A year later

OK so it’s not quite a year later but it’s as close to a year later as I’ll get.

Last July I had my first lot of botox and that was then followed up with serial casting in August. The TL;DR version for anyone who doesn’t want to follow that link to all my entries on it is as follows. Serial casting was not a particularly fun experience but I saw a lot of improvement. Unfortunately not as much improvement as to get my feet into a “normal” position but the amount (approx 20 degrees improvement in range and position improvement) is agreed by everyone to be huge.

Yesterday I had my four monthly appt in spasticity clinic.  It was a good appointment but has had me, my sister, both of my parents and one of my besties going “oh, I didn’t expect that”

It was the quickest I’ve ever been in and out of that hospital.  Of course a big part of that is the fact I didn’t go on hospital transport but my dad took me.  Spasiticity clinic is a physio, a nurse and a neurologist.  And my neurologist always runs really late.  It doesn’t both me because although I know people who can’t stand the guy I’ve always felt like I get all the time I need, I’m not rushed and I can’t ask a stupid question.  Plus he’s very open to hearing how it is for me. Anyway I had I think the second or third appt of the clinic but I was the first patient to turn up (I was ten mins early). I wheeled in and she said she’d call the drs down. I ended up going in a few minutes early and we were at the car at 10.05 having made a loo stop on the way out (my appt was 9.40)

My physio from last year is on maternity leave I think and I don’t think I’d met the one that was there before. She had a good look at my legs/feet in my chair and then the Prof came in and asked if they could examine me on the bed. He had I think two observers with him, not sure who they were.

The really good news is that I have maintained all of the improvements I got from the casting.  That’s huge. Really huge. I think it’s unexpected too, usually a there would be some deteriorate if not complete deterioration expected (I think). Keep up with the standing frame and increase the time if possible. Work on a goal of an hour. My feet haven’t started turning in again like I thought they might have so no new contracture.

But it is now official that I have both spasticity and contractures. That’s just basically confirmation of something we’ve all suspected for a long time.  I am being referred for surgical assessment to see if it’s time for a tendon release proceedure on each of my ankles.

Growing up I didn’t see a neurologist, I was assessed once or twice a year by an orthopaedic surgeon.  I saw a really lovely man who always greeted me with “hello sunshine” and made me feel special. Most of my friends with CP saw a different consultant but I was born with a hip problem (dislocation) and was seeing my consultant about that before my CP diagnosis so I stuck with him.

The surgeon I’m being referred to? Is the one that my friends always went to.  I’ve heard very good things about him. So that’s good.  But I am a little sad that my guy has retired and I can’t go see him

The aim of a release would be to help maintain my independence and improve my standing.  The issue is that I’ve had it done twice as a child (that was amusing, I left my dad in the waiting room but when the prof started asking about previous surgeries I suggested getting him in as he’d know better then me. So he did but then basically didn’t ask Dad any questions) and no one there seemed sure if a third go is possible. I need a definite answer abou that before any decision because with CP contractures will always develop. And I’m not sure I want to use my last shot at release surgery a 30 when I’m managing well and at 35 or 40 or later I might need it more. But then if I do decline to have it now am I running the risk that at 40 I need it but things have deteriorated to such a point it can’t be done?

Lots to think about.  And a few month wait to clinic I think.

In the meantime I had six more lovely botox injections and I’ll wait to see what the surgeon says. That will be a joint clinic with my neuro. Depending on when it comes through I may skip my next spasticity clinic appt.  Basically if it’s in a couple of months or say six months then I’ll go back in four months as planned for more jabs. But if I see the surgeon around the time I’d be due jabs they’ll combine giving me them with it even if it’s not in spasticity clinic.

>Interesting Times

>Lately I feel like I live in Interesting Times as in the Chinese saying.  It’s certainly been an interesting week.

Monday my powerchair broke down with no warning. In the middle of Sainsbury’s car park. In the drizzle. Although luckily it wasn’t raining as such at that point in time. I tried to talk a Sainsbury’s employee through putting my chair into freewheel but he couldn’t do it (whether my instructions weren’t right/clear enough or he didn’t force it hard enough I don’t know) so my plan of getting a taxi back here fell through.

I called my parents house on the off chance someone was there not expecting there to be. But my sister had had an accident and been in minor injuries with my mum for a few hours. They’d just got back. I also managed to get hold of a local wheelchair engineer and he came for my chair and mum came for me.  It did make me smile to see his van turn in one direction towards me and mum’s car turn in the opposite direction towards me at the same time.  Talk about the arrival of the cavalry!

