The good, the bad...pages 32 to 44

Diagnosed with MS
In June of 99 I was in a good job with good perks and it was a great way of life. I had my wife Glynn, my son Ross, who was 8mths at the time, life was looking up. We had been planning to go to Durban in mid June, my birthday, to visit our families.
Then one night whilst I was still at work my right leg just stopped working. I was walking to my bakkie and that was it, my leg wouldn’t move and I had this strange pins and needles sensation from toes to thigh. OK, so if you can’t get to the mountain make the mountain come to you, right. Ever tried whistling for your car? With a lot of staggering and wobbling I got there, I sat there for a while, the sensation disappeared and I could move my leg. I thought nothing of it and left it at that.
A couple of days later the same thing happened in front of colleagues, the usual comments flew about taking more water with it and such like. I got to my bakkie, sat for a while and all was back to normal. That weekend the wheels fell off, I was attempting to build a braai and was mixing concrete, all of a sudden I was extremely tired and my legs folded under me. This time it took forever to come right or at least some semblance of right. My right leg wouldn’t do what I told it to do and both arms and hands had this tingling sensation.
So it was off to the doctor first thing Monday. I limped in to his surgery, he didn’t say a word he just led me to the corridor and told me to walk up and down a couple of times. Like I needed that right then, by the end of a couple of times the right leg was barely functioning and I had to sit down. The doctor looked at me and said, “You’ve got a problem”. Like I don’t know that? Anyway he explained to me that he couldn’t help and that I had to go to a specialist, he had an idea what was wrong but without further tests nobody could tell me.
We were going to Durban in a few days so an appointment was set up with a neurosurgeon. Three days later after an 800km trip there I was, sitting in his surgery. He wanted to put me in hospital straight away, I said no way, it was my birthday the next day and Glynn and I had booked an over night stay in an hotel. He was quite adamant and I was just as so. The birthday didn’t turn out so well.
I spent 10 days in hospital, giving my blood freely for tests, then it was an MRI and after that a spinal tap or lumbar punch which ever way you want to call it. The MRI was one thing, you are in this cold room in a machine that’s whirring humming and tapping around your head, you’re shivering and a little bit nervous. You’re told to lie still and relax. You get your shivering under control, close your eyes and wait, listening to the noise around you. Then the machine’s tempo picks up so do your nerves and you jump, then you realise that you are still cold and, you start shivering again. There’s a speaker somewhere in the room and this disembodied voice calls out to you to stay still or they will have to start again. I was tempted to reply but stayed as still as possible instead.
The spinal tap is not as bad as it sounds, it’s not exactly comfortable but it is relatively painless the only weird part is having to move around with this needle in your spine with a pressure gauge on it, you feel like saying 2 bar all round please.
The neurosurgeon came to see me on the tenth day, he said that he was almost 100% sure that I had MS and he was now waiting on the results of the spinal tap, this would take another 6 to 8 weeks. I had no idea what those two letters meant.
8 weeks later I received the phone call.
I can’t remember my exact feelings but I do know that I wasn’t too worried at the time. I had faced challenges before, and this was exactly that. I just didn’t know how much of a challenge.
I’ve sailed through a cyclone, helped with rescue work during a cyclone, made an emergency landing in a helicopter. Life is life, how difficult could this be? That, is the burning question of the day.
28 October 2004
My exercising is improving. Last night I past the twenty mark on both ankle raises and squats. I can feel the difference in my thighs and my legs are definitely getting stronger. My lower leg muscles are going to take a bit longer but there is also a big improvement there as well. Just the other night I was standing in the lounge and I managed to pick my left foot off of the floor as if I was going to climb a steep step. My ankle responded by staying in the correct position instead of letting my toes to point to the floor. The more that I can do that, the quicker I am going to be able to climb a staircase. That is one of my goals at the moment, walking in a straight line with balance is one thing, climbing stairs without physically lifting my legs by hand, is another.
I got to think last night, of my family that I don’t know. Debs has paved the way forwards in this regard. All I want to do is get on a plane and go meet everybody. It was my second sister, Kim’s birthday yesterday and I got a birthday call through to her. Just listening to her gave me such joy and the thank you that I got for the call, makes life totally priceless. To Gary, my real dad, Debs, Kim and Greg, you are going to see me sooner than you think. To Robbie, hopefully, we will meet one day.
Day 19, no smoking. I don’t miss it, I don’t crave it and I won’t preach about it either.
