Christmas

Well.....Christmas is over for another year....this year has been fantastic!! (",) Just the fact that i'm able to walk again is amazing!! Spending time with my wonderful family has been amazing!!

We packed up our over night bags to stay at my mother in laws on boxing day....and came home yesterday!! Had a great few days but having a well needed day on the couch today while my poor husband is back at work!!

Looking forward to a great new years eve party at friends tomorrow night!! (",)

Christmas Night Out

I am so excited right now!! Its my works Christmas night out tonight....I haven't spent a lot of time with my colleagues in the last years due to being ill, so i'm really looking forward to it!! I've even had my hair dyed for it! (",)

We're off to a local cricket club for a night of good food, good company and entertainment!! (",) Just hope my dress fits......

Christmas Camp

Well, this last weekend, I went to North Wales to a little village called Lllansannan with a group of Scouts. It was a great weekend, Friday night was Christmas Eve, we decorated the place and then the kids decorated stockings to hang on their bunks for "Father Christmas" to fill with goodies!! Saturday was Christmas day and all day we spent making various things to take home! and then at 7pm we all sat down to a 3 course meal in black tie!! Sunday was boxing day and we tidied the place and got packed up for going home!! All weekend I had to wear a delightful hat, with my name on so the kids knew who I was!!

One of the things we made, was a fantastic little christmas tree made out of safety pins and beads!!

Christmas Tree

Well....I managed to put the decorations on my Christmas tree this year!! Made me so happy!! As I had to "direct" my husband with the decorations last year!! Was completely exhausted afterwards but it was well worth it!! (",) and the Christmas cards have all been posted (finally)......getting in the mood for Christmas now as we only have 2 presents left to buy (",)

Christmas

Looking forward to Christmas this year.....last year I had to sit and watch as the Christmas decorations went up and the cards were written.....but this year I have written ALL the cards (",) and i'm looking forward to helping put the tree up tomorrow after a Christmas party this evening!! Yay.....only 5 more presents to buy and we'll be sorted!! Christmas day is a busy one for us, my parents in the morning, my mother in laws for Christmas dinner and then over to my grandparents for a party Christmas night!!

Already in the Christmas spirit after a Scouts Christmas Bingo last night where I won a fantastic food hamper!! and some novelty mugs and plush characters!

12 Month Review

On 29th November 2011 I had my 12 month review at the Walton Centre.......I woke absolutely petrified (no idea why) and felt so sick.......BUT this time I walked into the Walton Centre.....it had been an awfully long time since I walked in there so it made me feel 10feet tall!!!

I was called into the room by the nurse, and I walked in with my fischer sticks and shook the hand of the Dr (not my NS but one of his Reg's)......He was smiling a lot and revealed to me that he thought the wrong patient had been called, as he wasn't expecting me to walk in to the office!!

It was all good news.....no more MRI's or surgery!!! And I don't need to return until Dec 2012!! He also said that I can apply for my driving license back again!! That would be amazing......

Bye Bye

Today I said goodbye to my zimmer frames....they have sat, unloved (and been my husbands hangers) since July!!! And I also said my goodbyes to the free standing toilet frame and my bathroom is starting to look more like that of a young woman rather than an elderly woman!!! Plus....they had to go this week as they were where we are putting our christmas tree up at the weekend (",)

Long Time

Wow, its been a long time since i've posted!! Well in that time, my wonderful husband, dad and brother raised over £1,500 for the Walton Neuroscience Fund......

In July we went to the south of France for just over 2 weeks....1 week spent in Lourdes where the weather was awful to say the least!! Rain every day!! I looked so special in my wheelchair waterproof!! (",) The second week we spent just outside Bergerac in a converted farm house/barn....it was amazing!! We had our own swimming pool....and the weather was fantastic!!

Since then, I have not used my zimmer frame!! Woo hoo!!! I started with crutches and in around September I graduated to my fischer sticks permanently!! Now at home, I only use 1 stick and occasionally walk unaided!!! That is the best part!! I am still attending physio twice a week at the local hospital, and we are working on me walking unaided!! (",)

My wonderful husband is fundraising for The Walton Neuroscience Fund

my lovely husband Paul Cunningham is fundraising for The Walton Neuroscience Fund he is completing the Liverpool-Chester-Liverpool bike ride....any support would be appreciated (",)

(",)

Physio again today.....Straight off she had me walking with 1 stick (to show one of the other physios) and we walked around the room (",)

The best part about todays session was that she had me stand up and throw a ball across a "plinth" to her...which she said was too easy...so she blew a balloon up and we played a game of mini volley"balloon" across the "plinth"....she was so happy that i was shifting my weight and even leaning back to hit the balloon if it was coming too close to me!! Great day......

