20 May 2005

I must admit that I have been a bit slack in keep my diary updated. I guess there are just too many things on my mind at the moment. One main issue is about going back to work at the end of the year. When I caught up with my collegues on Wednesday night, they told me the new segment leader has arrived and was asking about if and when I would go back to work. I'm not sure if I'm ready to go back yet. I don't think I can cope with people staring at me or look at me like I'm a freak. I have to give him a call to discuss this and I have been putting it off because I’ve never met him before and I don’t know if he is nice and sympathetic of my situation. I find this quite consuming. I’m a bit sick and tired of having to worry about it all the time.

The bathroom people told me yesterday they will arrange for someone to come and collect our portable bathroom this morning. I told them to come and collect it after 10 a.m. so I have plenty of time to get ready. I had an appointment at Epworth at 11 a.m. so I had to leave the house by 10.15 a.m. anyway. I timed myself so that I could do some exercise bike, have some breakfast, have a shower and clean up the portable bathroom before I had to go. I started to panic when the builders still didn’t turn up by 10.15 a.m. Tim told me he had an important meeting to go at 11 a.m. but I wasn’t sure where the meeting is. I was really freaking out that the builders haven’t showed up and I really needed to get my taxi and leave the house. Tim couldn’t understand why this has to be so stressful. Maybe I’m just so easily stressed and maybe that’s how I had the brain tumour.

Gavin was with another patient when I got to the physio room. This time, I took off the ankle brace before he mention it and was all ready for my usual exercises. He asked me how did I go yesterday. I didn’t quite understand what he meant by that at first and then I guessed he probably meant my walking practice. I told him I didn’t do very much yesterday because I had my deep tissue massage yesterday and I don’t do too much after the massage. He was a bit disappointed. He said I have to do my walking practice if I want to get better.


I started with the mini trampoline and then walking practice. I must say it’s getting kind of boring. I actually don’t mind it when there are other people around. I noticed there’s woman on the exercise bike. She only has one shoe on. Her other foot is in plaster so I presume she had some kind of injury to the foot or leg. At first, I thought she was an orthopaedic patient. I didn’t realise how bad it was until she got off the bike and was trying to set up the leg press by herself. I noticed that she has a very big scar across her other leg and she was only using her right hand to adjust the height of the leg press. Her other arm was flexed from the elbow. She probably looks quite normal to the untrained eyes but for someone who has experienced that herself, I know immediately that she had some kind of brain injury.

Gavin came out to check on me. He thinks my walking is much better. He said he’ll do something to help correct my walking. I was really nervous about that. I remember last time he did that I was really struggling to keep my balance and I had my ankle brace on then. He stood behind me and as I started walking, he helped me to swing my hip forward like Prema did last time. That wasn’t too bad. I told him it felt like I kept sticking out my butt to keep my balance when I try to walk a bit faster. He told me to go to the walking rails and gave me an exercise to do so I don’t stick out my butt when I’m walking. He sat up a mirror on the side so I can check it for myself from time to time. While I was practising, he was working with another patient, the one who had spinal injury. Gavin was trying to help that patient to walk. He was sitting on a stool with wheels and was supporting the patient with one hand and moving the patient’s foot with the other– the sight is too familiar. It reminded me when I first started learning to walk again. I couldn’t see them all the time because they were behind me but I couldn’t help eavesdropping on their conversation. I think the patient must have almost fell over because I heard him screaming and the Gavin told him he actually dropped one of his patients once. He said this was the first week at his first job as a neuro physio and he was also working with someone who had spinal injury. I found it bit hard to concentraqte on my exercises now as I was waiting to hear him finish the story. He said he thought the patient was doing fine until he suddenly had some muscle spasm and fell. He couldn’t stop the guy from falling so he fell to the ground with him just so it didn’t look so bad. I thought it was pretty funny but I was able to refrain myself from laughing. Fortunately, I didn’t have one of those uncontrollable giggles. Gavin came to check on my exercise and asked me what did I think of that. I told him it’s ok but I actually had the rails to hold onto so it probably made the exercise a bit easier. He told me to get out of the rails and stand in the middle of the room to practice. He said if I don’t find the exercise hard then he is not doing his job properly. It’s interesting he said that. In that case, MECRS probably has never done their jobs properly. I stood in the middle of the room and practiced that for a while until he told me that’s probably enough for me and I can go back to the hallway to continue with my walking practices. As I was leaving the room, I saw Eliza walking pass. Her physio, Cathy, was helping her. She has this big gait aid that looks like a very tall frame with arm rests. I was very surprised and glad to see the rapid improvement in her. A few weeks ago, she couldn’t even stand for more than a few seconds. Now, she is walking with a gait aid. She still can’t speak yet but at least she is more mobile.

