More Holidays with Di and Daniel

August 2007 I had a great holiday with Di and everyone, rather than they come up and visit me, I decided that I would go and stay with them, although this time I made my own travel arrangements, rather than them coming up for me, bit more independence, if you see what I mean. Anyway Di booked the hotel room again for me and I was all set to go down, and I couldn't wait. The day finally arrived and away I went, luckly my friend had a GPS system in there car so it told us exactly where we had to go and we arrived bang on time and straight to the door, no problems. Lauren came out to help me then Di, I made my way on my frame inside the house while Lauren sorted my chair and bag out. I had only just got through the door and I could hear Dan getting excited, Di was cutting his hair in the bathroom, so I popped my head around the door and that was it Daniel was laughing so much he was no more good, it was great to see, then Di carried him into the room and sat him in his comfy armchair and that was him sorted and laughing!!!. His excitement lasted about half an hour and eventually he calmed down, but then I give Di a CD for him of his favourite group STEPS, he loves them.

We all spent the next few days together and we went out and to different places, let me tell you my arms were aching as not used to pushing wheelchair so much, but I really enjoyed our time together and we had good weather. One of the days we went to the park or at least I think it was a park, it was massive mind you Lauren had to help push me some of the way then we went for an ice cream, now this was the best bit as far has Daniel was thinking, not only had he polished off a triffe on the moring while we are the shopping centre but now he was enjoying an ice cream. It truely was and is happy days when I am with them all

Memories of my stays with Di and Daniel

Well this was going to be great, in 2004 I had to undergo another operation, which you will or can read about earlier on, anyway when I came home Di said would you like to come and stay with us for a few days ? in the summer I of course jumped at the chance, although I said I might have a problem in the holidays because I knew I wasn't going to be mobile enough to be able to manage on my own, but would be great if I could come in the October holidays, and also I was worried about getting down there. I remember Di saying don't worry too much about that maybe we could come down and collect you and bring you back etc, I said great if you are sure, so it was agreed and I had time to work on getting mobile. I couldn't wait

The October holidays finally came and it was only a matter of hours before they arrived, this time Mum met them and brought them to our house, and Mum had done a load of sandwiches and cakes and things for dinner, when they were getting out of the van I noticed that Lauren was waiting for the lift, then I remember she had broke her leg and was sporting a pair of crutches and a bright red plaster. Everyone was in and getting some dinner before we all got in the van, I could see Daniel was pleased to see Mum again vocal as always.

As it was getting closer to us leaving I could see Mum was getting nervous as it was only the second time I had been away on my own, but Di re-assured her and we were off, Daniel laughing as I was clamped behind him in the van. we had been travelling a while but we got to Di's house about tea time, we off loaded and Di helped me in and then sorted Daniel out and let him on the sofa. We had a cup of tea and Di sorted some tea out for Daniel and then we all decided to have fish and chips. It was quite funny because as Di was feeding Daniel he wasn't that interested, after a bit I said do you want some fish and chips Daniel and he looked at me and smiled then stuck his tongue out which means yes!! So fish and chips we had including Daniel and he ate the lot.

Then we relaxed for a while and watched the TV and chatted then before it got too late Di took me to the hotel so that I could check in and sort myself out. I was interested to see what the access and room was like, and I have to say the room was really good, plenty of space and the bathroom was accessible with grab rails, Di helped me in the room and arranged to collect me in the morning to go back to there house.

I stayed with them for 4 days and it was great, although things took a turn for the worse and on the day I was coming home, I found out that Mum had took ill and was in hospital, Di came on the morning early so we could drive back, and she said don't we will drive you straight to the hospital rather than taking you home, I was so grateful for that you wouldn't believe

We finally got to the hospital and Mum was pleased too see me and suprised a little to see Di but realised that we had come straight there instead. After a while we said our goodbyes, not as we planed and I was a bit sad to say goodbye from there, as we had planned to go for something to eat before they went home.

