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Living with care is something of a necessity for some of us, a lot of the time it can be really nice if you happen to stumble across the right people.
But, as with most things we can’t live without,living with can also be difficult. I get asked on occasion about how I approach this and an example question is below :

“Hello , I need to talk to you Tom about how you deal with your PA’s I’m finding it more of a nuisance, hassle and just the whole thing brings me down. I seem to be much lower mood than usual but this has been for a while. One of the biggest issues is giving me my space and own time. Furthermore when I am visiting family giving me and my family bloody time together alone lol. Any wise words of comfort or even better assertiveness!”

“I think that as you say it is a nuisance getting time on your own and for most people having time to themselves is an underrated necessity. I struggle from similar issues and being so dependent on people who have to be close to you to do their job can sometimes test us. We will have other complexities that are specific to our situation that affect the ability to spend time on our own and to do that comfortably may not always be possible. As you said, family time is so important and my family and friends often get frustrated that we can’t spend as much one-on-one time together as we would like. You have also highlighted one of the solutions which is to be assertive. Explaining to those who work with you that being alone with friends and family (and yourself) is something that you need is critical. Once people understand this they are less likely to be offended when you say, bluntly, “I’m okay now.” Or “I’ll give you a shout when I need something.”.
I try not to be bothered about asking friends and family to go and ask a PA to come and help in it nature. One can meet me when I need something. They sometimes are embarrassed about going knocking on a PA’s door but only the first few times.
There is a very good website by an American tetraplegic lawyer that I have been reading, I think he gives strong and useful advice and has a good attitude towards presenting himself and tackling problems just as you do. There is a section on these kind of issues which you may find useful, I really like the article on “attitudes”.
The link to the article on assistance is:  http://www.wheelchairlife.net/Assistance_And_Assistants_For_People_In_Wheelchairs.html
this may not be particularly relevant because it’s US oriented, I think you could probably skip the first few chapters and around the middle there might be something useful. There is definitely some good advice about how to deal with the more general issues of close working.”

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The operation to remove the kidney stone didn’t go very successfully, they have to try again using a different method and will do so in May. I had a bit of a fever on the day after the operation due to an infection but I’m recovering now.

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http://www.wheelchairlife.net/Positive_Attitude_Most_Important_For_LIFE_In_Wheelchair.html

FANTASTIC article which manages the delicate balance between patronising, overbearing advice and firm, useful guidance. Great observations on positive attitude when “inconvenienced” by disability. It definitely reflects significant portions of my belief with respect to attitude and additionally refers to attitudes that I strive to enact. Congratulations to the author and I hope many people benefit from this writing.

As an afterthought, I would assume that many people in a position to appreciate much of this reflective writing are already pursuing the mentioned ideals whereas people with a tendency for depression and negative thinking may not be in a position to heed the advice. It is nonetheless very good advice for most of us.

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Off into hospital today, kidney stone operation tomorrow. Hopefully a simple removal. Should be out on Friday.

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Wedding preparations and stag trip organisation getting very expensive, should be worth it. Seem to be constantly paying bills.
Operation on 11 April, not particular looking forward to that.
Work is very interesting, starting a new project using python.

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thanks for the link Laura, I fear it may be too late for the NHS. Amazing that the bill has already gone through considering the extent of public and professional opposition.  http://lauralarue.co.uk/?p=1943251

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really enjoyed a course to develop some fundamentals in counselling to help with being a mentor.

Brushed over some of the concepts within Paul Kennedy’s book on coping with spinal injury:

http://www.oup.com/us/catalog/general/subject/Psychology/PractitionerClientGuides/?view=usa&ci=9780195339727

I forget how much of what we covered is applicable in everyday life, “minimal hints” i.e. conversational tools for steering conversation and Instigating opinion is a good example. Another Example is listening skills, using tools such as reiteration and confirmation to assume a grasp on mutual understanding of the current topic.

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Ellen and I are preparing for the wedding and trying to be organised alongside everything else, we are going to have a nice nonreligious ceremony in a large country house and then a reception and party over the next couple of days at Standlake. Hopefully with bands and food and other entertainment.
My stag party is being organised by Raj and will be in Ibiza in June, I’m really looking forward to some non-stop dance music, it’s been too long.
Recently I have been doing far too many things including scuba-diving, mentoring (counselling) for people with spinal injuries, my software work and listening to lots of live music (DJ Shadow, groove Armada, Coldplay, King Charles recently)
it’s all very interesting but I do feel like I’m trying to do too much and not doing things as well as I should. As with you, I wish I could spend more time with family.
Healthwise I have an operation in April to remove some kidney stones which I’m not really looking forward to, hopefully all will go well.
I’m trying to get my off-road wheelchair finished for the summer, it’s been developed to use a head control and should allow me to go out in the country etc.

looking forward to becoming a backup mentor, the training weekend should be fun

still waiting on a date for my kidney stone operation, hopefully fairly soon, don’t want to interfere with the stag do  (and the wedding :->).

Working on making sure the off-road wheelchair is perfect before delivery, in my experience wheelchair after sales service is often a contentious issue, best to get it right before delivery.

Lots of live music queued up, Mr scruff this weekend, King Charles, Lianne L’Havas , two door Cinema club and Metronomy and Laurent Garnier including others coming up.

What a great film the Rum diary is, Johnny Depp doing what he loves best, playing his Hunter S Thompson-esque character.