I went back to the hallway and did a few more laps. I didn’t feel any different from before. In fact, as I was trying to tuck my bottom in, my ankle tends to invert more. I think it’s probably my brain is still not sending the right signals down my leg and as I was trying to squeeze my butt, it was doing more ankle inversion instead. Gavin came out to check on me after a while. I told him I still can’t hold my butt in all the time and my ankle inverts so much. He didn’t think my ankle inversion was that bad. He thinks it’s actually looking better. He said when I first went there I was not physically strong enough to walk around without the ankle brace on so he didn’t get me to do it back then but now I’m physically strong enough to do it and I just need to practice walking and fast walking without it. He told me to practice hard at home and he will time me again next Wednesday.

Neil came in the afternoon to help me with my exercises. He brought me a present from both him and Rosemary. It’s so nicely wrapped and I thought it might be a test for my left hand. When I opened it, I realised it’s a CD of Mozart’s arias. Rosemary is so thoughtful. I think I might have mentioned it to her once that I like Mozart and I saw the movie ‘Amadeus’ seven or eight times. I’m susrprised that she remembers that.

Neil asked to check my exercise book. I told him that I haven’t been doing all the exercises because I have been concentrating on the strengthening exercises Gavin gave me. I also have been using a lot of the elliptical I hired. He thinks maybe it’s time that the exercise book is redudant now. I’m not sure. I don’t even know what residual problems I have with my arm. I think that’s something I need to check with Prema and Gavin.

After Neil had left, I went back to the study and tried to call my new boss. I was very nervous and was rehearsing in my head what I should say when he pick up the phone. The phone rang out a few times and went to his voice mail. I didn’t leave a message. I think I’ll try calling again on Monday. I need to call HR anyway because I noticed that some transaction with the description of payroll just went into my bank account yesterday which doesn’t seem to be right. I have been on unpaid sick leave all this time so I don’t know why the fornightly pay went into my account. I tried calling them earlier but they told me the system was down so they couldn’t look it up for me but if they have mistakenly credited my account, I need to return the money to them. This makes me worry as well because I don’t know if they know I’m not back at work yet.

18 May 2005

I had an appointment with Gavin this morning. I think I still haven’t fully recovered from Saturday, when we went to a friend’s beach house in Inverloch. We walked quite a bit on that day – at least it was quite a bit for me. The walk was a bit tricky, it included the backdoor pathway to the beach, which was a bit like hiking for me (uneven ground and steep), the actual beach, and on the way back we were walking on the main road which meant I had to stay off the road to avoid traffic. The walk felt like forever. Tim said it was about 2 km but I had a feeling it’s more than that. After that walk, I’m pretty convinced that I’m definitely not ready to go hiking yet. I haven’t been working very hard since Saturday. I just feel really tired. I have to be careful these days because I often cannot tell at the time I’m doing something until afterwards but by then , it’s too late. I remember when I was at MECRS, the neuropsychologist told me that I’ll need to pace myself because if I over-exhaust myself too much, I’d need more time to recover. I always thought she meant was more mental related but I suspect she meant both.

I really didn’t want to get out of bed this morning but I had to because I needed to get ready to go to Epworth. I dragged myself out of bed and thought I’d start with my exercise bike. I haven’t done that for a few days now. After about 15 minutes, I decided it was enough for me. I didn’t want to tired myself out so much or I won’t have any energy left for physio this morning.

Gavin was not there when I went walked in the physio room but one of his other patients was there - the man who had spinal injury. He was on the mobile so I didn’t talk to him. I found somewhere to sit down and waited for Gavin. When Gavin walked in, he pointed at my ankle brace and told me to take it off and start with my usual routine – mini trampoline and walking practice. I have been practicing walking around the house without my ankle brace sine Friday as instructed by him. I found the best way to do it is when I’m cooking. I need to walk around in the kitchen area and do things and it’s a good way for me to walk around without the brace and not thinking about it. I found that if I do my walking practice at home without the brace, I tend to focus on the fact that I’m not wearning the brace and tend to get very tense but if I take off my brace while I’m cooking, I still walk around without the brace but because I’m actually busy doing stuff, I don’t focus on not wearning the brace so much.

I was on the trampoline when Gavin came out to check on me. He told me to continue doing this and the walking practice for about 20 minutes because he needs to go and see a doctor. I was not sure whether he meant he had to go and see a doctor for his patient or for himself but it didn’t bother me anyway. I was quite used to do my exercises unsupervised. I did a few laps of walking and the trampoline when I was a bit distracted by some people around me. One guy was talking to another girl about what happened to him. I couldn’t help eavesdropping. Apparently, he had a car accident in NSW. He said he was doing about 110 km when the accident happened and he had broken legs and arms. I wonder whether he had any brain injury from that because I noticed he was speaking quite slowly. The girl he was talking to had a motorbike accident. Her walking does not seem to be too affected. Maybe her injury was only physical.

