Quickly adding this onto the blog, as Something Important is happening tomorrow which I haven't got round to posting about.
As briefly mentioned, I have been going to a rehabilitation unit for Physio and Occupational Therapy, which has been interesting, fun, tiring, but all the people there are lovely and has been going well (albeit a couple of dramas, but anywhoo). I have attempted pottery, with one successful piece (if slightly childish looking), a complete disaster of a teapot (very structurally unsound), and I am now attempting another pot.
The Big News is that I will get my Phenol Nerve Block injections tomorrow, and then on the 19th I will have my Baclofen day trial - woah! I have just realised that a few posts ago I never said what the last minute Dr appointment was about. Well it was to get the above sorted out, as my consultant could see my patience was wearing thin.
To put it succinctly as possible, the Phenol nerve block will reduce the tightness in two of the worst offending muscles groups in my legs, and also act as a stop gap whilst waiting to get the Baclofen Pump. Try and imagine a bass beat being pumped under your skin and into your nerves and that is kind of how it feels. Freaky but cool. The anesthetic nerve trial proved successful (giggling is apparently an unusual reaction to this), so the go ahead was given for the full on nerve block.
The nerve block should last up to 12 months, and will take away some of the supporting tone in my legs, so this will be interesting to see how it turns out.
Monday 5 September 2011
Calvert Trust
This was going to be a long rambling post, but my diary is so packed right now I don't really have time or energy for posts, so doing this in between phone calls at work!
So, where to begin...The weekend at the Calvert Trust in the Lake District was brilliant, even better than I expected, and I did things I thought I would not be able to do!
We arrived on the friday, and after a mild panic that the bus had gone without us, picked up by one of the Trust's vans. Arriving at the centre, the bedroom was amzing, with a view looking over the lake and fields (which had sheep running all over them, so cute!)
I could go on forever about the weekend, so I will try to be as succinct as possible. The Friday evening was spent on a ramble up the hill behind the centre, looking over the lake, followed by a quick dip in the Hydrotherapy pool, which had a sauna as well, complete with floaty equipment. True to their word, dinner was a 3 course meal of proper, hearty food.
The Saturday morning was spent doing all things climbing, from abseiling backwards down a steep slope in a wheelchair, the Leap Of Faith - jumping/staggering onto a trapeze bar and swinging from a great height across the climbing hall, so my piece de resistance - the climbing wall itself. A few years ago I had attempted one had failed miserably, but with the wall at a slight incline, and with a starting boost and encouragement, I got all the way to the top! The abseil down was actually more terrifying, but yay, I did it!
As a result of this success I have gone a bit adrenaline crazy and started challenging myself in other areas (but more on that in other posts).
The rest of the day was spent Horse Riding and Archery, where a) I did not fall of the horse, and b) actually managed to hit the target!
The day ended with another huge dinner, a nice dip in the hydro pool, and spending time confusing the sheep opposite the centre.
Sunday morning I faced my enemy...water. For today was the canoeing activity. Having had some not encouraging experience with water based activities, I was cynical I would enjoy the session. However, with not one, but TWO life jackets on (one to keep me afloat, the other to stop me tipping over onto my face and causing panicked flailing of limbs), and placed on what was promised the most untippable canoe, I was ready.
And I actually enjoyed it and we rowed over to the other end of the lake for a nice cuppa.
After this most of the others started to head off home, but a few of use used the afternoon to go on a wheel/walk into Keswick and for a drink, a nice way to round off the weekend.
So, all in all, it was a brilliant weekend, and I now have mad ideas of what else I want to do! I will definately be going back, dragging with me as many people as possible. Pictures WILL be promised eventually, but I do not have access to them on my work computer. Plus I have plans for them.
Ok, this still was quite a long post, so just imagine how long it would have been if I had gone into every tiny detail. Like sitting through your Aunt's holiday photo collection in painstaking detail.
So, where to begin...The weekend at the Calvert Trust in the Lake District was brilliant, even better than I expected, and I did things I thought I would not be able to do!
We arrived on the friday, and after a mild panic that the bus had gone without us, picked up by one of the Trust's vans. Arriving at the centre, the bedroom was amzing, with a view looking over the lake and fields (which had sheep running all over them, so cute!)
I could go on forever about the weekend, so I will try to be as succinct as possible. The Friday evening was spent on a ramble up the hill behind the centre, looking over the lake, followed by a quick dip in the Hydrotherapy pool, which had a sauna as well, complete with floaty equipment. True to their word, dinner was a 3 course meal of proper, hearty food.
The Saturday morning was spent doing all things climbing, from abseiling backwards down a steep slope in a wheelchair, the Leap Of Faith - jumping/staggering onto a trapeze bar and swinging from a great height across the climbing hall, so my piece de resistance - the climbing wall itself. A few years ago I had attempted one had failed miserably, but with the wall at a slight incline, and with a starting boost and encouragement, I got all the way to the top! The abseil down was actually more terrifying, but yay, I did it!
As a result of this success I have gone a bit adrenaline crazy and started challenging myself in other areas (but more on that in other posts).