My chair has since been fixed, costing much less than I expected and came home yesterday so that’s good. I don’t think there’s much left that could need replacing that hasn’t already been done at least once.  It reminds me of that episode of Only Fools and Horses where Trigger gets rewarded for having the same broom for some huge number of years but then adds “I’ve had 6 new heads and 7 new handles but still it’s not bad for the same broom” or some such. Only I don’t think my chair is quite that bad…

Thursday I felt lousy on and off all day. To such an extent that the ambulance crew who took me to my appt in spasticity clinic presented me with a just in case sick bowl (I had told them I didn’t feel properly sick but they insisted) and tissues. Late night, early morning and lots of stress me thinks. My alarm didn’t go off. On the plus side having said they were taking another patient to the JR first they then took me to OCE first instead. Win.

I was just about an hour early and wanted to go over to the main building in search of proper food.  The receptionist said “no please stay in the building he’s running to time and you might go in early”. And I then went in just over an hour LATE. (which he didn’t even realise. his nurse apologised to me and he went “oh are we very late?”) I chatted a bit to another lady in the waiting room and her carer (that started because I asked about the over the knee stripy socks she was wearing – v.cool) and did a load of writing on my iPad.

The consultant said that some patients only need one dose of botox and then casting. I’ve had a very good response and my ankles are improved. He went on to say with some patients he thinks definitely repeat the botox and others he thinks definitely not. And me being me I fall slap bang in the middle.  We had some discussion about that.

End result being that he wants me to go back “in a couple of weeks” to see him and my physio in a joint appt as she knows me better. If I feel I’m getting worse in the meantime I can ring his secretary and should be able to go back within a week or so for more jabs. I don’t have a date to go back but when I said “are we talking before or after Christmas?” he said almost definitely before.

Oh and one of his comments was about it being a bit of a schlep from where I live to his clinic every 3 – 4 months if they keep giving me the jabs. This amused me because it really isn’t but going back in two or so weeks really is. Not least because this clinic is meant to be a joint clinic with the physios – alternating between my physio and a specific colleague of hers.  I did see the colleague floating around but not to speak to and she wasn’t in the room during my appt.

I have however been using the term schlep ever since. I find I like it.

Good news to end on:

I have most of the paralympic tickets I applied for but not all. And (this is the best bit!) I have tickets to both the opening and closing ceremonies!!!

One of my besties who just lives about ten mins drive from me also has tickets to the closing ceremonies. Also a wheelchair space. And also in the same category as I have. Hows that for a coincidence?!

>You Know You Have CP When…

>…You aren’t sure that getting discharged from physio is the good thing everyone else is making it out to be.

I went back to the hospital on Wednesday and saw two physios and an orthotist. They were very pleased with the progress I’ve made with the standing frame (and so am I). I’ve been able to maintain the improved range of motion in my ankles and my feet are still looking what I consider to be wrong – they used to turn in a lot and I can’t remember a time when they didn’t. Now they are straighter (I believe my talus – one of the bones in the foot – is now in neutral position rather than rotated inwards).

I do keep looking at my feet and thinking they don’t look right. But the fact is they are right for the first time in years or maybe even ever. A friend of mine popped round on Thursday and kept commenting how good my feet and legs look now (my spasticity is better controlled and I can keep my knees bent for a few minutes now if I concentrate rather than automatically spasming and locking out straight) and saying she couldn’t stop staring at them. I was joking with her that her secret is out and that I now know she’s a leg woman and attracted to me for my legs.

Anyway, back to the physio – my posture has improved which I believe should slowly help with pain. And my legs appear stronger meaning my standing transfers are better. I still have to use my arms to do it and always will not least because I have rubbish standing balance. BUT I am now using my legs more to push myself up in conjunction with pulling with my arms rather than just grabbing hold of something and pulling myself up – which had resulted in me pulling a grab rail off the wall at least twice.

The orthotist said that I would get no benefit from splints or another type of orthotics that I’m not getting from using the standing frame. I was very pleased by that! I’m actually quite enjoying the standing.

So I’ve been discharged from physio but will see the consultant before Christmas and there should be a physio in that clinic. I am a little apprehensive about being discharged but figure it’ll be ok. The interesting thing about it is that people keep commenting “well done” or “congratulations” when I share my progress and I think it’s a weird thing to say – because I can’t see that anything big or amazing has come from this long, hard process. Then again as I sit here writing this I’m beginning to realise just what it is I’ve achieved – with the help of various physios and all the other people who have supported me. It might be me that’s benefitting and my legs which show these small improvements but I couldn’t have done it alone.