I could hear Gavin when I walked passed the other entrance of the physio room. Sure enough, he came out to check on me when I turned around and was walking back to the other side of the hallway. He looked at my walking and told me to do 2 steps and then pause. I didn’t quite understand what he meant by that. He demonstrated – start with my left foot, take a step with my left foot and then a step with my right foot and then pause. He said I tend to take one step and then pause and it’s slowing me down. He told me to do a few steps of this and then timed me with the 10 metres walk. He told me to practice this while he goes and take another patient for a walk. I have seen this patient before – an elderly lady. I think she probably had a stroke. He said he’ll time me again when he comes back. He thinks my speed should improve by 10 seconds. That’s quite ambitious I thought, 10 seconds is a lot. The more I think about it the more I think learning to walk again is a bit learning ballroom dancing. I remember I used to learn the steps and then just kept practising until I remember the routine. The left step, right step and pause of walking that Gavin just told me to do is a bit like learnig new steps in dancing. It takes a while to get used to. I found that by doing this, I actually take a bigger right step. It’s strange but I can actually take a bigger right step without even thinking about it.

When Gavin came back, he left this elderly lady in the wheelchair to rest and then he timed me again. I was quite curious to find out whether the speed of my walking has improved by 10 seconds. He showed me the stopwatch and it says 31 seconds. He said it should be about 30 seconds but he pressed it twice so it stopped at 31 seconds. He told me it was 50 seconds when he timed me previously. He was quite amazed by the improvement as well. This is twice what he estimated. He said when he timed me before I went to Canberra, I had the brace on and it was about 1 minute 20 or 30 seconds. He said the aim now is for me to walk faster. I told him I felt I was sticking out my butt a bit when I tried to walk a bit faster. He checked but didn’t think it’s as bad as I described. When I walked down the hallway, I checked again and still noticed I stuck my butt out a bit. I told him I noticed that I tend to stick out my butt when my weight is on the left and just about to take a step with my right foot. He said I’m right because my left hip tend to collapse when I put weight on it. But he said this is just due to weakness and as I get stronger, it will improve.

When I was walking down the hallway, I heard the elderly lady’s husband asking him what happened to me. I couldn’t hear what Gavin said but I heard the guy said oh, poor girl. I guess he was curious about my condition but probably too embarrassed to ask me. I was surprised that Gavin actually told him anything. I remembered asking Jane, the physio at MECRS, about what happened to someone and she said ‘why don’t you ask her’ instead of telling me what happened to that person.

I told Gavin that walking without the brace seems to give different feedback to my foot. I feel my calf hurts a bit and from time to time my knee hyperextends. He said my leg actually works harder without the brace and I should do that all the time. I told him that when I cook, I tend to take off my brace because I walk around without the brace but because I’m concentrating on something else, I don’t tend to think about that I’m walking without the brace on. However, he told me I still need more structured practice like this. He thinks I should practice at least half an hour everyday and try to walk as fast as possible. He said if I want some distraction, I can have the music on or put on a tape with his voice telling me to walk faster. This reminds me of that energy drink commercial again. He said some people can run without the brace on so I should be able to walk without it. I commented that I thought I was the only one with this problem but he said it’s actually quite common and I’m not the only one having this problem. I was surprised to hear that there are other people like that because I’ve never seen them around. He said they usually come in the afternoon so I don’t see them. He said some of them used to wear those big heavy braces but are now able to run without the braces. I assumed he meant the dynamic AFO. I told him I have one as well. He said he’ll have to burn both of my braces. He said by wearing the brace, I’m actually compensating. He said I shouldn’t want to compensate, I want recovery. He said if I’m not getting better two years down the track, that’s the time to think about compensating but now I should focus on recovery. Again, I think this is really positive attitude. Unlike at MECRS, he hasn’t told me to give up and get used to have an impairment for the rest of my life.

13 May 2005

The builders were here till quite late last night and they told us they won’t be here today because the tiler will be here doing some work from around 8 a.m. The tiler did get here around 8 a.m. Tim gave him a copy of our key since I won’t be home all day. I had an appointment with Gavin this morning so I had to get to Epworth. When I was walking to the taxi, the tiler noticed my ankle brace and asked me what happened. I didn’t answer him and just said it’s a bit complicated and got in the taxi.