The rest of the day was spent Horse Riding and Archery, where a) I did not fall of the horse, and b) actually managed to hit the target!
The day ended with another huge dinner, a nice dip in the hydro pool, and spending time confusing the sheep opposite the centre.
Sunday morning I faced my enemy...water. For today was the canoeing activity. Having had some not encouraging experience with water based activities, I was cynical I would enjoy the session. However, with not one, but TWO life jackets on (one to keep me afloat, the other to stop me tipping over onto my face and causing panicked flailing of limbs), and placed on what was promised the most untippable canoe, I was ready.
And I actually enjoyed it and we rowed over to the other end of the lake for a nice cuppa.
After this most of the others started to head off home, but a few of use used the afternoon to go on a wheel/walk into Keswick and for a drink, a nice way to round off the weekend.
So, all in all, it was a brilliant weekend, and I now have mad ideas of what else I want to do! I will definately be going back, dragging with me as many people as possible. Pictures WILL be promised eventually, but I do not have access to them on my work computer. Plus I have plans for them.
Ok, this still was quite a long post, so just imagine how long it would have been if I had gone into every tiny detail. Like sitting through your Aunt's holiday photo collection in painstaking detail.
Friday 12 August 2011
Way Overdue
It has been over a month since I last posted, where I left it hanging with me off to the Lake District. The reason for this is that no sooner than I had returned everything that could happen at once, kicked off.
1) I started an online course in Python Programming.
2) The job offer I had been waiting for rung me to say I had got the job(woo!, also argh!).
3) Physiotherapy and Occupational Therapy started again. A few weeks into this and I was referred to the day rehab unit two days a week.
4) I was meant to start working on a University module assignment retake.
5) A new family arrival in the form of Lulu (Guinea Pig shaped!).
So you can see, things have been a bit hectic lately! Because there is a lot to update on, I'm going to split it up into separate blog posts for readability, so apologies for mass-postings.
1) I started an online course in Python Programming.
2) The job offer I had been waiting for rung me to say I had got the job(woo!, also argh!).
3) Physiotherapy and Occupational Therapy started again. A few weeks into this and I was referred to the day rehab unit two days a week.
4) I was meant to start working on a University module assignment retake.
5) A new family arrival in the form of Lulu (Guinea Pig shaped!).
So you can see, things have been a bit hectic lately! Because there is a lot to update on, I'm going to split it up into separate blog posts for readability, so apologies for mass-postings.
Friday 1 July 2011
Off to the Lake District!
I am so excited right now! As I type this I am on the train heading up to the Lake District, to the Calvert Trust Centre near Keswick.I would have written about this sooner but things have been a little manic lately!
For those of you who don't know, the Calvert Trust is an adventure activity holiday centre for disabled people and their family, friends, et al. The lovely folks there, through Zurich are funding my place for the weekend, so yay!
Just got one more train connection and then we will arrive in Penrith, where we'll be picked up from the station.
*exciteeeed*
Thursday 23 June 2011
That old Adage
Lately it has been a case of waiting for one bus to arrive and then several arriving at once! Where do I start...well a good place would be the baclofen pump. Wondering what the heck was going on with my referal, I rang up the neurosurgeon's secretary to see where I was in the waiting list. To cut a long story (and several phone calls) short, my referal got mysteriously lost in the post and the secretary had no idea who I was.
...riiiight.
More phone calls and a day later she rings me to say that I am now on the waiting list but it is unlikely I will get seen by September.
I HAVE BEEN WAITING SINCE FEBRUARY.
So today I rang my baclofen assessment unit and explained the situation to them and they thought it was pretty ridiculous. While I was on the phone one of the baclofen therapy nurses told the person on the other end that they had something to discuss with me and could I come over as soon as a space was available?Turns out that space is tomorrow, so here I am at my parents the night before wondering what it could possibly be about.
In addition to this I have had visits from Occupational Health, Social Services (which confirmed what I knew, my bathroom is deeply un-cripple friendly), and physiotherapy appointments, plus my wheelchair quotation finally arriving AND that I can get funding to go to the Calvert Trust...phew!
Saturday 18 June 2011
Insert Title Here
Last week I went out with friends to a pub, which turned out to be so disability unfriendly it was funny. You know when you encounter situations is so bad you end up laughing at it? This was one of those.
Having noted that the toilets were up a set of stairs, and that the platform lift was the home of high chairs, we asked the staff if they could move them off the lift so I could use it. This was the point when I found out that the reason the high chairs had overtaken it - the lift hadn't worked in years - brilliant! Apparently the head office were aware of this but hadn't done anything about it despite being told a number of times.
To the stairs! With the help of Ben and a drunk (but lovely!) customer I got up the stairs, clutching the banister and Ben lugging the chair up the stairs, and made my way to the loo.
Ah, the loo. On first glance seemingly harmless but on actual use an accident waiting to happen. As I was leaning on the drop down bar, the following happened:
Yes, that is the drop down bar on the floor, which I believe is the incorrect place for it. Luckily I was holding onto another bar as well, which DIDN'T fall out of the wall, otherwise it could have been a painful face-plant to the floor.
