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 point that by the end of the week I had made it down one half and managed to get back. Now I can do it in a matter of minutes and it doesn't even cross my mind now I just do it

Shoulder Problems

Just when I thought I was in the clear, I get hit by a frozen shoulder. These I am used to well, with my left arm but trust me to be different this time it’s my right arm. Anyway I went to see my Consultant who gave me a cortisone injection, the perfect cure in my opinion and it was going to be a case of letting it thaw out. Then last week I was just watching the TV as you do and I just happened to move my arm and there was a big cracking sound, so much so that even Mum jumped but the great thing was the pain seemed to disappear in a matter of minutes.

So far so good or so I thought!!! Thursday I was getting ready to go home from work and I moved my arm and the next thing I knew my arm felt as if it had come out of the socket so 999 was called and the Paramedics came to the rescue and manipulated it back in it was painful let me tell you. On a positive note mind I was really pleased that it didn’t develop into a muscle spasm because that would of just made the situation a whole lot worse, so it is proving to me that I am gaining control back.

Today I went back to see the Consultant who has checked everything out and my shoulder is ok the muscles are weak but not damaged which I was pleased about. The course of action now is to try and stop my muscle relaxant medication for a while and start with some Physio to try and build up my muscles around my shoulders and then go and see the Consultant in a couple of weeks

I can sit on a normal chair

Well it has been a while since I have wrote but it's because I have been busy and now I feel I can sit down here and talk about what's been happening. Firstly I just happened to turn the TV on yesterday and the Secret Garden was on right at the point of where Colin stands for the very first time, and in a way that is how I feel my life is like now, I am discovering new things happening to me all the time. I managed for the first time in a long time to sit on a normal chair for the entire length of my meeting at work which was about an hour last week and I felt really good. I was quite pleased that I had managed to maintain control, if I had tried that before I had had my back surgery then I would have slid from the chair but now I can sit and hold my head up high!!!! and now I have continued to use a normal chair as much as I can gives me a bigger sense of freedom in the office.

Walking on
well what a good week I have had mobility wise, I have now managed to totally accept the carport in my office at work and now I am well away on my crutches not quite running but now far from it and I don't feel as stiff as I used to, ok I can feel the odd little click in my back sometimes but other than that it's nice to be able to move. I am also working on my balance in the hope that I might one day soon be able to walk unaided, who knows anything is possible I say!!!

What a great week

Well what a great week I have had, work has been busy as you can imagine lots of organising to be done for all the events we have got on in next few weeks to months. What made it busier was I have been madly sorting things as I am going away for a few days next week. Also this week I have been travelling to work happier than ever you may ask why ? well I will tell you, I managed to find a local taxi firm that has a wheelchair accessible taxi and therefore it has been fantastic to be able to travel in my chair for the first time in my working life

Rotational movements fantastic changes occur

Over the last couple of days I have been browsing the web in my quest to learn more about endless possibilities of Living with Cerebral Palsy, I have a friend who is currently having Spider therapy you may of read about him anyway he is an inspiration to me and also inspires we more to want to achieve more myself. We chat quite a lot and compare our progress and I have even been in communication with the therapists there, they are as impressed with the things that have been happening to me of late.

This inspired me to want to find out as much as I can to how and why they things are happening the way they are, anyway I have sent out a few emails to different conductive education websites and physiotherapy sites and I am please to say have had quite an interesting response
One particular one has given me food for thought I sent out the following email out

Reciprocal walkers for people with CP
Please let me give you a little background as to what has been happening to me recently, I have Spastic Diplegia Cerebral Palsy since birth which effects mainly my lower limbs and a little in my arms although its not really that noticeable. I was also diagnosed with Neuromuscular Scoliosis in my 20's and under went a Posterior correction with Harrington rods and a spinal fusion T10-L5 in 2003 which was hugely successful and the best thing to happen to me as I have been pain free from the minute I woke in the recovery room and its great.

I have had different types of surgery throughout my life a lot of them were orthopaedic ones and in 2004 I had an athrodesis done of my left knee where it was fused straight and again was hugely successful and it has allowed me to walk again after many years of pain and not walking it is nice to be able to walk again with the frame.

Over the years I have walked with frames wheeled and non wheeled, crutches, and last October my physiotherapist and I decided to give a reciprocal walker a try as that to me seemed a more natural way of walking compared to the Zimmer frame I had been using, I maintained for a long time that it never felt right to me because it didn't feel to me that I was walking normally. The last year I started to use this frame and wow what a difference I can't quite believe what is happening. It took me a while to get used to the pattern but within the first week I was away I then noticed after a couple of days I felt totally different in myself all my spasticity had gone and has remained gone my movement has improved 100% and I can do more and more each day and cant quite understand why its happening my physiotherapist thinks I have been doing my own conductive education and it has open up nueropathways reconnecting making things happen as they should be.

In your work as a Neuro-Physiotherapist / conductor have you ever worked with reciprocal walkers with people with CP ?
I hope you don't mind me asking the question and would like to thank you for taking the time to read my email

And this is some of the reply that has interested me greatly:
I have not used the reciprocal walkers with any of my clients . I am interested to hear the difference that has made for you. I believe because it is creating rotation in your trunk and pelvis ,the rotation also crates eye movements side to side which reduces the spasticity. nearly all Dipelgia fix their eyes as they are walking. when the eye movement’s changes due to rotational movement’s fantastic changes occur

Thumbs up to Marks and Spencer

Well its Bank Holiday again and as its Britain the weather is raining and cold but I braved the weather yesterday and went off to M&S on Teesside Park for some well earned retail therapy and brought myself a rather nice jacket I mean you got to look tidy for work and even if I do say it myself I look smart