OCTOBER/NOVEMBER 2004
WEEK TEN

Friday night was not good for me. For the life of me, I couldn’t get to sleep. I dozed fitfully and I kept finding myself on my back. That means one thing, I’ve been sawing wood again. One consolation is, I get the bed all to myself. Every one migrates to the other side of the house including the damn bird that is nesting in my ceiling. I still don’t believe that I snore. I can’t hear a thing.
Saturday night was even worse. I didn’t get to fall asleep; I didn’t get to snore either. I just lay in bed and pretended to sleep. I listened to one of my neighbours get ready to go fishing at 2am with all of his mates, that was good to knock half an hour out of the night. The dogs that normally bark didn’t, or should I say the people that normally walk passed in the early hours didn’t. I couldn’t even hear the surf like I usually do. The birds in the trees must have had a lousy night as well; they started chirping way before sunrise. I had a woodpecker and a Lourie giving their opinion at 4.15. That started all of them off.
Sunday was very slowed up; it was also very hot. I had a couple of beers during the afternoon. Suddenly, I was very tired.
Sunday night, I slept like a baby.
1999/2000
It’s amazing how fast this disease progressed once I had been diagnosed. From a fully active life to laid back in six months. Big learning curve, simple tasks become major obstacles. Breaking eggs in a pan, holding a glass, making a cup of coffee or walking around the garden with a hose pipe in my hand. I had to relearn how to do it with MS. The first thing I learnt was not to fight MS; I had to learn to live with it. The minute I started to fight, MS would rear up and slap me in the face. If I accepted the limitations imposed on me and figured out a peaceful solution we got along just fine. The simple solutions are generally the best. It took breaking four or five glasses, and the comment about the expense, for me to move my pinkie finger under my glass when I held it. That was an instant solution that still works today. I haven’t dropped a glass since then. Of course there are some things that have no solution other than, “Don’t do that anymore.” The best time that was used was for washing the dishes. I hate washing the dishes, my teenage years consisted of washing the dishes every evening and it became a pet hate of mine. One day Glynn, in a cool calm collected sort of way said, “Please remove your self from the sink, before you owe me a new dinner service.” I promptly removed my self, never to return. MS is not all-bad.
In October of 99 Glynn and I decided that it would be better if we moved from Malalane back to the Natal midlands. The heat was affecting me adversely and we wanted to be closer to the specialists and to friends and family. Within six weeks we were in a small cottage on the edge of a farm in Lidgetton. The temperature was a good 10 degrees cooler and I could get about a lot easier.
MS changes a person; it makes you more dependent on others. You soon learn who your real friends are. Others are left by the wayside. After five years, I have forgotten who was left by the wayside, those people can’t have been very important to me and likewise me to them. My best friends are still my best friends, especially Gavin and Mark, thanks guys for all ways being around.
Glynn and I have made new friends, and they have come to know me for who I am and what I have, not what I was or what they would like me to be. A big thank you to all of you, you know who you are. To those of you who have lost people by the wayside, don’t worry about it. They can’t have been true friends in the first place. There are more friends out there just waiting for you to walk into their life. If you have MS, tell them; be up front about the disease and its side effects. You may be pleasantly surprised at the eventual outcome.
Having moved into the cottage I realised that there are certain chores no longer in my capability. I’m not cut out to mow the lawn any more. One circuit round the garden and my legs were trying to find any excuse to find a shady tree. Come wintertime and an axe becomes a lethal object buzzing in the vicinity of fingers and toes. But I’m lucky; Mark lived a stone throw away. It didn’t matter what needed to be done, he was there. Admittedly the whisky bottle got seriously dented for the smallest of chores.
Mid July 2000, MS decided to get nasty with me. Glynn was at work, Ross and myself were at home alone. It was just another day, I had been coping fairly well up until then, I thought that I had a handle on MS. I was walking on the veranda when my lower back muscles went in to spasm. It felt like someone had placed an iron band around my waist and they were trying to squeeze it smaller and smaller. I dropped like the proverbial sack of potatoes, every time I tried to move this incredible pain would hit me like a train. I’m on the floor for a while that much I do know. I called Ross to bring my cell phone. A short while later a little voice tells me that it’s out of reach. Of course it’s out of reach, it’s to stop little fingers from playing. Some of our lessons have to be learnt the hard way. I make myself as comfortable as possible, I’ve got a good two hour wait before Glynn gets home. Ross now thinks he is in lala land, he is on his own, and nobody is following him around and telling him what to do or what not to do. I was hoping that he wouldn’t find a gap in the fence.