When I got to Epworth, I was still a bit early for my appointment. I walked into the physio room and Gavin was with another patient. When he saw me, he asked me how did I go with my walking practice without the brace on. I only managed to do 10 minutes of walking practice without my brace on last night. I couldn’t lie so I told him I actually only did about 10 minutes and it was like a torture not having the brace on. I wished I had lied because he told me to take the brace off straight away. When he left the room, his other patient said to me ‘now you are in trouble!’ I know that. I should have just said my practice was fine but I just couldn’t and didn’t want to lie. I started talking with his other patient. I noticed that he is in one of those electrical wheelchairs so I asked him about that. He told me he is semi-paraplegic and he was at the spinal cord unit at Royal Talbot for a while. He said his accident was about a year ago. I was just about to tell him that it’s almost been a year since my brain surgery but Gavin walked in and told me he’ll burn my ankle brace so I can’t use it anymore. I told him I was actually thinking about getting another one because it takes a while to wear a new one in. He said I’m definitely not getting another one. I told him it’s actually good to wear it when I go out because people often think I have a broken leg rather than a neurological problem. He said if I walk normally then people won’t think of anything at all. I interpret that as a positive comment because I presume he thinks I am able to walk normally one day. He sent me off to start on the trampoline and then walking practice. I think I know the procedures well enough so there was no need for supervision.

While I was on the trampoline, I noticed there is a woman on the stepper. She has some shorts on and I can see her nice muscly legs. She is working very hard on the stepper. It made me realised that maybe Tim is right, I wasn’t working hard enough. I could see her shoulder and back started to get quite sweaty. I couldn’t keep my eyes off her legs, the well-defined calves. I think my legs used to be like that but for the wrong reason. I think my calves were from years of wearing high heeled shoes rather than from exercising. Gavin came to check on me. I was very tempted to tell him that I was busy admiring that woman’s legs. I want my calves to look like that! I didn’t tell Gavin. I was too embarrassed to mention it since she might hear me. Gavin told me to lift up my right leg higher while I’m on the trampoline.

The hallway was getting a bit crowded all of a sudden. As I was doing my walking practice down the hallway, Cathy, another physio, just wheeled a patient out in the middle of the hallway. He must have just finished his session. Cathy parked him there so he could be collected by a porter. As he was waiting, his family came to visit, including grandchildren. The hallway suddenly became very crowded. I thought it might be a bit hard for me to do my walking practice in a crowded hallyway because it means I need to negotiate through the traffic. I decided to stay on the trampoline a bit longer.

When they finally all left, I started my walking practice again. Gavin came to check on me and commented that my walking was looking better. I don’t know how he could tell because it certainly didn’t feel better to me! He told me to walk to the treatment area. I think he’ll probably do some work on my arm and shoulder because he asked me to give him back the exercises sheet he wrote up for me last time so he could check and update it. When I went into the room, he asked me to stand in front of a wall. He handed me a tennis ball and asked me to throw it to the wall with my right hand and catch it with my left hand. This is hard because the ball just bounces off the wall. He told me to throw it higher to the wall so it gives me more time to catch it. The most annoying part of this exercise was actually picking up the ball from the floor because I kept dropping it. I was getting a bit better at it after a while. He then told me to stand closer to the wall and the same but this time I have to catch it as it bounces off the wall, not wait for it to bounce off the floor like before. I found this so much harder because there is little time for me to catch it. Every time I dropped the ball, I had to walk around without my ankle brace and fetch it. I think I need a dog to do this exercise so when I drop the ball I can get the dog to fetch it for me. Gavin said the strength and movement in my arm is fine but it lacks speed and this exercise works on the speed of my movement in the arm.

12 May 2005

It was nice not to have the builders in the house early in the morning. They told me yesterday that the people who do the heatings will come in between 10 and 12 to instal the floor heating and they will return on Friday. I'm quite happy to have the house to myself for one day.

The floor heating people came just about 10 a.m. and I left them in the bathroom to do whatever they had to do.

I had an appointment with Prema in the morning. I haven't seen her for two weeks. When I saw her last time, she had a bit of problem with her right hand. Apparently, she went to have acupuncture and the acupuncturist stuck a needle in her nerve and caused a lot of pain in her hand. She said her hand has not completely recovered yet and she has lodged a complaint against the acupuncturist.

Apart from answering the questions that I had, Prema wanted to look at my gait again. She asked me to walk down the hallway and then she facilitated a bit which made me walk a bit faster because I was able to take bigger right step. I think this is good practice because I need to remember what it feels like so I can do that myself next time.

I told Prema that Gavin often comments that my hip tends to collapse when I walk but I just don't know how to hold it so it doesn't collapse. She had a look for me and tried to get me to do a few exercises in front of the mirror. The problem is even in front of the mirror I often cannot tell if my hip has collapsed or not and I cannot feel it at all. She got me to do an exaggerated version of collapsing my hip and then try to hold it. I think I could feel the difference better this way. She said the difference is quite subtle and difficult to tell just by looking.