I went to check out the changing rooms and I was really impressed the room was big enough to take my chair in rather than leaving it outside and when I got in inside it was fully equipped with hand rails all the way around and there was a drop down one next to the seat. I thought it had been well thought out as usually I buy things and try them on at home because there isn't the room. It was nice to be ale to try the clothes on and not have to return them the next day
Lets hope all shops take a leaf out of their book it’s nice that I can shop comfortably the same as everyone else

How do we solve a problem like Susie

From the title of this entry you probably be thinking I had been watching the show on the BBC to find the next person to play Joseph in the West-end. And to a certain degree you would be right in thinking this, although it sort of came to me on Friday after I went to see my Physio because of a fall I had on Thursday, don't worry I'm fine! but once I had been checked over we got talking as we always do me asking questions again about the new things that are happening too me with my Physio. It's a bit like as new things happen it’s like I present the hospital with new problems to solve

We are 100% certain that since having my new frame I have been doing my own Conductive Education and I take my hat off to the founder of this as it's great. My planned program for the next three months is to continue to work hard with my frame and with my crutches if I can (although doesn't feel quite right with them, thinking it might be the base isn't as big compared with frame) and then go back and work on opening more pathways

Major milestone

Well the 1st May was a great day for me I have to say and the reason being I hit a major milestone for me which was I have had 6 clear months without having a muscle spasm which for me is a big thing, because I was having them on a monthly basis and they were as painful as they always were before I had my back surgery. So here's to the next 6 months and boy am I looking forward to it, I am not 100% certain yet whether or not my frame is helping to stop them, but maybe in another 6 months I will be able to say that the frame has stopped them completely

Strange things going on in my head

Since a young age probably teens I have always tended to have a weak left arm well always used right arm / hand for things. Before I had my back surgery done always used left arm to hold myself up to hold me up and needed to do things with my right most of the time. Then I had the operation and I slowly started to use left arm and hand for something’s, but still tended to use right.

Anyway recently I came home from work and developed a banging headache as the evening went on, I put it down to busy day and tiredness and went to bed and took a paracetamol slept it off. I woke next morning fine didn't think anything of it went down for breakfast and mum had made me cup of tea and placed it so could get it with strong hand as normal, but for some odd reason I moved my left arm and went to get it with hand and picked it up with no problem and I have never been able too do that without a struggle.

I am wondering if headache was something reconnecting in head because I can still do it and its improving all of the time. I went back to work after the event and was really pleased with myself and people picked up on it. I said I have something to show you and I proceeded to pick up my desk and the response was you can't do that !!!!!!!! I just have I said

Cerebral Palsy or not that is the question

Over the last couple of days something as been puzzling me slightly and sort of running in my head to try and logically think of the answer, although I am not sure there is one. Anyway I thought I would get my thoughts out onto paper so to speak.

When I started to change my walking method I had some amazing results and they are still happening which I'm pleased about, as yet I haven't been able to find a possible reason for it, so maybe I'm the first person this has happened too who knows

Anyway, here's my thoughts on the subject, I was born with Cerebral Palsy and have always been told this and never questioned it till now that is. I am actually starting to wonder whether in fact I have CP or not, or whether or not it has actually been Scoliosis from the beginning just was never picked up on, because my problems where always put down to my CP.

What I'm wondering is if I had had the curve from the beginning and it was not picked up on, the curve could of caused me to have tight muscles in legs because of the awkward position of body whether in sitting or standing. My Scoliosis wasn't picked up on till I was in Adulthood as you will of read earlier in my story, although when I look at photographs of me when I was younger, and from what I know now of Scoliosis I am starting to think that I actually had it much earlier but it was never discovered.

I am wondering whether it would be possible in terms of scoliosis could the curve possibility slow the messages from my brain transferring properly which is why I found it hard to move because for the tightness and needed a walking frame.

Now that I have had my spine surgery and my back is straight and I'm walking with the new frame, the messages are getting down the right path which is why I feel like a completely different person ?

The weekends here

Well it's Saturday and it's well noisy here as we are getting our roof sorted so there's loads of banging I can’t hear myself think the house is shaking. How's my week been, well everything as been fine although I think I have sprained my wrist because I was really sore last night and found it hard to get around because I need my hands when I walk with my frame so I had to use my chair last night when I went up in my lift and its been a long time since I have done that. Although this morning is a lot better and have been able to walk this morning. I think it might it be because I am now walking part time with my crutches and putting more weight through my arms

A busy week

Well we nearly to the end of another interesting week, why interesting you maybe asking if you’re reading this, well where I start. Last week at work we hosted a continental market in our local high street and it seemed to work well and some of the food I tried was quite nice I have to say.

Then this week as been a bust active week work wise and personal wise, I have managed on quite a few occasions now to walk quite a long way now on my crutches, I seem to be a little off when I first start off, but by the time I have turned around and making my way back I am fine think I have sort of got into the swing of it - ooooo opps you not allowed to swing on crutches but you know what I mean I am still not sure whether I will get away with my crutches full time but I will continue trying as I don’t like to be beaten

Great week

Well what great weather we having I have just come in from whizzing around in my powerchair I decided to chill out a bit in my chair as have used a lot of energy this week walking on my crutches and I'm building it up slowly so that I don't tire myself too much as I don't want to trigger a spasm off, considering I have been doing fantastically well.

When I moved to my new office you may remember that I had mentioned that I had managed to walk halfway way to the disabled toilet, which was quite a way for me for the first attempt. Last week I managed to walk all the way there and all the way back. Mind you I had to recline back in my chair for about 10 minutes when I got back to the office because I was tired

Do you think your Cerebral Palsy has worsened as you have got older?

