continue!

Yes, the pills have their side-effects. I am blurry eyed and everything is hazy. (I thought the Test rugby out of New Zealand looked blurry because we were beaten so badly!)  I am Swinging High (lol … also the name of a show that I starred in on Broadway – that’s Broadway Street, Sulphur, Oklahoma, on which our High School is situated and where I played Mr McDuff, the English School Principal). I’m not quite in control of myself (which is a bit worrying) but I’m flying high – which is great for the moment.

It also made it easier to accept that, for the first time in twelve years (I think?) we weren’t going to Bloemfontein to watch Grey play Grey. With Sean out of school and Phillip not playing rugby this season (for medical reasons), we didn’t have a son playing there this year. So a trip was unnecessary, although Sean managed to wangle a lift with the Westcotts to go and watch, and that left Phillip unhappy at home.   It seemed strange not to experience the Gariep Dam, the Bloem City Lodge, Springfontein’s Kuilfontein B & B and the Gathmann’s and their farm, the cold and frosty Bloem mornings, the expectations and exhilaration of beating Grey Bloem and the disappointment of losing, the train trips, the Kalahari Dot Fish restaurant and the Bloem Waterfront. What wonderful memories we have all those sporting trips that we have undertaken over the years. 

But the pills and the weekend activities made up for it. As did the music …

Saturday evening’s popular tribute to all things cowboy and country, The Good The Band and the Ugly, had me glued to my seat.

Joining forces with Black Peppa Caterers and the Old Grey Club, Centrestage (owned by ex-pupil of mine Gary Hemmings) brought dinner theatre back to Port Elizabeth. The band paid tribute to The Highwaymen, CSNY, The Eagles and The Travelling Wilburys. We also heard the music of Johnny Cash, Willy Nelson, Waylon Jennings, Kris Kristofferson, Joan Baez and Janice Joplin.

The band was made up of keyboardist Khanya Matomela, Old Grey Russel Sneyd on drums, Old Grey (and another ex-pupil of mine) Joe van der Linden (bass guitar), Claire Harmse (keyboard), Alan Kozak (lead guitar and covering Willy Nelson and George Harrison), Francios Hugo covering Kris Kristofferson, musical director Wayne Kallis appearing as Waylon Jennings  and Lionel Hunt covering Johnny Cash and Roy Orbison. (Lionel is South Africa’s premier Elvis Presley tribute artist and lives in Port Alfred, where he offers his talented services “Anything relating to the King of Rock ‘n Roll” on 083 457 0720.)

We heard all-time favourites such as Ring of Fire, Walk the Line, Ghost Riders, Boy named Sue, Help me make it through the night, Me and Bobby McGee, Southern Cross, Desperado, Heartache Tonight, the Night they drove Old Dixie down, Piece of my Heart, You got It, Pretty Woman, Don’t bring me Down, Hold on Tight, Here comes the Sun, Got my mind set on You, Just like a Woman and Forever Young.

It was Shakespeare, in Twelfth Night, who wrote:

If music be the food of love, play on…

So, on Sunday morning, I found my old Roy Orbison music … and The Seekers … and Olivia Newton-John…and The Hollies, the Beach Boys, the Mamas and the Papas, Creedence Clearwater Revival …

The volume was turned up high, my foot was tapping and the pills complimented the music.

 And the CD’s went with us to the braai at the Stapletons, and we reminisced …

Music to the ears.

Life is Good!

 

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

 

CIRCUIT BREAKER (version 2)

Tuesday 1 February 2011: 4 years 5 months on …

There are a number of neuro-degenerative diseases. Most people have never heard of them or have needed to pay much attention to them.

At the end of 1999, shortly after returning from a two-week study tour to the University of Disney World in Orlando, Florida, I had undergone surgery to rectify a herniated disc in my neck. A piece of my right hip bone was used to fuse two vertebrae in my neck!

In September 2006, just before my 50th birthday, I became aware that my left hand and arm were not functioning properly. As these were similar symptoms to those that had appeared previously, I thought that it was merely a recurrence of the problems of 1999. However, that was not to be, and it was after six months of medical tests that I was advised, on Thursday 8 February 2007 that I, most probably, had, what was referred to as an extra-pyramidal Parkinsonian disorder called corticalbasal degeneration. I was informed that I would become severely incapacitated within three years, BUT I was also told that there was a possibility that after five years I would possibly be able to return to sue the specialist for having made an incorrect diagnosis.

I have subsequently searched the internet and read many articles on CBD and various other neurological (and other) disorders. Most people have heard of Parkinson ’s disease (PD), but even then, more often than not, joke about the condition as the one where people rattle and roll and shake tea-cups and drop their cutlery. In fact, there are many differing types of PD, and no two people may have exactly the same symptoms. Some people with PD do not even have the shakes!

There are numerous neurological illnesses, diseases or syndromes or whatever you want to call the affliction. In my reading, I have encountered many, such as corticalbasal degeneration (CBD) – sometimes referred to as corticobasal degeneration, or corticalbasal ganglionic degeneration (CBGD). Then there is Amyotrophic Lateral Sclerosis (ALS) – in the USA often referred to as Lou Gehrig Disease, Motor-neurone disease (MND), Progressive Supranuclear Palsy (PSP), etc etc. (Often Muscular Dystrophy [MD] is also thought of as a neurological illness, but is, in fact, a hereditary muscle disease that leads to paralysis.)

