The good, the bad...pages 44 to 55

NOVEMBER 2004
WEEK TWELVE

This week seems to be a week of things not working. The motors on the driveway gates went haywire, my PC screen decided to burn out, the front number plate of the car didn’t like the position it was in and decided to relax on the floor. What the hell, they’re only mindless materialistic things. So what if my nervous system is haywire, my immune system is slightly burnt out or, I like to relax on the floor. At least I don’t have to call someone out to repair me. I just need to send some motivational impulses through the grey stuff and there we are. Easy huh. As Brad would say “No sh#$ Sherlock?”
Making a calf muscle is becoming old hat now, the trick, is to put the strength back into them. I must, I must, increase my…
I started to move my ankles over the last few days. Normally they are stuck in one position, or when I pick a leg up, my ankle can’t maintain it’s place and my toes point to the ground. No matter how small or insignificant the movement, it’s another sign pointing the way to getting some, if not all, of my life back.
2001
MS was rude to me this year. Absolutely no respect what so ever. I’m hitting the big four oh and MS steps in with a monopoly twist. “Go directly to hospital, do not pass go!” I didn’t even get a chance card, and I got to do it twice. Entebeni hospital is becoming a home away from home. It’s got so bad that all the nursing staff keep welcoming me back, they know me, my family and most of my visitors. They even know where to find me when I go walk about. Who knows? Maybe I’ll get a “Most Valued Client” discount card.
This is the year that I started to use a walking stick. My balance was being eroded away, my right leg had a mind of it’s own, and just looking at the distance to Arnie and Jax’s house next door made my leg cringe. Of course my leg knew that I couldn’t walk a straight line and automatically doubled the distance. I think that the best summing up of my walking came from a comment in the local super market early one morning. “My word, look at the time and the man can’t even walk straight.” I didn’t say anything; I didn’t want to burst the poor lady’s bubble. No sweat, have a laugh on me.
This is the year that daily medication started, sleeping pills at night, painkillers during the day, cortisone and various others. Pain is generally not associated with MS, but for me, it was part of the day. Sometimes I could ignore it, other times I would pop a tab, sometimes two. I even got sweet Mary Jane in on the act; she was certainly cheaper than pills but had a major draw back. After a couple of hours, she would let me come down with a serious bump. Also, walking around the garden with her was a hoot. Now I had MS and I was stoned. I had to learn things the hard way.
In April I was put on one of the three drugs developed for MS sufferers, Rebif. It’s an injection three times a week, and it’s not cheap. I was thankful that I had kept up my medical aid who bore the brunt of the cost. I am also extremely grateful to the International Lions club of Pinetown; they took care of the surplus for the year. It’s just a pity that the stuff didn’t work, at least not on me, but then there were no guarantees that it would. Ross became quite adept at giving me an injection, it was the one time he could stick it to me and not get into trouble. He couldn’t wait to tell me it was injection time. He would stand and wait until everything was prepared, use the alcohol swab on my skin, then inject me. Not surprisingly, Ross has never been afraid of an injection since then, he’s quite proud when he gets one.
Mowing the lawn became increasingly difficult and I slowly became a sideline gardener. I love physical work; I can sit and watch it all day. Everyone pitched in, from Glynn to my folks to Arnie. My gardener even got involved although his main aim was to nurture a descendant of Mary Jane who was proudly sitting on the boundary of my property. Of course he reaped the benefits and left me with the small change.
My eyesight was starting to become a problem. I was getting blurred vision towards late afternoon especially if I was fatigued. So my driving habits changed, I only drove around during the mornings when I was feeling fresh and alert. If I needed some thing done in the afternoon, I either put it off till the next day or, shouted for help. The blurred vision never lasted long but it made me wary. Then, double vision, some times more, would kick in every now and again. Again, I learnt to work around it, and took it in my stride. Slowly, my independence was being stripped away, little piece by little piece. It is not a feeling that I enjoyed, but it was something that I had to endure. My vision was a major factor when I stopped driving some months later. That was a serious blow to independence.
This was a year where I started to rely more and more on Glynn. As usual, Glynn accepted it without complaint; it was just another day with MS.
22 November 2004
Since my stem cell therapy three months ago, I have not had one incident of blurred, double or quadruple vision. It’s like I never had the problem. Now if I can get my right leg fully functional again, maybe I can start driving again? Then again, maybe I should start looking at hand controls for an automatic. Independence is within reach again.
This is also the week that my airticket to Switzerland has been confirmed. I am going to meet the rest of my family and spend Christmas and New Year with them. Now I have an idea of how Debs felt when she came out to meet me for the first time.
Life’s a journey, enjoy the ride.

