The good, the bad....pages 56 to 67

01 December 2004

I tried my stunt of not thinking about how I walk or balance. It actually seems to work. I walk a lot better and without wobbling so much. I can’t walk further, but that wasn’t the point. I still have my moments of uncertainty, but time should sort that out. I don’t know if I’m kidding myself, or anyone else for that matter, with my alternative way of thinking, but I’m game to try. I don’t have anything to loose, except maybe some face, and I’ve done that a few times in the last 5 years. It doesn’t hurt that much.
I haven’t had a bad day in almost two months now; I’m waking up every morning with a fair amount of get up and go. I’m looking forwards to each day without fear of what might happen. Dark thoughts are a thing of the past, shades of Grey may try and creep up, but it is so easy to dispel them. It is so easy to be positive, so what if I can’t do something; I’ll try again later. If that doesn’t work, I’ll try it a different way. Murphy and his laws can go suck eggs.
The warmer weather is bringing it’s own set of problems for me to deal with. But, and this is a big But, I can handle them. Yes the heat slows me down, but I’m not out. I don’t lounge in my chair with no inclination or motivation, panting like an over heated canine. Yes, I do complain that it is too hot, but it is half hearted and is generally muttered under my breath. Big who cares? I can handle this now. Last year and the year before was a different story, summer was just time out. Now the heat and all that comes with it, is all in a day’s work. It doesn’t take days for me to get over one day’s heat, as soon as it cools off; I’m back to “normal” no ill effect, side effects or curve balls.
Man, life is great.

I’ve found something else that I can do for myself. I have an old divers watch that I still wear. The date has to be changed manually at the end of a month with less than 31 days. Up until last month, I was getting Glynn to change it for me, I was all over the small wheel with fingers and thumbs that didn’t work, couldn’t feel a thing and had absolutely no strength or sense of humour. At the beginning of October I took my watch off and as always tried to change the date. This time my fingers and thumbs worked. I thought that this was a fluke, how wrong I am, I did it again this month. Easy huh!
03 December 2004
Beth popped in to give me a once over yesterday, and yes, she left with a smile on her face. Damn, I’m getting good at doing that. Of course I had to show off and make my calf muscle tense up. Murphy stepped in and made a liar of me, for the life of me I couldn’t tense the muscle, crash and burn with that little exhibition.
Exercising came up in the conversation; it’s one thing to exercise my legs, now I need to look at other areas of my body. My arms are easy to attend to and my paunch has all but disappeared through walking around. But my back muscles need attention, so it’s sit up time.
I did my little routine last night and so as not to push the envelope, I restricted myself to 20 squats and ankle raises. Then I lay down on my back. That was as far as I got. No matter how hard I tried; the most that I could do was lift my head off of the floor. My shoulders were rooted in place; sit-ups were not going to happen, at least not last night.
Next idea please
06 December 2004
This last weekend has been rather warm to say the least. There were a few times that I wondered if the little guy in a red suit carrying a fork wasn’t hovering around. I had a few tricks up my sleeve this year. I wasn’t going to let the heat get me down. It’s amazing what one can accomplish with a positive mind.
Saturday 8am, it was already 30 degrees inside and my nervous system was telling me that I was in for a hard time. My right hand felt like it had a fully powered up battery inside it; it was more of a buzz than a tingle. My legs were already deciding on a course of a go-slow action. So! That’s why I’ve got a wheelchair. My attire for the day was nothing more than a pair of swim shorts. I wasn’t going to worry about getting undressed for a cold shower, it was going to be in and out and dry off in the chair. That worked like a charm, so what if I dripped water all over the place, it was hot enough to dry quickly.
Just after midday I changed tactics, I could cool off and have a bit of fun. I got Ross to move the garden sprinkler to where we could both use it. Hey presto! Instant relief and fun at the same time. Score one to us, nil to hot stuff.
My exercising routine has taken a back seat in this heat, the willpower is there but the energy level has been sapped from me. I do what I can, but I'm not even going to talk about it. It’s pretty feeble. I’m still unable to do sit ups, I’ll get there.
08 December 2004
After five days of heat and humidity it started to cool off yesterday afternoon. I had already reach the point of “No ambition and bugger all interest,” my motivation was seriously lacking. Walking was a major effort, it felt like I had the last straw on my back and the damn donkey wouldn’t eat it.
By midnight last night, the straw had fallen off, and the donkey was wandering around bugging some other poor person, and I was strolling around the house because I could. The relief was intense and there I was fully motivated looking for something to do within hours of the temperature change. It is such a great feeling to knock MS side ways that I feel like being childish about it. Ja Jonky Ja Jong.
All the small things that are happening to me add up to a really big picture. Things are definitely improving. I’m no longer lying in one position in bed, that position being flat on my back. I can move around in bed like I used to, it may be slow movement but it’s there. I haven’t had a comment about my snoring for a while now, and the bird in the ceiling is still scratching around above my head, and hasn’t moved to the opposite side of the house. I still don’t know what all the fuss is about; I can’t hear a thing. Obviously, moving around has alleviated much of the snoring, if not all. Holding a knife and fork, now there was a challenge. It’s really frustrating when you have to rely on some one to cut your food because holding a knife, and pressing down on it becomes a joke. That nice piece of steak winds up on the floor and the dog loves me forever. A fork was no longer a fork, it became a shovel, and every time I used it as such I used to cringe inwardly. I wasn’t brought up that way; a fork was a fork. Now a days, I can cope fairly well, using a knife is only slightly irritating. That nice steak stays where it’s supposed to. Cutting a slice of bread and buttering it? It’s not pretty, but it’s edible. The shovel is back in use in the garden, and Shaggles (our dog) has only high expectations.