It would appear that even two people diagnosed with the same illness do not necessarily experience all the same symptoms.

Two well known people with the same diagnosis: Morrie Swartz – of  the book / movie / stageshow “Tuesday’s with Morrie” fame had ALS, diagnosed in August 1994 and given two years – he died slightly more than one year later. Professor Stephen Hawking was diagnosed with ALS at the age of 21 in 1963 and given 2 – 3 years to live. He is still alive today at the age of 69 – completely paralyzed and speechless.

There are a whole lot of boxes each with a different label depicting a different condition. The problem is that it is extremely difficult to put a specific condition into a specific box. The reason being that these conditions all seem to overlap and symptoms from one condition or one patient may or may not appear in another condition or in another patient. And all they have to go on are the symptoms that they are able to observe.

To complicate matters more, it is almost impossible to conclusively put a condition into a specific box (or give it a specific label) unless one delves into the deep recesses of the human brain. And that, of course, is impossible until the person has died and the medical fundi’s are then able to scratch around in the brain and decipher just what went wrong! In more than 50% of cases of neurological disorders, it has been shown in death that the diagnosis in life has been incorrect! 

I say it’s like taking your car to the garage – telling them that there’s a problem in the engine and asking them to please tell you what it is, and to fix it, but not allowing them to open the bonnet of the car to check on anything. The most they can do is to listen to the sounds and watch the problems! Now that’s quite a tall order!

 There also appears to be quite a bit of confusion between the various disorders and their causes, so recently on the radio I attempted to explain it as best I could in the following manner:

Most people are familiar with an electrical circuit: there is the battery that provides the current that runs through the electrical wire and that illuminates the electric bulb in the circuit. In order for the bulb to light up, all the parts in the circuit must be in working order.

If any one part does not work, the bulb does not light up. If the battery is flat, or the bulb is fused or the wire is severed, short-circuited or not connected properly, then the bulb will not work!

If one compares this simple illustration to the human body, then the battery is the brain, the wire flex, the nerves and the bulb the muscles. In order for the muscles to work, the whole circuit must be in working order.

In the case of my CBD, the problem lies not with the muscles (the light bulb) or with the nerves (the flex), but with the battery itself (the brain). The brain cells that manufacture dopamine (a chemical required to convey the messages (the current) from the brain to the muscles have malfunctioned and no-one knows why. So the dopamine goes into short supply, the battery goes flat, it can’t be replaced or recharged, and, therefore,  the messages from the brain do not get to the muscles and they stop working! In fact, the muscles start contracting and that’s why my limbs, fingers, toes and shoulders have started curling inwards.

With other neurological illnesses, the problems lie with other brain cells, the muscles themselves or with the nerves, also resulting in paralysis, but resulting from a different cause.

Unfortunately, my battery this week appears to have gone into an ESKOM load-shedding mode, and I have not been able to finish off this blog. Instead, I have spent time with the medical professionals and popped some more pills!

PLEASE BE PATIENT – WE HAVE A PROBLEM!

 THE TECHNICIANS ARE WORKING ON IT AND WE WILL BE BACK AS SOON AS THE PROBLEM IS RECTIFIED.

Sunday 6 February 2011 …

 Circuit Breaker (continued) …

In MS (Multiple Sclerosis), for example, the problem lies with the flex – the nerves themselves. Nerve cells communicate by sending electrical signals down the flex – long fibres called axons which are wrapped in an insulating substance called myelin. In MS, the body’s own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer effectively conduct signals, in the same way as when the plastic covering the elctrical wire in the flex is damaged and a short circuit is created. The earth leakage blows and the bulb does not glow. In the human body, various neurological symptoms appear, including physical and cognitive disabilities.

In the case of muscular dystrophy (MD), the paralysis is caused by hereditary muscle diseases that weaken the muscles themselves. MD is charcterised by progressive skeletal muscle weakness, defects in muscle proteins and the death of muscle cells and tissue.  

Motor neurone diseases is the term sometimes used to cover, almost as a group, all neurological illnesses that SELECTIVELY affect motor neurones, the brain cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. I have highlighted the word SELECTIVELY because it is obvious (from examples above and from case studies that I have read) that it is highly unlikely and unusual for any two people, even those diagnosed with the same disease, to have the same symptons.

What is frightening though, is the number of people who have these diseases and yet how little is still known about cause, treatment and prognosis. Unfortunately, I have not been able to source figures for South Africa, but the following are estimates for the USA (which has a population of some 450 million people – 10 times more than RSA):

  • Total number of people with a form of degenerative neurological condition – more than 6 million
  • Parkinson Disease – 1,5 million
  • Alzheimer’s Disease – 4,5 million
  • PSP – 20 000
  • MS – 400 000
  • ALS – 30 000
  • CBD – 10 000

 It would be interesting to research just how much money is spent globally on researching these illnesses. When I attempted to raise money for research work into CBD in South Africa, I was told that no such research work was being done in this country. Much research is done on the brains of those people who live and die with neurological illnesses and donate their brains to medical science.

Last week, I saw the medical people.

This week I have to see the legal people.

I won’t be leaving much material wealth behind. Anyone want my brain?