Andrew's November 2006 Journal
Wednesday 1 November 2006
Ate breakfast in my room today cause everything was running a bit late. I was in my room when the doctors came on their rounds. Dr Shrosbree said that I need to wear the abco for another 2 weeks. In this morning's physio, they took my pressure belt off. This is like a tight corset that keeps pressure in your chest and head and you can breathe easier. They are weaning me off this now. Another problem with blood pressure and lying down so much. I had speech therapy today. Ingrid says that I'm doing really well and she is very happy with my voice. The attorneys came today, and things are looking really promising. Had some OT. I pushed a bit. My left arm is really sore, but my right arm is giving trouble now too. After OT, when I pushed the chair, I was in a lot of pain. I asked Nicole if I could go on the tilt table in a soft collar and I went straight to 90 degrees and wasn't dizzy or nauseous. The abco pushes down so that my diaphragm can't expand that much and I get short of air. It is great to be without the abco. It's like a torture device. It seems to get worse every day. I think it's because my body is getting stronger and starting to support itself. After the tilt table, I came back to my room. Marilyn Carter, my pre-school headmistress, came to visit. It was good to know she hasn't changed a bit. I still remember her sending me to sit under my peg when I was talking in the hall. Then I went to bed. Ian (Andy's brother) popped in and dropped off the laptop with a few movies and my visitors came to visit.
Thursday 2 November 2006
Breakfast in the dining room as usual. I met Victor, another patient with an abco. He was admitted on Monday. He doesn't seem to be happy in the abco either. I had meeting with Leigh, my social worker today. She wants me to see a psychologist for pain management. The brace was killing me after this two hour meeting. I raced down to the gym to get out of the abco. Nicole was great, she could see I was in pain and put me on the plinth, out of the abco straight away. She didn't let me off totally though, and made me lift weights. Anything was better than the abco pain. The therapists had a meeting, so all of us were free until 1 o'clock. Janelle arrived with lunch (lambchops) which was great. Then went to have some tea with Wendy. I think she is starting to understand my sense of humour; and we had a few laughs. Physio was next and I had a trigger point massage. The best way to describe this massage is probably imagining someone hitting your toes with a hammer, except much harder. It does bring incredible relief though. I then went on the tilt table, I got stuck halfway and was glad that I wasn't all the way up when I got stuck. After the tilt table I teased Madigah about her appearance in the diary for a little bit and then went back to my room and went to bed. First my mother visited and then my brother Nicholas. I am getting shooting sensations in my legs, not painful and I am hoping this is a positive sign.
Friday 3 November 2006
At breakfast, I chatted to Victor for a bit. I know exactly the pain that he is going through with the abco. His injury is one level higher than mine, so he has more limited use of his hands. It's funny how one becomes knowledgeable about these things in such a short time. I had the usual therapy, speech, OT and physio. I am doing pretty well in all these, especially speech. My voice is almost back to normal, I just can't project very far.
Nicola came to do Cranio-Sacral therapy. I really think that this is helping because I get sensations in my legs that only happen during the therapy.
I am now getting impatient. Initially it was like a bad dream that was going to pass, but now I am being forced to face reality. I want to leave the hospital, but am feeling overwhelmed by the adjustments that I am going to have to make. It's the simple things, a 5 minute shower, 2 minutes to get dressed. That's not going to happen anymore.
Saturday 4 November 2006
Breakfasted in my room today, because the dining room was empty and then I went to OT to continue sanding my block of wood. I've told them I have an orbital sander at home, but they won't listen! I decided to play DJ and tormented the physios and my fellow patients with music ranging from Tchaikovsky to heavy rock. I actually left them in the gym with heavy rock blaring and escaped to my room. Came back to my room, and Kelly was here. Janelle arrived shortly afterwards and then Kerry (trainee OT) popped in for a surprise visit. She's writing her final exams at the moment, so has finished her internship here. Nicola Morris of Pine Cottage has been working on an auction website for me, and we had a meeting with her, Kelly and Adam Lange of Signpost to discuss the details. It's the first time we had met with Adam, who designed and has been maintaining my website free of charge. I'm still feeling overwhelmed by the amount of support that I am getting from everybody - friends and strangers alike. My evening ended with lots of visitors. Pieter Toerien popped in after having been in Johannesburg for a while. He reiterated what the attorneys had said earlier in the week about the imminent prosecution of my attackers. Watch the papers closely over the next few weeks!