The almighty crash was followed by Ben's voice floating through the door:
"Sanchia? Are you all right?!"
"I'm fiiiine...I may have broken something..."
Fleeing the scene of chaos, I returned to my table whilst he went to explain that their accessible toilet may be a bit, erm, broken.
The staff themselves were lovely though and gave us the head office's number.
I didn't get a free pudding though, grrr.
Having noted that the toilets were up a set of stairs, and that the platform lift was the home of high chairs, we asked the staff if they could move them off the lift so I could use it. This was the point when I found out that the reason the high chairs had overtaken it - the lift hadn't worked in years - brilliant! Apparently the head office were aware of this but hadn't done anything about it despite being told a number of times.
To the stairs! With the help of Ben and a drunk (but lovely!) customer I got up the stairs, clutching the banister and Ben lugging the chair up the stairs, and made my way to the loo.
Ah, the loo. On first glance seemingly harmless but on actual use an accident waiting to happen. As I was leaning on the drop down bar, the following happened:
Yes, that is the drop down bar on the floor, which I believe is the incorrect place for it. Luckily I was holding onto another bar as well, which DIDN'T fall out of the wall, otherwise it could have been a painful face-plant to the floor.
The almighty crash was followed by Ben's voice floating through the door:
"Sanchia? Are you all right?!"
"I'm fiiiine...I may have broken something..."
Fleeing the scene of chaos, I returned to my table whilst he went to explain that their accessible toilet may be a bit, erm, broken.
The staff themselves were lovely though and gave us the head office's number.
I didn't get a free pudding though, grrr.
Saturday 11 June 2011
Ouch! Messageboard Update
The BBC has decided to grace us with an update about the closure of the Ouch! board, and try and allay our fears:
More absolute tosh
I highly doubt they did "consider" how it would affect us, as no one was asked as far as I'm aware! Also, the way the blog talks down to us about social networking sites not being the big bad wolf users fear is, to be blunt, a load of crap.
What they obviously have not taken into account is mental health issues - what the BBC see as not a big issue - just find a new place! - could be for some people, very destabilising. To put it figuratively, imagine the Ouch! board is a big security blanket, one that makes us feel secure and safe in the knowledge that we can post bluntly and openly about what is up with us. Using Facebook for this exposes your personal identity to anybody else using the group, or anyone who cares to find out. Additionally, you can not make accounts under a false name - at risk of being banned.
The BBC are essentially taking that security blanket, ripping it to shreds, and throwing us a manky, threadbare rag.
More absolute tosh
...We did consider the impact on users before making the final decision, though these types of editorial decisions are not subject to the public sector equality duty.
Safety and privacy have proven to be big talking topics over the last couple of years in social media circles and many empowering improvements have been made as a result. If you've been scared away in the past, it might be worth taking a new look.
I highly doubt they did "consider" how it would affect us, as no one was asked as far as I'm aware! Also, the way the blog talks down to us about social networking sites not being the big bad wolf users fear is, to be blunt, a load of crap.
What they obviously have not taken into account is mental health issues - what the BBC see as not a big issue - just find a new place! - could be for some people, very destabilising. To put it figuratively, imagine the Ouch! board is a big security blanket, one that makes us feel secure and safe in the knowledge that we can post bluntly and openly about what is up with us. Using Facebook for this exposes your personal identity to anybody else using the group, or anyone who cares to find out. Additionally, you can not make accounts under a false name - at risk of being banned.
The BBC are essentially taking that security blanket, ripping it to shreds, and throwing us a manky, threadbare rag.
Wednesday 8 June 2011
BBC closing Ouch! Messageboard
So, the BBC has come to the decision to close the Ouch! messageboard. For those of you who know what this is, you are probably really pissed off right now, and for those who don't know - it is the only section of the BBC where peopleof all disabilities can come together and talk about life, the universe and everything. For others it is the only communication they get with the outside world, and a place where people can talk anonymously without being judged.
Yet the BBC feel that the concept of such a messageboard is antiquated and not worth their resources:
What a load of pish
Hmmm, funny, I don't remember anyone being consulted about this. Messageboards and social networking sites are completely different things with totally different ways of communicating, lacking the anonymity that people get from a board. Plus many Ouch! users find Facebook an intimidating place and are uncomfortable with the idea of posting on such a site.
But, fear not, fellow Ouch! user, we can we have a month to adjust to this change and "pop along" to this thing called Facebook and acquaint ourselves with it, as told in possibly the most patronising part of the blog post:
I don't know if this is just me, but it almost feels like we are children they are chiding along gently, like a parent persuading their kid "don't worry about moving, I'm sure you'll stay in touch!"
Pfft. This move will only break up a well established community and alienate long time users.
So, if you care about the Ouch! board, or simply want to help us stop the closure of it, please go to the petition here and sign your support.
Thank you.