10 December 2004
I’m slowly getting used to the new messages that my body sends out to me. Yesterday it was a super cool day; I got out of bed ready for anything. The walk down the passage was a breeze and my morning routine was like clockwork. I was feeling pretty normal within the set parameters.
This morning, I jumped out of bed… Okay, shoot me, I lie. This morning, as I hauled myself out of bed, my nervous system was telling me to take it easy. I opened the curtains and there was that great shining golden orb in all of its brilliance. The mercury is going to rise today and my body knows it. Cool, cold showers and sprinklers are in order.
My sit-ups are coming along; I can get my shoulders off of the floor, so I’m looking at 25% of a sit up. This is going to be a, no pain no gain, exercise. I’ve got muscles telling me that they are around.
2003 January to November

A New Year, a new house. Yes, we moved again, it’s amazing, in the seventeen years that we have been married, we have moved sixteen times. We definitely have no moss on us, and there are other apt sayings, but I’m not going there.
I had no false illusions about MS any more. I now knew that I had a nasty disease that was very fickle. I began to lean more and more on Glynn, and eventually I saw that I was fast becoming an over burden. I knew that I had to turn to someone outside of my immediate family. Beth came shining through and became a ray of light in many a dull depressing day.
This year my MS progressed slowly but steadily, it never let up. A good day was a rarity that was cherished, bad days were the norm, and terrible days were dreaded. My walking was slowly being restricted; a walk around the garden changed to a walk around a flowerbed to sitting on the patio, and watching everyone else walk around. Talk about frustration.
July was a major turning point in MS and its effects on me. This was when I heard about the advances being made with stem cell treatments. All my time and energy became focused on this, and the more I found out, the more I felt that this was the way to go. This was the light at the end of the tunnel. I sent a ton of information to Beth and received the response I was after. Beth too, felt that this was the way to go. Between us we started the ball rolling. It wasn’t long before we came up with a new game plan, then we changed the rules. Why should I go to another country? What if we could import the treatment? Beth took the challenge and ran with it. By November we were ready.
During this year I continued to look at the lighter side of MS, I needed laughter in my life and laughter, is the best medicine.
What’s Cooking With MS?