Aging and Cerebral Palsy: Most treatment and research programs concern children with CP and little research has so far been done on aging with a disability. CP affects individuals in different ways and it is hard to generalise about the effects of aging. Although people with cerebral palsy are considered to have a normal life span, the physical challenges of CP may intensify with age (such as increased spasticity, fatigue, loss of strength and declining mobility), and these physical challenges can in turn lead to increased stress and anxiety. Adults with cerebral palsy may consider a number of strategies to cope with the effects of aging.

This has always been a hard thing for me to answer because I don't really know the answer I am not sure if it’s when we get older it becomes generally hard to do things or whether in fact it is the Cerebral Palsy that is becoming harder to manage and therefore making things harder. I am 33 now and although things have been hard over the years I have had many surgeries and that has made things a lot easier for me and improved my independence this far

Do I have muscle spasms as a result of your Cerebral Palsy

As you may of read already through my blog I have spastic diplegia cerebral palsy which means I have tight muscles which means I find it difficult to move at times because my legs are stiff and it can also be tiring because I am sort of fighting against it. The worst time for me is winter or if it’s cold and damp my muscles tighten up. To help me overcome the tightness I take a daily muscle relaxant called Dantrolene and this helps to keep my muscles loose enough to move but not enough to make me go floppy, because with Spastic Diplegia CP the move has to have a certain amount our tightness to be able to function.Dantrolene sodium is a muscle relaxant that is currently the only specific and effective treatment for malignant hyperthermia. It is also used in the management of neuroleptic malignant syndrome, muscle spasticity (e.g. after strokes, in paraplegia, cerebral palsy, or patients with multiple sclerosis) and ecstasy intoxication.

Happy Easter

Well its Good Friday and what an interesting week I have had at work, my first full week in my new office and I have been holding the fought as it were due to Manager been on holiday, I have got to say I think I have managed quite well and enjoyed the challenge. Over the last couple of days I have chilled out and today so far as been nice as spending some quality time with Mum and not rushing around, the sun is out and its lovely its been 3 days running now so maybe Summers come early This week just happened to be watching the Home and health channel and a documentary came on Surgery Saved My Life and it was about 2 children who had scoliosis and underwent surgery so I had to watch it as ever since I had my operation I have always been interested in how the rods were put in and now watching that it has given me an insight. It was an amazing program and the results were fantastic and made such a difference to the children, gave them their life back.

I am a new person

I feel like I'm a new person, in the last few weeks I have started to feel a new person I know that might sound odd but I do you might of heard of the saying when I die I want to come back as... Well I feel as through I have done that so to speak. It is like I have been cocooned like a chrysalis and emerged as a butterfly i.e. someone new I have just found a sense of humour that I didn't know I had sort of been hiding and my real personality is coming through or a least a new personality is starting to break through the clouds I don't feel disabled anymore I feel totally different and my confidence has improved no end I feel that I am not battling with my life and wanting to be accepted as a person ( I know I am a person but you know what I mean ) in the huge world of work. My life has been a constant barrage or medical staff, therapy, surgery and proving people wrong that in fact if you let me try it I will show you that in fact I can do it just give me the chance and much more. Now I am being to break free and my life is just starting I don't seem half as tired these days because I don't have to battle anymore to prove my point and because I don't have to battle I can relax for once like everyone else does and see what life is like on the outside so to speak, ok I might look different but now I feel different in myself you will see a change you might not be able to pin point what it is but you will see it in time, you will see passed the disability, as far as I am concerned I don't have a disability if this life is what its like for everyone then I better pick up quickly and live my new life to the full

I have that Friday feeling

Well its Friday and as the saying goes thank crunchie it Friday, I have had a busy week at work not only with work itself but also moved office yesterday so had to pack everything up and up sticks as it were to my new home and today was my first full day in the new surroundings and I really enjoyed it. So much so that now I have my crutches with me I decided to go for a little walk to see how I coped with the carpet and although it was a bit odd at first, I suppressed myself at how far I had got. Who knows by the end of next week I will of got right round the building, that’s if I don’t get lost in the long corridors. Mind you if I do it everyday which is what I am planning to do will see the corridors more like my own athletic track 10,000 metres by the end of the month

Another great day

Well today I have had another great day in the office, not only from a work point of view but also from a personal point. Today was the first time I had walked in the office with my crutches, I was a bit wary at first but once I had altered the height of them a little I was away. A bit nervous as you can imagine but give me a few days at it and I will be fine I'm sure, all I know is it felt great to be back on them after such a long time. The way I see it now I can only go from strength to strength, what I need to find through is something that will allow me to attach them some how to my powerchair so that I can carry them with me in case I need to walk in somewhere, so that’s my bit of detective work for the weekend

Pro Active

Well here's the end of another week and I have got to say having had my new chair for a week now it has been great. It is really comfortable so much so that at first I didn't want to get out of it. It has made such a difference to my day to day working life. I am more comfortable and sleeping far better on a night, so I am less tired now, it also proved to me how tired I was when I had my old chair because I was constantly trying to keep body upright and trying to stay in the chair, now I don't have too because I am fully supported so now my body doesn't have to work overtime to just keep me in chair. I also feel I can do my job a lot better now because I am comfortable and if you’re happy you are more pro active

Think I have died and gone to heaven

Well my new electric wheelchair came on Thursday, and all I can say is WOW!!!!! it is just amazing, so comfortable it’s unreal. The Chair has the following :
Padded armrests
Electrically elevating leg rests with pads
Electrical rise seat
Active support backrest (which is so comfortable its like its been moulded to me)
Tilt in Space
Electric recline backrest

It feels like I am travelling in a luxury riser recliner armchair, while I was getting the chair set up I had to test all of the controls to make sure I manage everything. when I tried the seat rise although I am used to going up in my old chair it still felt odd because it was quite a bit higher I remember saying to my colleague do you want me to give the ceiling a paint while I'm up here!!! I think if I had stayed up there too long I think I would have got altitude sickness. Once everything had been sorted and the chair was handed over I went straight out into the town to test it out, it was so nice not to feel the bumps in the pavements as this one has suspension on it, whereas the other one I felt every bump. I rang my Manager and said "I think I have died and gone to heaven, this chair is fantastic and I'm pain free instantly, I zoomed over to the office for her to have a look and she popped her head out of window while I did a 360

Cooking

Well its Chinese New Year and was leafing through OK magazine the other day and I came across some Chinese meal recipes that looked really nice and really easy to do for me that is I’m not that good a cook. Anyway I went shopping this week with Mum and we bought the Chicken and sherwoods sauces and the rice and then came home and had a go at doing Sweet and Sour Chicken, usually I either get it as a take away and or a ready meal. I'm not knocking ready meals because they serve a purpose when cooking is difficult but this time I thought I would have a go at cooking it with Mum.

