Pages 13 to20

SEPTEMBER 2004
WEEK 2
09-13 September 2004

The muscle twitching is continuing at odd times and on occasion can be quite annoying. I’ll be sitting with a cup of coffee or such like, and a muscle will twitch. Of course Murphy’s law kicks in, which ever hand that I am using, that side will twitch and the coffee slops over the edge of the cup.
Going to bed and getting up is starting to get easier with each day that passes. The last few nights, I have left the wheelchair in the lounge and walked to the bedroom and got undressed without too much trouble. I still have to physically pick my legs up to get shoes; socks and trousers off, but there are no tremors or spasms to stop me half way. Getting up in the morning still takes a while as I have to get everything working, but the twenty minutes that it used to take to get dressed has now come down to about ten. I find that I am ready to face the day a lot quicker now. In the last few months I was only ready to do something by ten o’clock and then by three in the afternoon the fatigue set in. Now, by eight o’clock I’m raring to go, (although your raring to go, and mine is probably different), and it is late afternoon before I start to slow down.
I’m starting to walk more and more and, for greater distances. I’m seeing what effect, that is having on other people. Glynn, Ross and Beth are astounded at my progress, and their words of encouragement are a source of inspiration to me. Beth gave me a check up last week, she saw the difference in me as she walked in the door and to be able to walk to the door and greet Beth, was a big bonus for me.
The first three or four steps are the easiest and I can lift my feet off of the floor, after that my right leg starts to drag. As long as I take it slowly, I can go where I like around the house. With my bladder control coming back, there is no mad rush for the toilet and a slow stroll is in order. With that control comes the fact that I can get out of the house and not worry about where the nearest toilet is, likewise, the fact that I am walking again, will soon allow me to go to places denied to me because of the wheelchair.
The tingling in my hands is slowly disappearing and the strength is slowly increasing. Breakfast is a breeze now, and I can hold a spoon and not drop it or the food in it. I still battle to hold a knife and fork in the evening. But again, it is not as difficult as it was two weeks ago.
What’s in store next week? I have no idea, but I’m going to remain positive and stay motivated. I’m going to try and stand for longer whilst keeping my balance, and walk further without dragging my feet. Glynn, one of these days, I’m going to pinch your car.

SEPTEMBER 2004
WEEK THREE

14 September 2004 Two weeks ago today I received my Stem Cell injection. Now is supposed to be the telling time, although I have already had an unbelievable improvement. I must have overdone it a bit on Sunday, I walked a fair distance, and for the last two days my leg muscles have been very stiff. Just walking through to the kitchen tires me out at the moment. I have spent most of the day in my wheelchair uncomfortable as it is and have only got out of it when I felt strong enough.
15 September 2004

I noticed yesterday that the blue colour of my feet is slowly returning to normal and the cold feeling is becoming cool. The only thing is, every time I sit in the wheelchair my feet swell to double their size. It’s not painful, just uncomfortable.
Today I’m going to see how long I can stay out of the wheelchair; I left it in the lounge last night in such a position that I have to walk around it when I want to go somewhere. Of course it gets the proverbial finger when I detour around it, and yes, Shaggles (Our dog), has to lie right next to it to make the detour even longer. No comment!
10.30, no chair, no swollen feet, just vintage ambulating of dubious direction. If only you knew what it is like to wiggle your toes.

16 September 2004

I managed to stay out of the wheelchair until midday yesterday, I only got back into it because I was really slowing up and I was getting tired. Within half an hour my feet started to swell but they didn’t turn blue.
My fingers are slowly returning to normal, during the morning I can use them a fair bit. Combined with the strength returning in my arms, I can actually use the keyboard without the usual deluge of mistakes. By the evening, all has gone missing in action and will power comes in to play.
Again, I left the wheelchair in the lounge over night.
17 September 2004

I woke up this morning with a strange sensation in my left leg. It feels like a low voltage battery sending a pulse along my thigh down to my toes every so often. It’s the first bit of feeling in a long time. Let me put it in to perspective. I can watch a mosquito survey my legs. When it decides on a decent roadhouse, I watch it set up it’s drilling rig and start pumping. I don’t feel a thing. All I’m left with is a small red bump that doesn’t itch. I’m going to have to start slapping the buggers again.
I’m sleeping a lot better and I find that I can get comfortable in bed a lot easier. I can turn over and move my legs in to different positions without physically lifting or moving them. Spasms are almost a thing of the past; I can wake up and have a stretch without my muscles tightening up uncontrollably. The days are getting better and better.