Sunday 5 November 2006
Started with the usual routine - hair wash and shave, and then more unusually, a bit of a sleep in. At around noon, everyone arrived and we made a break for the door in shifts so as to avert suspicion. Clearly there are more people reading the website than I thought, because as I was leaving my room, under the pretence of a picnic in the garden, they presented me with an indemnity form to sign. We had been told that it was highly unlikely that we would be able to use the nurses entrance, so Sister Liz Morris of Happy Box, headed up the pushing crew. The journey down the hill, wasn't as difficult as we had expected. For the first time in eight weeks, I left the hospital premises to go to St Peter's Square, which if memory serves me correctly, used to be a graveyard. Are my planning team sufficiently sensitive?
We arrived at the Spur at around 1pm. Lunch was great - it was good to get out and have a change of scenery, and more importantly, a steak. We returned after about 2 hours. I'm glad I didn't have to push up that hill, even Liz needed some assistance from Peter Macfarlane - a seasoned hiker. The nurses were great - they were waiting for me when I came back in. I think they missed me. They put me straight back to bed so I couldn't escape again. Thank heavens, because the abco was now hurting.
Progress arrived for a visit and we chatted for the rest of the afternoon. Alan Committie, a local comedian gave me a call to say that he was coming to visit when he comes to Cape Town. We watched a bit of Fawlty Towers, and then Kelly & Jason arrived to do my journal.
Bowel movements are not normally discussed in polite conversation. Here, they are a serious problem, I mean, use your imagination... no muscles work in that area! I really don't want to discuss this but if you want more information, please visit http://www.sci-info-pages.com/bowel.html.
Monday 6 November 2006
I had problems and needed to stay in bed. I did some physio (in bed). I really don't want to go into this in any more detail. Some things just aren't shared.
Tuesday 7 November 2006
Another day in bed - with more physio.
The architect from the Theatre popped in. We are planning some renovations and he came to show me the plans.
Andy and Lauren also visited.
My mom, Kelly and Jason came to visit. I was starting to feel better. I think I'll be able to get up tomorrow.
Wednesday 8 November 2006
The first day up since Sunday. I started with breakfast in the dining room. The other patients were all asking where I had been. I had gym at 9:30. I had a lot of energy after two days in bed. In OT, we pushed and pushed and pushed and pushed, to the garden and in the garden. Pushing on the grass is really hard.
After OT, I went for coffee with my dad, Janelle and Peter (her dad). Thereafter, I had physio with Adele- arm weights, and then Ingrid gave me speech therapy. She's very happy and I progress a little every day with my breath support.
I spent some time on my laptop, and then Conrad Hoensen came to visit. It's good chatting to him as he gives me a lot of practical advice. Kelly, Jason and then my mom arrived. I only went to bed at around 6pm.
Thursday 9 November 2006, Friday 10 November 2006
Same old routine, the days are really blurring now - ok I've been caught out. I was behind in my journal and I really can't remember. I'm sure by now you know my routine... Went to breakfast, then to gym, OT and physio...
Saturday 11 November 2006
Had OT in the morning, and had quite a few visitors, my mom, Janelle, Lushinka, Nicholas (my brother), and Karel. They have been telling me for a while that I have to move to a ward, and today it finally happened. I moved in with two other guys. They are very friendly, but only one can speak English. I am not sure how I feel about this, as I was getting very settled in my room, but I guess I am going to have to learn to adapt. I also have no TV here, but I can watch movies on my laptop in the evening.
Once we had moved, I felt brave enough for another escape and we set off down the hill again with Karel in charge of the wheelchair this time. He pushed with purpose, and we arrived at the Spur in no time at all. I tucked into a cheddar melt steak which was a much needed change from the hospital's usual food. I definitely felt stronger than I had the previous week and we managed to stay for quite a while.
Sunday 12 November 2006
I slept late today. I didn't have a good night's sleep - I never sleep well the first night in a new place. Kelly came to wake me up at 9:30 and introduced Yvette Smit, who had come to give me a much-needed haircut. I had it sitting up in bed, propped up with a pillow and a few towels. I then had a shave, and my very first shower in nine weeks! Bed baths are not the same. They put me on the type of metal stretcher that you see in the movies in morgues, and wheeled me through to the shower room, where they showered me with hand showers. It is amazing how wonderful that shower actually feels.
Once I was up and dressed, Kelly and Jason arrived and took me out. We went down to Lower Main Road in Observatory, and after reviewing our options, ended up at Obz Café. We were joined by Janelle, Loretta and Lushinka and spent most of the afternoon there.
I'm obviously blending into society well, because despite my wheelchair and the abco, some guy stopped us and tried to sell us a DVD "really cheap"! It's really great to get out and have a change of scenery.
After promising to be back at around 4pm, we only arrived back after 5, and I went straight to bed. I am sure the nursing staff missed me, because they put me to bed before I could escape again.