Guess what it was really nice so now I think I'm getting the stir fry bug its coming to the end of my holiday and I’m back at work on Tuesday and I can't wait to see whets been happening. Anyway if you have been reading my blog recently you will have read about my new cooking venture. Let me tell you it's been great being able to cook a few things for my self ok they might only be basic but we all got to start somewhere. I feel now that my limitations are becoming less and I am physically able to do more ok it might take a little while to do it but I know feel I have better control of things and not too scared to try knowing that I cope more and that will only get better has the time goes on.So let’s see what have I been doing, well Mum and I did the Sweet and Sour Chicken as you know but this time I wanted to try it on my own. on Saturday I did some egg fried rice in the microwave and while that was going round I chopped up some bacon and fried it off, then sliced lots of mushrooms (that has always been hard for me, but I was able to do it without help but slowly) and threw them with the bacon and added some sweetcorn let them cook through. Then I poured some of the sweet and sour sauce I had saved into the pan and warmed it threw. Once the rice was done I them served it on the plate and it was really nice and better still that I had done it myself

Retail Therapy

Well what a fun few days I have had I have exchanged my physio for some retail therapy. All was going well when I finished work last Tuesday till I got home and my telly had a bright yellow screen the next thing it went all together right in the middle of Emmerdale luckily we have another telly in my room, although not as good as my main one. The next morning I went shopping off with some friends and came back with a flat screen TV and wow its like being in the pictures now so was well happy. Then over the weekend I has happily on my computer chatting to a few friends on MSN and there was a rather loud bang which made me jump and low and behold it was my computer speakers, so going to have to see what I can buy. When town to Stockton Town Centre today had some lunch out and bought some new clothes in M&S so have had a good few days off work but looking forward to going back

Conductive Education

Earlier in my story I mentioned about Conductive education as a possible reason for the major changes since I started using my frame. The more I read about it the more I am sure that I have found the reason and solution for my vast improvement and continued improvement. The way I see it is with the frame I am doing the same movement all of the time to walk and the more I do it the more automatic it has become and therefore my brain has become switched on to this consistent movement because it doesn't alter at all and there is not a different way I can do it. There fore my brain has got no choice really if I want to walk then I have to do it this way and the message has got to go down the nureopathway that is there and not divert if you see what I mean.

The link below explains it perfectly and I agree with it every step of the way because I can say that my brain has rewired itselfHow Does Conductive Education Work? It is like my brain has been a huge maze with lots of twists and turns and dead ends so to speak, but now it’s as if those twists and turns have linked up and bridged the gap and now I can follow the correct nueropathway

Good day

Well it's getting dark now nearly time for me to have some tea, think I will have a pizza for a change seem to bit a bit hungry tonight but I think it's probably because I have been walking quite a bit so far today and think its given me a bit of an appetite. Following my Physio yesterday when I got up today and looked at the weather it was fine enough for me to go to work without my chair. I suppose you could say it's like that saying "I'm having a bad hair day" but for me ''I'm having a no chair day" when I got to the indoor market the traders all said where's your chair? As they that used to seeing me come in my wheelchair. I said ah I'm giving my chair a rest today

Jack in the box

I have come to realise that I have been like a jack in the box waiting to spring open and now its as if the door to the box as been sprung. For years I suppose that I have been masked by my disability without really noticing because at the time I thought this is how it was and therefore didn't know any different because there was nothing to compare it too.Now of course it is different and it dawned on me a while ago when I was told "I'm only treating you as a person" now you might thing well yes you are a person which is correct but what they were meaning was that they saw passed the disability and lot a lot of people do other than close friends and family of course. Now it's as if I have forgot that I am disabled and therefore the real me is starting to emerge like a jack in the box I have been set free so to speak.

Mind you its taking some getting used too because I am used too proving to people that my disability doesn't stop me from doing things and it being a constant battle in the process but now it seems I am wining the battle I am climbing to the top of the ladder, instead of taking one step forward and then 10 back

Interesting Question

Here is an interesting question I have been asked by a friend of mine to which I am not sure of the answer, Their question was

"Does Cerebral Palsy get worse as you get older?"

Well, this is something I get asked a lot whether it's because I am 33 now and have lived with it and have gained experiences, or whether its a parent asking about what the future holds for there child or children I don't know.I will try and give my explanation to the question though and if anyone has any thoughts on this please add your comments. Anyway here goes since starting up my website I have read lots of information on the web and books and everything that I have read all says that it is a non progressive disorder which in layman terms means it doesn't get any worse.

This I have always wondered about because the things I did as a child like running on my crutches or swinging through my frame, I would find quite hard to do now. It also goes the other way the things I am doing now, like walking, balancing, moving limbs I would of struggled as a childI have asked the same question to Physio's and not had a definite answer and I think its because they don’t really know because we are all different. Over the years I have thought is it because we get old generally so therefore things become harder as a consequence anyway or is it the Cerebral Palsy is changing making it harder to do what we used too. More recently I am more lead to believe that it could just be down to us getting older, because my point of view my own CP has vastly improved.