Yet the BBC feel that the concept of such a messageboard is antiquated and not worth their resources:
What a load of pish
The web and BBC Online have changed a lot over the last decade and we believe it's now time to close the Ouch! messageboard. You regularly tell us that our current service doesn't always deliver the kind of interaction and relationships you want and, indeed, the BBC realises there are now many more effective ways to involve its audience. Social networking is immensely enabling and has outclassed what we can provide in terms of specialisms, privacy and personal connections for this community. Plus it brings great control: you are able to block unwanted users and manage your personal interactions more immediately and effectively.
Ian Hunter, Managing editor of BBC Online, recently wrote a blog entry about the BBC's approach to messageboards and social media explaining how we intend to move forward. Ouch! will continue to be a place where you can feedback on disability matters alongside the content on our blog, via Facebook and Twitter.
Hmmm, funny, I don't remember anyone being consulted about this. Messageboards and social networking sites are completely different things with totally different ways of communicating, lacking the anonymity that people get from a board. Plus many Ouch! users find Facebook an intimidating place and are uncomfortable with the idea of posting on such a site.
But, fear not, fellow Ouch! user, we can we have a month to adjust to this change and "pop along" to this thing called Facebook and acquaint ourselves with it, as told in possibly the most patronising part of the blog post:
The messageboard will close on Wednesday 6 July. That gives us almost a month to help you find each other again. In the final week, we will see how this process has gone and help out if need be.
We have our own Ouch! Facebook page and we encourage you to pop along there now and 'like' us; a quick and easy way of staying in touch with your online friends. When the board has closed, you can continue to comment on our blog with your messageboard login.
I don't know if this is just me, but it almost feels like we are children they are chiding along gently, like a parent persuading their kid "don't worry about moving, I'm sure you'll stay in touch!"
Pfft. This move will only break up a well established community and alienate long time users.
So, if you care about the Ouch! board, or simply want to help us stop the closure of it, please go to the petition here and sign your support.
Thank you.
Sunday 15 May 2011
A shout-out to
This post is to say thank you to Catherine from comeone-letsroll who gave me this award:
She also listed me as one of her favourite blogs at the moment, which is really sweet as I am still relatively new to this whole blogging shenanigans. You should check out her blog too, as not only is it pretty looking, but very funny too. She also seems to like cooking and all things nom nommy, so thumbs up to that too!
She also listed me as one of her favourite blogs at the moment, which is really sweet as I am still relatively new to this whole blogging shenanigans. You should check out her blog too, as not only is it pretty looking, but very funny too. She also seems to like cooking and all things nom nommy, so thumbs up to that too!
Thursday 5 May 2011
Shopping - one for the guys
After the last post and its unpleasantries, onto less loo-orientated matters.
This post if mostly for the guys, or specifically for those who live in a small town like mine and so therefore stores may not have upgraded to be fully accessible.
Today I went shopping for my Dad's birthday present, and I think I can safely say it was even more stressful than shopping for myself. Quite a few of the stores had the menswear on the first floor, the problem being that all the smaller stores of major retailers did not have lifts up to these floors. The shop assistants were helpful, in that they went up for me and bought down items for me to see, but that is not the point.
What the hell do you guys do?? Yes they can bring the clothes down for you, but what about trying them on? Hell, I wasn't even trying them on, and after a while if I went into a store where the menswear was upstairs I just went straight back out. Having to wait and rely on people to bring me the clothes, and not being able to browse in my own time really bugged me, so Gawd knows what it must be like for you guys who have to do it all the time!
This post if mostly for the guys, or specifically for those who live in a small town like mine and so therefore stores may not have upgraded to be fully accessible.
Today I went shopping for my Dad's birthday present, and I think I can safely say it was even more stressful than shopping for myself. Quite a few of the stores had the menswear on the first floor, the problem being that all the smaller stores of major retailers did not have lifts up to these floors. The shop assistants were helpful, in that they went up for me and bought down items for me to see, but that is not the point.
What the hell do you guys do?? Yes they can bring the clothes down for you, but what about trying them on? Hell, I wasn't even trying them on, and after a while if I went into a store where the menswear was upstairs I just went straight back out. Having to wait and rely on people to bring me the clothes, and not being able to browse in my own time really bugged me, so Gawd knows what it must be like for you guys who have to do it all the time!
Wednesday 4 May 2011
Disabled Loos
Ah, Disabled loos, it really is like a lucky dip with them - I always enter them with some trepidation. What really bugs me is that there isn't separate female and male disabled toilets - in my perfect world there would be female, male and Unisex. I don't see why abled people should get a choice and not me!
Not to tarnish all guys with the same brush, but men can, shall we say...miss, on occasion (not that women aren't gross, I have seen some horrific sights in female toilets, but I'm deliberately being pernickety here). I would just like some choice in the matter is all!
Anyways, today was one of those days when I wished there was more than one user-friendly facilities available. On approaching the toilet, horrific bodily sounds were heard emanating from inside (Another thing that bugs me about them - we just get one door, that's it. Other people get a door, then another door. You really feel quite exposed inside those things!), and I knew only bad things could come from this.
I had to wait quite a while, and in that time I heard the loo being flushed a few times. Oh dear. Now I'm sure we've all been in an awkward situation public toilet wise, but I would hope people would leave it in a state that they would wish to find it!
