The good, the bad...pages 21 to 31

SEPTEMBER/OCTOBER 2004
WEEKS FIVE AND SIX

27-30 September 2004

Okay, so a change in climate is no good for me at the moment. Monday through to Thursday, I’m writing off. I could hardly move, my legs did not want to work and what little strength I had just disappeared into thin air. All my tremors and muscle spasms came back just to make life more interesting. The tingling in my hands was full force again, just trying to turn the pages of a book presented a difficulty of it’s own. I hardly even looked at the view of Giants castle; it wasn’t in me to take notice. I was more concerned in trying to get through the day. I still had to push all the dark thoughts away and try and stay positive, I know I was not a happy chappy. To Glynn and Ross I have too say “Sorry guys” you both took it in your stride as usual.
4 October 2004
One would think that after five years of MS I should know the ins and outs of it. Since the Stem Cell treatment, I have no idea again. What I am used to and what actually happens are two different things. For every bad day, it would take two to three days to get back to some form of normality. That equation has flown out of the window; it has equalled itself out. I had three bad days last week and it has taken three days of recuperation to come right. Now that I can handle in my stride, even though my stride is short and misdirected.
My exercise routine is still pathetic; this is going to take longer than I thought. First thing in the morning, I can barely reach ten squats or ankle raises. It takes ten minutes to get rid of the shaky leg syndrome afterwards. In the evening just before bed hitting fifteen or so is no problem and there is no shaky legs afterwards. I must be a bad morning person.
My sense of balance is still no balance; it’s definitely in the red, when I’m going to get credit. Who knows? Although it is still laughable, it is also annoying, especially when I’m trying to get out of a chair. I keep sitting down every time I get up, talk about a jack-in the box. I’ve got the spring action to go with it. We won’t talk about when I close my eyes, that’s all fall down stories.
6 October 2004
I woke up this morning and for the first time in months found that I could flex my legs, albeit very slowly. Normally my legs are like planks of wood, stiff and unyielding. I'm so used to reaching down and physically hauling them into a comfortable position, that it took me a few moments to realise that I didn’t have to go tunnelling under the duvet. Getting out of bed was that bit easier, likewise, getting to the cupboard to grab my clothes. I didn’t have to slide myself along the edge of the bed or drag my legs behind me. It was a slow amble to the bottom of the bed, ever so nonchalant. Reaching in to the cupboard was a breeze; I didn’t have to hold on to the shelves. I could choose my clothing, not just grab the first thing on offer.
Walking still presents a problem. First thing in the morning, I still look half cut, but as the day progresses I start to maintain a degree of a straight line. By early evening it starts to regress and it is back to bouncing off the odd wall. So far, in this last month, I haven’t had to get up close and personal with the floor. There have been a few moments of heart stopping swaying, but brute force and ignorance seems to save the day and I meander off round the house.
I still can’t believe that I am not taking any medication what so ever. No more drug induced hangovers, no more Lucy in the sky with diamonds effect. The pain I get now is easy to handle; it is more of an irritation than anything else. I get better nights sleep now that I fall asleep naturally and, the foul metallic taste that I used to awaken with is no more. Another big bonus is the fact that my wallet can heave a sigh of relief, not to mention my medical aid.
I have a very special visitor at the end of this week, so once again my diary will pause for a few days. Debs, my time will be all yours; we have a lot of catching up to do.