No matter what I have been though Di and her family have been there and supporting me all the way and I will be forever grateful for that, like I say friends are for life

A second christmas

It was approaching Christmas and the friendship with Di and everyone had grew beyond my expectations and I decided that I wanted to sort out some Christmas pressies to send off so I went shopping to see what I could find that would go easily in the post, without too much damage and I settled on selection boxes because I knew they all liked chocolate and 3 baseball caps, anyway at the weekend I was packing it up and I get a phone call from Di to say is there a travel inn a bit closer to you than the one we stayed in I said yes why ? she replied because we want to come down and see you again, so I thought ah I can save the pressies for when they come, sort of a second Christmas so it was organised and the days were set, this time though they went to the travel in and checked in and came straight to my house without too much trouble, the minute they come into my house it was total excitement because we had our decorations up and they loved it Then I gave them there pressies which they also loved and I enjoyed them being here again, it was also coming up to Mum's birthday so it was pressies all the way around.

We went out for a meal and we went back to the room, but I didn't stay too long with them as they were a bit tired and we were going to be spending the day together tomorrow. They arrive about 10.30 the next morning and everyone off loaded from the van and came in this time we sorted the chairs pretty quick, just to make things awkward though, we all went in my computer room to play a few games and Di pushed Daniel though as he was in a big chair and I wasn't sure he was going to get through but he did and he enjoyed watching us playing on the computer. Then after lunch they had to get ready to go back home as they were going to a fancy dress new years eve party. Daniel was going to be dressed up as a pirate.

Meeting up

Di was married to Steve and they have three children, Daniel who is the oldest, then Christopher and Lauren. My friendship with Di and her family flurshed and we chatted more on messenger when I got home but only for short bursts at first because I couldn't sit for long, but that improved and before long we decided to connect with the webcam and it was great to finally meet everyone, it was a bit strange at first but we soon got the hang of it, then after a period of time Di rang me to say we have booked in a travel lodge close to you because we feel its time that we met for real, well I jumped at the chance I was so excited and Mum was happy too becuase they were part of our family. The day finally came and the weather was pretty good, we just waited for the call to say they had landed and then Mum was going up to the lodge to meet them and let them follow her to our house. I sat at home and waited.

Then I saw this big van pulling up and Mum behind then I saw the lift coming down and they were here, out jumped there other 2 children from the side of the van and then Di was bring her other son down on the lift in his chair, got him down and sent it back for her husband who is also in a wheelchair, this was going to be fun to say the least 3 wheelchairs in the house, Mum looked a bit worried we weren't all going to fit in the front room, but we did.

It was so nice to finally meet up, we chatted laughed and chatted some more and it was great, then Di lifted Daniel out of his chair and laided him on the sofa for a while so he could stretch out a bit and I remember Mum was sitting at one end of the sofa and he was laid in the corner bit and I think he was exicted to say the least because he was quite vocal and kept moving his head around to find Mum. Then after a while Di put him back in his chair and sorted him out, and I said to him are you hungry mate, he stuck his tounge out which means Yes so we all got sorted out and got loaded into the van I travelled with them in the van which was great! Mum drove and we followed back to the hotel and we went into the restaurant to eat. Mum decided that as it was my night that she would go and visit her friends and come back and pick me up when I was ready.

After the meal at we all went into the play area and Daniel and I watched Chris and Lauren jump about and then we all went back to the their room for a bit of a rest and to chat more. We had to organise things in terms of chairs as there wasn't a lot of room, but we were soon settled having a cup of tea and chatting.

I was having a great time and then I rung Mum to come and collect me and Mum spent a bit of time in the room with everyone and then we made our way home and Di said, it's been really nice to meet up and we must do it again and believe me we have done

Friendships are for life not just for Christmas

Friends are important to me, the same as my family are, in some ways my friends are just an extended part of my family, and theres one such family, that hare part of my life and this wonderful friendship started not long after I was diagnosed with Scoliosis. I started to look on the web for information connecting scoliosis and cerebral palsy, and at the time I couldnt find much information. I then decided to look on the discussion forum that was part of the Scope website.

There were lots of messages in there but nothing that I could see about scoliosis, so I decided to join up and post my own message and see if I got any response, I had nothing to loose and just maybe someone might come forward.