>(lack of) Progress Report

>I returned to the hospital last Thursday having had a couple of days without the casts.  It was very nice to be able to get up and get dressed when I wanted rather than when someone could help.  And to wear trackies and go sailing and have showers!  But equally I was very frustrated to not be in the casts because it almost felt like giving up without giving it the best possible shot.

My physio got me back in a standing frame for a few minutes when I got there and she measured the angles of my ankles which were the same as they’d been on the Monday.  That was huge because apparently she would have expected some deterioration.

 I was and still am a bit confused by the measurements she got as for my whole life my left side has been substantially worse than my right but this time the left was a lot better that my right.  That could be something to do with the way I stand and compensating.  I didn’t really understand.  I stand in a really screwy way which she tried to demonstrate to me so I could see the difference between that and how I should be standing but she couldn’t do it as she kept losing her balance when she tried.

They put me back in casts again, basically at my request.  She thinks it’s unlikely they’ll be any further improvement although when I got upset and started crying that got changed to “well you never know”.

The angle of my ankles in the casts is the same as it was standing which apparently is no improvement but I remembered after I left that when I first saw her at the beginning of July my measurements were substantially different lying down to standing – and the casts were done whilst lying. So maybe there is a very slim possibility it’s better.  Confused.

I’m going to borrow a standing frame from the hospital to have at home.  When I go back in a couple of days to have the casts removed my Dad is going to take me so we can bring it back and he can learn how to get me in it.  I’ve also been told that they won’t do any more casts.

I’ve been referred to orthotics regardless in the hope they can do something to help me out.  Night AFOs were mentioned (deep joy), special inserts for my shoes and wedges are also possibilities I believe.

And that’s the latest installment of Emma’s Adventures in Serial Casting…

>Ask a stupid question…

>Get a stupid answer!

For various reasons I went out yesterday without the fugly clown shoe like cast shoes on top of my casts


Fugly cast shoes. The ones I have now are too big for my feet (the ones I had that fit went missing when left at the hospital for the few days I was out of plaster earlier this week) hence the clown shoe description.

I went to the supermarket. I was wearing my red skirt which perfectly matches my red casts. Because clearly, matching your clothes and casts is important (unless I want to wear my favourite skirt which clashes but I love, that is…)


And whilst I was in there a woman I didn’t know stopped me and asked what I’d done to need the casts.

I said, nothing, there’s nothing wrong with them.

And she made it clear that was a totally unacceptable answer.

I just went “it’s a fashion statement”

And she gave me a dirty look. But she didn’t get a chance to say anything other than to call bye to my back as I moved away.

I am more than happy to talk to people about being disabled and answer questions. I always have been. But only if they are asked for legitimate reasons.

My life is not public property. Being disabled, using a chair and having my legs in casts don’t people the right to ask questions simply to satisfy their own nosy tendencies. But when I refuse to answer, people are put out.

It did feel good to put her in her place and especially to be flippant whilst doing so.

>Missing – one blog entry

>
If found please return to Emma at A Writer in A Wheelchair.

I wrote an update about the serial casting on Wednesday night but for some reason it didn’t post. I can see it in my online drafts in blogpress but it won’t let me post it. So it’ll have to wait until I go on the PC and can go on blogger proper.

Am I the only one who finds it surprising that Blogger haven’t released an app of their own or at least made the website iPad friendly?

Things have changed and moved on yet again since I wrote it and surprised me yet again. This treatment process with the Botox and the casting has been very different to what I expected. It’s also been harder and occasionally easier too. I was chatting to a friend earlier and described it as one of the situations where you know that in the long run it should be worth it and you want to do it. But in the short term you wonder why you thought it would be a good idea and have fleeting moments of wishing you hadn’t started it.

I’m not saying I regret doing this, I’m very glad I pursued it and think it’s good. The amount involved and all the ifs and buts and maybes are a little overwhelming at times, that’s all. That and I don’t think I properly considered the emotional impact before this began. My mental health issues being what they are however I’m not sure I could have done so had it even occurred to me. I’ve never seemed to have definitive things which make me down or anxious etc, it’s all a bit random. Which for me is probably a good thing.

>Adventures in Serial Casting

>This blog entry should have published last Wednesday, the 10th but didn’t for some unknown reason

So, the last time I updated about this was the morning before I went back to have the first lot of casts removed.