0CTOBER 2004
WEEK SEVEN

A lot of people are reading my diaries and they are not just here in South Africa. I am getting responses from around the world. I really didn’t realise that I was touching so many hearts, I’m getting comments left, right and centre. I have been told that I have brought tears to many eyes, I’ve been called a hero, a star and an inspiration amongst other things. Hey! I’m just a normal guy whose had to face life head on, and I’ve had help from those close to me. If, by some chance, I can help someone with these diaries that would be great, but my original intention was just a record for Beth to judge any improvement.
I’ve had a number of friends tell me that I should be writing a book. I’m seriously going to look at this, and with that in mind, this diary is not going to be solely about stem cells 08 October 2004
Today was the culmination of a lot of e-mails and telephone calls to and from Switzerland. The end result was beyond my wildest imagination. You’ll have to bear with me here I have to go a few months back to Glynn’s birthday.
2 March, at about midday I received a telephone call from someone called Deborah. Before Deborah had time to say anything, I chirped up, “I know you”! Little did I realise that I subconsciously I did.
Deborah literally pulled the proverbial carpet from under my feet; this was one time that my balance wasn’t to blame for me winding up on the floor. It was such a simple question; “ Do you know who you are and who your family is”? Hello! I’m 21 going on 43, I know who I am. Debs wouldn’t say anymore on the phone, but asked for my e-mail address. My bubble was about to burst.
I still read that first letter occasionally, and Debs I take my hat off to you, it took a lot of courage to hit the send button. I really didn’t need to know what you were telling me, especially at that time in my life. My diagnosis had changed recently from relapsing/remitting MS to progressive MS, and I was on a bit of a slippery slope. Don’t get me wrong, I’m glad that you found me, the timing was a bit out, but you weren’t to know then what you know now.
I’m not going into who’s who in the zoo, suffice to say that I have gained a wonderful and exceptional sister. Actually it is a whole lot more than that; I’ve gained a fair sized extended family. I’m certainly not complaining.
So today I get to meet Debs, I’m a little bit nervous, a little bit stressed and totally keyed up. My MS is pushed to one side, it has to take second place today, and for the first time in a long time I forgot all about it. I had had a goal for the past few weeks; I wanted to walk into the airport unaided. I know that it is great to have a goal, but this one is slightly out of reach at the moment. The improvement from the stem cells is far out stripping getting my muscles back in shape. Walking long distance is going to have to wait just that bit longer. Okay, I have to use the wheelchair, no problem; it’s a lot less taxing on the legs. Now I suddenly find out the hard way, one of the problems of being in a wheelchair. In a crowd of people, you become invisible, you are below their line of sight. I found myself a position at the arrivals gate with a clear field of vision, when all of a sudden this clump of people float past me and they have to dump themselves right in front of me. Now I can see Jack sh#%*t. Every time I moved my head this group of people seemed to move the same way. Now I’m trying to stay cool, calm and collected, sarcastic comments start to surface and I have to bite my tongue. Eventually the crowd thinned, and there was Debs. I can not explain my feelings, all I can say is that my sister was standing in front of me and we were finally getting to meet each other. I was at a loss for words. That first hug meant a lot to me, what ever I had or didn’t have, was not an issue to Debs. This is the start of the rest of our lives.
09 – 17 October 2004
This last week has come and gone in a flash, I haven’t been this active in months. Only one day in the last nine did I have to slow down when fatigue decided to rear its ugly head. It is still all the small things that are sorting themselves out, my speech is almost back to normal, I don’t trip over my words as much and I don’t slur my words as often as I used to. The tingling in my left hand has almost gone completely and it is noticeably less in my right hand. Walking and keeping my balance is still a major hurdle for me and I think that it is going to be some time before I can forget about the use of the wheelchair. I still managed to walk a little bit extra each day and each time that I have to climb a step it is not as difficult as the last time. My bladder control is now totally under my control again and I don’t have to worry about where the nearest toilet is and there is no mad rush to avoid an accident. I was passed embarrassment on that account, but it is nice to be in control.
I shaved for the first time in 3 years this week; I could hold the razor without dropping it and without dragging it along my face the wrong way. I had cheeks as smooth as a baby’s bum and no cuts. It certainly took ten years off of me. Things are looking up.
I quit smoking this week. I have had Beth on my case about smoking for the last year or so. Then Debs had a few muttered words and every thing fell into place, Tuesday morning I just stopped and that was that. No cravings, no withdrawal, just like stopping all the medication, no problem. Beth is happy, Debs is happy, Glynn is happy and I’m saving money. Win, win.
Physically this week ended on a high note, I’ve done more than ever and haven’t felt better in a long time. Emotionally it ended on a bit of a downer; Debs had to go home. But I shall treasure the time that Debs gave to me. Debs you are in my heart and in my thoughts. We will see each other again; hopefully we can make it a regular occurrence.
MS has been pushed totally sideways over this week; it was nice to get on with my life without this cloud hanging over me. Now I just have to keep it at bay, and if the stem cells continue their good work it’s a piece of old tackie.
This sentence is for you Debs…Life is lekker.

