The good, the bad... pages 68 to77

JANUARY 2005

The challenge
January 2nd I hit the slopes. I’ve always wanted to say that. I glided this way and that way; I had no cares in the world. The breeze was in my face, the cold numbing my cheeks and there was snow all around me. Then, I came to a grinding halt. It was heavy going for Debs to push the wheelchair in the snow.
I had a day of watching people ski and snowboard down the slopes, I got jealous, frustrated, cross and everything else all rolled into one. This is something that I want to do.
Later, at the dinner table. Debs, our Dad, Laurent, (Debs’ husband) and myself were having a chat. I piped up, “I’m coming back in December and I’m going to ski down that slope.” Laurent immediately chipped in “You do that, I’ll ski down the slope wearing just my under pants.”
You’re on Boet!
21st December 2004 I landed at Geneva after almost 24hrs of travelling. I thought that I would be man down, but amazingly enough I was feeling strong with only a few wisps of tiredness floating around, MS didn’t seem to be in the equation right then. Four months ago I wouldn’t have attempted this, physically or mentally. Now, different story, I’m raring to go. What’s an 11 hour flight? Just a little uncomfortable and only slightly boring. Piece of cake!
Debs was there to meet me with a big hug, and then our Dad was standing in front of me. I didn’t expect that and I didn’t know what to say. I was totally unprepared and I started to stumble over my words. That first meeting was very reserved, but first contact had been made. That, could be built on, and it was.
Debs whisked me off to her home which was about half an hour away. During the course of the afternoon I met Greg my half brother, major déjà vu. It was like looking at myself Ten years ago. Freaky! Not long after that I met Kim my other half sister. I just happened to go outside and there was Kim, coming through the gate. I didn’t have to ask who it was, I just knew. I know that there is already a strong bond between Debs and myself, but to find a similar bond with Kim made my day. I am truly a lucky guy.
Serious temperature change between Switzerland and South Africa, from +30c to subzero. Enough people had been telling me that I was mad to do this trip because of this, so I was mentally prepared for the cold. I don’t know what all the fuss was about, the cold wasn’t a problem, it didn’t slow me up, and it didn’t make me feel lousy. Some days it was quite invigorating. I know that a few weeks ago I was in the foothills of the Drakensberg Mountains and I couldn’t handle the cold there, and the temperature was a good way off zero. Just more proof that stem cells are hitting the right spot.
Towards the end of the day my body started telling me that it was getting tired and it was time to slow down. This is still a relatively new feeling, normally everything packs up when I’ve over done it and the smallest movement is damn near impossible. Just trying to wriggle my big toe is a huge effort. This little Piggie ain’t going nowhere, no how. So I steal the end of the couch to chill out for a while. As I’m studying the back of my eyelids (I wasn’t sleeping. HONEST) I’m listening to the various sounds emanating from the kitchen. Between Debs and Laurent it was a hive of activity in there. Then Debs stuck her head round the corner. “We’re having cheese fondue for dinner, okay?”
All of a sudden, I wasn’t studying my eyelids, I could see quite clearly. My mouth was saying one thing and my brain was saying, “Whoa there, hold the bus, you don’t like cooked cheese!” I didn’t have the heart to tell Debs this, a special meal was being prepared, and I wasn’t going to ruin it. I switched the conflict off that was running around my mind, I’ve had MS for over 5 years and it’s no longer a burden. I know how to deal with it; a little bit of cooked cheese is a walk in the park.
I sat at the table and got stuck in. Those first mouthfuls, man, oh man, oh man. I didn’t know what I had been missing out on. I have been converted and thoroughly spoilt. Over the couple of weeks that I stayed with Debs, I had cheese on a daily basis. It was cooked, grilled, toasted, deep-fried, sprinkled, sliced and eaten.
“Please Sir, may I have some more?”
The day had to come to an end and in so doing gave me a final obstacle to surmount. My bedroom was one floor up. No lift, no ramp, no escalator just a plain old-fashioned staircase. It was a condition of Debs that if I wanted to visit, I had to be able to get up and down the stairs. When I was told this I answered with bravado. “Sure, no problem, piece of cake.” Standing at the bottom step reality glares at me. Me and my big mouth!
I put my money where my mouth was. One step at a time I climbed 13 steps. It wasn’t a piece of cake, more like a hard biscuit. Defeat was not an option, I might have MS, but it doesn’t have me anymore. I had two wonderful people behind me, egging me on and giving a gentle helping hand when it was needed. That became a nightly routine at which we all had a good chuckle. It is also a routine that I now miss.