After a further wait, the facilities finally became free. Edging veeeeeeeery slowly in, I then promptly backed out speedily! Oh God, the smell. The smell. I peeked in again, approaching the dreaded toilet. Even from a distance I could see that it was blocked.
Nooooooooooooooooooooo.
Not to tarnish all guys with the same brush, but men can, shall we say...miss, on occasion (not that women aren't gross, I have seen some horrific sights in female toilets, but I'm deliberately being pernickety here). I would just like some choice in the matter is all!
Anyways, today was one of those days when I wished there was more than one user-friendly facilities available. On approaching the toilet, horrific bodily sounds were heard emanating from inside (Another thing that bugs me about them - we just get one door, that's it. Other people get a door, then another door. You really feel quite exposed inside those things!), and I knew only bad things could come from this.
I had to wait quite a while, and in that time I heard the loo being flushed a few times. Oh dear. Now I'm sure we've all been in an awkward situation public toilet wise, but I would hope people would leave it in a state that they would wish to find it!
After a further wait, the facilities finally became free. Edging veeeeeeeery slowly in, I then promptly backed out speedily! Oh God, the smell. The smell. I peeked in again, approaching the dreaded toilet. Even from a distance I could see that it was blocked.
Nooooooooooooooooooooo.
Thursday 28 April 2011
Success!
Today was my re-assessment at wheelchair services, a day I had both been dreading and looking forward to. Dreading at the prospect of being rejected and starting the process all over again, and excited because maybe I would finally be getting some help towards the wheelchair of my dreams!
To be honest, I'm surprised I was coherent at all during the assessment, as I was so sleep deprived from being up all night imagining all kinds of scenarios, that I was basically a zombie. Not that I'm not normally like a zombie, but this time I had the mental capacity as well as the staggering coordination of one.
Fuelled by tea, we arrive at the hospital, prepared to do battle! After psyching myself up for ages, the assessment turned out to be a pretty straight forward affair - this time a wheelchair technician was present, and I was much better at being confident about what I needed and what I didn't want. After a discussion of the different options available and my hip width being measured, I tried out their Invacare XLT.
Considered lighter than my current chair, I still felt it wasn't up to the standard of the Quickie Helium and didn't suit my needs, so I told them I would most likely want to go with the voucher scheme. Next came the "BINGO!" moment, when the technician said that would be fine, and that to ring them when I had found a suitable chair and had a prescription for me, and that they would pay some of the costs.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!
THE QUICKIE IS WITHIN MY REACH!
I don't think I actually absorbed this good news much at the time, but after regular top ups of caffeine, it is sinking in, haha. Good news indeed!
The next step will be to get in contact with the Quickie guy and settle the final finishing touches of the chair, and sort out how to pay the rest of the costs off. :D
To be honest, I'm surprised I was coherent at all during the assessment, as I was so sleep deprived from being up all night imagining all kinds of scenarios, that I was basically a zombie. Not that I'm not normally like a zombie, but this time I had the mental capacity as well as the staggering coordination of one.
Fuelled by tea, we arrive at the hospital, prepared to do battle! After psyching myself up for ages, the assessment turned out to be a pretty straight forward affair - this time a wheelchair technician was present, and I was much better at being confident about what I needed and what I didn't want. After a discussion of the different options available and my hip width being measured, I tried out their Invacare XLT.
Considered lighter than my current chair, I still felt it wasn't up to the standard of the Quickie Helium and didn't suit my needs, so I told them I would most likely want to go with the voucher scheme. Next came the "BINGO!" moment, when the technician said that would be fine, and that to ring them when I had found a suitable chair and had a prescription for me, and that they would pay some of the costs.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!
THE QUICKIE IS WITHIN MY REACH!
I don't think I actually absorbed this good news much at the time, but after regular top ups of caffeine, it is sinking in, haha. Good news indeed!
The next step will be to get in contact with the Quickie guy and settle the final finishing touches of the chair, and sort out how to pay the rest of the costs off. :D
Friday 25 March 2011
Like a Chicken
I am so, so soooooooo sore today. Yesterday I went to the Rehab Centre (NOT the drug kind!) to discuss the next stage of the Baclofen Pump. Before the appointment I didn't have a clue what it would be about, as the letter wasn't very specific, so when I turned up and it was actually the pre-trial assessment I was pleased and surprised at the same time.
And then mortified.
You see, a lot of cripple consultant appointments involve inspections of the legs and the muscles, which means that they kind of need to get passed inconvenient things like Jean legs.
I had not shaved my legs.
You'd think by now I would be prepared for this kind of thing, and yeah, sometimes I have no shame and don't care, but this was not one of those days. "Oh no, I haven't shaved my legs!" says I, to which the Physiotherapist present replies "Don't worry, neither have I!"
Much comforted, the pre-assessment began. Basically, so during the trail they can tell how much the Baclofen is having effect, they need something to compare it to, so they have to measure muscle tone and spasticity, and how flexible my limbs are.
