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 (",)

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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!