My friends from On Broadway and my sister Sally arrived to visit. They generally work at night, so Sunday is one of the few evenings they can pop in.
Monday 13 November 2006
I slept really well last night, I had my earplugs in and my sheet over my face, and they only woke me up at 8am. I had a pretty lonely breakfast though, because I was the last one in the dining room. The sleep-in was worth it!
I went to gym with Alan and then I had physio. There was a lot of spacisity (muscle spasms) in my legs today, so it was a bit difficult. I went for XRays to see how my bones are healing. I haven't had the results yet, but I'm really hoping that the abco will be off soon. I sanded a tractor in OT, and thereafter went onto the Tilt Table and got to 90 degrees. I haven't been able to do that for a while. That was therapy done for the day. I went to bed at around 5:30.
Tuesday 14 November 2006
Great news today! I don't need to wear my abco anymore. I still have the soft collar, but now the hard work starts.
When I went to breakfast, everyone noticed straight away. I was good to be able to see my food when I ate. (The abco keeps you upright and you can't look down). Then I went to gym - it's much easier to wheel around without the abco. Physio was hectic today. They threw me straight into doing transfers - wheelchair to the plinth and back I had to practice it again, and again and again. I learnt how to turn myself when lying down. I even managed to get up from lying to sitting position on my own. Nicole seems pretty impressed with my progress. The day got even better when I was given a lighter wheelchair. I had watched people doing all these things and had imagined what it would be like. The transfers took a lot more effort than I had imagined, but the turning and sitting were pretty easy.
I came back to my room, and Janelle had brought KFC for lunch, which was good.
After lunch, I spent some time with some of the other patients, discussing our progress. It's a lot more fun here than it sounds. While we were chatting, I thought that there was something wrong with my wheel. I asked Vusi and Mr Spies if they could see anything. Vusi said "Don't move, don't move". The wheel hadn't been clipped in properly and was about to fall off! I couldn't move, Mr Spies has no use of his hands, and none of us could remember the phone number for the gym. It was hilarious. I must say, that once we managed to phone the gym, Wendy was fantastic. She must have sprinted, as she arrived in about 30 seconds and tightened the wheel.
I was exhausted so I came to lie down. I managed to transfer myself from the wheelchair to my bed. It was wonderful to be able to do something for myself and it gave me a huge sense of independence. I knew that I wouldn't be able to get myself out of bed, because my arms felt like jelly, but Wendy came to fetch me and helped me back into the chair again. No rest for the wicked!
I had another session of physio, where we did more transfers from the new wheelchair, then I had OT, where I did bath transfers (to a special chair that is perched on the bath), and toilet transfers - those were really hard.
I went straight to bed after OT - much earlier than usual, but I was very very tired. I think I'm going to sleep well tonight.
Wednesday 15 November 2006
Had quite an easy day today. I spent the morning with Dr Baalbergen. He talked to us about sex and showed us quite an explicit movie about sexual intimacy. This is something that I have been wondering about, but it still seems strange to be discussing it. This took most of the morning. After lunch, I was quite tired, so I put myself to bed and had a nap. I'm not sure if I was really tired, or just wanted to celebrate the ability to be able to actually do this on my own.
I spent the afternoon learning how to do car transfers into Janelle's car. Luckily, we have exactly the same car, so it may as well have been my own. They took the permanent catheter out today. They had said that this would happen after the abco came off. In a few days they will do a test to see whether I am able to do without one, or if I will have to do intermittent catheterization. This is a horrible experience which I am sure I will never get used to. I know that a lot of people do it, but knowing that, doesn't make it feel any better.
Thursday 16 November 2006
I fetched Mr Spies for breakfast. We were the first to arrive in the dining room and we feasted on cornflakes with full cream milk. Then we went off to gym and thereafter OT with Carmelita. We practiced transfers until my arms felt like they were falling off. During one of my transfers, my arms gave it. I started to fall and was forced to grab the first thing in front of me - Carmelita's behind! What one gets away with here...
After OT, I had physio, Peter came to see how I did transfers because I may be going home this weekend. Nicole did some tests, and got really excited as she says that my stomach muscles are working. This is really good news because my lesion, C6, means that I am not supposed to have any trunk muscle movements. This has motivated me immensely. I just know that I will walk again.
Janelle and Lushinka came through and we had lunch together in my room. After that, I had speech therapy, in which I am excelling. I was told not to give my therapists such a hard time. I think I do it because I am bored. What else is there to do?
Then it was time for the Tilt Table - and then back to my room. Andy came to visit, and we chatted for a bit and she helped me catch up with my journal. We went to the gym where I went on the cycle, then after a cup of mochachino, I went to bed.
