>101 in 1001 version 3 Item 28… #disability #standingframe #botox #mission101

>Use the standing frame everyday for a week

…has been completed!

I wanted to do this one now because having had more botox a few days before I wanted to make the most of it.

In someways using the frame everyday was easier than expected – i had wondered if it would get too painful after a few days running. And it didn’t although on one or two days it was sore when it wouldn’t usually be. At least one of those sore days was when my mum was helping me and she can’t get the straps as tight as my dad does so that’s possibly why.

Time was a bit of an issue though, working out when I could fit it in that someone else was also free. It wasn’t a big deal but it was nice on Wednesday to just decide at 5 that I would pop to the supermarket and not have to stop and go “oh yeah, no, standing at 5.45, can’t”

Achieving this goal felt really good and mum said she thinks my standing without the frame seems better. Although that said I did lose my balance when transferring on Thursday and need a little help getting in the car on the way home last night.

♥ Emma

>The Man With The Needles

>I’m going to see my neurologist tomorrow in spasticity clinic. Hopefully this will be a joint appt with my physio (it’s meant to be but the track record on that isn’t good) to discuss whether I need more Botox. And for me to have the jabs if so. I suspect that will be the case. I also wonder if my baclofen will be upped.

I described that to a friend as “going to see the man with the needles” last week and thought that was an intriguing idea for writing.

Today is day 35 of 100 which feels like a huge number of days achieved. Especially as I almost forgot to write at all.

The Man With The Needles

“I’ve got to go and see the man with the needles tomorrow”

“you’ve got to go and see who?”

“the man with the needles.”

“oh… Ok and who is he when he’s at home?”

“I told you. He’s a man. With needles.”

“Right. That’s cleared things up.”

“I think he specialises in needles you see.”

“Does he not have a name?”

“He does”

“Which is?” You might be out there but I doubt even you call him The Man With The Needles to his face.”

“It’s… It’s… Oh god what is it?! I know this, I know I do.”

“You’ve forgotten, haven’t you?”

“No… Give me a minute, it’ll come.”

“Told you your nickname habit would get you in trouble someday.”

“Oh Jesus this is pathetic, even for me.”

“Whatcha gonna do? Walk in there and ask for The Man With The Needles, hope they know who you mean?”

“I might have to. Oh god this is going to be embarrassing.”

“it is. Bet they laugh. I would.”

“yeah, thanks for that.”

“So anyway, what does he do with these needles this specialist guy? Its gotta be something skilled to hear you talk so what is it? Tattoos, piercing, fillers, Botox?”

“He sells them”

“He sells them?”

“Yup he sells sewing needles.”

♥ Emma

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.

>Don’t Look Back In Anger

>I went for my wheelchair assessment on Wednesday.  And it went really well.  The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present.  So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run.

The thing is though I can’t help feeling a little frustrated and even angry.  I was assessed there in 2009 and I told them certain problems I am having.  Problems which the new seating I’ve just received is hoped will help with.  In 2009 however I had to really fight and justify to get what I did.  And then on the day I went for it to be fitted the therapist commented that I was tipping to one side and not sat even (which was something I had told them about before that).  The response was to get me standing and rearranged and then sit me down again.  I was told I’d need to be care to make sure I did that when I got in the chair and sent on my merry way.

The thing is though I do so many transfers in a day (I tried to count one day but couldn’t keep track) that I can’t always remember to do that.  And if I’m tired or ill it goes out the window.  Plus even within my chair I can’t keep my body in that correct position.

When I went to see my physio for the first time in July she commented on my position within my chair and said it was the cause of a lot of my back pain.  Something she asked me was why I’d not gone back to wheelchair services to tell them and ask for help.  The consultant in spasticity clinic commented on the same thing.  I gave them both the same answer – I hadn’t seen any need or point in it as it had been like that from the day I’d got it.

I’m hopeful that the problems I’m having can be resolved for the most part and I’m very pleased with recent events.  But part of me is looking at how things have been handled now and comparing them with what happened before.  And feeling a little bit angry and frustrated about it and about two years of pain etc.

There is little point to it I know and I’m trying to keep the Oasis lyric in mind and let it go.  It’s just not as easy as I’d like.  I have a friend who tells me he doesn’t let things bother him and just gets on with them.  I wish I could do that or that I could learn too.  But he can’t explain how he does it, he just does.  And actually I think sometimes you’ve gotta take the bad with the good.

Don’t look back in anger,
I heard you say
At least not today

>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…

>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.

>In Which I Am Apprehensive About An Upcoming Appointment

>I’m back at the hospital tomorrow. Only I don’t really know what for.  I rang them on Monday about various things and the receptionist referred to my appt as being at X time with the physio.  But I was under the impression that my appt was 15 minutes later than that and in the clinic with a consultant (although I believe this clinic has physios and consultants working together, I was under the impression I was going as they need me to see the consultant).

At the end of the day none of it really matter but… I was already a bit apprehensive about the appointment due to some of the stuff that’s going to be discussed (which could mean big changes for me which are never easy) and now I have what ifs going round and round in my head.  I’m told by they physio the new meds they might want to give me are sedating. Reading on the Scope website suggests one of the possible treatments is painful to administer – and I don’t know for definite but based on stuff that was said I think they might want to do it then and there if they think I’m a candidate.  And something that was discussed when I saw the physio is a treatment I swore I’d never have but am now thinking I’ll try if they suggest it.

And then there’s the fact that the transport people despite having picked me up two weeks ago from here had a question about where I should be picked up from. Here.  Or my parents old house which I moved out of 10, nearly 11 years ago, they moved out of 7 or 8 years ago and at which I never had hospital transport.  And which isn’t my most recent previous address by a long shot.  And how did they get the answer to that question? By ringing my parents and speaking to my Dad.  So much for confidentiality.

So basically I’ve just turned into a big ball of stress and it’s not fun.  Nor is depression which makes these things so much worse.

I do know it’ll all turn out all right in the end but… I wish I could skip to the end like fast forwarding through a DVD!

>Meds and Such Like

>I think it’s safe to say that at the very least I need to go and chat to my GP about my depression.  I’m much better than I was when my antidepressant was changed to Sertraline but I’m still struggling a lot at times.  That said I don’t necessarily think I need it tweaking again but I’m not sure and I need to keep an eye on these things.

And when I went to the physio she was talking about the possibility of changing my muscle relaxants.  Either an increase of my baclofen or taking something else (which said could be instead of or in addition to the baclofen).  I’m back there on Thursday to chat these things through.  That was quite interesting though because I’d not heard of one of the mentioned meds being used for spasticity and I know of loads of people who take it.  And she also queried whether I was taking anti-depressants for depression or spasticity as apparently some anti-depressants can be used for spasiticity as they relax you.  I’d never heard that before but it’s an idea I’m quite interested in.  If I don’t come back without a drastic increase in my baclofen or an extra prescription I’ll be very surprised.

The physio has also referred me back to wheelchair services as she says I either need this chair adapting or a new one as it’s totally unsuitable and she thinks part of the cause of my pain.  Wheelchair Services however are saying I have to go back on the waiting list which has an average wait of 18 weeks.

She also advised me to go back to social services and asked to be reassessed for care needs, specifically for help with socks and shoes.  I’ve not done that yet.

A few other things were mentioned as possibilities so I came back with lots to think about which is part of the reason I’ve been so quiet on this blog.

Oh and she told me I should be leaving my wheelchair in a different position (equivalent to where it would be for a lateral/slide board transfer) when I’m standing and transferring.  Getting the hang of that is not proving easy at the moment!