So relaxed

Well its Sunday, I'm listening to the Scissor Sisters on the radio while I'm writing this. Today I am feeling really well, and muscles are so relaxed to the point now that while I'm sitting here I have a full bend on my knee "a normal" bend you could say I would say by looking at it without measuring it with one of those gadgets that Physio's use to measure it would be at 90 degrees or if not it's very close to it wish I could remember the name of those gadgets. Ah I've remembered what they call those devices it's a goniometer.

I'm chill'n out listening to radio and reading my stars. I don't usually read them I have to say but for some reason it court my eye. Scorpio You should be feeling strong as events at the start of the month have given you the confidence to know just what you can and cannot expect. I have to say with everything that has been happening it fits me exactly at the moment.

My friends at the Norman Rehabilitation & Medical Center in Poland.

Well it's the weekend, which means I can catch up with my worldwide friends on MSN, one particular friend is currently a patient at the Norman Rehabilitation & Medical Center in Poland. He also has Cerebral Palsy is undergoing specialised therapy called Spider Therapy and is doing really well. I have also been talking to his Mum Dr. Leticia M. Pacheco about the major changes I have seen in my Cerebral Palsy and today, I have sent them a copy of the video that you can see of my walking and she is going to show it to the team of Dr's and Therapist's at the centre where her son is having therapy as we speak.

A new therapy in Poland utilizes a device called the "Spider". The Norman Company, established in 1994 in Poland, provides therapy using the "Spider"; Currently the Company provides physical therapy treatment for children with cerebral palsy and other neuro-motor disorders in one therapy center. Norman Lozinski is the inventor and the owner of the Polish patent on the "Spider", and the company has been certified by Polish Health Ministry.

Feeling a bit off still

Well can't say I have got off on a good note this morning the effects of yesterday have worn off now and I’m starting to feel it. For the first time in a long time I went up to bed in my lift in my powerchair rather than on my frame, felt a bit odd but felt a bit wobbly to say the least, mind you considering the amount of injections and work done yesterday I thought I might of gone into spasm but I managed well and no sign of any spasms which I thought way to go I must be improving. Hope to be feeling a bit better as the day goes on.

Well its lunch time and I'm starting to feel a bit hungry so going to see if I can manage some dinner. Well it's 20:12 and things seem to be ok have managed to eat both my dinner and tea only soft food mind hoping by tomorrow I will be ok not looking forward to going back to the dentist in a few weeks but hey I'll get over it just felt a bit sorry for myself over the weekend, but tomorrow is a brand new day and I'm looking forward to my physio.

Carry on Doctor

I have often thought considering all the operations I have had in my life and my life experiences with disability and the medical professionals I wonder if I could have been a Doctor and if so how good I would be? You might find it hard to believe I am a big fan of medical dramas I know you might be thinking wow haven't you gone through enough with out watching it and my answer is no because some of the things that are highlighted I can relate too. I mean I was really pleased to see in Holby City they brought in a new Character Dean who has Cerebral Palsy and I thought yes congratulations to the show and the BBC for positively highlighting Cerebral Palsy

Meet my friend Disability

Disability is my best friend

We do everything together

Where ever I go disability is right behind me

Whatever I do disability is behind me every step of the way

We laugh and cry Have good days and bad

Sometimes we get frustrated and think I wish I could……..

As time passes we pick up the pieces and carry on from where we left off

As we don't know any different

We make a good team disability and I

Together we have the ability

We will face whatever comes our way

As we are best friends

Feeling a bit rough

Well it's Saturday and I'm feeling a little bit rough at the moment after having a nerve removed at the dentist so as I'm typing this my face is all numb don't know what I will be like when it starts to wear off but we will see. Anyway it's the end of my first week back at work and I have really enjoyed being back while I was on my Christmas leave I decided that one of New Years resolutions would be to see if I could manage to walk to our Town Hall when we next had a meeting in there. Now the Town Hall is not really that far from my office but in terms of me walking it could be seen as quite a distance.

So while I was having a break this week I decided to see how far I could get, on this particular day we didn't have a market on so the area was clear for me to try, off I went and apart from a few people stopping me to say that I was doing well, and it was nice to see me up and about I had actually managed to walk half way and come back without any problem and I felt really good and pleased with myself that I had got that far. Next week I'm going to see if I can walk the whole distance so watch this space and I will be reporting back. I feel this is going to be a great year for me I can feel myself getting stronger all the time to the point at the moment I feel that I have lost my disability some what, what I mean by that is I have achieved so much recently most of it

I thought I might not do and I feel that if I put my mind into gear I can do what I want to do. Since getting my new frame I am so much now flexible and mentally I am stronger and seem to be gaining more and more confidence to do more physically and because I seem to be able to do more it sort of feels more normal whatever normal is. The way I feel is maybe how non disabled people feel all the time if it is its great!!!!!!! In fact as I'm sat at my computer writing this Elton John's song I'm Still Standing

Well the effect of the dentist is starting to wear off so now I can have a nice cup of tea without needing a straw. Well so far so good haven't got that much pain at the moment which I'm pleased about. Anyway I have been doodling writing a poem while listening to the radio it's only a few lines and I have decided to call it Meet my friend Disability so here is what I have put together

Back to normal

Well today has been my first day back at work and everything was fine, glad to be back in fact yesterday I had somehow managed to work out how to walk backwards with my frame, it was a bit difficult at first but I managed it all the same, so now I can go forwards and backwards, so wont belong before I have mastered the moonwalk (only joking).A few weeks before Christmas I was assessed by Access to Work for a new Powerchair and on the day the company brought down to my office the powerchair for me to trial, It was fun testing out all the controls on it and it was like taking my driving test again. The chair that I tested was a Beatle and it has a tilt in space and backrest recline options, so I will be more comfortable at work.