I awoke the next morning looking forwards to the day, and although I was up later than usual, 8.30 compared to my norm of 6.30, I was feeling on top of the world. Getting dressed for the day was done in no time; my fingers worked on the few buttons and the shoelaces. My right leg had only a minimal tremor, I hardly noticed it. Through to the bathroom for the final spit and polish and Joe Cool was ready.
Of course I had forgotten that I had some stairs to negotiate. I stared down from the top step and Joe Cool started to warm up. What goes up, must come down. I put my best foot forwards and plunged ahead. Going down was a lot easier than going up and in next to no time I was standing at the foot of the stairs ever so casual.
Debs moaned at me for not calling her to help me. What can I say? I’ve got Kuster blood in me, I’m stubborn and have will power and a few steps aren’t going to get in my way.
“Sound like someone else Debs?”
My two weeks in Switzerland flew past, time flies when you have fun. My MS was not an issue, it only reared its head once, not for long, and that was partly my fault. The rest I lay squarely on New Years eve. My fault is the fact that I went to bed at 4.30, I should have stayed up and waited for the next bedtime to come round. I still tackled the stairs at that time, we made it amid much laughter, and many hands make light work.
Once again, I did so much more than usual in Debs company and the climate was so good to me. Out of all I did, there are two things that really stand out.
The first, was going swimming high up a mountain, out in the open in a temperature below zero. At one stage, both Laurent and Debs were laughing at me because I had a head of white hair. Talk about a frosted head. The beauty was, we were in a thermal mineral pool with a temperature of 36c. One could reach out and grab a handful of snow whilst remaining in bliss.
In the last year, utilising a pool has been out of reach for me. Getting in and out of one is not funny; I can’t even get in and out of a bath. Admittedly, there is light at the end of this tunnel, and there should be some changes to that statement. The resort is geared for people with mobility problems and have a mini crane and chair. You are winched up, swung out over the pool and gently lowered in to the water. Totally painless and effortless. It wasn’t long before I realised that I could move my legs, knees and ankles in a way that I haven’t done in ages. The constraints of MS fell away and I was walking around the pool, my legs were actually working quite normally. The sense of joy, wellbeing, elation, stole gently over me. It’s just one more step closer to regaining a part of what was lost. I can look reality in the eye and say “See, I can still enjoy life’s journey, this ride just gets better and better.”
Getting out of the pool wasn’t fun, from hot to cold. I have never shivered so much. Debs piled towels on me not too much avail. Once again, the resort is geared for this, in the changing area are these huge oversized hairdryers. Ten minutes under one of these and I was ready for action again.
The second item to stand out blew me away physically and mentally. The day before I was due to return home Debs suggested a walk in the woods. I was game; I’m not fit, not fat and not forty. I’m way passed all that but I have a sense of humour, this is going to be a walk in the park.
We duly arrived at the woods and got ready for the great trek. Deb got the wheelchair out; children went one way through the trees, we decided to stick to the pathway. Of course I immediately scorned the wheelchair, I’m here to walk not ride. Typically, I picked a bloody hill to walk up. 10 meters later and I’m cursing my pigheadedness. Debs spoke quietly, “Get in the chair, we’ll find a level spot.” I got in the chair feeling only slightly self humiliated.
We came to a level area and yours truly is out of the chair and ready to strut his stuff. The next thing, Debs comes whizzing passed me and I’m left standing. Just me and my walking stick. I had to chuckle to myself; I should have seen this coming. I’m not the only one with a sense of humour. Debs stopped 20 to 30 meters away and the rest was up to me. It never entered my mind that this was a long walk, or that I’m wobbly, or that my right leg drags. I put my foot forwards and walked, I went right passed Debs for another few meters and then took to the chair. That was the furthest that I have walked since the stem cell treatment and it wasn’t like it was a major effort. Again, I got that good feeling, I’ve bucked the system, and you can do anything if you put your mind to it.
My time in Switzerland drew to a close and the 6th January was the day to say good bye. I have never had such a difficult time saying that. I have met this wonderful family, I dearly wish that I had been given the opportunity to grow up with them. Again, I’m ever grateful to you Deb for taking that leap and finding me. I don’t think anyone will ever know what you guys mean to me. Especially you.
I had four stunning ladies to see me off, two sisters and two nieces. What a feeling.
The flight attendant saw how I was feeling and left me alone for the short hop to Frankfurt.
I landed back in Durban the next day and the heat and humidity knocked me for a six. I seriously don’t need it in my life. I got to the baggage claim area and Ross spotted me through the glass doors, within seconds he was standing in front of me giving me a huge welcome home. His first question, “Did you bring me a snowball Dad?”