NOVEMBER/DECEMBER 2004
WEEK TWELVE ONWARDS

The twelfth week is now history and I have regained some of the last five years of my life. I have this craving to travel back in time to June 99 to when I was a normal oke. Glynn will probably tell you that I wasn’t normal by any means. All I want is one day so that I can feel what it is like to walk unaided, run in the garden, walk along the beach barefoot or kick a football around. I’ve forgotten what it feels like. Talk about extra terrestrial feelings.
I have my hopes and goals, but I have to slap myself every now and then to remind myself to think realistically. It took five years to reach my state in August of this year. This stem cell therapy isn’t like the instant coffee, just add water and it’s perfect scenario. It’s going to take time; it wouldn’t surprise me if it takes over a year to get back to a decent stroll down the road.
29 November 2004
Summer temperatures are coming in to effect as each day passes. Dealing with the heat is one thing; humidity is a totally different ball game. This passed weekend it felt like I had this great weight pressing down on me. Getting up to wander down the passage was an effort in it’s self, it felt like I was walking with a thick blanket around me. My right hand side kept telling me “This bus has been hijacked, it ain’t going nowhere, no how”. This year that little rebellion can go take a hike. Where there is a will there is a way, so what if I’m going nowhere slowly. At least I’m getting there. I think my nervous system is peeved with me, I’m not taking any notice of it.
The heat plays havoc with my fingers, especially the right hand. The tingling sensation comes back full force and my strength ebbs away. It feels like someone has wrapped cling film around my hand and fist at the same time and opening and closing my fingers is extremely slowed up. Holding something, like Ross’s Lego is damn near impossible. Typing with my right hand is comical, I would never pass a speed test, half the time I’m making corrections because my hand has decided it wants to spell its own version.
The funny part, the solution is so simple, like I’ve said before it’s the simple things that work. When it’s really hot and humid, I take a cold shower or put a wet dishtowel around my neck to drop my body temp. It works like a charm. I tried the same thing for my fingers this morning, hey presto, instant relief. It doesn’t last for more than half an hour, but it works. That’s the main thing.
This time last year, I was like a couch potato. The heat would come and I would sit and do nothing, basically, I was man down. This year, different story.
Anyone for a dance?

30 November 2004
I wake up every morning and try and see if there is something different about the effects of MS. There hasn’t been much change of late; just all the earlier changes are lasting longer and longer. It is such a pleasure to roll over in bed and not have to move or bend my legs by hand. With each passing week it gets easier, maybe one of these days I’ll be able to hop out of bed like they do on the TV adverts. The tingling in my hands, is non existent for the first hour or so of the day. When it does eventually decide to make an appearance, it is only in my right hand and very minimal. The battery must be wearing out, unless it’s a stinker of a day, then it’s fully charged. The muscle spasms and tremors are so minimal that I forget that they are even there and within seconds they are gone. So the first movement and first walk of the day is so much easier. The clock work toy look is now out and the marionette walk is now in, as long as who ever controls the strings doesn’t jerk them unintentionally.
This simple thing came to me this morning, I’m thinking about my walking and my balance too much. The more I think about it, the more difficult it becomes. In general one doesn’t have to think about such things, it’s a natural pattern in life. Now I have to recondition my way of thinking. I tried it this morning whilst I was in the shower. It seems to work; I didn’t have to grab the grab handle so often. Now my brain is in conflict with itself, this is serious mind over matter stories. I tried the same thing walking through the lounge afterwards and I had four steps without a problem, then my brain kicked in and reminded me I had no balance. Okay, so there are a few ladies out there with a comment, us males don’t know how to multi task? We’ll see.
These stem cells have given me a serious boost in life and by the looks of it, more and more messages are getting through my nervous system. My ego’s pumped again.