Very excited about wedding stuff although not enjoying the chores involved!

Using Mu PDF

MuPDF is a more keyboard friendly PDF reader than Adobe Acrobat reader.
The Adobe product is more flash/air based and therefore doesn’t respond as easily to keyboard control. It is geared towards point-and-click type usage and the voice recognition “say what you see” paradigm doesn’t work quite so well.
Very simple program which doesn’t seem to crash or have unexpected results, exactly what you need when trying to control with voice recognition.
</> Do page up/down 10 pages, very useful for quickly browsing through documents. can use m/t as in vim for Mark/trace back to previous mark, can also use a list of 10 marks e.g. m[0-9]/t[0-9].

One less frustrating program to deal with.

I thought I would write a little bit about the way in which I develop software. I will try to explain the combinations of tools and the rationale behind the decisions. I will also note my opinions based on the experiences I have had. If anyone has anything specific they would like explained/elaborated upon please post a comment or e-mail whizz2000 at Hotmail dot com.

I rely completely on hands-free solutions, my main tool has been Dragon NaturallySpeaking. I use the most up-to-date version if I can because any performance improvement results in a significant time saving. I do not use the Dragon professional version, to create scripts like you can in the professional version, I use “NatLink” by Joel Gould I think. NatLink is a Python-based scripting extension that can be used to interact with Dragon.

I use Dragon as an input method in a variety of ways. The highest level (most powerful least flexible) being scripted commands for example “search Google for voice recognition” or a NatLink macro command “insert address one”. Obviously dictation is a very powerful feature of Dragon and the autopunctuation (which I usually turn off) can be useful for some people, I find dictation very accurate with Dragon 11.5 (as of writing).
The next level of input is using the “spell …” syntax, which allows you to spell out letters in quick succession. This is very useful when spelling words not in your Dragon vocabulary. Unfortunately with newer versions of Windows and browser-based text input this is not always possible. For example when using the start bar desktop search function in Windows 7, issuing the spell command changes focus out of the desktop search text field. A workaround for this is to “switch to spell mode” and then spell out the word. When using Firefox, if you use a custom chrome file you can remove the orange button in the top left which always opens when issuing a spell command. Even then the spell command can also take you back to the first tab, I’m sure there is another workaround using a chrome file but I haven’t had time to find it yet. You can again use “spell mode” or only a single tab per Firefox window. I always use phonetics when producing characters as it reduces ambiguity, increases accuracy and speed of recognition. It takes a while to learn them but I have found it worthwhile in the long run.
The next level of input is the “press …” command with which you can only issue single or combination keyboard presses (and mouse-keyboard combinations as of Dragon 11). This can be useful when the spell command will not work for some reason. I do a lot of work across different terminal types etc and for example using virtual machines or Remote Desktop/vnc sometimes the Dragon builtins don’t work.
The mouse grid input can be learnt from the Dragon documentation and is fairly intuitive. Learning to use this quickly is a great help but requires you to visualise coordinates in advance of uttering them. The Mac version does not allow you to issue multiple coordinates at once and therefore is unusable for me.

Next time, autohotkeys, putty and NatLink

Having seen the quality of the iPad 2 screen (very responsive), and the availability of the Dragon dictation application, I’m now looking to see if I can acquire one and a stand to use a mouth stick for various tasks. Time will tell whether this is as efficient as voice recognition. It’s likely that it will be more efficient for various tasks but not universally. Now to try to find the cash for one…

regarding the increased negative attitude towards people claiming disability benefits due to the government increased attention on benefit fraud.  http://www.guardian.co.uk/commentisfree/2012/feb/06/negative-attitudes-disability

/*****************************************//*****************************************/

Dear Jessica,

My name is Tom Nabarro, I am a software engineer working in telecommunication. My number is provided below. I am physically disabled through a spinal injury four years ago and have completely lost the use of muscles below my shoulders (including my arms). I don’t receive many income assessed disability benefits because of my employment status.

In response to the allegation of increased levels of abuse and hostile behaviour towards disabled people as a result of the government interest in tackling benefit fraud, I don’t usually receive noticeable hostile attention and have not personally experienced any increase. I believe that it is an increasing problem for a significant number of other disabled people. Those who have non-transparent disabilities including those whose disabilities are not necessary to do with mobility are likely to be most affected.

It’s a very common occurrence for an ignorant onlooker (the vast majority of us are ignorant with respect to details of any more than one specific disability) to assume that because they can’t see the disability, support to counteract the effects of the disability is not warranted. Obviously the role of making such decisions should be left to the relevant authority with knowledge of the specific disability.

The occurrences of disability benefit fraud are a persistent worry, it is important for the government to tackle these problems but attention also needs to be paid not to disturb the quality of living of disabled people who are valid recipients of disability benefit. This can be achieved by increasing public awareness of the subtleties of disability and continue to actively protecting the human rights of disabled people.

An issue that does affect me and is a direct result of increased vigilance against benefits fraud is the tightening of financial support for disabled people who are in employment. ‘Access to work’ is an invaluable government initiative to assist with disability related costs of employment and encourage the employment of disabled persons. Recently I’ve noticed increased reluctance to cover what I see as disability related expenses, this is illustrated by the removal of items that access to work will cover, for example ‘laptops and accessories’. As my ability to work relies on specialist IT equipment, this is not particularly helpful. Another result of this tightening is an increase in time and resource required to make a successful application, which puts off most people from the start.

Best regards

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