• 101 in 1001,  2012,  botox,  physio,  standing frame,  Uncategorized

    >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…

  • 100 days of writing,  2012,  baclofen,  botox,  hospital,  neurology,  physio,  spasticity,  Uncategorized

    >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…

  • action3,  Dad,  hospital,  jay2,  jay3,  laterals,  OT,  physio,  shoes,  spasticity,  spine align,  Uncategorized,  wheelchair

    >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 –…

  • action3,  frustrations,  jay2,  jay3,  lyrics,  OT,  pain,  physio,  spasticity,  Uncategorized,  wheelchair

    >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…

  • 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…

  • achievements,  botox,  physio,  serial casting,  standing frame,  Uncategorized,  you know you've got CP

    >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…

  • CP related,  physio,  serial casting,  treatment,  Uncategorized

    >(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…

  • CP related,  physio,  serial casting,  Uncategorized,  you know you've got CP

    >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.…

  • CP related,  disability,  meds,  physio,  treatment,  Uncategorized

    >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…

  • antidepressants,  baclofen,  care,  meds,  pain,  physio,  Sertraline,  transfers,  Uncategorized,  wheelchair

    >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…