2002
2002 was ushered in without too much fuss. In fact it was rather quiet and subdued. Glynn had recently been hijacked at gunpoint and her car forcefully removed. The replacement car was stolen within weeks of obtaining it and the next replacement car was a dud. So we have become just another statistic, bit of an old cliché now. We were really hoping for a good year.
I stopped driving in February, I felt that I didn’t have full control and my eyesight wasn’t up to scratch. Giving up that bit of independence was extremely hard, I can understand why some people keep driving when they shouldn’t. Now Ross and I had to rely on Glynn to go anywhere or do anything. Believe me, it’s not a nice feeling. Another bit of my life has been rudely snatched away.
February was also another move for the family. Glynn was offered a great job with Selborne hotel and golf estate in Pennington. We had both worked there before and were quite happy to move back. On the day of the move, I was relegated to a chair and told not to move a muscle. Heavy physical work was out for me, so I had to be content with watching someone else work. I could get used to that quite easily.
I recall that at some stage in the year, Glynn’s car had a punctured wheel. I was asked if I could manage to sort it out. No problem, I said. Ha bloody Ha Ha, famous last words! What should have been a ten-minute job, turned out to be a ¾ hour job. Kneeling was almost impossible for me, my balance decided to play hide and go seek and my strength, well; we won’t talk about that. Then there were the comments from the sidelines; they weren't nasty or such like. Try it this way, or, can I do it for you. I did it through sheer bloody-mindedness. I just wanted to be able to do a simple task, have that feeling of knowing when called upon, I can deliver. That’s certainly the last time I change a wheel in my present state.
I had two relapses during this year and the staff of the neuro ward at Entebeni hospital welcomed me back with open arms. It was like a reunion. The Rebif injections that I was on didn't seem to be working and my MS was progressing.
This was the last year that I had a semblance of normality, if one can say it whilst having MS. Each week I would slow down a bit more, the walk I took Ross on one week, would be shorter the next. The morning at the beach became a couple of hours and was finally whittled away to no more beach. Going to the local shopping mall went the same way. The effort of walking was becoming more difficult and there were spin offs from this. I started to fall over more often and, although we made a joke of it, some times it was bloody sore. I didn’t particularly want to fall over in public, especially if there were little old ladies around who liked to comment about the state I’m in early in the day. I’d be gossip for tea parties to come. Another problem that came to the fore was my bladder control. I was loosing it and accidents were happening more often. It’s one thing having an accident at home, but in the middle of a shopping centre? No thank you, don’t want to go there, and I certainly don’t want the T-shirt.
This year went out in style.
NEW YEAR AND MS