Two hours later Glynn arrived to a house in darkness, me on the veranda and Ross somewhere out of sight in the dark garden. Glynn’s normally conservative language made the dull day blue. Ross was found, I was picked up and some semblance of order was established. The next morning I found myself on the way to Entebeni hospital where I stayed for five days. Third time in hospital in one year, not bad going. I was put on a drip of cortisone, within minutes the spasm disappeared, the relief was immense. I was back home five days later and we made the decision to move yet again, to be closer to medical help.
2 November 2004
The combination of sleepless nights and a couple of beers on Sunday didn’t do me any good. Yesterday was a slow motion day, my upper body was fine, my legs decided to down tools and strike for better working conditions. Beer is out again totally, and if I can’t sleep, then Glynn is going to have to hit me over the head with a frying pan.
Today I am up and about with no problem, my walking is a bit slow, but at least my legs have accepted my terms. It’s amazing, the recovery time from a bad day just gets shorter and shorter.
3 November 2004
I’ve hit the 30 mark on the exercising routine, the goal is 50. I remember in my 20’s I used to go to gym three times a week. 3 sets of 50 was a piece of old tackie, and that was with a weight on my shoulders. Now there is no weight and by the time I get to 25 I’m starting to struggle. Number 30, and the legs are shaking and they really don’t want to hold me up. As Ross would say “Don’t be a wousie Dad.”
The weather is warming up now. Hot days are not my favourite; I slow down, get tired easily and fatigue kicks in often. Maybe this summer will be different, we’ll just have to wait and see.
I’m really determined to stop using the wheelchair, having it in the lounge makes for easy use. That’s defeating the whole object of walking again. I’m just a bit hesitant to shove it in the garage, but then again, out of sight, out of mind. Got to think about this.
5 November 2004
Okay! So getting rid of the wheelchair is not an option right now. For the last two days I haven’t used it, bad move. Obviously I need more time for my muscles to get their strength back. Today my legs do not want to hold me up and walk at the same time. I have to think with my head, not my heart. I so badly want to walk around that emotion takes the place of reason. I have to watch out, just now MS is going to slap me down and put me in my place.
There is a plus side to all this. With all the exercise and walking around, I actually became physically tired. At 8.30 last night I was sitting yawning my head off and I headed off to bed early. That hasn’t happened since the start of MS. So now I have to do a balancing act between the walking, and the chair. Once I’ve got that right, I’m A for away.

NOVEMBER 2004
WEEK ELEVEN

All this exercising is paying off. I was sitting in the kitchen the other night and I happened to tense my calf muscles. My calf muscle is back, admittedly it is not very big, but it is there. I haven’t been able to tense it up since I’ve been in the wheelchair. It’s funny how such a small thing like that gives you a boost of note. Not only can I feel a difference in my life; I can really see it now. So a bit more of the darkness gets blown to shreds.
I‘ve noticed that negative thoughts still create havoc with me. They seem to slow one down and motivation drifts away. Then some thing small like making a muscle turns it around, and one is ready to take on the world again. A lot of small things add up to one big thing. The big picture? That’s easy, I want to walk again and that is getting closer all the time.
Judy, this is for you. I’ve been thinking of you this weekend, I know what you are going through. I’ve been there but now I’m on the other side. Please take what I said and use it to your advantage. There is a light at the end of the tunnel, just how far you are going to have to stretch to grab hold of it, is the unknown factor. Remember that it is within reach.
9 November 2004
Ross has wound up in hospital with a lung problem and infection. It’s only when he is not here that I realise how much of a help he really is. It’s not just the fetching of this or that, he knows which buttons to push to make me do something or say something. He knows how to rev me up and he has learnt how far he can push me.
I wandered through to the lounge this morning and it was deathly quiet, there wasn’t a single toy or obstacle in my way. I didn’t have to step over, trip over or side step around anything. BORING! So my morning and afternoon escapades are out for the time being. I swear Ross puts things in my way on purpose, just to make me walk that bit further or lift my leg that bit more. Once I’ve gone past, the item is moved out of my way. When I come back, something else is there. So is the big beaming grin on Ross’s face.
I miss all the hugs I get in the afternoon, especially when I’ve negotiated one of his obstacle courses or when we’ve done something together. I hope he gets well soon, this house is too quiet without him. Gee, I miss the little guy.
11 November 2004
Ross came home yesterday, not his usual self but rather subdued. True to form, within half an hour he had set himself down on the carpet, colouring in book and pens in hand. He positioned himself in such a way that if I wanted to leave the lounge, I had to detour round him. There’s that grin again.