To my joy I had had a reply from a lady (Di) who's son Daniel had CP and scoliosis, and had gone through the surgery I was waiting for, I thought wow my prays have been answered, so I replied straightaway, and this is were the friendship started. We sent each other emails and chatted about her son's experiences and I started to feel comfortable about what I was going to face. Once I had got her email, I decided to add it to my messenger on the off chance she might also have messenger and we could engage in live chat, then one Saturday I noticed her email address sign in and I was so pleased, it was great to be able to chat to each other like this and we became great friends and still are. I had lots of questions and some of them Di answered through her own experiences with her son, and gave me some tips for while I was in hospital which was great.

My surgery date came and I knew I wouldn't beable to chat to Di which I was a bit upset about, but I knew our friendship would hold and it sure did, because not only did Di write to me but she rang the ward regularly to see how I was doing ? and then some nights she would ring home and talk to mum, this helped mum a lot becuase it was a stressful time for her but at least she had comfort in talking to Di and knowing that I was going to come out on top like her son did. Di's son Daniel had had the spinal surgery the year before me.

Never under estimate the impact that you have on someones life

"Never under estimate the impact that you have on someones life" Tim Wambach - This is in Tim's book and I couldn't agree more with what he says. It is only after a period of time when you can take stock of your life that you realise the impact someone and or certain people have on your life.

This is never so true as when Scoliosis and my friend Simone came into my life. Simone lives in Spain and she was the first person that I connected with. After I was diagnosed with the condition I went straight to the net to search for information, over a couple of days I came across a message thread that caught my eye and I wanted to know more, I sent her an email and there the friendship started. Simone was a great help to me not only did she have Scoliosis but she had gone through the surgery that I wwas waiting for. We chatted a lot by email and it helped me understand what I was about to face, not only did Simone help me but over time we chatted daily and still do to this day (5 years on) we helped each other through the good days and the bad ones, on my bad days I leaned on her and vice versa. We have our laughs and moans but I can honestly say our friendship today is as strong if not stonger than it ever was, even though she lives in Spain when we chat its as if we are in the same room, and therefore doesn't matter where in the world we are, we will always be side by side.

Anniversary's coming up

Well this year is a major milestone for me, because on the 13th March 2008, it will be 5 years since my spinal surgery which was and still is the best thing that happened to me. Not only is that a memorable date, but it as the date that my Dad passed away, which you may of read earlier in my story. I always remember my Consultant saying to me "something bad happened then but something good is going to come out of it now" and he was so right, because since that day I have achieved so much.

Keep on Keeping on by Tim Wambach

Did Mike come into Tim's life or did Tim come into Mike's life? Either way, Mike, the intelligent, wheel-chair bound teenager, and Tim, the athletic, can-do young adult will never be the same!

Now Tim Wambach writes the true-life account of their uncommon friendship, offering stories that will keep you rolling on the floor in laughter, while your heart fills with new understanding and compassion. Through the years, Mike's humour, creativity, and strength through adversity touched Tim's heart, and opened his eyes to what life is like for those with special needs. Now let them share their remarkable journey with you. This truly is an uplifting story with an unbelievable ending.

I couldn’t agree more with the book description, I have just finished reading it and it was one of those books that you can’t put down because you so want to find out more about there life. I don’t have the same type of CP as Mike but I can relate to every ounce of his life, from the people staring and looking to having to rely on others for help, to the lift problems. (You will see what I mean about the lifts once you have read the book). I couldn’t agree more where Mike’s father says “Mikey just doesn’t have CP we all do” meaning we as a family have it as we are living it.

I found the book a great inspiration and insight into the Keep on Keeping on family, the book does exactly what it says on the tin so to speak, it lifts inspires you to want to aim higher in your life and achieve your goals in life by formulating a plan and sticking too it. It doesn’t matter if you are disabled or not this book has some great lessons in how to live life’s journey and I would recommend anymore to go and read this. Just because Mike is disabled it doesn’t mean he cant do what he wants to in his life, he just needs the right support network and I truly believe he has that in Tim and his family, and I personally am so pleased to be able to call them my friends, even though they live in USA, because I can connect so much with there life I feel like I have known them all my life.

Back to the future as of now - Keep on Keeping on

Last year my friend introduced me to MySpace as she knew I liked to connect with people and help others by sharing my own life experiences. I am so glad she did introduce me because I started to connect with others, and made some friends along the way. One friend in particular I connected with was Tim his profile was called Keep on Keeping on and it caught my eye. I read the story and I thought yes this is the type of person who is on the same wave length as me, I sent him and email and added him to my contacts, and before long we were connecting and it was great. We are still great friends today.