Walking

Watching Wimbledon aching to be able to walk properly...let alone play tennis the way these players do.....but today was a real good day for me at physio....I managed to do my 7km in 15mins on the exercise bike and then did some posture standing work.....

The BIG news is that I walked around the physio gym with 1(!) fischer stick!! And it felt fantastic....my poor right arm didn't know what to do as it is so used to having a crutch/stick in it!!! Walking with 1 stick was my target for the end of July...and I did it today! 5/6 weeks ahead of schedule!! It means things are finally going the right way and speedy!! (",)

Pacing yourself......

Well yesterday was physio yet again.....getting up in the morning is easy.....its the moving around thats hard! I just wish I didn't feel so sick in the morning!! And having to get ready so soon after getting up is even harder!! I have to be ready from 8:30am in case the ambulance comes early....

Thankfully they usually come around 9:15am and my appointment isn't till 10:30am so I have a chance to relax and my stomach can settle....

Well thats usually the case.....yesterday I was picked up at 9:30am and we still had 2 more pick ups along the way so I didn't actually get there till just 10:30am so we got going straight away!

We did a lot of balance work yesterday, so I was stood up for a long time which was great! I did a lot of looking left and right over my shoulders which is great as it will come in really handy when I try to get my driving license back!! (",)

Roll on next tues......

Sticks!!!

Today is physio day....so today I decided to just take my fischer sticks with me to use....but whenthe ambulance staff come to get me, they told me I had to take my crutches as I was walking in from the ambulance! So that was me told!!.......

Today my physio (Sarah) decided that because it was such a lovely day, we were going to take a walk outside! The first time I will have done so with my new sticks! First she had me do 15 minutes on the exercise bike and I managed to do 7km!

When we went outside, I didn't go far, as the ground is slightly uneven.....but I managed to do it (",)

And when they ambulance staff came back for me...I walked out to the ambulance using my sticks...woo hoo!!

Where I am up to at the minute.....

Where am I now with regards my recovery?

I have been seeing a physiotherapist twice a week since november 2010.....back in november all we worked on was strengthening my leg muscles, no work on my feet at all as I was unable to stand up unaided.....

When I began to walk, I used what is called a "gutter frame" and most of my weight was put through my arms...god did my elbows hurt!.....I then progressed to a "zimmer frame" which put a little less strain on my arms.....around jan 11 I progressed onto using "crutches" when I walked.....we then concentrated on my walking and building my stamina....I use the exercise bike in the physio gym and can now do 7km in 15mins!!

That brings us up to date....I have recently been given a pair of "fischer sticks" to walk with...they are not as steady as a set of crutches so they are a little hard to use at the minute....but i'm learning!!

I also have an OT who visits me weekly...and our main aim is for me to gain independence around the home! Today we did a lot of walking with my sticks to try and help me get used to using them around here! At the minute when I am alone I use the zimmer frame as it is more steady and I can carry things while I'm using it......

At the minute, I feel a lot steadier than I have done! And feel like I might soon be able to use the crutches/sticks when I am on my own....its all down to self belief and confidence in myself!!

Me and Syringomyelia

As well as having the lovely Arnold in my head.....I also have Syringomyelia....

I have had 2 syrinx's in my spine.....the first one was high up and was nicked during my decompression and it went within a few weeks......

Unfortunately I got meningitis and it caused another syrinx to form which covered the majority of my spine.....so I had to have a syringo subarachnoid shunt inserted....

When I woke up from my surgery....I was numb/tingly down my right side....as you can imagine I was petrified and thought i'd had a stroke....I was told this was normal as there was swelling in my spine from surgery......

I was also unable to stand up as my ankles kept "rolling" to the side and I kept loosing my balance. I stayed in the Walton Centre for 3 weeks and was then transferred to a rehab ward where I stayed for over 6 weeks.....

When I got to the rehab ward I was

assessed by the physio's and they decided I needed some AFO's on my ankles to strengthen them and to help allow me to walk....

And when they did get me up on my feet to walk, they noticed that my knees snapped back....so they got me some "swedish knee braces" which stopped that from happening....

It has taken time, but the numbness has reduced and I can now feel most of my right side.....I have been in a wheelchair since that surgery and am currently learning how to walk again.....I can walk short distances using "fischer sticks" and am working hard at physio to get back to normal!!

Me and Chiari....

I thought I would add a couple of photographs me when I was in hospital after my decompression and a couple of my wonderful scars!! This first one is the wonderful pressure dressing I had on my head when I was leaking csf after they took the stitches out for the first time........24 hrs after this they re-stitched the top of the wound!

This picture is of the site where I have had 2 ETV's....the scars are alongside each other. Along wi

th having the second ETV, they also added an

Ommaya reservoir in case they ever needed to take csf again.

This picture is of the site where my vp shunt is inserted......i had this surgery 4 days after the ETV surgery.....and this hurt a lot!