I used to be a dab hand in the kitchen. Give me something to cook and a recipe, and you found a meal on the table. I’ve even experimented quite a bit, take one of my braais for instance, a leg of Lamb in amongst the chops and wors. At the time I was prepared to try anything once. That leg was the best thing I ever cooked. Since that day I would take what ever I could find in the kitchen and, well, make something tasty.
Now cooking is like Mission Impossible. It has to be preplanned to get the desired effect. A few weeks after being diagnosed (with MS), I decided to cook a simple meal for Glynn and Ross. How difficult could that be? That was when I realised that it wasn’t only my right leg that was affected, but both hands as well. All I wanted to do was break a couple of eggs in a bowl. I mean how simple is that? I had been doing it for years. It’s easy. Pick up the egg in my right hand, crack it on the bowl, move the fingers apart and there you have it. Six eggs later not one of them in the bowl, but dotted around the kitchen floor. I know you have to break an egg to make an omelette, but this was ridiculous. I have since relearned how to break an egg and aim for the bowl.
Anyway, to get back to mission impossible. I’ve developed a strategy that makes Tom Cruise look like a wimp. First it’s negotiating the passage through to the kitchen. Bounce off this wall on to that one, half slide half swing through the doorway and grab hold of the first counter top available. Now I have to access what I’ve got to work with, all cupboard doors, fridge and deep freeze open automatically. It’s a gizmo I have based on the yellow pages- it’s called “Let Ross Do The Walking.” He does the talking too. I’m looking whilst he’s telling me all about the jelly, custard or how many packets of chips we have. Now it’s time to get back to the comfort of my thinking chair. Same process, swing, slide, bounce and half trip in to my chair. Now I have to remember what I saw and see if I can do anything with it. Now my trusty gizmo comes in to action and he walks and talks and assembles the raw materials, plus the jelly, custard and all the packets of chips. The time for action has arrived. I have to get to the stove area and when I’m there I have to be totally focused. I only have a few minutes to assemble everything, set the timer and get out back to the chair. So, Ready Steady Cook, I just wish I had the full 20 minutes. Bob, weave and bounce through to the stove hob and island. Now the fun starts. My legs don’t hold me up for long, so I’ve developed the knack of bending my knees up against the counter. It works for awhile. I start chopping whatever has to be chopped and end up hacking. My feet start sliding on the tiles. Eventually after much lifting myself back into position, I swing over to the hob and dump the chopped/hacked stuff in to the pan, or at least most of it. Now I wedge myself into a corner and my gizmo does all the walking again, bringing the rest of the materials. Pour this, spill that, oops dropped the egg and so it goes on. Slam the lid on, turn the heat up and I’m out of there. The mess I’ve left behind, well that’s just an occupational hazard.
Glynn gets home later. The kitchens a mess but there’s this wonderful aroma wafting around, “ What's for dinner?”
“ Potluck… If it’s in the pot, you’re in luck.”
Easy huh!
ADAPT OR WITHER AWAY