We chatted and he was telling me about his friend Mikey B (how he was more like a brother to him) and how he and Mikey his brother David and his family gelled with him and made him part of the family. Not long after Tim told me about a book that he had wrote with the help of Mikey, about how he and Mikey came into each others life. I was interested to find out more and couldn’t wait to read it.

First time going to the West End London

It was coming up to my thirteenth birthday (now that’s going back a bit!!!) and in the charts at the time was Any dream will do by Jason Donovan, in association with Joseph and the Technicolor Dreamcoat, which had just hit the West End starring Jason Donovan. I remember asking my Mum and Dad if we could go to London to see this, and they said we will see, time went on and they thought I had forgot about it and then my night before my birthday I was getting excited and Mum said you best go to bed early tonight you have a busy day tomorrow.

The next morning Mum got me up early and said Happy Birthday you better get ready quick the taxi will be here soon. I said “why where we going” and she said it’s a surprise, I then asked Dad the same and he wouldn’t say. The taxi arrived and we loaded everything went down to the High Street, there was a big coach parked up and people were boarding with suitcases. We got out of the taxi and Dad helped me onto the coach and it said “London and the West End” I got so excited we were off to London to see the show I couldn’t believe it.

We eventually arrived in London and it seemed a long time we had been travelling but we were in London now and were allowed to get off the coach for a while to have a walk around the shops. Mum and I were in our element; Dad wasn’t that bothered about shops but came anyway.

We finally hit the hotel and we spent a little time resting and then got changed for dinner, and ready for the show, we boarded the coach the show music playing and we were off. Mum and I were getting excited but I could tell by the look on Dad’s face he wasn’t really looking forward to it not his cup of tea.

Anyway we arrived at the theatre and we were told to follow the staff at the entrance as they were waiting for us, I thought we most of been royalty but no it was so they could help us in my wheelchair. We entered the theatre and WOW is all I could say, this was the first time I had been in a theatre. Dad pushed me to my seat and to my major excitement, we were the first people in and Jason Donovan of all people was down near the stage practicing before the show. I couldn’t contain my excitement and I asked Dad to push me to my seat so that I could stand and hold the seat so I could see him, and once we were settled Jason spoke to me and then waved as he went off to get ready for the performance.

We watched as the theatre started to fill up and I sent Dad off to buy me a programme, which I still have. Then the show started and in true Susie style I jumped a mile because of the loud music and sounds, but after a while I settled down Dad had his eye on me then the show got in to full flow and it was the best show I had ever seen (mind you it was the first one so I had nothing at the time to compare it too) we all stood at the end including me and gave them a standing ovation. To my surprise Dad really enjoyed it more than I thought he would.

Retro Games

Those were the day’s electronic games like Grandstand Munchman, now that was my favourite game and I still having the game now and it works very well. For those of you reading this, who are not sure what I am talking about, it is an electronic game similar to today’s packman, in fact I think it was the munchman that came to be know as packman. Then there was Scramble which was a space game where you had to destroy the aliens, I liked that one because there were different levels to the game and each level was different.

Following those games I then progressed to the Atari System and I had loads of different games for that, I think my favourite back then was crystal castles, and as you can probably tell it was an adventure game. After the Atari I progressed to the ZX Spectrum and this was my first real computer I had, I can remember playing on it with my cousin when I stayed there, and I used to enjoy watching him play some of the games as our particular favourite was Cyclone where you had to fly around the island searching and collecting certain objects. When my cousin grew out of the computer he gave it to me with all the games he had, I loved it for many years.

Childhood memories

Anyway let me see if I can remember all I was wanting to write about, Lego was my favourite toys of all time from an early age, I could be left to be creative I could make what I wanted too and it was great physiotherapy for me also, but I probably didn’t realise it at the time. I had boxes and boxes of it and on a weekend I used to get it all out and Dad and I used to make a huge model a different one each week it was great because we had no instructions to follow just our imagination. I can even remember joining the Lego fan club and Mum and Dad decided to book a holiday to Denmark the home of Lego, I was so excited all those blocks. Unfortunately we had to cancel it because my Grandma had passed away a few days before we were due to go, it was so sad.