Those had been on for three days and when they were removed I had a small increase in the range of motion in my ankles – approximately five degrees which was described by the physio as small but I think actually is quite good.

I also had a substantially improved foot position, especially in my left foot as although both of my feet had turned in my left was the worst.  Ever since then I keep catching site of that foot and thinking it looks wrong and really weird to see it in a normal position.  I can’t remember the last time it was like that.  You know you’ve got CP when…

I was put back into a second set of casts which were removed four days later (as they were on over the weekend).  I got on better with those although I did have a blind panic moment late on the Saturday night when my foot started hurting and I convinced myself that my toes were going a funny colour.  My parents came round and we decided it was OK to wait and see until the morning.  I could wiggle my toes as much as I always could, they weren’t cold and when my mum pinched them they went white and immediately back to normal when she let go.  I still don’t know what caused the pain (my physio had a really good look when she took them off but couldn’t spot anything) but it had gone Sunday morning.  I’d been caught in the drizzle earlier that day and wonder if a touch of the dye on the cast shoes had ran onto my toes but I guess I’ll never know.

When the casts were removed it was obvious I’d had no further improvement which was disheartening.  The physios (it takes at least two to do casting) got me up in a standing frame for a bit and then doing some walking.

There was some discussion about finding out if I’m a candidate for another tendon release on my ankle but I made it very clear that even if surgically it’s an option for me (having had it done twice as a child there is a question mark over that I believe), it’s not really one I’m prepared to consider.  If it comes to the point they think it needs more than mentioning in passing I’ll go and discuss it but it would take a lot of convincing to get me to agree.

I asked if it was worth putting more casts on just to give it another shot and the answer to that was basically they didn’t have time then as my appt time was nearly up.  I was told that if my feet had deteriorated by the time I went back later in the week they would recast me to ensure I maintained the improvement I’d had and asked to do as much standing and walking as possible before I returned.

I did absolutely loads of standing.  Not a level I can maintain regularly but I definitely gave it my best shot.

>The Crip and The Casts

>I tried yesterday to post a video blog from my shiny but for some reason it won’t upload.  I will endeavour to cover the main points and do so quickly as I have hospital transport coming and was told to be ready at 9.15 (8.44 now).

Casts went on Monday.  that day was a huge struggle and ended in a crying, shaking, sobbing, puking meltdown that necessitated my calling my Mum round at 11:30 pm and unfortunately getting her out of bed in the process.  Basically I couldn’t get out of bed without help, I got my skirt all tangled up, couldn’t get it up or down and it was catching in my wheels, it was too hot and the casts were a little uncomfortable due to the stretch and when I’d tried to transfer into my powerchair earlier that day hadn’t managed it meaning I thought I’d be housebound.  Mum got me sorted out and left a little after midnight I think.  She came back round at 6am to get me up for the loo again and then I went back to bed (definitely needed the rest!) and Dad came in at 9 on his way to work and helped me up.

We’ve managed to solve the bed problem by putting the mattress from my old bed on top of the one on my new bed which means I have a ridiculously high bed but I can get out of it without help!  The loo I was also finding a little low which is strange as both it and my bed are an easy height usually.  I keep a toilet surround (with bars and a raised seat) at my parents house and my sister dropped that in for me.  Tuesday and yesterday I was able to transfer into the powerchair with help and as I’ve gotten used to the casts have been finding that easier and can just manage it solo now.

When I left the hospital on Monday I was given paperwork with instructions which included going to A&E if I had any problems out of hours (and a letter to take with me).  I’m sure that if I could have found someone to take me I’d have gone Monday night, at the very least I was adamant that I was going back to the hospital first thing Tuesday and kept saying I couldn’t do it.  But it didn’t come to it and it’s been a struggle at times but it’s been OK.

I saw my GP about something else yesterday (for which she gave me some lovely Erythromycin meaning I am once again on two antibiotics) and she told me that the hospital hadn’t even told her they’d seen me let alone that I’ve been multiple times and what they were doing to me.  Don’t think she was best impressed.  I wasn’t surprised she didn’t know all of it as my consultant rang me Monday afternoon to say he’d not made a note of what we’d agreed and what plan had been made for going forward and could I tell him? But i was surprised she hadn’t even had a “we saw Emma for physio and are sending her back to wheelchair services and to the consultant” type letter as I was first seen practically a month ago!