This means stretching my legs in a wide variety of lovely ways. Think like when you get a chicken and pull it's legs apart to stuff it. Except the chicken is me, and the stuffer three people holding my legs down.
Anyways, after this lovely experience they went through what the aims of the Baclofen therapy, with three aims. As well as this I am being put forward for electric shock treatment, where they sent electric shocks through your limbs in the hopes of lifting the foot up more. I last had thus done years ago when I was 16, and apparently it has improved since then!
To round up this post, the next thing I should hear is when the date of the actual trial is, which depends when the Neurosurgeon is free, so when I know I will post it here.
And then mortified.
You see, a lot of cripple consultant appointments involve inspections of the legs and the muscles, which means that they kind of need to get passed inconvenient things like Jean legs.
I had not shaved my legs.
You'd think by now I would be prepared for this kind of thing, and yeah, sometimes I have no shame and don't care, but this was not one of those days. "Oh no, I haven't shaved my legs!" says I, to which the Physiotherapist present replies "Don't worry, neither have I!"
Much comforted, the pre-assessment began. Basically, so during the trail they can tell how much the Baclofen is having effect, they need something to compare it to, so they have to measure muscle tone and spasticity, and how flexible my limbs are.
This means stretching my legs in a wide variety of lovely ways. Think like when you get a chicken and pull it's legs apart to stuff it. Except the chicken is me, and the stuffer three people holding my legs down.
Anyways, after this lovely experience they went through what the aims of the Baclofen therapy, with three aims. As well as this I am being put forward for electric shock treatment, where they sent electric shocks through your limbs in the hopes of lifting the foot up more. I last had thus done years ago when I was 16, and apparently it has improved since then!
To round up this post, the next thing I should hear is when the date of the actual trial is, which depends when the Neurosurgeon is free, so when I know I will post it here.
Wednesday 23 March 2011
The Holy Grail of Wheelchairs
This is my Holy Grail of wheelchairs:
The Quickie Helium. Look at it, just look at it. What a sexy beast of a chair. Oh. My. God.
And it is finally, FINALLY within my grasp! Yes, that's right, I'm taking on the powers that be - Wheelchair Services.
Last time I saw them, they point blank refused to assess me as a) I was a part time walker, and b) I had my own (albeit shoddy) chair. At the time my mum quizzed them asking what if I had come in on crutches? Oh, we can't assess you if you can walk. But then again, you already have a chair, and we'd just give you that one you've got so we can't assess you anyway.
What was I meant to do? Come in on a stretcher?!
But this time I am armed and ready, oh yes. You see, it is fairly obvious to anyone that I need a decent chair - my current one is like a tank, and is wrecking my arms from using it everyday, and weighs about 20kg. My Neurologist has written a letter for me explaining that I DO need a chair, and to top it off, I have been fitted for a Quickie Helium by the nice and knowledgeable guy at my local Wheelchair supplier.
I got to try the Quickie out and it is a DREAM. It only weighs 6kg, I can actually lift it with one arm, and I am pretty speedy on it! I almost cried when the demo session was over.
So, come April, I will have my Neurologist's letter and my wheelchair prescription, and I will not take No for an answer!
The Quickie Helium. Look at it, just look at it. What a sexy beast of a chair. Oh. My. God.
And it is finally, FINALLY within my grasp! Yes, that's right, I'm taking on the powers that be - Wheelchair Services.
Last time I saw them, they point blank refused to assess me as a) I was a part time walker, and b) I had my own (albeit shoddy) chair. At the time my mum quizzed them asking what if I had come in on crutches? Oh, we can't assess you if you can walk. But then again, you already have a chair, and we'd just give you that one you've got so we can't assess you anyway.
What was I meant to do? Come in on a stretcher?!
But this time I am armed and ready, oh yes. You see, it is fairly obvious to anyone that I need a decent chair - my current one is like a tank, and is wrecking my arms from using it everyday, and weighs about 20kg. My Neurologist has written a letter for me explaining that I DO need a chair, and to top it off, I have been fitted for a Quickie Helium by the nice and knowledgeable guy at my local Wheelchair supplier.
I got to try the Quickie out and it is a DREAM. It only weighs 6kg, I can actually lift it with one arm, and I am pretty speedy on it! I almost cried when the demo session was over.
So, come April, I will have my Neurologist's letter and my wheelchair prescription, and I will not take No for an answer!
The Neurosurgeon Appointment
Right, it's been a bit hectic lately, so I finally have time to update on what has been going on!
Last month in February I went to see the Neurosurgeon who would be doing the procedure. She was very nice and straightforward, and had an example of the pump for me to look at and hold, to get an idea of what potentially could be going inside me!
So here it is:
It was a lot bigger than I thought it would be, about the size of a hockey disc, and weighing one to two pounds. That did not put me off though, I guess I will just have to make sure I don't get too skinny or it will stick out a mile!
The Neurosurgeon explained to me that because I was what they called a "walker" (even though that is only something like 5% of the time) I would probably feel the weight when I tottered around, but when in my wheelchair it wouldn't be an issue.