I collected a range of the different models and it grew as I got older, I would make planes, houses, fire stations you name it I would have a go, I remember while Mum was helping out her friend in the local corner shop, she saved me these boxes with little draws in, this was great because I could sort them into colours. The next memory I had was when I was at Summerhouse School, in the juniors, we had a huge box of Lego I think it had been brought in by one of the teachers. I was in my element and on a lunchtime or break I would sit on the carpet and happily play. One of my good friends David who used to love to draw and be creative, decided on time to come and help, and over a few days we had built our very own little town.
The next memory I have of Lego is going back to when Mark Curry was a presenter on Blue Peter and they were doing a feature on Lego, and there were some huge models in the studio, and he accidentally knocking the head off a man made of Lego

Digressing and dreaming of the memories in my life, how they come back to me

It takes we a while sometimes to go to sleep as my mind is usually thinking about a lot of things at once, this being one of them, I had been doing some searches on the net about Lego, as I remembered seeing a feature on TV about the fact that it was Lego’s 50th birthday this year and this brought back a lot of memories and I thought to myself I hope I can remember all of this so I cant write it.

Weekends here

Well it’s Saturday and it’s my chill out day, the carers have just left and tomorrow is there last day, as Mum is so much more independent that she feels she can mange now so decided to cancel the service. People might be thinking why cancel it early on but I see it as a good thing because much is doing 99% of it herself now which shows how much she has improved in such a short space of time. Well Done Mum!!! And thank you to the team of people who have helped her achieve this, without your help Mum might have had to stay in hospital longer.
The carer that came this morning is really funny and it feels like we have known each other for years, but this is mainly due to the fact that I used the same scheme a few years back and as soon as she came to the house, we remembered each other straight away. Anyway she was sorting out the washing up and drying the dishes for us, and then she said shall I show you how to make a chicken out of a tea towel, I thought oh my god you are having a laugh, but no she folded the tea towel a few times and there it was a chicken made from a tea towel, it was so funny. Ah well it’s been good while it lasted! Well Mum is in the kitchen right now and guess what she is facing the right way!!!! Which means I might get a cup of tea?

Sunday was slightly out of the ordinary for us, we woke to a beautiful sunny day and I thought this isn’t bad for the time of year. We waited for the carers to come for the final time and then the day was ours to do what we liked, or so it seemed to start with. I was sat on my computer chatting to a couple of people and writing away and Mum had the TV on then all of a sudden Mum said it looks might black out there, so I wheeled into the kitchen to see what was going on, and low and behold there was the blackest clouds of smoke you have ever seen from the house opposite and within a matter of minutes 3 fire engines were on seen. Luckily everyone was safe and the fire was sorted out.

Last night I went to bed and carried on reading an amazing called Keep on keeping on written by a friend of mine in America, I will talk about this soon. Anyway I got to the point where I could put it down and off I went to sleep

Lift out of use

I then went off to work in my wheelchair accessible taxi which I have to say was on the drive when the ambulance came and they looked a bit daft because I just wheeled in and I was done, and there’s a brand new ambulance and it didn’t really function for wheelchairs. This is when my nightmare started, happily unloading at work and up I go to the lift which takes me to the office, only to find it wasn’t working so I rang the security office and told them, luckily my driver was still there so I just had to come back home till it was fixed. The next morning I got a call to say it was fixed hooray, I went to work as normal that day and all went well, Wednesday was ok too, but then my luck ended because on the Thursday, I went out to go for lunch and bang it wasn’t working again. Thankfully my colleague went to get me some lunch while we waiting for the engineer to come and fix it.

2pm came and it was getting close to me going home, still no sign of them so I had to be carried out in the Evac chair, which let me tell you I don’t like as it so uncomfortable and hurts my back, but least I got out and into my taxi safely. I hope they fix it soon.

Modern Technology

This week has been a bit different to say the least, the ambulance came as usual to take her for physio, anyway they take her up on the lift and then the problem hit, they couldn’t fasten the chair down why because of the anti tippers on the back of the chair stopped it being fastened down. I had to laugh because I thought how long have anti tippers been made for chairs and this is a brand new ambulance and they can’t clamp a chair, that’s modern technology for you. In the end Mum had to be helped to a seat.