Five years ago, life was simple. You wake up, you get dressed, you go to work, you come home etc etc. That all changed when I got MS, take for instance, the act of putting on your socks and shoes. Hey that’s easy, bend over, lift your toes off the floor slide the sock over, stretch your ankle and pull the sock up, shove your foot in the shoe and tie the laces. Not so with me, I bend over and I nearly fall over, my sense of balance is shot to hell. I try to lift my toes, these little piggies don’t want to go anywhere near the market, and they are staying firmly at home on the floor. Talk about illegal strike action! I mutter a few choice words; I’ve got to do this the hard way. You know how the guys sit round the braai, lounging in the chairs, right ankle up on left knee, beer on right knee, smoke in left hand and talking the 3 S’s, Sex, Sport and Sh…. You get the picture? Well I can’t do that any more and I’m not talking about the 3 S’s, I need both hands free just to sit like that otherwise the lounge becomes a slouch, the slouch becomes a slide and the slide is a free ride to nowhere but down. Will someone please help me up! So I’m sitting on the edge of the bed, I have to physically place my right ankle on to my left knee. Now comes the will and determination part, I’ve got to let go of the bed with both hands. Will comes through “To balance, or not to balance, that is the question?”. I grab the nearest sock and make a beeline for my toes, as I reach my right foot on the left side of my body my centre of gravity shifts. You must remember some science from school, for every action there is an equal opposite reaction. So my head counteracts and leans to the right, the gravity shifts, my left foot thinks that it is at Cape Canaveral, “We have lift off with full 90 degree rotation”. Sock one way; body the other, gravity sucks! That’s why boys lie face down on the beach.
Now its back to the starting grid, I’m revved up now after a false start and the language is slightly more choice. A few more false starts later and I’ve managed to get most of the sock over my toes. Next hurdle in sight, ankles are meant to be extended just so you can put socks on, mine don’t extend anymore. Brute force and ignorance prevails, grab sock on either side, pull, tug, yank, swear, pull some more, swear some more and eventually there is some semblance of cover on foot and ankle. It takes a couple of minutes to straighten it all out; not bad it’s taken a few minutes to do one sock. Now for number two. I reverse the process; it’s time for left ankle on right knee. A third force is brought in to play and it’s called friction, or rather the lack of it. Right foot, encased in synthetic fibre, placed on slippery surface, (carpets included), left ankle placed on knee, shift the centre of gravity and there you have it, you’re on the Olympic tobogganing team and there ain’t no set course. This whole set up takes longer than the first sock, I look out the window, not such a bad day, bugger the socks and shoes, I’ll go barefoot, just like yesterday and the day before and…..
These days I don’t sleep to well, I go to bed well after everybody else and I generally doze through the night that’s even with a sleeping pill. Glynn says I sound like a sawmill, no wonder that I don’t sleep. I hear the alarm every morning, I just don’t respond, I lie dead still, eyes closed and stay totally relaxed, that is, until I really have to move. Now the fun starts, the minute I move my legs, chaos reigns. Have you ever heard a Hadida take off, the beat of its’ wings make a loud distinctive noise. My bedroom sounds the same, my legs go in to spasm and start to shake uncontrollably and the duvet tries to take off. 30 seconds or so later my legs quieten down and peace returns and a small voice pipes up “Mom, that damn Hadida's in your bedroom again!” There are days that I’ve managed to flick the duvet off my legs before the tremors start and that gives a totally different effect not to mention a whole new meaning to the term, “Lets go rattle the headboard”. Honey, you’re so lucky, you have your own vibrating bed.
These tremors attack me during the day, especially when I’ve been sitting for a while and I have to get up quickly. Now I find myself hanging on to my walking stick for dear life as my legs do an impromptu dance around the lounge. I just wish that the walking stick would stay in one place. If the Gizmo is around, he will wait until all is calm, “ Cool dad, you’re breakdancing again”.
Let me take a moment to tell you about the Gizmo. Ross was 8 months old when I was diagnosed with MS, he doesn’t know me any other way, to him I am his dad, and that’s all there is to it. He doesn’t think that it’s unusual that Mom plays cricket or football with him, Dad is a little different and hey, Moms are supposed to do everything and Dads are supposed to know everything.
In a lot of ways I’m extremely lucky, I spend a large amount of quality time with the Gizmo, which many parents don’t get the opportunity to do. But when I reflect on the last four years, I see it in a different light, it’s not so much the time I spend with him, it’s the time that he takes to be with me. He helps me, urges me and at times admonishes me.
Initially, I had the Gizmo to my self for five days out of seven, needless to say, I saw a lot firsts. I don’t remember him crawling, but I saw him stand up one fine day, and the Gizmo was gone, down the passage. Fourteen steps later he plonked himself down and turned and gave me an incredible look, it was like he was saying to me “You want to do something? Just get up and do it”.
We had a fairly steep bank in our garden and it was about 1m high, and it was a regular place for Ross to play. Every now and then he would try to climb the bank with little success. One morning he refused to beaten, 40 minutes later I got the look, “I’ve conquered my mountain, now conquer yours”. The Gizmo is five now; I still get that look, especially when he’s accomplished something.
Ross understands that I have good days, not so good days and rotten days and he adjusts himself accordingly. On good days, things are great, it’s a pity that there aren’t so many of them, Ross can push his luck to extremes, we laugh and joke about MS especially, if I fall over or bump into walls.
On the not so good days he quietens down a bit, he still pushes his luck, but knows when to stop. If there is something that he wants, I get the treatment “Please Dad, I’ll help you, here, hold my hand”. And off we wobble.
On the rotten days I don’t move too much. The Gizmo suddenly appears next to me with arms laden, milk, cereal, juice, bowls etc. I battle to hold one item let alone 6 or 7. I do what ever needs to be done and then tell the Gizmo to take everything back. “I can’t take it all back at once Dad, I can only take one at a time”.
There is one thing that never changes no matter what, I get at least six hugs and I love you’s every day, and MS fades to grey for a while. That’s my Gizmo, let Ross do the walking and talking.
December 2004

Ten days to go to my flight to Switzerland. My excitement is mounting. I’m going to spend the next few days chilling out and not let anything bug me.
As Ross would say “Don’t stress Dad”.