After Prema's session, I had a massage session with Judy. Judy actually turned up while Prema was still here. Judy asked Prema if there is anything in particular she needs to work on me. Prema told her that she might need to look at my calf because I haven't been stretching. I told Prema that I haven't been doing my calf stretches. I didn't tell her that Gavin thinks calves are often over-stretched and under-utilised. I left my stretch wedge in Canberra so I can't really do it now. Judy thought my leg was not too bad considering I haven't seen her for two weeks. She mainly worked on my ankle inversion today and thought I need to stretch out my ankle a bit more because my foot is quite tight. She showed me a few different ways to stretch the ankle but she said it's best to do it without the ankle brace.

Just when I thought I could have a bit of privacy in my own house, the builders turned up. It's a bit strange to turn up at 4 p.m. I wonder how long they'll stay here for. I must say I'm a bit stressed out having them around. I can't wait for the bathroom to be finished so I can have a bit of peace and quietness and not having to share my portable bathroom with them.

10 May 2005

I was feeling very flustered this morning. I planned to leave the house by 8.30 a.m. the latest to go to my self help group hydro at MECRS. Tim had to run a tutorial for a group of lawyers so he and Lillian left quite early. The builders have returned to key to me yesterday so I can't just leave the house before they show up. They told me they'd be here by 8 a.m. but I waited and waited and waited and there is no sight of them. By 8.15 a.m.,they still have not turned up and I started to panic. I called Tim and asked if it's ok for me to just go to my hydro before they show up because I don't know what time they'll turn up. He suggested that I hide the key under a pot plant and he'll call them to let them know where to get the key. I didn't want anyone to see I was hiding a key so I left my bag and my stick in the ho use while went to hide the key. The phone was ringing but I didn't have time to answer it. As I was walking to the car, the builders turned up. I was probably not very diplomatic because I was quite upset they were half an hour late. I said to one of them that I have to go and gave him the key and commented that I thought they'd be here by 8 a.m. He blamed it on the traffic. I felt like saying that trarffic is bad every morning though. It would be more plausible if he blamed it on a traffic accident I thought.

I drove to MECRS as quick as I could. I was going to park at my usual disabled parking spot but when I looked at the dashboard, I noticed my disabled parking permit was missing. I couldn't see it on the floor. It's possible that Tim dropped it somewhere while loading up the equipments I was to return to MECRS. I thought it's time to return the kitchen trolley, kitchen stool and commode. They all came home with me last September but I don't really need them anymore. I never actually used the commode, apart from using it like a chair when I was getting dressed and undressed for the shower.

I thought I had to go to the commercial car park since I didn't have my permit with me. When I drove pass the building where the pool is, I realised there are so many disabled parking spots right outside the backdoor of the hydro pool but I couldn't park there without the sticker. I went to the commercial carpark but couldn't find the ticket machine. I got off the car and tried to see what other cars did and then decided to have another search of the sticker. I looked everywhere on the floor but couldn't find it. Just when I was about to give up searching, I thought I'd better check the pocket on the door, just in case it fell in there. I'm glad I looked because that's exactly where it was. I was quite excited that I found it because this means I can park right outside the pool!

I planned to return the equipments after my hydro. I know the patient appliance centre is located at Park House but I had no idea where it was. When I looked up on the map posted on the internet, I sort of had an idea where it might be so I thought I'd just drive around till I find it. I stopped at a parking lot where I think Park House is so I parked the car and thought I'd better find someone who can help me unload the equipment. I actually called John, the person who works in patient appliance centre yesterday and was told that he'd help me to carry all the stuff. I walked around but could not find the entrace to the building so I decided to go to the reception and get some direction. It's kind of strange that all the time I was there, I had never been to that part of MECRS. The person behind the reception desk gave me a map and showed me where to go. I went back to the car and the sun was quite blinding even with my sunglasses on. I probably didn't pay enough attention because I actually managed to reverse into another parked car. It wasn't a loud bump but I was worried that I might have damaged the boot and wouldn't be able to open it to get the kitchen trolley out. I got off the car to examine the damage but couldn't see any. There was nobody around so I got back into the car and drove off.

I found Park House eventually and I think I have been there before. I remember Danika, my OT when I was an in patient at MECRS, took me there once to look at the scooters. This was before I was discharged and they didn't know if I'd be able to walk very far so they thought I might be interested in getting a scooter so I can be more mobile if I want to go somewhere. In hind sight, I'm really glad Tim thought it was a horrible idea and talked me out of getting one. I went in there and found John. He went to the car and picked up all the equipment I wanted to return. The only equipment I have from MECRS now is the walking stick. I haven't told him that I still have it. I'm only keeping it for when I go to the pool. It's very hard to walk to the change room from the pool barefeet. It's for the same reason that I haven't asked Gavin to update my hydro program. I'm too scared that he'll make me carry my bag and shoes and walk to the change room barefeet without my walking stick.