I am now making progress in leaps and bounds, which of course motivates me to work even harder.
Alistair popped in to visit. He had spoken to a company called RSA Web who have offered to loan me an Iburst card and give me 1GB of data to download. This is really fantastic news as I spend a lot of time searching for cures on the internet. I am really grateful for this.
After everyone left, they came to bath me and do the dreaded catheterization. This has to be done every 4 to 6 hours, depending on how much I drink. (I think the girls should stop reading now, and resume on Friday morning - only guys can truly appreciate this next bit.) I started to feel a bit strange, but I didn't really think anything of it. At about 10pm, I started to get a really bad headache. I rang the bell. The nurses realized it was a bladder issue and tried to catheterize me and drain my bladder. The problem is that I can feel it when they are trying to insert the tube, and it is really unpleasant. My body doesn't like it, and flexes so that the bladder can't drain. This causes a syndrome called hyperreflexia which is characterized by high blood pressure and a headache that feels like your head is about to explode. This feeling lasts for a few days. (Read more about this condition on http://calder.med.miami.edu/pointis/automatic.html.)
Dr Shrosbree was called and he came racing through. He decided to put in a permanent catheter and managed to insert it really quickly which relieved the pressure. This means that I'll be back to a bag for a few days - what a relief. They gave me pain killers, but I still had a very unpleasant night.
Friday 17 November 2006
I felt really dreadful this morning. Dr Shrosbree put me off gym for the day. I struggled till about mid-morning, and then went to the gym anyway and did a bit of gym and OT. My headache got quite bad though and the rest of the day was pretty much spent in bed. I didn't have Cranio-sacral therapy today, as there was a problem with the times. It was probably just as well. Typical, I'm allowed out for the day in a car on the weekend for the first time, and now I'm stuck with a headache that lasts for three days!
Saturday 18 November 2006
Got dressed in my jeans today - no gym, no OT, I'm going home for the first time in 10 weeks. Janelle came to fetch me and we drove straight to my house. Going home was bitter-sweet - there are a lot of things that I can't do, but it was great to be there. It was an effort to get up the hill in the driveway - I never noticed how uneven the paving was before. I was never an issue. Nicholas started the braai - his scouting days didn't serve him well, as he struggled to get the fire going. I tried wheeling around the house to see what was accessible and what wasn't. Most things are pretty accessible. I lay down on my bed for a bit. It was difficult to get up off the bed, as it is quite soft and quite low. My mom and Janelle had to help me get up.
My mom and a few friends popped round for the braai. Kate from the restaurant brought a small puppy, which was very sweet. After the braai, we went down to the Theatre. Progress and Brian picked me up, wheelchair and all, and carried me up the stairs to the restaurant. I don't think there's any need to install a lift, as long as they're there. It was really great to be back at the Theatre. It felt different though because I couldn't go into the kitchen or behind the bar. The staff were really excited to see me. I didn't want to leave, but I had to be back at the hospital at 8pm.
I struggled to get to sleep. I still had so much energy.
Sunday 19 November 2006
My mom woke me up at 8:30. The hospital staff must have been feeling kind because they normally wake me earlier. I had another shower (refer last Sunday), and a hair wash, and they dressed me to go to breakfast at my mom and Clive's house. It was good seeing the dogs again. The cat, Breakfast, came to say hi as well. I had quite a relaxing morning until lunch time when my mom drove me to the Waterfront to meet Janelle, Lushinka and Nicholas. We went to watch a movie. We were quite surprised that they don't really cater for people in wheelchairs. The girls went clothes shopping. Nicholas was not impressed, but it's not so bad for me anymore, 'cause at least I get to sit. We went to Vida for a cup of coffee, and then my right leg started to move. I discovered that I could actually stop it with my mind. It takes a lot of concentration, but I can do it. Then I went home and lay down for a while. I had to have the fan on because it was really hot. Then it was time to go back to the hospital. I wandered the passages, just me and Amos. (Amos is a patient who has had a stroke. Although he is fine physically, he is a bit confused and doesn't really know where he is.)
Eventually, I went to bed at around 9:30pm.
Monday 20 November 2006
Today was a great day. I am sure that I was moving my right foot in the night. You can never be sure, but it felt like I was moving it.
