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!