Towards the end of last year (2002), Glynn received an invite to a New Year bash. She duly came home and, passed on the good news with the following advice. “You will stay quiet and relaxed for the last 2 days of this year, we are going to have fun until midnight”. The 30th Dec duly arrived and I spent 2 days doing absolutely nothing. I was not going to get stressed out, Ross was his normal over energetic self, and he had me twisted round his little finger. Every time I opened my mouth to say something all I got was “ Don’t stress Dad”. No problem I’ll sort you out in the New Year.
Now you have to realise that I haven’t been to a formal function since Sept 2001, and even then I battled to dress up. Putting on a pair of socks was a major endeavour; we won’t talk about knotting a tie.
It was time to get ready, it was also the time to get real, the word formal just flew out the window. After three and a half years of MS my waist size has some what enlarged, through (I’m reliably informed), the relaxation of my muscles. Damn, no more six pack abs. You have to believe me, I’m not a big beer drinker or a big eater. Anyway on with the pair of smart longs, off with the same, on with the pair no 2, off with same. I tried 4 pairs; the “S” in stress is starting echo in my head. I find an old pair of khaki longs and I manage to squeeze into them, you know the ads with the girl poring herself in to the tight jeans, well you got nothing on me babe. Next come the socks, I never wear socks, I spend most of my life barefoot it’s so much easier. The only socks that I have are the ankle types with motifs on them, great, black socks (with Sharks logo) and khaki pants. Who says those two colours don’t go. Now black leather shoes, oops! Sorry, slippery soles and no sense of balance don’t go together, I couldn’t skate when I was normal let alone with MS.
So now the bottom half of my attire is totally informal, and I keep telling my self don’t stress, fat lot of good that does, once the process starts there’s no stopping it.
Hey what do you know the shirt fits, I just can’t do up the buttons especially the cuffs and the collar. Glynn! Tie, Glynn!!!!!
Half-and-half is not bad, I’m going to be sitting at a table, no one is going to see the informal half, so I’m formally dressed and stressed.
So now we are ready and off we go, Ross gets dropped off at friends, and there we are, at the function. I am left at the entrance whilst, Glynn parks the car, and I’m standing there balancing on my walking stick trying to look ever so nonchalant. People are walking past me and the greetings are flowing back and forth, I was quite amused, I’m sure they thought I was the doorman. Hey, Brad, Denise you owe me.
We make our way through to the dining room, I thought cool, not far, just around the corner. I’ll get there no problem. Wrong! The dining room’s been extended, not only that but our table is on the patio outside the extension. In for a penny, in for a pound. I can’t walk far at the best of times, a walking stick becomes a lethal extension of the arm, I get my feet caught up in it, it gets jammed between chair legs or the worst, it gets rooted to the floor. The message my brain sends to my arm telling it to lift and move doesn’t get there; it gets hijacked along the way end of story, hello floor.
I’ve got used to falling over; the odd graze or bruise is borne with fortitude. Falling over in front of people I know is one thing, it becomes a joke and we all have a good laugh, even when it hurts, but I refuse to kiss the carpet in front of people that I don’t know.
So now we have to negotiate two dining rooms, I haven’t done an obstacle course since army days. Concentration time, I literally close my self off from all around me and it’s a case of lift your leg, move it forwards, keep your balance, grab the back of that chair, stay upright and so it goes on. People greet me, I’m not being rude, it’s a case of I’m doing one task at a time, my aim is to get to my seat without mishap, come talk to me later.
Hey, I’m in my chair, relaxed, with a glass at my hand what more could I ask for.
I made it to midnight and beyond, I still don’t know how. By 3am fatigue had set in, my speech was slurred, my balance was unbalanced, and before you say it, no it wasn’t alcohol I wouldn’t have made it to 10pm if it was. I learnt a few years ago that alcohol and MS don’t mix no matter how much water you mix with it. All I wanted was a quiet place to chill out and the magic word came up “Beach”. So we all traipse off to the beach, man was it peaceful, just the right place. There was just one small problem, MS, walking stick and sand, not a good combination. Every time I put my weight on my stick I lost 25% of it in the sand and I wound up on my knees. So I was befuddled, logic had left me I could hardly think further than the next step let alone what happens when 80kgs of weight is placed on a pole of 20mm diam on soft sand. That question never came up in matric maths.
Needless to say I saw the sunrise, and much later the sun set. I spent the next two days flat on my back with Ross’s words ringing in my ears “Don’t stress Dad”.
I’ll sort him out next week.