Tim hired an elliptical cross trainer for me which is a bit more compact than the one I borrowed from Ivana while we were in Canberra. I gather I'll use it for a few months to strengthen my leg and then move onto something else so it's better for me to hire than to buy so I don't end up with another junk to store away.

Rosemary came in the afternoon to help me with my exercises. I showed her the Windsor pilates tape I started to use yesterday. I bought the DVD last year, after giving birth to Lillian. I saw an ad on TV when I was expecting and thought about buying it but it's quite expensive so I did't get it straight away. A few months later, I saw it at K-Mart but it's not a complete set. It's targeted at upper body only. I haven't used it until yesterday. On the cover, it says the exercises aim to work at the arm and shoulder which is just what I need now. I found a lot of the exercises too hard for me to do so I was showing them to Rosemary. She thought many of them look quite hard and she probably won't be able to do them either.

She asked me to show her the shoulder exercises Gavin set for me so I did a full set of those. The phone rang and it was Tim on the phone passing on a message to Rosemary from Neil. Neil wanted to tell Rosemary that he's caught in the tutorial till 5.15 p.m. and she can either wait or go home. Rosemary was waiting to pick up Neil after his class since he is still not feeling well after the bike incident he had yesterday. Neil was coming to my place to help me with my exercises. Instead of walking, he decided to ride his bike and he fell from his bike and landed on his hands. He looked really pale when he turned up yesterday and his hand was bleeding. We didn't end up doing any exercises because he was not well at all. We were all very worried about him but he insisted that he was ok.

While we were waiting for Neil, I went through a full set of Rosemary's exercises. Rosemary noticed that I was able to shrug my left shoulder a bit more than last time I saw her. I don't know if it's due to improved strength in my shoulder or something else because when I was in Canberra, I was working madly on building up muscles on both the arms and leg but didn't do too much of other exercises.

Neil turned up after his classes. He looked very tired. He said he just wanted to go home and go to bed so Rosemary took him home.

11 May 2005

Haven't had physios for about two weeks now. My appointment with Gavin was at 11 a.m. I didn't do a full 30 minutes exercise bike this morning because I was feeling a bit tired. It's quite stressful when the builders are in and out of the house a lot. Apart from the dust and the noise, the hardest thing to cope is the lack of privacy and personal space.

I was quite early for my appointment. Maybe I just couldn't wait to get out of the house - away from the noise, the dust, and the builders. Gavin was working with an elderly patient when I got there. I sat down and watched them. Watching them sort of reminds me what I was like before. He was trying to get the patient to walk. He was sitting on one of those stools with wheels while placing the patient's foot forward, a bit like what Jane was doing when I first started learning how to walk again at MECRS. The difference is when I was learning, Jane had either Emily or someone else to help in supporting me but Gavin was doing this alone. I was quite surprised to see that he let the patient hold on to his head for support, instead of using some gait aid. It must be quite unconfortable for both of them.

Gavin set up a mini trampoline for me and asked me to start with that first. I think I know the drill well enough by now. I start with the trampoline with ankle brace and then without the brace and then the walking practice combined with the trampoline I bought a pair of runners while in Canberra. I used to wear those daggy ones with velcro instead of shoe laces but I think it’s time for me to get a decent pair of runners with shoe laces instead of velcro. The runners I bought in Canberra are great except it’s quite troublesome when putting it on with the ankle brace. . When Gavin told me to get on the trampoline without the brace, I told him that it’s fine to take off my ankle brace but it will probably take me a while put it back on with my new runners. At first, he thought I had trouble tie up the shoe laces so he told me that I can get those elastice shoe laces. I had no idea what they were but he said it’s the same as the normal shoe laces except they are elastic ones so I don’t even need to untie them to put on the shoes. I told him that the shoe laces are not my problem, the tricky bit is putting on the shoe with the brace. He said it wouldn’t be a problem if I don’t wear the brace anymore. Somehow I knew he was going to say that.

