I’m going to resurrect my Reading Down My TBR Pile posts this year and post an update each Monday about what I’ve been reading. And linking those to the It’s Monday! What Are You Reading? linky over at The Book Date But that’s going to have to start next Monday because I’ve yet to finish a book this year. And I’m not sure what I read last week, it was mostly stuff online. I think I finished Coming Home for Christmas by Patricia Scanlan early last week. It was OK but didn’t blow me away. I enjoyed other books of hers much more. I do wonder if Christmas books aren’t…
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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…
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>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…
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>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…
- botox, disability, friends, frustrations, language, Paralympics, physio, serial casting, spasticity, Uncategorized
>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…
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>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…
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>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…
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>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…