Apparently my casts may come off and stay off today.  This would be if the treatment was complete (unlikely I think based on what was said on Monday) or it was considered to have failed.  I think I knew deep down that it could fail but I’d not really thought about it and considered that.

Yesterday I didn’t need as much help, just my Dad to come in and help me get dressed as I got one leg in my knickers and couldn’t maneuver the other… which was fine as the possibility was planned for and I got up and got washed so I’d be getting dressed at a time he could be around.

It might be early but I’m kinda sleepy – I have some cast protectors but just in case they didn’t work I didn’t try them until this morning.  Mum came and helped me shower but in order to be at work in time had to come at 6.30am.

>A Few Days On

>Not quite a week since I had the botox (tomorrow will be a week) and I think my ankles may be a little looser.  This is a very good thing.  It’s about the right timescale too as the physio said it takes 7 – 10 days to kick in.  I’m not 100% sure that’s the case, I need to get a second opinion from my dad, but it’s looking good.

The first lot of casts go on on Monday.  I’m feeling a lot calmer about that now but it’s still going to be very different and possibly difficult.  I’m just hopeful I get a good result out of this.  As I’ve said to a lot of people this is going to be a long process. It shouldn’t, however, be painful which is another very good thing.

Once I’ve been on Monday I really ought to start sorting out a social services referral as when I’ve got my splints I’ll need carers to help me get them on everyday.  I want to find out what timescale is involved first (e.g. immediately after the casts come off or if there will be a delay before I see an orthotist, if indeed, I need to see an orthotist but I can’t imagine I don’t) and also if these will be day or night splints. The prospect of carers again stresses me out.

I think the problem is that Oxfordshire Social Services provision being what it is I believe it highly unlikely I’ll get anything other than 15 minutes a day to help with splints and all the other things I’ve been struggling with and just about managing and even not doing since my funding was cut in 2007 will be left.  My previous experience of agency carers is that there are a lot of niggles involved and the level of funding I’m likely to get would mean a direct payment is impossible because no one is going to work 15 mins a day.

>Beginning Treatment

>On Thursday I had my first ever injections of botox.  I received six injections of a very small dose of botox into my calves.  The hope is this will improve the position of my feet and thus my standing and transfers.  I was incredibly nervous about it (and still am) as for a lot of reasons I’ve always said I’d never have botox.  Saying yes was very scary! As a child I had a similar treatment (alcohol blocks) which left me weak and I lost function and needed calipers.

Unfortunately both the consultant and my physio feel that whilst I would benefit from botox in my quads I shouldn’t be given it as it was very likely I’d be more comfortable in my chair but also lose my ability to stand, without which I’ll be totally screwed.

My legs bled a bit after the jabs and needed plasters on for a few hours.  It stung when it went in, more on my left leg than my right but that may well be because the left leg was done second.  The rest of the day they were pretty sore but that disappeared with a dose of codeine (2x 15mg) and two paracetamol.  My legs did have a weird warm feeling for the rest of the day.  Sort of like when it’s winter and you’ve been out in the cold then come home and wrap up in big socks and under a blanket and are all toasty. However my legs weren’t warm to the touch.  Friday they were achy but the “warmth” had gone. Saturday and today they’ve been fine.

I spoke with the physio Friday morning.  The next step is that I will return to the hospital twice next week.  On the first visit I will have both feet put in non-removeable plaster casts.  As the botox takes 7 – 10 days to kick in it should be working by then and allow my feet to be manipulated into a slightly better position which is a gentle stretch.  They will be casted in that position and the cast will remain on until I return later in the week.  When I go back they’ll take the cast off when they hope my leg will stay in the improved position and that they can manipulate my foot into an even better position and then put new casts on.  The plan is to keep doing this until my feet/ankles are in a normal position – 90 degrees.  I’ve been told this shouldn’t take longer than a month but could take less.  From memory I think when I saw the physio at the beginning of the month she said my right ankle is 20 degrees out and my left, 30.  I know when I’m standing this improves and they are both 10 degrees out.

This process is known as serial casting

Once the casts come off I will get some form of splints to wear – specifically I will have AFOs (ankle-foot orthotics) but on the phone I forgot to ask if they will be night or day ones. I’m not sure what my preference is.  Getting splints will mean that I almost definitely have to have care input to get them on and off.

Oh and the other thing that was agreed was if I have no response to the botox in 2 weeks I’m to increase my baclofen slowly to 60mg (currently taking 40)

It’s going to be a long road, I just hope it’s worth it.