So here we are with details of my morning appointment from last Tuesday.
Not quite as sensational as my feat of standing in the afternoon but still worth telling you all about.
If you remember - how could you possibly forget - last Tuesday, I was at the National Hospital for Neurology and Neurosurgery (NHNN), at Queens Square in London.
In the morning I had a follow up appointment with Claire in the Occupational Therapy Department.
For a long time the tendons in my hands have been contracting and this has meant that the fingers have been becoming more and more bent. I am very right-handed, and do everything with my right hand. This means that the fingers on this hand have more range of movement than those of my left hand, which is now very bent.
In the past I have been given thermo-plactic splints to try to help straighten my fingers but have found these to be difficult to use as they are so rigid, unccomfortable and they tend to cause soreness on my fingers where they rub on the plastic.
During my last appointment, Claire had given me a splint for my left hand. This is made of a softer outer material, with a thermo-plastic insert. I have found this quite comfortable to use, without it causing any discomfort or soreness. However following a chat with Claire, she made a small modification to the shape of the thermo-plastic, which will hopefully mean I can use it longer without my hand becoming "tired".
She had ordered another splint for my right hand, and after trying this, it felt comfortable and I now have to try them both at home to see how I get on.
After this we discussed "Fatigue Management". I have noticed that recently I have been becoming more fatigued than normal, even on days when I'm not doing much, and thought it was worth seeing what help Claire could give.
NHNN produce various documents relating to a number of conditions and on issues arrising from those conditions. Claire had a copy of the "Fatigue Management for Progressive Neurological Conditions" and "Fatigue Management for people with Multiple Sclerosis" documents. We went through the first of these documents and then Claire took some pages from the second document to combine the two, into a more detailed document.
The things that this document discusses and suggests are pretty much common sense things which most of us, probably, already do but its useful to see them all put down together. The document gives an idea of a co-ordinated approach to managing your time, energry and tasks, in such a way as to limit the effects of fatigue. There are simple charts you can use to monitor daily activity and your fatigue levels at points during the day, so that you can complete these and hopefully identify patterns, and the adjust how you are doing things and measure any changes. This can done down to an hour by hour level, or just with the day broken down into morning, lunch, afternoon, etc.
Sadly due to my novice blogging skills I don't know how to attach this document to the blog, or even if you can. I will ask my guru, Frank, if it is possible, but if you do want a copy of the document, I have scanned a copy as a pdf file, into my computer and will happily share this with you.
Having gone through the fatigue document, my appointment time was over. I went and sat out in Queens Square and enjoyed the sunshine and ate a sandwich.
And then after lunch I had my amazing physio appointment, which you can read about in "A Truly Sensational Tuesday (Part 2)" which I posted yesterday.
As I thought Frank has solved the problem of getting this document so that you can see it. Unfortunately its too bigger file to post on facebook but the link below should allow you access the "Fatigue Management" document. Hurrah for Frank!!
https://www.dropbox.com/home#!/home
Monday 29 April 2013
Sunday 28 April 2013
A Truly Sensational Tuesday (Part 2)
Well I've kept you in suspense long enough about Tuesday, so I hope that this lives up to your expectations. (I did actually write this yesterday but then forgot to "publish" it, and lost all I'd written - D'oh!)
Before I go any further just a couple of points. Firstly, I will also post this on various facebook pages, seperate from my blog, as I feel that its important that as many people as possible read this. So if you see this twice, its not because I'm attention seeking, its just that I'd like as many people as possible to see this and hopefully share, in what was a wonderful event for me, but also hopefully take some hope and inspiration from it.
Secondly, you've probably seen the title of this blog and are wondering why you haven't seen "Part 1". Well quite simply, I haven't written it yet but I'll explain this during the blog.
On Tuesday last week I had two appointments at the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London. For those of you who haven't been there, on the video below there are brief clips at the beginning and end which show the outside of the hospital and Queens Square.
My morning appointment was with Occupational Therapy, and I will write about this seperately, as "Part 1". See, there is method to my madness.