Isle of Wight

Now the Isle of Wight now that was a great holiday I loved the place and would go back at anytime, I found it good for my wheelchair, although there might be a few places that would need to be checked out if you were to go yourself if you used a wheelchair. The first part of the holiday which was a new experience for me was crossing the Solent it was really calm when we went although I thought I might be sick, but I was fine, once we reached the hotel it was lovely and very accessible and the food was the best bit.

Mum and I went for walks along the front and had a good look around all the quaint shops I liked looking in the windows, some of them were hard to get in but we tried most of them, as I did not like to miss out if it was possible to go and look. After a few days, we got a wheelchair accessible cab through the town to the big leisure centre and it was as if my dreams were coming alive because the pool was massive and I was pleased to see they had a hoist so I was well happy. Mum sat in the spectator area as she doesn't like water too much and watched me enjoying myself then when I came out we went for lunch in there cafe I was really hungry after being in the pool and was bit tired but I felt great.

Then we decided that rather than getting the cab back we would slowly walk back so that we could see all the shops and things that were going on. When we got back to the hotel, we sat in the lounge and had coffee and I fell asleep for about 20 minutes.The next day there was an excursion planned to Osbourne House, home of Queen Victoria well we jumped at the chance so it was back onto the bus for a while and off we went, what a lovely place it was too. When we got there, we were not able to get fully into the grounds of the house with the coach, although to my excitement there was a horse and a sort of carriage waiting for us. All the people got off the coach and I watched them go off. I remember saying to the driver that I would struggle getting into the carriage and he replied do not worry there is a special one coming for you that is wheelchair accessible. I could not wait and sure enough there I was being wheeled up into the carriage and we were off to the house the closer we got the more amazed I was it was lovely.

UK holidays

Holidays in this country yes I have had a few, following the death of my father in 94, it was a while before I went away again but Mum and I managed various coach holidays. At first I had to have a few weeks Physio to help me so that I could get up the steps of the coach because my Mum couldn't lift me and I didn't want her too, not only would it of been too much for her but I also wanted to be able to do it on my own and I did. Our first coach holiday was with National Holidays to Newquey and I was looking forward too it, Mum was a bit nervous as to whether we would manage on our own but we did.

My family took us down to the High St so that we could pick up the coach at midnight of all times and I managed the steps no problem. I then decided that as the back seats weren't going to be taken I walked to the back and sat on the seats and then because we were travelling for 9 hours yes 9 hours I could lay down. Surprisingly I did manage to sleep quiet a bit and when I woke we were there and yes it was raining. I couldn't wait to get off so waited for everyone to leave the coach and the driver went to ask which one was our room so that he could help us. It turned out that the hotel we were staying at didn't have a lift and they had put us on the first floor and they hadn't got any ground floor rooms, even though it had all been sorted out when we booked. A great start to the holiday and I remember Mum saying to the driver right take us back home we have just done 9 hours so another 9 wont make any difference.

Anyway after soon time and ringing around we were moved to another hotel down the road and it was a really nice hotel also. I had never been to Newquey but we really enjoyed it the weather was good the whole time and we walked a lot in that week and also watch the surfers and then we went to the Sea life centre which I enjoyed.

Malta

Malta, now that was an amazing place and we were getting more adventurous as the years went by, we all went as a family and I really liked this country, we were also getting used to the organising routine and could do it with our eyes closed. I was a lot older when we went to Malta so was able to tolerate the heat better and cope with the day excursions we did. The only problem we had was when we got to the apartment it was late at night when we arrived so it wasn't till the next morning that we really saw what it was like, it was like one of those holidays from hell that you see on the TV thinking that will never happen to you.

Believe me it did the apartment was that small I couldn’t even sit in my wheelchair and when Granddad pulled his bed out in the room he head was virtually in the gas oven. When you went into the bedroom and looked out of the window it was like you were in a tunnel and all you could see was drainpipes for miles. We didn't unpack the cases even just slept where we where, but the next morning we went down to reception and complained and thankfully they moved us and boy did they move us to something bigger and better, it was like a palace compared to where we were. I could whizz up and down the corridors to all the rooms in my chair it was like doing the 100M every day and the rooms where big, so we thought mmmm think we can unpack now.

Holidays

My first experience of going abroad what when I went to the Costa del Sol, can't remember exactly how old I was about 7ish. We flew with Britannia and that in itself was very daunting as I had never been on a plane before Anyway at the time I was in my pushchair Maclaren type, I was fine as we went across the tarmac but as we cot closer to the plane I didn’t like it too noisy. We boarded the plane and I was ok in amazement with all the lights and the comings and goings of the people. We finally arrived at our destination and it was great, we had a ground floor apartment and we were close to the swimming pool so I was happy as I loved swimming although wasn't keen on the cold water at first.

I must admit I preferred the sea was much warmer. I remember going in to the sea with my parents but I wouldn’t go in unless I had my shoes on, and that was because there were urchins with lots of black spikes and didn’t want to get them in my feet. We were there for 2 whole weeks and had a great time. As if things couldn’t get better on the way home I was allowed to go and sit in the cockpit and see the captain, I have never seen so many lights and switches lol and the views clouds and more clouds. When the stewards came round with the trolley I bought a model of the plane as a memory of my first time flying and I still have the model to this day

Following my first holiday success we decided to try a new holiday destination so off to the travel agents we went to see if we could find a suitable place that was reasonably flat because by now I was using a wheelchair rather than my buggy. After a bit of time the agent came up with Majorca in the resort of Calla Millor and Calla Bona and looking at the brochure it looked perfect.The travel agent organised for me to have assistance onto the plane when we got to the airport because I couldn't walk up the steps and when we got to the airport the people were there to help us. Once we had all checked in we were taken from the departure lounge and onto boarding the plane, although I can't remember if we went by mini bus to the plane or weather we just went across the tarmac, but either way we boarded the plane before all the other passengers. It was like I was royalty being allowed to board first and the staff welcomed us onboard, then everyone else started to board and it was all systems go.