Pains and jokes along the way

Mum is still suffering with the phantom pains and some days they are really bad, over last couple of days the Dr has increased the medication, so hopefully they will help. Mum quite enjoyed her first session at the physio group; she came home and flaked out in the armchair. Things seemed to go well from there; mum seems to be doing more and more which is great. Sunday dinners are great I have to say, we are a great team, the bits I can’t do Mum does and the bits she can’t do I do.

We have a standing joke in the kitchen now, with the way our kitchen is layout out when you come through the door the fridge for example is on the left side and the door would open out onto yourself, if you see what I mean. This means that you would have to go to the end of the kitchen and turn around to face the right way so to speak. My room goes onto the kitchen and a lot of the time I can wheel into the kitchen quite easily, so we say if we want a drink Mum will say you are at the right end so you can get the milk!!! I reply ok it’s your end for the kettle, and between us we finally get a cup of tea. It’s like me to you, you to me.

Only way is up

Well things are improving slowly in a lot of respects, Mum and I went to see the Consultant and everything went well they were very pleased with how wound was healing. We spent a bit of time talking about the Phantom pains that Mum is experiencing as I didn't know a lot about it but it’s to do with the nerves etc. Hopefully things will settle down in time.
Mum's goal is to be walking up to the clinic in 6 months and to set that going her Physio starts on Friday, I am quite excited for her, although I know she is a bit nervous, but that is to be expected. From a carer point of view things are going well we are halfway through the allocated time and I have to say I can see a huge improvement.

Wacky Races

Mum is doing really good from a mobility point, but we are having a few down days at the moment, which is understandable and we are dealing with the phantom pains they seem to be getting less, although it depends from day to day.

It's like wacky races in the house now when we both in our chairs can be funny at times, its like 1 wheel forward and 2 back, we have now had our first week at home and I think we are doing well. On Sunday we did a curry together which was nice although we were both tired after it. Although Mum gets tired quickly I think she has managed the wheelchair really well, turns better than me at times.

Healing well
Well Mum has been home now for 2 weeks and everything seems to be healing well or it seems to be. The pain still seems quite a lot still so I am hoping as things settle down, the pain will start to go. Mum is doing well and even the carers can see a difference in her, I see a difference but not as much as they do because I see it every day, but because we have a number of different carers coming in and out they can see it.

Considering the ulcer was very severe it is amazing how well things are healing up now, it gives hope for when the therapy programme starts. Who knows we might go together, me at one end of the bars and Mum at the other. Tomorrow we go back to see the Consultant so we are hoping that he will be pleased as to how things are healing also, Mum is hoping that she will be signed off from seeing him, although we will have to wait and see.

Mum doing ok

Well by the second day Mum was out of bed and sat in the chair to my great surprise, and it was great to see as I wasn't expecting it this quick. We went from strength to strength from that day, everyday I visited and I could see a big change.

After the weekend I had an access visit to our house from Occupational Therapy, so that they could assess things for Mum coming home. We are quite luck because the house has been adapted for me, so the assessment didn't take long and I knew that everything was going to be fine for her to home.

Sure enough 1 week to the day of the operation Mum finally came home and we were back together again. The home care service was put in place straight away, which was a great help to both of us, because I wasn't sure how much Mum could do. We have this care package for 6 weeks everyday up to 4 times a day to help Mum gain her independence with support from the fully team of carers and therapists.

Day of the operation

I rang the hospital on the morning to find out when Mum was going down and Mum came to the phone and we chatted for a few minutes, this was nice and I think it calmed us both. Then I tried to keep myself occupied with work and rung again at 12 and she had just left, so I knew it would be a while, time felt as if it was dragging and then I rang the ward again about 3 and she had come back and had gone through to the Surgical Observation Ward, I asked if I was allowed to come and see her, and they said of "course she is sat up wake but a bit tired".

Mum had had a special spinal injection so she didn't have to be put to sleep for the operation, which was much better for her because of her health problems. I jumped into a taxi and off I went. I was really surprised how awake she was when I got there, but nodding off to sleep, I stayed a while and then came home happy that she came through it ok.