Today is an otherwise day. My motivation has done a Bruce on me and gone walk about. My legs do not want to hold me up and walking is one big effort that I can do without. Showering and shaving took what I didn’t have and gave me even less, if that is actually possible. So today is a wheelchair day. I really need this like I need a hole in my head. This is like a fight between good and bad. One half of me is trying to stay cool calm and collected, the other half is like a summer storm. Very short, very prickly and negatively charged. I just wish it would pass as quickly. It’s days like these that make one fight MS mentally, there are no boundaries in thought, no limitations or restrictions. If you can harness positive thought and imagination together, you’re off on a wild gallop that can do nothing but exhilarate and give you that get up and go factor. But that summer storm has to pass. With a little bit of help from my friends, it will pass in no time.
End of 2000
August of 2000 we decided that it would be better if we were even closer to Durban. MS being nasty does that to one. We started looking for a home in the Hillcrest area. Within a week or two a new home came on the market at a price too good to be true. Glynn and I duly took the bull by the horns and signed on the dotted line.
The word, disability, throws people into a flat spin. None of the banks that we approached would consider giving us a loan. It was all right at the outset; all the forms said pensioner under my particulars. The minute it said disability pension, the attitude changed. Luckily, we were pointed in the right direction by a very good friend and in next to no time had serious debt again.
By November we were in our new house, the only mishap being, the removal van broke down within sight of the house. Our first night was very peaceful and we got used to the sounds around us. The second night will never be forgotten. We discovered that we had party animal neighbours. There was just one problem, they became fixated on one song.
I went to sleep with the words “Come on baby light my fire.” reverberating around the bedroom walls. It was close; I nearly went over with my lighter. Instead of fuelling a cross the wall feud, we made ourselves known the next day and made some really great friends. The neighbourhood really rocked after that.
I think back to that time and try and recall how MS affected me. It’s quite difficult, my attitude then was, accept it and get on with life. I didn’t take note of what was wrong, in fact, I made more fun of it than anything else. I was still driving, but only for short distance. My right leg had the horrible tendency to stop functioning at the most inopportune times, be it driving or not. This of course led to hysterics from Jax and Arnie next-door. As I would make my way across to the inter-garden gate, I would find myself on my bum in the flowerbed. Legless in the garden. There were a couple of times that Jax was helping me negotiate the ‘flowers”… need I say more?
My eyesight was still fine, but I do remember that my hands and fingers were slowly getting harder to use. Holding a screwdriver, for instance, was one thing, but using it was another. My fingers would not turn it. Bringing in a packet from the car seems so easy, for me, within seconds; my fingers would start to open up. I didn’t have the strength to hold them closed. Then I would try with two hands, same result; the packet would slip through both hands instead of one. Talk about frustration.
My speech was starting to get affected, especially if I was agitated. I couldn’t get the words out or when they did come out, it was slurred. My thought process was slowing up considerably, especially if it was noisy, or there was too much going on. I recall when I was in the traffic police, one of my duties was to do the traffic reports on the then Capitol Radio. Apart from having to fly in a helicopter every morning, which, by the way, was the coolest thing out, I also had to adlib on occasion. You are flying a couple of hundred metres above a highway; there are no accidents or traffic jams or anything to speak of. You have 30 to 60 seconds of on air to fill without making an idiot of yourself. Then there’s the DJ, he’s trying hard to make you slip up and he does this for a living. I could do it then, I couldn’t do it now, and I wouldn’t be quick enough or understandable.
You add all this up and it makes for interesting talk. Legless in the flowers with slurred speech. You’ll never know if I was, or I wasn’t. I’m not telling!
12 November 2004
The power of the mind is an incredible thing. I was reminded of this last night by a friend of mine, Pam. For the last three months I have had such a positive out look, every other influence has been knocked sideways. It’s only done me good, Pam said that she could hear the change in me and that I have pulled myself out of the rut of the last two years. I now know where I'm going and that, is only forwards.
Yes, stem cell therapy works and I feel that it is the way forwards for many others. It’s not a drug; it’s not synthetic. It’s a natural product. That’s my personal opinion and I think it is going to help a lot of people with many different afflictions. Combine this therapy with a positive mind and you have a really powerful treatment.
BELIEVE ME, I’M DOING IT RIGHT NOW!
Yesterday started off as a drag, but it didn’t take long to shake everything off. By midday I was out of the wheelchair and staggering around the house. Toys were strewn all round the lounge and the obstacle course was endured every time I wanted to go somewhere. The drop in temperature, after the last few days of heat, has obviously played a role in the start of the day. But as I have said before, it takes less time for each lousy episode to turn around.
One month no smoking, I don’t miss it. Whatever was said or not said thanks Debs.