This time through rather than being scared like the first time I was excited. When we got to our destination we had assistance also off the plane and to the coach to take us to our apartment. I can remember while we were travelling on the coach my Granddad was looking out of the window and said I didn't know there was a Wimpey Bar out here. When I looked I laughed and said no it's Whimpey the Builders it’s a building site not the burger restaurant! We had a great time for 2 weeks I went swimming both in the pool that we were allowed to use in the hotel next to us and in the sea. I still preferred the sea because it was much warmer and My Dad bought me a Lilo so that I could lay on it when I got tired, although that was it now I didn't want to come out of the sea, it was like I was surfing the waves. Mind you I didn't like it when I swallowed some water.

Feeling Great

Well I finally did it my physio session went fantastic today, I have just got back, Today was the day to find out whether I was stable enough to use elbow crutches whilst at work, and my Manager came along to witness my achievement. and guess what I am stable and ready to go!!!! First of all my physio did some passive movements with me and my knee bend on my good leg is the best it has ever been, all thanks to the reciprocal walker. When we progressed to the stairs which again I coped with really well got a little stuck but then we realised that it was because I had my trainers on rather than my boots.

Therefore my ankle has not as much support as it would normally. Although I still did it, when I proceeded to go for a walk and this was the first time my manager had seen me walking with them, beg your pardon running with them. It was like I have said before like I was walking with nothing like I couldn't feel my feet on the floor (no carpet) although we all walked out of the gym together and onto the carpeted area and it felt a lot better.The next big thing I wanted to show that I was able to do is to get off the floor if I fell and although it had been a few weeks since I had done this I did manage it again but it took a few minutes for my Physio and I to work out how I had done it in the first place. I am now proved to myself and my manager that I am safe as houses or should that be crutches so much so I can now start using my crutches so as from tomorrow here's my own race for life

5 Months in

Well I am entering my 5th month with my walking frame and seem to be going from strength to strength and on the 22nd I have a review assessment with my Physio which I am looking forward too, not only to see how I have progressed but hopefully to a move to use my crutches more mainly at work if everything is ok and I am safe enough I think I am but we will wait and see. Also another thing that I am pleased about is that I am now entering my 4th month without having any extensor muscle spasms which are very painful and tiring for me. I am starting to wonder if the walking frame is helping to keep them at bay, its a bit early I think to say if they have stopped altogether but early signs as far as I can see are good.

Walking on air

Now that I am back to walking with my crutches in Physio, I have noticed for a while now that when I walk with them in the gym I don't seem to be putting any weight through them. It's like I am walking with nothing, unaided if you like. Although when I walk on the carpet it automatically feels as if I am putting weight through them have progressed back to my crutches. It is an odd feeling and something I have never really understood when this happens. One theory I do have is that carpet as a texture too it and therefore the walking movement who knows maybe someone reading this might have some thoughts

Great Physio

My Physio went great last week; I mentioned earlier that we were to work on a plan to allow me to get from the floor to a chair if I fell and this week I did it. I got from the floor to my chair for the first time in 4 years. I was lowered to the floor by the Physio's and there I was sitting on the floor, I seemed to cope reasonably well in sitting although I'm going to have to work on it. I then moved myself towards the wall where there was an aerobic step. I then proceeded to lift myself using my arms onto the step and sat there for a few minutes, while I got my breath back.We then had to work out how to get from the step onto a chair. I tried just using my arms but it was too higher lift for me. We then tried stool next to the step and I managed to lift myself easily onto it.

After having a bit of a rest, I then managed to lift myself onto the chair and before I knew it I had got myself from the floor for the first time. I then went onto do some walking practice with my crutches, which went really well and it seems to be getting a little easier every time, so it proves my confidence is growing.I then went onto one of the treatment beds and my Physio went to get a wobble cushion, which she knows I'm not keen on. Although this time instead of standing on it, I had to sit on it. Once I had my balance my Physio then went to get a ball and we started passing it to each other this was to check my balance and trunk movement.

Improvement

Well it's been a week for me without my chair and it feels great. Yesterday was another great session for me. My walking is improving all the time and to begin with I had my passive movement therapy which allows my Physio to check my range of movement and I have got to say it seemed to be better than it has been for a long time, my hip movement has vastly improved. I now have to practise an exercise with my straight leg to try and lift it off the bed. This is something I have never been able to do because my leg has always been weak and I have never real had to lift it in the correct way before. The reason being that I have always had to walk by lifting (hitching) it and swinging it through when walking so therefore twisting trunk to do it. I now can't twist because of my spine, so I have to learn how to do it with just my leg, which is hard because the muscles are weak, but I know in time I will do it. Following the treatment I then moved onto my crutches and walked through to the gym and onto the bars to do some work in standing. I know I will get the strength in time because I am determined and once I have learnt the movement and get into the habit of doing it will be easy I'm sure. It's just a case of getting the technique right.

The next thing that we will be working on is to find a way of getting from the floor back to either a chair and or standing in the event that I fall. This is something that is going to need planning and working on by both my physio and me. It is something that is going be of great help to me, not that I plan to fall but if in the event I do I know that I can get back up although we both know it's going to take some working out with my back and leg being fused. Although I know we will find a way then once we do it will be a case of practicing it

Physio getting better

Well today again had another great session was a little bit stiff today but we put it down to it being really cold today. That cold in fact we have had rain and sleety snow all day on and off. Anyway it went well all the same, firstly spend time in the bars on the wobble cushion, I really don’t like that cushion let me tell you. I think it is because the cushion is not as wide as my usual gait pattern when standing, which means that when I am standing on the cushion I have to bring my feet closer together which then in turn challenges my balance and I have to rethink my position to be able to stay on.