I got home and for the first time in a long time I had to go and lie down and get myself reacclimatised. Three hours later I was up and about but I was totally slowed up. The humidity was pressing down on me and it felt like I had the world on my shoulders. Walking became a major effort; my feet dragged on the floor. My balance must have been left on the plane and I had to resort to bouncing off the walls for a while. If I had been faced with a staircase, the air would have been well and truly blue.
A few days on and the heat is not doing me any good and I’m spending more time staying quiet. The less active I am the more my legs seem to seize up and I’m making a point of walking every so often. Mentally I’m up to it, the motivation is up at 100%, and the physical side is another story. Come the relative cool of the night and I’m on top form again and can cruise around the house. Bring me those stairs, I’ll show you.

23 January 2005
I woke up in the early hours of this morning and got the biggest fright of my life. I couldn’t move my legs. Immediately all the dark thoughts came crowding in, this is it, something has gone horribly wrong. Stem cells have deserted me, did I actually get stem cells, and I’ve been taken for a ride. That’s only a few of the thoughts. I have never had to back pedal so much and so quickly as I did then. It took a good half-hour to relax and think rationally and put things in perspective. I still couldn’t move my legs but at least I had changed gears upstairs manually. Then the pain came knocking at my door; my head started to pound and my back ached. I just had to move, roll over, sit up or something. I physically hauled my legs to the edge of the bed and let them drop to the floor. That got me into a semi-sitting position. With a bit more effort I sat up. That was as far as I got. No ways was I able to stand up and the pain was really letting me know that it was there. I gotta sit this one out. I flopped back down on the bed and waited it out.
A couple of hours later, things started to ease off. I found that I could flex my big toe and that gave a bit of light in the tunnel. A short while later I could flex my knee slightly and the light became brighter. The pain wasn’t any better, but right then that was the least of my problems. If I could stand and walk, then another battle was won.
I eventually stood up and shuffled, slid and dragged myself to the lounge. My legs were not interested in coming to the party, they thought that I was in serious need of hugging the carpet. She didn’t have the pleasure of my company this time.
Once the initial movement had been established everything slowly came back to normal. The pain receded to a dull irritating ache and my walking left a lot to be desired. Typical, after 4 months of stepping forwards, I had to have a couple backwards. That’s MS, trying to control my life. Up yours buddy, I control you.
Later, sitting with Glynn, I was trying to figure out why this was happening. The answer was staring us in the face. Recently my walking stick had broken in two. Luckily not whilst going up and down the stairs at Debs. I had reverted back to using a crutch to walk around. I had had the stick repaired but it was two centimetres shorter and didn’t make for easy walking. Instead of looking for a new stick immediately I put it off and used the crutch. Big mistake, I can not walk properly with a crutch and it changes my posture. The solution was simple, get a new walking stick. I did, that morning. It didn’t take long before I was up and about. All that’s left to sort out is the pain.
I spoke to Beth about it, she had two words. “Slow down.”
31 January 2005
Stem cells have given me a huge amount of my life back. I look forwards to each day with anticipation rather than dread, and although the heat of summer puts limitations on me, I can deal with it. But, I have to remind myself not to push too hard. The only part of me that has MS is the physical side; my mental side is clear and that is a big part of the battle that has been won. On the physical side, I am still getting small but steady improvement. The tingling in my fingers has all but gone and the feeling is almost back to normal. What I haven’t regained is the strength in them, holding a toothbrush is one thing, using a knife or screwdriver is something else.
The numbness in my legs has gone. There was a time that I could jab my leg with a pin and not feel it, now, I go on hunt and destroy missions. Mosquitoes must suffer their folly.
My nervous system is still letting funny messages through, I get the odd muscle twitching, my feet feel like they are on a hot plate every so often and I get strange sensations in the crook of my elbow or knee, or the base of my spine.
My feet don’t get as swollen as they used too, in Switzerland they didn’t swell at all. Obviously the heat is a major factor here. Shoving them under the cold tap helps to a degree but it doesn’t take long for the heat too swell them again.
Moving around in bed gets easier as every week goes by. Flexing my knees and turning over is becoming a pleasure. I still get tremors but they are negligible and only last a few seconds. Damn! No more breakdancing on the lounge floor, likewise, no more Hadidahs under my duvet. I still get a muscle spasm first thing in the morning when I stretch; it is so minor that I barely notice it. There is absolutely no pain associated with it.
There is a bonus side effect to stem cells, I may be 43 but I certainly don’t feel it. It’s more like 33. I’m getting comments from many people saying that I look better, healthier and fitter. Other people say that they can hear the difference in me. My outlook on life has certainly changed for the better, I am so much more positive.
MS keeps on getting kicked in the butt.