He left me there to do my practice while he went and check on other patients. Another patient just walked in with crutches. She is accompanied by (I presume) her parents. They look Chinese but I couldn’t tell where they came from. The parents looked at me up and down while I was on the trampoline. I didn’t like their stare but I didn’t say anything. I overheard them talking in Cantonese so I think they are probably from Hong Kong or Maylasia. It turned out that she is also Gavin’s patient. I think she had some kind of fracture on the leg because I overheard them talking. The parents had many questions so they stood there talking for a while. I was a bit annoyed but was trying to concentrate on my practice. I haven’t been practising my walking for a while because I was away in Canberra and when I got home, it’s hard to compete with the builders for our narrow hallway. This is a good opportunity for me do to some walking practice while they were all talking. At least, I know the parents wouldn’t be staring at me. In a way, I felt a bit lonely that Tim couldn’t be there for me. I know he always thinks I’m a grown up and I should be able to look after myself. I know it’s fine for me to go there on my own but sometimes, I think it’d be nice to have someone there with me just to see what I’m doing and can help me asking questions and remembering all the answers.

After Gavin finished with them, he got me to go up and down the stairs. I haven’t done this before without the ankle brace on so it was a bit of challenge. Gavin kept reminding me to relax my shoulders and arms. He said he felt his shoulders were so tense just by looking at me. It’s strange I didn’t even know my shoulders were tense. I couldn’t see myself and I certainly didn’t feel it. On the way down, Gavin kept reminding me (again) to relax my arms. I didn’t know I was so tense but at one stage he commented that he didn’t know I could ‘multi-tasking’. I didn’t understand what he meant. He said I was going downstairs and sqeezing his hand at the same time. I didn’t even notice I was squeezing his hand. All my concentration was on placing my foot carefully on the step. I guess I must have been squeezing his hand quite hard because at one point he stopped and complained that I was hurting his hand so much that he probably won’t be able to type on the keyboard. Maybe I should use my left hand for support next time.

I did a few more laps of walking practice after the stairs. Gavin watched and thought I was doing better. He thought I was a lot faster than before. He said this was the speed I started with a few weeks ago with ankle brace on and now I’m doing about the same without the brace on. He thinks my legs are a bit stronger than before. I told him that I have worked very hard on my legs while I was in Canberra – with the combination of stepper and elliptical.

At the end of the session, Gavin asked me to bring my shoulder exercises with me next time because he wants to make some changes. I didn’t ask him why but I presume the orthopaedics may have communicated with them regarding the specific strengthening I need to do. He also commented that he doesn’t think my ankle is inverting as much as a few weeks ago. He told me that I must do half an hour of walking practice without brace every day. I asked him whether that’s going to help with the inversion. He said it should help but there is no guarantee. I asked him whether I should push for the Botox. He said (again) Botox won’t help me and it may even make my walking worse. That’s the part I wish Tim was there to take note for me because it just went over my head (again). He said he’s seen so many patients with Botox injections and it didn’t work on all of them. He put his leg up on the couch and was pointing at certain muscles and explained to me where they normally inject. I thought he was pointing at tib ante but he said no, it’s tib post. I thought tib post is deep in the calf and didn’t know it actually runs all the way down near the ankle. He said normally the injection goes in the tib post. He didn’t think my problem was spasticity and an injection in tib post is not going to do me any good. In fact, he thinks it’s going to make my walking worse. He said if he had thought a Botox would help, they would have arranged that for me a few months ago. I wish Tim was there with me because I don’t think I fully understood what Gavin was on about. Tim and I had this discussion many times. He has been pushing me to hassel John Olver’s secretary to arrange for the Botox as John promised but I told Tim that Gavin didn’t think it was necessary. Tim is worried that Gavin may be wrong since John seemed to be so confident it would work. I don’t know who to believe anymore. I think my instinct tells me I should trust Gavin more since he doesn’t need to answer his mobile phone all the time or running around like a headless chook to get his visa for overseas trips.

29 April - 7 May

I haven't been updating the diary while in Canberra. This doesn't mean I slacked off completely while I was there. In fact, I was working very hard on my legs everyday. We hired a stepper - one of those big ones and borrowed an elliptical cross trainer from Ivana. My daily routine exercises included the stepper, elliptical and mini trampoline. I only noticed it recently that my left thigh is actually smaller than my right thigh - probably due to the atrophy. I know my muscles have atrophied but I didn't realise it was so serious until I noticed the difference in the size of my legs.

Helen has been speaking to Paddy and it's a relief to find out that she is fine. We were all very worried about her when we first heard the news.

We left Canberra on Saturday because Tim has too much work to do.

It's good to come home to see the house is still there. I was a bit worried leaving the house to the builders while they work on the bathroom. I'm glad we went away for a while because it's so dusty when we got back - all the floors and furnitures are covered with dust. The bathroom is not finished yet but we have hired a portable bathroom which comes with a shower and a toilet in a trailer. It's actually better than I expected. The only problem is - I know this may sound petty - it's a bit like a public toilet at the moment because the builders all use it. Tim was going to tell them that they are welcome to use it but I stopped him from doing that. I could tell that they have been using it. For a start, I don't leave the toilet seat up and Tim has been house trained enough not to leave it up. On several occassions, I went to the bathroom and the toilet seat was up. I could also see muddy foot prints and wood dust on the floor. It's quite clear that they have been using it without invitation anyway. Tim thinks I'm just mean but I just don't like sharing my bathroom with everyone, especially when we have been paying the hiring fees for the portable bathroom!