It is a whole new world

Well it's been a long time since I have wrote about the challenges in my life, and now it is a little quiet I can now sit for a while and pour my thoughts out. It has been a hard couple of weeks. In the New Year Mum was still in hospital and it was decided that the only way the Mum was going to recover and have a quality of life again was to have her leg finally removed above the knee. It was hard to take as you can imagine, although not unexpected, anyway the day was set for the Thursday 3rd Jan I think and then the wheels were set in motion and this is when it started to become really busy.

Starting to feel a bit better today

Well I am starting to feel back to my normal self now last week I spent the weekend being sick, then to top it off started with a cold.

Well Mum and I had a very quiet Christmas this year in the ward, we had dinner and spent the time together, it was enjoyable in its own way, not the same as being at home but we made the best of it. We then watched the Paientline TV and I have to say I didn't think there was much on, and if I'm honest Mum only wanted the TV on so she could watch the Queen's speech. On the morning I packed up all the presents and took them with me so that I could open them with Mum. When I got to the ward, Mum said "Santa's already been when I woke up there was a present on my table."

Walking with a difference

Well while Mum is in hospital, I am still working hard with my Physio and off I went last Monday and what a great session it turned out to be. After I did some passive movement work I went into the gym which I always enjoy as I always feel free. I started off doing some balance work in the bars and then went for a walk with my crutches. My Physio said "you are as safe as houses now with those" "Do you want to try some walking sticks ?"

Wow boy do I so while I was in the bars I did a swap with my crutches and took hold of the sticks. wow what a funny feeling, but with the help of my Physio off I went and I managed quite well considering it was my first time

Mum in hospital

What a couple of weeks I have had, Mum is in hospital at the moment and therefore I have been in charge, it is amazing how much I have managed during this time. I think I have done well looking after the house, washing, cooking, looking after myself, and going to work. in the first couple of days I fought with my socks, as I can't bend too far but as time as gone on I can do it in less time now.

This is the fourth Christmas when Mum has been in hospital which is hard as you can imagine, although from a personal level in terms of managing things for myself, I improve every time, and this time I have surprised myself

Santa and his Reindeers visit Stockton

We are getting a step closer to Christmas, and as a result Santa and his reindeers visited Stockton yesterday to lead the Lantern parade through the High Street. Although it was cold and wet it didn't stop everyone enjoying the day. I had a great view of the parade from the Town Hall and it was great too the number of people that took part.

One year on

Well I know I have gone a couple of days over, but I have achieved my first full year on the 31st October 2007 without having a spasm, so not only was I celebrating my birthday, but it was like I was having another one!!!! and I am feeling good.

I also recently went to see my Consultant about my shoulder and that is fine it has recovered and thawed out and I am back to normal movement which is great, let me tell you I didn't cope well with the sling, I know its supposed to prevent you from moving and it would not of been so bad if it had been my left arm. Although it was my right and it stopped me from doing a lot of things, it was only after I had had it on for a couple of hours I realised just how disabled I had become, and I know you are probably thinking that "you are disabled" but I became disabled in the real sense of the word.

While I was there we discussed about the Dantrolene medication was going as we had decided to try without it. I have got to admit I was a bit worried at first and I do still carry it with me but have not needed to take it, and apart from feeling a little fuzzy headed for a couple of days I have been fine. I was suppressed just how long I had been off it as the last time I was there at the hospital was the 25 September.

3 days in and all seems ok

Well I am not sure how I feel if I am honest, I am now 3 days without my muscle relaxants and I feel ok don’t feel tight or stiff, so who knows this might be another new beginning for me. Started physio again for my shoulder and we went though a series of exercises which will help strength my muscles and improve my range of movement. I will be interested to see how things go in a couple of days

No spasms
Well it's just over a week now since I stopped my muscle relaxants and so far so good I don’t feel any worse for not having them I don’t have tightness and I can still move around quite easy so I am starting to think that the frame has really been helping to remove my spasticity that was the best thing I ever bought. I am having Physio on Monday so will get checked out and see if I can still stay off them

Time flys
Well it is coming very close to a full year without any spasms which for me is a huge thing and the fact that it will be 1 month on Wednesday without my medication is even better. I was just thinking the other day when I was walking down the long corridor from my office, wow when I first moved into this office and looked at the distance I would have to walk to get to the toilet I thought to myself I'm never going to do it. A few days passed and I got further down the corridor each day to the