SEPTEMBER 2004
WEEK FOUR

20 September 2004

This last weekend wasn’t good for me, my motivation went in to low gear, I was listless and I really battled to walk. My MS gave me a wake up call. After the last three weeks of great days, I had forgotten that I get bad days. It was like a slap in the face, and yes the questions start to surface. Does this stem cell therapy work? Is this a flash in the pan? I had to force the negativity away and concentrate on relaxing. Once the cobwebs drifted away, I felt a bit better and I realised that I’m still going to get bad days. I just have to handle them differently and keep positive thoughts alive. The encouragement that I get from Glynn and Ross is a big help, I also have to take heed of when I’m told that I’m pushing it too much.
Beth popped in on Saturday to check up on my progress and even though I was feeling off colour, she still saw an improvement. Then Beth told me that I had to start exercising my leg and ankle muscles if I wanted any semblance of normal walking. Big motivation needed here!
Sunday morning I got up and decided that it wouldn’t be so bad to try a few squats and ankle raises. I thought ten of each would be good. Ya right! By number five I was straining, number six the sweat was starting to form on my forehead and at number seven my muscles were quivering with effort. Yawellnofine, no pain no gain! I wonder how long it’s going to take to get to ten?
21 September 2004
I haven’t used the wheelchair in two days. It’s still in the lounge and in the way, just in case. I find that I can walk anywhere in the house, but it is slow and laboured. My legs get tired very quickly and I’m tempted to sit in my chair, but to me that is defeating the object. Why take the easy way out?
As for the exercise routine, it doesn’t paint a pretty picture. I didn’t realise how much strength I had lost. Thank goodness nobody sees me try my routine, I probably look pretty pathetic. We will see in a week or so what sort of improvement there is. To think I used to exercise for fun a few years back.
My sleep pattern is back to almost normal, I’m not waking up at all hours, and moving around in bed is a breeze now. Getting out of bed in the morning is the hardest part and it still takes a good hour for my body to respond to any commands. After that the day becomes easier to handle.
22 September 2004
I’ve reverted back to being in the wheelchair for the first part of the morning. I now realise that getting out of bed and walking straight away puts a strain on the rest of the day. I give myself about an hour before I start any serious movement and it does help a great deal. The exercising is a real pain in the butt; hopefully I will see the results a few weeks down the line. I’ve found that I need at last half an hour to recover from wobbly leg syndrome after exercising. The best time to exercise, is just before bed, I don’t have to walk anywhere afterwards. I flop back on to the bed and then go walk about in my dreams.
23 September 2004
Over the last five years I have learnt to live with the dark clouds looming on the edge of my mind. There have been days where I have let them roll in, I didn’t have the energy to blow them away. Now it is so much easier to control, they are still there, but not so much of a threat. If something doesn’t go right, I don’t let it bug me, I change the subject for a while and the clouds dissipate. I try again and it all comes together. Positive thought plays a major roll and as long as that is in place I have no problem. Encouragement and support are also a huge factor; there is no lack of that in my life. What more can I say, these miracle cells have given me a new outlook and new lease on life. How far is it going to go? I have no idea. What I have already gained is a big bonus; I can face each day with expectations rather than, the same stuff different day, way of thinking.
It’s the start of school holidays today, so I’ll be taking time out from this diary for a week. We are going away on Monday to chill out and look at the mountains. I’ll catch up with you later.