In the afternoon I had an appointment with Becca in the Physiotherapy Department.
This appointment had been offered during a previous appointment at the IBM Natural History Research Study Clinic in December 2012, when I meet Dr Pedro Machado and Liz Dewar. Liz, one of the senior Physio's, offered to see if there was any useful input that the Physio team at NHNN could offer. I jumped at the chance to see what help they could provide.
I had my first appointment with the Physio team at NHNN, back in March, where they did an inital assessment and then gave me some simple exercises to do at home, to help strengthen my lower back and core muscles. These were exercises I could mainly do in my wheelchair.
After spending time with Becca going over the exercises and reviewing how I had got on with them, we were joined by Liz. Having transferred out of my wheelchair onto the plinth, they then got me strapped into a standing frame.
At this point, it might be useful to give you some background. On 17th March 2008, I went into hospital for 3 days of treatment with Methylprednisolone, which I had every 6 weeks. Usually I would drive to the hospital, walk up to the ward, stay in for 3 days, and then walk back to my car and drive home. I had been doing this for about 2 years.
My walking at this stage was really bad. Mainly out of bloody mindedness, but with a fair amount of stupidity, I refused to use any walking aids other than a stick. I absolutely refused to consider a wheelchair, or even a frame. My walking was slow, unsteady, and exhausting, with falls a regular occurance.
Anyway, I had my treatment and on the 19th March 2008 at about 4.30pm, I left the ward and walked to the lifts. As I was waiting for the lift to arrive, I felt as if I was going to collapse, so quickly - well not that quickly - returned to the ward and collapsed on the bed. That was the last time I stood or walked on my own.
Despite 3 months in hospital, having regular physio, and then 2 months in rehab, having intensive physio and gym sessions, I finally returned home in September 2008, in a wheelchair, unable to stand or walk.
Over the next few months I was seen by the physio team at my local hospital, and by the community physios, where they would use a standing frame to help me get upright, but eventually in May 2009, I was told that, as there was no long-term hope of me improving and being able to stand and walk, that they couldn't see me any more.
Despite what I was being told, I always thought that I could stand using a standing frame but that to do so needed a long term, co-ordinated approach. I argued that standing would have a benefit to me physically, but also psychologically, and that in terms of my long-term health and care needs, if I could stand now, it would save costs arrising from additional needs due to my lack of mobility if I was left in a wheelchair full-time. These arguements fell on deaf ears.
This is why the opportunity to see the team at NHNN was so great. Because they actually thought I might be able to stand and could see the benefits to me of being able to do so.
So having got me strapped in, got my feet and knees in the right positions, Becca turned the machine on and I proceeded to stand up!!!!!!!!!!!!
It wasn't a very elegant stand, and once up, I needed a lot of help in getting my chest and shoulders up, but I was standing on my own two feet, with my legs straight and with weight going through my legs. The video below shows this stand and a shorter one afterwards, but unfortunately due to a lack of space, only gives a picture of what was happening with my upper legs, and lower truck, but hopefully you'll get an impression of what was going on.
It felt fantastic. It was hard work, but the feeling of being able to stand was amazing.
I owe a big thank you to the staff at NHNN for seeing the potential, and giving me the opportunity to go there and to stand. Having not stood independantly for over 5 years and with a machine for nearly 4 years, I wasn't sure I'd be able to get onto my feet so well first time, but I did.
And to all the negative people, who told me I couldn't do it, that I wouldn't be safe, that I wasn't worth spending the time and effort on - well frankly you can f**k off (excuse my language). I knew I could do it. I just needed someone to believe in me and to give me the opportunity.
I was completely knackered after the session but am already looking forward to going back in 4 weeks to try again. I'll keep doing the exercises, and I'll keep believing, and next time I'll stand even better and longer.
Not a bad a Tuesday out, after all.