The main issue is getting the right dosage of Baclofen so that I still maintain some tone in my legs (the thing that helps me stand up), if at all possible, which is why I will need a week in hospital having the drug pumped into my spinal fluid via a tube, before getting the pump put in.
The thing that got me down a bit, and surprised me, was the potential waiting time between the testing stage and (if successful) actual implantation could be up to a year, as they have to apply for funding to do the procedure, as it an expensive one.
Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.
Well, at least it is getting done and the ball is moving. She suggested going back onto oral baclofen in the meantime, and when I pointed out that I would drunk 99% of the time, she said after a couple of months that could wear off.
TWO MONTHS??
I can't be basically drunk and out of my skull for two months! Though I'm sure some people would love that, I have Uni work, three Guinea Gigs, and some semblance of a social life to hold on to.
So, that's all for now!
Last month in February I went to see the Neurosurgeon who would be doing the procedure. She was very nice and straightforward, and had an example of the pump for me to look at and hold, to get an idea of what potentially could be going inside me!
So here it is:
It was a lot bigger than I thought it would be, about the size of a hockey disc, and weighing one to two pounds. That did not put me off though, I guess I will just have to make sure I don't get too skinny or it will stick out a mile!
The Neurosurgeon explained to me that because I was what they called a "walker" (even though that is only something like 5% of the time) I would probably feel the weight when I tottered around, but when in my wheelchair it wouldn't be an issue.
The main issue is getting the right dosage of Baclofen so that I still maintain some tone in my legs (the thing that helps me stand up), if at all possible, which is why I will need a week in hospital having the drug pumped into my spinal fluid via a tube, before getting the pump put in.
The thing that got me down a bit, and surprised me, was the potential waiting time between the testing stage and (if successful) actual implantation could be up to a year, as they have to apply for funding to do the procedure, as it an expensive one.
Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.
Well, at least it is getting done and the ball is moving. She suggested going back onto oral baclofen in the meantime, and when I pointed out that I would drunk 99% of the time, she said after a couple of months that could wear off.
TWO MONTHS??
I can't be basically drunk and out of my skull for two months! Though I'm sure some people would love that, I have Uni work, three Guinea Gigs, and some semblance of a social life to hold on to.
So, that's all for now!
Wednesday 9 February 2011
The Guardian's Live Q&A with Maria Miller
So, there has just been a live Q&A on the Guardian's website about the DLA reform. Not many questions were answered, but here are her responses:
"I'm sure many of you know a lot about DLA but for those of you who might be newer to it -
It was first launched in 1992 and has never been substantially updated since.
There have been enormous strides made in legislation which support disabled people, headway made in people's attitudes towards disabled people and many new and different ways that the State supports disabled people, for instance through things like aids and adaptations which now account for more than £200 million. All of this needs to be better taken into account in the way this important disability benefit works.
The new Personal Independence Payment gives us the opportunity to bring DLA into the 21st century."
"@diana13 and others have asked what first hand experience I have of disability issues - my mother is a disabled person and lives with me and I therefore have some insight into the very real challenges that both disabled people and their carers face on a day to day basis.
I have spent time both meeting disabled people and their organisations to make sure I hear directly from them the priorities that they feel the government needs to tackle."
"@MindYerBeak and others have asked whether pensioners will be reassessed. That's a straightforward one - at the moment the changes we are looking at apply to people of working age (16-64) so pensioners aren't affected - the reforms won't affect Attendance Allowance."
"Re Atos - lots of you are asking about whether Atos will be involved in any new assessment. We haven't made any decisions on who will carry out the assessment. We want the best people for the job and we are looking forward to people's responses through the consultation on how best to carry out the new assessment process."
"@Rhydian - I'll pick directly up on your post requesting more evidence for the need to reform. The Government's research on DLA is generally commissioned from external academic and independent researchers and this is what was used as evidence in the consultation.
DLA was first brought into being in 1992 and since that time has not been substantially reformed.
There is no inbuilt system of review, leaving people with short term conditions treated the same as people with long term conditions.
The assessment process is unwieldy, requiring self assessment - with 50% of people receiving DLA never being required to submit any independent evidence of their need.
Significant numbers of people have had no contact with the Department since their awards were made almost 20 years ago and we have no way of knowing if their need of support has increased or not.
All of this points to a benefit that is in need of updating to make it more transparent, consistent and fair."
"Lots of people have raised the issue of support for care home residents. Let's be clear, the Government is 100% committed to supporting disabled people, whether they live in care homes or family homes - more than £40 billion a year is spent to promote disabled people's independence through care and the benefits system. But we can't have money being used to fund the same thing twice.
Local authorities and care homes have clear obligations to provide transport for care home residents and care home residents also receive DLA mobility to cover their extra transport costs. Our proposal is to remove any overlap to make sure that care home residents still get the transport they need and that public money is used most effectively. What's clear to me is that even now the system isn't really working for many people.
A recent report called Don't Limit Mobility said that care home provision of transport is patchy and there is even evidence of people being charged for what should be freely available. Lots in the report was anecdotal evidence of how the current system doesn't work well for care home residents who do have very different mobility needs. What we are doing is looking at how we can make sure the system works better in the future, not only removing any overlap of spending but also ensuring that there is clarity for the future."