I woke up quite full of energy - maybe it was the good weekend. They took the catheter out today. I'll never get used to the feelings of those pipes. I went for breakfast and then I had a session with Gordon, a psychologist, about pain management. We didn't really get to the pain management, because he was asking me about how I was handling things. I'm sure we'll get there next time. Then I had speech therapy with Ingrid. My breath support is really getting strong and my projection is getting better. I had physio with Elmarie much later. That was really exciting because I am sure that I moved my right leg about 6 times. It really didn't seem to be a muscle spasm. I am sure that I moved it myself. After a while, I got a raging headache, and they called Dr Shrosbree who put the permanent catheter in again. (I am wondering and hoping that these headaches are like the ones that Vusi had before he started walking - refer the journal on 19th October) Once my headache had passed, we tried a different wheelchair with Wendy. My mom arrived and stayed for a long time. We went across to the Groote Schuur Spinal unit to visit Joshua who had injured his spine by falling out of a tree. He has a C5 lesion. He can't move his arms, and has a tracheotomy to help him to breathe. He has apparently moved his toe and there is always hope. I remember the days of lying in bed unable to move, and it made me realize how much progress I have made. I really wish him well and hope that he gets the same level of support that I have received.
Kelly and Jason came to visit and we sat outside the coffee shop and updated my diary. I am no longer strapped into my wheelchair as I feel quite confident that I won't fall out, and I am not wearing my pressure belt either. I don't actually even realize how much progress I am making now. I have been in rehab for 9 weeks now. Initially they said I would be here for 12 weeks, and then said 6 weeks after the abco is removed, ie another 5 weeks from today.
Janelle and Loretta also popped in and Janelle was making me move my right leg again. It is absolutely exhausting, but I know I am doing it. I can't do it with my left leg, but I am sure that one leg will be enough. I put myself to bed at around 10pm, and mostly managed to undress myself. More independence! Gosh - it feels good.
Tuesday 21 November 2006
Bruce (one of the nurses) let me sleep in a bit today. Breakfast was terrible today - two pieces of bread with marmalade - none of which I eat. After breakfast, I had physio with Elmarie and then OT. We tried out different wheelchairs in OT today. I can't believe how expensive wheelchairs are. The one I am currently trying costs R25 000, and it doesn't even come with an engine! I don't really like it - hopefully the one I finally decide on will cost less. Conrad told me to be really fussy. It's an expensive purchase and something that I will have to live with for a long time.
During my lunch break, Lushinka and Jenna came to visit. Then I had an afternoon session of physio with Elmarie. That was really exciting because I moved my toes. I couldn't move my leg today, but my toes definitely moved on command. I was the centre of my attention. Even Lolita the OT came to see. She had a look at my thighs and said that something is definitely happening on my right thigh. Progress and Andy came to visit. Kelly popped in to finalize my journal. After she left Lauren, Andy and I went to D7 to visit Joshua. I had supper when I came back. Damian also came to see me. He's been through this and is now walking. I really enjoy comparing stories and seeing his success. My mom and Clive popped in. It really gets festive here when everyone is around. I was still in my wheelchair until really late. I think I'm getting my theatre timing back.
Sunday 26th November
Started with a shower, and then Janelle came to fetch me. We went to Scarecrows for lunch and met up with some friends there.
After lunch, I went back home for a sleep because I was feeling kind of tired. When I woke up, I felt a tingling in my left foot and started to move my toes on command. I called Progress and Nicholas just to make sure, and they confirmed it. My left side has always been much worse than the right.
I have been able to move my right toes for a while now. This has been intermittent, but is getting more regular. I can't believe that I can now move the toes on both feet. It is absolutely exhausting, and I have to concentrate hard to be able to do it, but at least I know that there is some pathway between my brain and my toes. I also get a severe headache after moving them for a few minutes. Before the attack, I just moved my toes, I never had to think about it. It gives one a whole new perspective on what is actually happening in this marvelous machine we call our body.
I came back to the hospital at about 7pm bearing burgers for the guys who hadn't gone home. I know what a treat the odd bit of junk food can be.
Monday 27th November
Very easy day today - maybe I'm getting fitter. We tried out more wheelchairs - I still can't get excited about wheelchairs - I would much rather just use my legs!
I was however really excited about going to the show. My mom came to fetch me and we went to her house first and then on to the Theatre to see Offbeat Broadway. This show isn't running at the moment, but the performers offered to do a show to assist with raising funds for me It is the first benefit concert that I have been allowed to attend.
We went upstairs to have dinner at the restaurant. Progress and Llewellyn of Computicket carried me upstairs. I didn't really eat much as there were lots of familiar faces and they all came to say "Hi". It was great to see everyone.
The show started at 8pm. It was packed to capacity. I am so grateful to Lindy, Anton and Paul for doing the show for me and to Peter Toerien, for letting them use the Theatre again.
After the show, loads of people came to chat to me. I would have loved to stay longer, but I had to get back to the hospital. I arrived back at 23h30, and went straight to bed.