OCTOBER 2004
WEEK EIGHT

Every week, when I have completed my diary, I think that’s that. What else can go right? I am in danger of repeating myself. Then something else kicks in and starts working again. STEM CELLS RULE, OK
21 October 2004
Today is the tenth day of no smoking. I don’t miss it, I have no craving for it, and it is like I never even had the habit. There is one draw back however. “How can there be a draw back?” You ask. Easy, my taste buds are sending funny messages to me. Does this food really taste like this; my morning cup of coffee tastes so strange, it is so bitter. As for chocolate, this stuff really tastes good. The really great part is, I can wake up and smell the roses, no stale smoky air wafting around, and my mouth doesn’t feel like the inside of a wrestlers jock-strap.
Being able to shave again is so amazing. I’ve been in the three different branches of uniform, namely, navy, police and army. I was used to shaving every day. Three years ago, it became too much. Holding the razor was a total mission, and as for sending my blood down the drain, enough was enough. So everything to do with shaving was packed away and in next to no time I had a full beard. I hated the scratchy feeling of the beard and I didn’t particularly like the rash around my neck. Summer time was the worse, my face and neck would itch; it used to drive me round the bend. That’s all in the past now, no more itch and the rash has almost gone. I have always had a moustache, that has also gone. I won’t say whose influence that was, but I did get told that it made me handsome. LEKKER LEKKER, HEY!
When I was first diagnosed in 1999, my walking wasn’t that bad. I used to have a bit of a limp and every now and then my right leg would give up the ghost and become totally lame. As time progressed I went from a walk to a stagger and I would drag my right leg. Of course my balance deserted me and it was time for a walking stick, and so life went on. From a walking stick I went to a crutch, then two. Finally I got my own wheels. Not bad, almost five years to the day. A specialist had predicted I would be in a chair within five years.
I’m now reversing all of that. Within hours of receiving Stem Cells I stood up from my chair. Within days I started to walk with the aid of crutches again. As of yesterday, I’m back to using my walking stick. My balance still leaves me wobbling every now and then, as long as I take it slowly, I am in control.
There are a number of sceptics out there. You know who you are. You did your best to stop me from obtaining stem cells. You told me how it was impossible for it to work as it does and that there would be complications. Do me a favour, take the blinkers off, get a life.
My last word…IN YOUR EYE, STEM CELLS WORK.
22 October 2004
Another week has passed by in a flash. “Where do the days go?” Sometimes I wonder how I keep up.
I’m sitting here taking stock of my life, I’m sitting on a typists chair, not the wheelchair, the fact that there is a wheel missing is of no concern to me. I know it’s not there. It is good for a laugh. My crutches are now out of sight and out of mind. That was Ross’s doing, I got politely told to make my mind up. I can’t have walking stick, crutch and wheelchair out all at once. “You’re cluttering the lounge Dad, before you take something out, make sure anything else is packed away.” Ya right, like father like son.
I find that I can spend more time at the computer now, my eyesight doesn’t go haywire on me and my fingers can last that bit longer on the keyboard. I don’t have to make as many corrections. Reading a book is a breeze, likewise watching a movie, I don’t see two books or four TVs. I get tired naturally, it is actually a nice feeling to start nodding off whilst reading.
Physically, I have to get my muscles back in shape and get my ankles to work properly, then watch me. Mentally, everything is falling into place. I’ve got a great big chunk of my life back. I feel so much better and I look forwards to each day. It is not a case of, I have to do something, I want to do it. So what if it takes a while to walk to where ever. That reminds me of the little engine that could…I THINK I CAN, I THINK I CAN.

OCTOBER 2004
WEEK NINE

25 October 2004
I’ve obviously over done it these last few days and I’m going to have to take it easy today. Using the walking stick instead of the crutches takes a lot out of me. I won’t have it any other way. I can’t put my weight on a walking stick, so I have to stand up straight and I’m starting to use muscles that I haven’t used for a while. My walking has slowed down drastically (it’s already slow at the best of times) and is more of an effort.
Yesterday the floor was calling out to me, and eventually I took notice of it, and paid a visit. I thought that I could get away with it without being noticed. Nobody was in the house at the time and I thought, “Cool, no one need know this, I’ll just get up and climb into a chair and no one will be the wiser.”
Sods law. I had started to lift myself up when a voice piped up, “And this? What are you doing down there?” I could have given numerous answers to that, instead I packed up laughing. Then Ross came round the corner, saw me on the floor laughing, and he packed up. “Cool, Dads kissing the carpet again. When are you going to break-dance again?”
Usually I need help to get up, but for once I managed to get up on my feet without too much hassle and I continued through to the kitchen, where I had originally been going. Normally after a fall I have to sit for a while, as it jolts the system and I need to recover. This time, no problem, don’t worry be happy. At least now I know if I fall over, I don’t have to lie there and wait for help. Likewise Glynn knows that I can get up on my own.
Each day that passes, I’m just that bit closer to being totally independent again.
I’m going back in time again to give you an insight into MS.