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

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.

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.