Before I go any further just a couple of points. Firstly, I will also post this on various facebook pages, seperate from my blog, as I feel that its important that as many people as possible read this. So if you see this twice, its not because I'm attention seeking, its just that I'd like as many people as possible to see this and hopefully share, in what was a wonderful event for me, but also hopefully take some hope and inspiration from it.
Secondly, you've probably seen the title of this blog and are wondering why you haven't seen "Part 1". Well quite simply, I haven't written it yet but I'll explain this during the blog.
On Tuesday last week I had two appointments at the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London. For those of you who haven't been there, on the video below there are brief clips at the beginning and end which show the outside of the hospital and Queens Square.
My morning appointment was with Occupational Therapy, and I will write about this seperately, as "Part 1". See, there is method to my madness.
In the afternoon I had an appointment with Becca in the Physiotherapy Department.
This appointment had been offered during a previous appointment at the IBM Natural History Research Study Clinic in December 2012, when I meet Dr Pedro Machado and Liz Dewar. Liz, one of the senior Physio's, offered to see if there was any useful input that the Physio team at NHNN could offer. I jumped at the chance to see what help they could provide.
I had my first appointment with the Physio team at NHNN, back in March, where they did an inital assessment and then gave me some simple exercises to do at home, to help strengthen my lower back and core muscles. These were exercises I could mainly do in my wheelchair.
After spending time with Becca going over the exercises and reviewing how I had got on with them, we were joined by Liz. Having transferred out of my wheelchair onto the plinth, they then got me strapped into a standing frame.
At this point, it might be useful to give you some background. On 17th March 2008, I went into hospital for 3 days of treatment with Methylprednisolone, which I had every 6 weeks. Usually I would drive to the hospital, walk up to the ward, stay in for 3 days, and then walk back to my car and drive home. I had been doing this for about 2 years.
My walking at this stage was really bad. Mainly out of bloody mindedness, but with a fair amount of stupidity, I refused to use any walking aids other than a stick. I absolutely refused to consider a wheelchair, or even a frame. My walking was slow, unsteady, and exhausting, with falls a regular occurance.
Anyway, I had my treatment and on the 19th March 2008 at about 4.30pm, I left the ward and walked to the lifts. As I was waiting for the lift to arrive, I felt as if I was going to collapse, so quickly - well not that quickly - returned to the ward and collapsed on the bed. That was the last time I stood or walked on my own.
Despite 3 months in hospital, having regular physio, and then 2 months in rehab, having intensive physio and gym sessions, I finally returned home in September 2008, in a wheelchair, unable to stand or walk.
Over the next few months I was seen by the physio team at my local hospital, and by the community physios, where they would use a standing frame to help me get upright, but eventually in May 2009, I was told that, as there was no long-term hope of me improving and being able to stand and walk, that they couldn't see me any more.
Despite what I was being told, I always thought that I could stand using a standing frame but that to do so needed a long term, co-ordinated approach. I argued that standing would have a benefit to me physically, but also psychologically, and that in terms of my long-term health and care needs, if I could stand now, it would save costs arrising from additional needs due to my lack of mobility if I was left in a wheelchair full-time. These arguements fell on deaf ears.
This is why the opportunity to see the team at NHNN was so great. Because they actually thought I might be able to stand and could see the benefits to me of being able to do so.
So having got me strapped in, got my feet and knees in the right positions, Becca turned the machine on and I proceeded to stand up!!!!!!!!!!!!
It wasn't a very elegant stand, and once up, I needed a lot of help in getting my chest and shoulders up, but I was standing on my own two feet, with my legs straight and with weight going through my legs. The video below shows this stand and a shorter one afterwards, but unfortunately due to a lack of space, only gives a picture of what was happening with my upper legs, and lower truck, but hopefully you'll get an impression of what was going on.
It felt fantastic. It was hard work, but the feeling of being able to stand was amazing.
I owe a big thank you to the staff at NHNN for seeing the potential, and giving me the opportunity to go there and to stand. Having not stood independantly for over 5 years and with a machine for nearly 4 years, I wasn't sure I'd be able to get onto my feet so well first time, but I did.