"@cellarman - you asked about people with fluctuating conditions who may be able to meet the conditions as fit to work one day but not on another. Just to be clear, Personal Independence Payment will be paid to people in and out of work as DLA is now so we won't be assessing people on the basis of whether they can work or not.
Assessing fluctuating conditions accurately and fairly is critical and we will be looking at responses to the consultation for people's thoughts on this. Just a reminder, the consultation is open until Monday Feb 14th."
"My time slot from the Guardian is running out fast. Can I thank everybody who has taken the time to contribute - every posting has been read and will feed in to our consultation. Hope I can do this again soon."
"@ LynnHarrison
You and others are concerned about disabled people being portrayed as dishonest and even fraudulent.
I share your concern. Cases of fraud bring the benefit system into disrepute and this is bad for everyone. People with legitimate claims need a benefit system that has robust assessment - treating people fairly and putting integrity back into the support that's available"
Quite a long post there, but I hope that helps people who don't want to trawl through all the comments. I have highlighted bits that I thought might be of interest to people, but if anyone wants anything else highlighting, just let me know.
"I'm sure many of you know a lot about DLA but for those of you who might be newer to it -
It was first launched in 1992 and has never been substantially updated since.
There have been enormous strides made in legislation which support disabled people, headway made in people's attitudes towards disabled people and many new and different ways that the State supports disabled people, for instance through things like aids and adaptations which now account for more than £200 million. All of this needs to be better taken into account in the way this important disability benefit works.
The new Personal Independence Payment gives us the opportunity to bring DLA into the 21st century."
"@diana13 and others have asked what first hand experience I have of disability issues - my mother is a disabled person and lives with me and I therefore have some insight into the very real challenges that both disabled people and their carers face on a day to day basis.
I have spent time both meeting disabled people and their organisations to make sure I hear directly from them the priorities that they feel the government needs to tackle."
"@MindYerBeak and others have asked whether pensioners will be reassessed. That's a straightforward one - at the moment the changes we are looking at apply to people of working age (16-64) so pensioners aren't affected - the reforms won't affect Attendance Allowance."
"Re Atos - lots of you are asking about whether Atos will be involved in any new assessment. We haven't made any decisions on who will carry out the assessment. We want the best people for the job and we are looking forward to people's responses through the consultation on how best to carry out the new assessment process."
"@Rhydian - I'll pick directly up on your post requesting more evidence for the need to reform. The Government's research on DLA is generally commissioned from external academic and independent researchers and this is what was used as evidence in the consultation.
DLA was first brought into being in 1992 and since that time has not been substantially reformed.
There is no inbuilt system of review, leaving people with short term conditions treated the same as people with long term conditions.
The assessment process is unwieldy, requiring self assessment - with 50% of people receiving DLA never being required to submit any independent evidence of their need.
Significant numbers of people have had no contact with the Department since their awards were made almost 20 years ago and we have no way of knowing if their need of support has increased or not.
All of this points to a benefit that is in need of updating to make it more transparent, consistent and fair."
"Lots of people have raised the issue of support for care home residents. Let's be clear, the Government is 100% committed to supporting disabled people, whether they live in care homes or family homes - more than £40 billion a year is spent to promote disabled people's independence through care and the benefits system. But we can't have money being used to fund the same thing twice.
Local authorities and care homes have clear obligations to provide transport for care home residents and care home residents also receive DLA mobility to cover their extra transport costs. Our proposal is to remove any overlap to make sure that care home residents still get the transport they need and that public money is used most effectively. What's clear to me is that even now the system isn't really working for many people.
A recent report called Don't Limit Mobility said that care home provision of transport is patchy and there is even evidence of people being charged for what should be freely available. Lots in the report was anecdotal evidence of how the current system doesn't work well for care home residents who do have very different mobility needs. What we are doing is looking at how we can make sure the system works better in the future, not only removing any overlap of spending but also ensuring that there is clarity for the future."
"@cellarman - you asked about people with fluctuating conditions who may be able to meet the conditions as fit to work one day but not on another. Just to be clear, Personal Independence Payment will be paid to people in and out of work as DLA is now so we won't be assessing people on the basis of whether they can work or not.
Assessing fluctuating conditions accurately and fairly is critical and we will be looking at responses to the consultation for people's thoughts on this. Just a reminder, the consultation is open until Monday Feb 14th."
"My time slot from the Guardian is running out fast. Can I thank everybody who has taken the time to contribute - every posting has been read and will feed in to our consultation. Hope I can do this again soon."
"@ LynnHarrison
You and others are concerned about disabled people being portrayed as dishonest and even fraudulent.
I share your concern. Cases of fraud bring the benefit system into disrepute and this is bad for everyone. People with legitimate claims need a benefit system that has robust assessment - treating people fairly and putting integrity back into the support that's available"
Quite a long post there, but I hope that helps people who don't want to trawl through all the comments. I have highlighted bits that I thought might be of interest to people, but if anyone wants anything else highlighting, just let me know.
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