Them went for a walk with my crutches in the gym one end to the other and then turned towards the bed. My Physio wanted to check my range of movement and although my hip was great my knee was a bit stiff.I then tried some new exercises with a set of dumbbells and wow were they heavy at first but once I got used to the weight I was away and managed 30 chest presses and 30 wing presses, to help build my upper body strength. We then followed with some sitting balance exercises lifting my arms above head out to side etc this I found a little hard at first but once I got used to it I coped reasonably well with it. We then carried on with my walking and some exercises while in standing which I need to work on as always

A new journey

Well I thought I would report back to you all and tell you about my amazing Physio session this week. First of all the appointment was for after work and I thought this is going to be a bit hard because I wanted to walk into the hospital on my frame but also would have my wheelchair with me. I decide that I would go to work without my wheelchair and walk to the office from the car, providing the weather was ok. So that was my plan and on the day of the appointment, my worst nightmare was looming it was really bad weather when I got up wind, rain, hailstones and I thought there's no way I'm going to be able to keep my balance. Anyway by the time I got to work it was fine so I put my plan into motion and off I went to the office on my frame.

It was the first time ever I have managed to go to work without my manual chair and it felt great sort of felt free and my own boss in that I was doing it under my own steam. Work that day went well and I was getting more and more excited as the appointment came closer. When I finally got to the hospital I managed to walk into the room as I always did and this time I went straight into the gym and into the bars. I spend some time on the wobble board doing balance work while I was talking to my Physio. I explained that the video on my blog had been shown to my friends and the team at the Norman Rehab Centre in Poland "Poland wow" "I am waiting on the response from the Chartered Society of Physiotherapy website following the posting "We then went on to discuss the new possibilities and I posed the question of whether or not I could walk unaided given time "I don't see why not the skies the limit now" its something to work towards"

I then went off to the stairs, last time I tried the stairs I was quite nervous and needed a lot of help from my Physio and one of the other Physiotherapist's but this week was a different story, this week I did it on my own. Then came the hard bit an exercise to help me gain better control of my knee and believe me took a bit of thinking about and at first I thought this isn't going to work for me because in the past whenever I have had my knee in the bend position and tried moving it, it always shot out straight because of the spasticity in the muscles. This time though it worked for 2 reasons, 1 I was able to bend my knee without any problem to get it on to the step and 2nd there is no tightness there anymore. This then allowed me to gain complete control of what it was I was aiming to achieve and it felt fantastic to have that amount of control over my movement whereas once over I would need constant help to achieve specific movements in my legs, if only to resist the spasticity.

Following that exercise I then proceed back up the stairs and it was a lot easier this time to the point where I sort of forgot what I was doing for a moment and opps slide back briefly into my old way, but don't worry was only for a matter of seconds and I clicked back in.Then the fun started, I was allowed to try the crutches again, only this time it was even better than last week, in that I didn't need as much support this time, in fact my Physio was hardly holding me this time and the odd thing was I was hardly putting any weight through the crutches, it was if I didn't have hold of them. Well that was it I was off no stopping me and before I knew it I had walked out of the gym and to the treatment bay, perched on the bed for a few minutes and then set off again back to the gym. Every step becoming easier and easier as if I was floating or walking on air.

Major Improvement beyond believe

Well like I said I couldn't wait for Monday and was it worth the wait, I just about amazed everyone in the department even my Consultant. I walked into the room and my Physio could believe how good I was walking. After we had had a discussion about it she checked out passively the movement of my hip, the last time I saw her I was really really tight but not this time, in fact she was shocked at the difference it was moving freely which is something that has never happened.

So much so that she went to get one of the other Physio's who has also seen me for one session to see if they could feel the difference and wow was the remark that's amazing what's happened? I said nothing I have done nothing different other than use the new frame. Well that was it I had dumb struck them both.We all then went into the gym, and as you know from the rest of my blog I enjoy using the gym. I virtually ran to the bars it was unreal. Then the fun started, my Physio presented me with 2 walking sticks, but rather than stand them on the floor to walk with they were put out in front of me like having the bars either side of me and then I had to walk towards her. I set off a bit hard at first then had a few more goes and seemed to go ok. Then we decided ok that's it time to try the crutches, I smiled and waited, this is what I have wanted to do for a long time.

Well that was it my Physio supported me from behind and the other Physio that was with us give slight support from the side, but nevertheless we were off it was if I was walking again holding nothing at all, didn't even feel like I was putting any weight through the crutches, before I knew it I had walked to the end of the gym and turned around and was heading for the stairs.My next task I wanted to try was the stairs, you may recall reading an earlier entry about how I have been able to step up and down on a step, this time I wanted to try the actual stairs. With the help of both Physios’ I started off managed the first step that was not too bad then before I knew it I had got to the top and had turned and was coming down.

Then I took off again with the crutches across the gym to the bed.My Physio then went off in search for my Orthopaedic Surgeon, who I have know from many many years, to let him see me in action, and he was so pleased.My Physio could not believe what was happening, "I can't work it out, I don't have an answer for it yet, but I'm going to post to the Chartered Society of Physiotherapy website to see if anyone had experienced the same" "It must have something to do with the nueropathways connecting because you are walking in a more normal gait pattern it is opening up new pathways allowing the messages to get through" "It is also surprising because you have the metal rod in your spine so therefore you don't have as much rotation, if any, therefore it should have been difficult for you to walk with this type of frame, although obviously its not" I replied I bet my sitting ability on the ball will of improved, it will be interesting to see can we try it next timeI am going back next week for some treatment to help strengthen my quad muscles and improve my walking ability.