And to all the negative people, who told me I couldn't do it, that I wouldn't be safe, that I wasn't worth spending the time and effort on - well frankly you can f**k off (excuse my language). I knew I could do it. I just needed someone to believe in me and to give me the opportunity.
I was completely knackered after the session but am already looking forward to going back in 4 weeks to try again. I'll keep doing the exercises, and I'll keep believing, and next time I'll stand even better and longer.
Not a bad a Tuesday out, after all.
Friday 26 April 2013
Keeping you all in suspense.....
Due to the lure of internet shopping I haven't uploaded my video from Tuesday, so I am going to keep you all in suspense for another day.
Trust me. It will be worth the wait.
In response to a request from Christine - and her failing eye sight - I have made a small change to the layout of my blog which will hopefully make it easier to read. She obviously neglected to ask me to make it more interesting, so your stuck with the same old rubbish.
I will get the video uploaded tomorrow, and will write a bit to go with it, and I repeat, this will be well worth reading.
Cheers
Trust me. It will be worth the wait.
In response to a request from Christine - and her failing eye sight - I have made a small change to the layout of my blog which will hopefully make it easier to read. She obviously neglected to ask me to make it more interesting, so your stuck with the same old rubbish.
I will get the video uploaded tomorrow, and will write a bit to go with it, and I repeat, this will be well worth reading.
Cheers
Thursday 25 April 2013
A frustrating day at the Eye Clinic
Yesterday I had an appointment at the eye clinic at my local hospital - Croydon University Hospital. This is a routine 6 monthly appointment to check that a macular scar on the lens of my right eye is still stable and not got any worse.
The appointment time was 11.00 and the hospital transport was booked to pick me up at 9.00. Well eventually this arrived at 10.30 - gggrrrrr - but we still had time to get to the hospital.
We had to pick an old lady up at a care home on the way, so whilst I was being loaded, the amublance driver rang ahead to make sure she would be ready when we got there. We arrived at the care home only to find that she was not ready. So after waiting for her to be bought down, we then find that the person going with her as her carer was also not ready.
So after wasting 20 minutes, we set off again and were only 15 minutes late getting to the hospital. Now what I especially hate about the transport to my local hospital is that they refuse to take me in my powered wheelchair. So I have to use my manual wheelchair, which is uncomfortable, and I cannot move myself in as I do not have the upper body strength.
So I was put into the "Transport Lounge" - read as Patient Dumping Ground - to wait for a porter to take me to the eye clinic.
The porter comes in with a patient returning from a clinic, and promptly runs away. He returns 10 minutes later with another patient and is asked by one of the ambulance staff to take another patient to a clinic. About 15 minutes later he returns, and is about to disappear when I point out to him that I need to go up, and by now I am 45 minutes late for my appointment. His response is to say"I am busy," and to walk off.
It's at times like these that it is probably a good thing that I cannot walk, because if I could have caught up with him I may well have hit him.
Anyway I spoke to the manager of the transport crews, and he kindly took me up to the eye clinic.
First off they put some eye drops in to dilate the pupils so that the Doctors can examine the eyes better. These eye drops sting a bit but worst of all is that as your pupils are so dilated the sun-light actually hurts your eyes, when you go outside. Not that that was going to be a problem for me, for sometime.
I then had to wait nearly 2 hours to see a Doctor. When I got in her room she examined my eyes, checked the pressures in my eyes and then queried why I hadn't had a scan done. Well no one had asked me to have one so I pointed out that I had been waiting for 2 hours to see her and that frankly if a scan was required, one of the nurses should have said so. If she wanted a scan done that I wasn't prepared to wait around as I'd already wasted so much of my day, and she'd have to make another appointment.
Rather taken aback, she said there wasn't any change in the scar since last time, so the scan probably wasn't worth doing. Good Girl!
So then I had to wait for a porter to take me back to the "Transport Lounge". Eventually an ambulance driver collected me as they were waiting to take me home.
Finally I got home just after 15.00.