28 April 2005

I haven't published the diary for a while because we are in Canberra and there has been a lot of interruptions. I have only just managed to get back to it.

The bathroom people told us they'd be here between 7 am and 9 am. I was worried that they'd turned up at 7 am sharp so I got up just about 6.30 a.m., had a shower, used the toilet and was all ready for them to come. Tim had to go to a meeting from 11 am to 12.30 p.m. so I had to wait for him to come back before we leave for Canberra.

The workmen didn't turn up until about 9 a.m. I was feeling quite tired by this time. The thought of not being able to use the toilet for so many hours has almost given me a bladder problem. I didn't like the thought of being in the house alone with the workmen so I went to the study and started typing my diary. Unfortunately, the laptop ran out of battery within about 15 minutes so there was nothing I could do. Tim has taken the power cord with him to the meeting so there was no way I could recharge the battery. I didn't want to just stay in the study and do nothing so I went to the kitchen and continued with packing - such as cutting up some fruit for the long trip. As I walked down the hallway, one of the workmen saw me and noticed that I was limping and asked me what happened to my leg. I was dreading that they may ask that. Didn't want to give them too much information so I just said 'it's a bit complicated' and walked off. I didn't think it was necessary for me to provide them with all the deails. I guess, at least they didn't ask me what my mother's maiden name was (a joke from the comedy festival we went to).

I was quite upset when Tim came back and had a pee in the backyard. I was busting as well but I couldn't just go to the backyard and do it there. It's always easier for men. Tim said I could go to the toilet when we pick up liilian at the childcare. We didn't leave the house till almost 2.30 p.m. By the time we picked up Lillian and filled up the petrol, it was already pretty late. I think it's going to be a long and tiring drive.

We were all very tired and hungry by the time we got to ALbury. Tim suggested that we stop by and have some dinner in Albury. We drove pass a pizza place and it looked ok. Tim asked me if I felt like having pizza. I was quite hungry and didn't really mind what we have, my only concern, however, is whether people would be staring at me while I limp all the way from the carpark to the restaurant. We drove pass it and Tim wanted to see if there is any other options. It must be the main street of Albury because there are several cafes and restaurants along the street. I didn't really want to go to somewhere that's too crowded so we drove up a bit further and found another pizza restaurant. We went in there and it's actually pretty quiet in there. We sat down and looked at the menu. Tim decided not to stay there because he thinks the food looks pretty average. We ended up going to an Indian restaurant a few doors away from the pizza place. The owner is Indian so I guess the food shouldn't be too bad. We were pleased to know that they actually have high chairs for children. She got one of those high chairs for Lillian so we all sat down to have a family meal. The restaurant filled up quickly as we were waiting for our food. I had my back to the other tables so I could not really see them. The food was not too bad but we were eager to hit the road again as soon as we finished the sweets we ordered for Lillian but she didn't want.

It was pretty lated by the time we got to Helen and Mal's place in Canberra. I know they are actually away and won't be back till tomorrow. I asked Tim about how we get in but he said he had it all worked out so I need not worry. Tim parked the car just outside the house and started unloading the luggage from the boot. It was very cold outside so Lillian and I stayed in the car. There was a car pulled in the driveway. Tim was talking to the driver but I could not see who it was. After a while, Tim got back in the car and told me that was Albert, one of Mal and Helen's friends and we are going to stay at their place tonight.

It turned out that Helen has asked her friend, Peg, to leave the house key in the letter box for us but Tim coulcn't find it. Albert (knows that there is nobody in the house) happened to drive pass and thought the burglar was loading up the boot so he stopped to see what's going on. When he realised that we were locked out, he offered us to stay at their place for the night. We were really lucky because I don't know what we might do otherwise since it's almost midnight.

Albert and Ivana's place is very nice. It's almost like staying in a hotel. Albert is a well known architect and designer so their place often appears in the magazines.

Mal and Helen came back the next day and we found out that Peg did put the key in the letter box but their friend, Paddy, who has been collecting the mails for them, had a cerebral aneurysm while in Sydney, so another friend, Jocelyn, collected the mails including the one with the house key. It all worked out fine in the end. I was quite worried about Paddy's condition because I have seen many people at MECRS who had aneurysm and I know how terrible it can be. I just hope Paddy is ok. Helen said she'll call to find out more.