So for a 5 minute appointment I had spent 4 and a half hours out, not forgetting the 1 and a half hours waiting for the ambulance. This is time I will never get back.
Anyway I won't have to go back for another 6 months.
So that was my hugely frustrating Wednesday.
I realise this is out of sequence but hopefully tomorrow I'll write about Tuesday and post a video of what is truely a sensaitional day. Bet you can hardly wait!
The appointment time was 11.00 and the hospital transport was booked to pick me up at 9.00. Well eventually this arrived at 10.30 - gggrrrrr - but we still had time to get to the hospital.
We had to pick an old lady up at a care home on the way, so whilst I was being loaded, the amublance driver rang ahead to make sure she would be ready when we got there. We arrived at the care home only to find that she was not ready. So after waiting for her to be bought down, we then find that the person going with her as her carer was also not ready.
So after wasting 20 minutes, we set off again and were only 15 minutes late getting to the hospital. Now what I especially hate about the transport to my local hospital is that they refuse to take me in my powered wheelchair. So I have to use my manual wheelchair, which is uncomfortable, and I cannot move myself in as I do not have the upper body strength.
So I was put into the "Transport Lounge" - read as Patient Dumping Ground - to wait for a porter to take me to the eye clinic.
The porter comes in with a patient returning from a clinic, and promptly runs away. He returns 10 minutes later with another patient and is asked by one of the ambulance staff to take another patient to a clinic. About 15 minutes later he returns, and is about to disappear when I point out to him that I need to go up, and by now I am 45 minutes late for my appointment. His response is to say"I am busy," and to walk off.
It's at times like these that it is probably a good thing that I cannot walk, because if I could have caught up with him I may well have hit him.
Anyway I spoke to the manager of the transport crews, and he kindly took me up to the eye clinic.
First off they put some eye drops in to dilate the pupils so that the Doctors can examine the eyes better. These eye drops sting a bit but worst of all is that as your pupils are so dilated the sun-light actually hurts your eyes, when you go outside. Not that that was going to be a problem for me, for sometime.
I then had to wait nearly 2 hours to see a Doctor. When I got in her room she examined my eyes, checked the pressures in my eyes and then queried why I hadn't had a scan done. Well no one had asked me to have one so I pointed out that I had been waiting for 2 hours to see her and that frankly if a scan was required, one of the nurses should have said so. If she wanted a scan done that I wasn't prepared to wait around as I'd already wasted so much of my day, and she'd have to make another appointment.
Rather taken aback, she said there wasn't any change in the scar since last time, so the scan probably wasn't worth doing. Good Girl!
So then I had to wait for a porter to take me back to the "Transport Lounge". Eventually an ambulance driver collected me as they were waiting to take me home.
Finally I got home just after 15.00.
So for a 5 minute appointment I had spent 4 and a half hours out, not forgetting the 1 and a half hours waiting for the ambulance. This is time I will never get back.
Anyway I won't have to go back for another 6 months.
So that was my hugely frustrating Wednesday.
I realise this is out of sequence but hopefully tomorrow I'll write about Tuesday and post a video of what is truely a sensaitional day. Bet you can hardly wait!
An old video
This isn't anything new but just me transferring the old video of me using my sliding board to transfer.
Monday 22 April 2013
Well this is something new for me to try!!
I won't be a regular blogger but I will write when I think I've got something interesting or worthwhile to say. Somethings it will be topical - either about sport or about the stupid UK government, sometimes it will be about things related to my disability - more on that later, and mainly it will just be silly things that have happened that have either made me laugh or annoyed!
If you like what you read - or even if you don't - please feel free to comment.
And having started this, I'll now be out for the next few days, so when I'm back, hopefully there will be a lot to write about.
Thanks for reading!
P.S. Sorry about my profile picture - its the best one I currently have.
If you like what you read - or even if you don't - please feel free to comment.
And having started this, I'll now be out for the next few days, so when I'm back, hopefully there will be a lot to write about.
Thanks for reading!
P.S. Sorry about my profile picture - its the best one I currently have.
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