Long overdue update…

An update, as requested by Marie.

Had a bit of a virus/infection which has affected my voice for the past week. This is most frustrating as it stopped me from working and doing anything on the computer. The voice recognition software is still surprisingly accurate with my weak voice.

Enjoying having my brother back from Australia, Michael my grandfather just had his 89th birthday which was a great event with some amazing musical performances.

I have just signed my new permanent contract for three days a week at work, a very unique style of contract for a corporation like Siemens. My project is going well, just moved from component development on to the integration phase which is where all the excitement/frustration is likely to occur. I’m having to decide what project I will be interested in afterwards, which is pretty much a career decision as the options involve extremely large projects in very different areas, and would be for a minimum of a few years I should imagine. Government networking technologies or telecoms are the available areas.

The vehicle I acquired from Stephen Hawking is getting old after the extensive use we have been putting it through, so I am looking at getting a new vehicle through contributions from the “access to work” government initiative and another charity “regain”. Unfortunately there are rather stringent requirements relating to entrance height and front passenger wheelchair location. The acoustics are also very important as I work in the car using a laptop and voice recognition software. My vehicle of choice at the moment is a Volkswagen Colorado Nevada.

My wheelchair is great, are really great piece of engineering. I continue to be occupied by my home entertainment hobby, at present configuring my Linux media server to replace my power hungry windows one. I am also busy getting my electronic devices to be controlled via infrared from my wheelchair controls.

Looking forward to going to Switzerland end of July to the paleo Festival and staying at my dad’s house which apparently has had an incredible facelift to accommodate my needs. I miss my family out there.

We are hoping for good weather to have a barbecue on Saturday and are preparing for the fallout and devastation that will follow the departure of Rachael, the best PA ever to grace this earth.
Love to all

Access to work application for the new car:

To whom it may concern,

I would like to apply for financial assistance in purchasing a specially adapted vehicle in order to commute to and from work. I was paralysed from the shoulders down (C4-C5), just over two years ago through a snowboarding accident. This happened just after I had received a work contract with Roke Manor research Ltd (a Siemens company) based in Romsey. I spent 15 months in hospital rehabilitating and at that time graduated with a first class honours in electronics and microelectronic engineering from Brunel University. I was employed by Roke Manor research, with assistance from Access to Work, immediately after discharge from hospital. I initially had a three-month contract, which was followed by a six month contract and after my first review I am about to be offered a longer term contract.I control my current wheelchair (funded by Access to work) through a head control and work my computer using voice recognition software. I work two days a week in the office (attended by a support worker-not funded through access to work) and at least one day a week from home (non-contracted hours).Due to my lack of working back muscles I rely heavily on external stabilisation when manoeuvring in my chair and travelling in transport. If I do not have sufficient stabilisation I experience acute pain and discomfort and makes an efficient working day impossible.

Until now I have been travelling to work in an adapted vehicle donated to me by a friend. The wheelchair stabilisation and upper body stabilisation in this vehicle is not sufficient and this makes the working day only just bearable. The vehicle is also in a state of disrepair, the ramp is dysfunctional and unsafe. The car is nearing its end of life (15 years old).

With my new contract I will be working three days a week in the office (meaning commuting time, from Oxford to Romsey, of over nine hours a week) and the prospect of this increased number of hours in discomfort is discouraging (not to mention the thought of potential long-term health risks).As you will understand it is critical to my well-being and career development to find a solution to this problem, I have previously applied for travel to work assistance in the form of a taxi service. While the application was pending I tested out the idea by taking a taxi for a few days. Due to the specifics of my height (147 cm in the chair) and heavy powered wheelchair, the various accessible taxi options were very limited and none that I could find provided sufficient stabilisation. I have since been researching potential accessible vehicles which offer sufficient stabilisation and I found that the option of a VW Caravelle with a front, passenger-side, ‘ permalock’ wheelchair fixation in the floor (compatible with my new wheelchair) offers the most suitable specifications in terms of ceiling height, door access height, wheelchair stabilisation and physical  wheelchair situation. It is imperative that I am the front passenger to enable a smoother ride and to be able to instruct/communicate with the driver due to my reduced vocal capacity.

I would be ready to make a contribution to the cost. I have also applied for charity funding: This is pending.

I’m extremely grateful for access to work assistance, enabling me to work and gain independence in many areas of life.

I will attach a provisional quote of the vehicle I feel is most suitable, I am waiting for an update on my application for charity funding. 

Yours sincerely

Tom Nabarro 

A little article I wrote for the spinal foundation newsletter, apres-sci:

I spent 15 months at Stoke recovering and rehabilitating from my snowboarding C4-C5 injury, this was a relatively long stay due to a severe bone infection and a couple of emergency operations to refix and then remove metal work. My stay enabled me to adjust mentally to the idea of living without the use of arms legs and back muscles, and learn methods of manipulating my environment using my head (physically and mentally) and voice. (I use voice recognition software to work, play and control my environment)
My life has obviously significantly changed but I’m trying to pursue the same goals I had before my injury in terms of career and relationships, albeit with a different perspective.
The resources of help are numerous at Stoke and the unique thing is the number of experts available in one place, learning from OTs, physios, nurses, HCAs, matrons, doctors, surgeons, ex-patients, current patients, radiologists, podiatrists, external health care professionals (agencies/community nurses),SIA members, psychologists, domestic staff, case managers, external for charity workers… the list goes on.

The wealth of knowledge at Stoke Mandeville has been gathered through research into spinal injuries and saves and enhances so many lives when it is passed on to patients. There is still so much to learn about how the infinitely complex human body reacts to damage of its underlying autonomous support system. The challenge of having to perform bodily tasks, consciously, that would otherwise be automated with the help of a working spinal cord, is one that everyone with SCI struggles with. Therefore research offers invaluable insight in tackling these problems that the human body would normally deal with so elegantly.

Research and innovation in this area has potential commercial opportunities with a large customer base, underdeveloped products and low levels of competition. Even simple innovations could lead to huge benefits for people with SCI as current levels of technology are often way ahead of technologies present in current products with an SCI application.

Living with a SCI is never going to be easy, but even the simplest of tools, with a little thought, can be of the greatest advantage and make the impossible seem possible.

My nomination of my incredible PA Rachael for active assistance “PA of the month” competition (which she didn’t win!!!!):

Rachael has the perfect balance between attentiveness and discretion, I have not seen this level of tact before in anyone. Rachael is what I would call a professional, she has coined the phrase “transparent care” which is what I need, someone who would enable me to keep my mind focused on other things while she is performing my care around me. Obviously when input is needed by me she listens attentively and does not try to influence my decision more than giving gentle reminders or advice.

Rachael can be very hands-on when she needs to be, she handles technical tasks exceptionally and is a very fast learner, performing tasks with the ability of someone with great experience in many unfamiliar areas. For example she has managed to fix my new wheelchair which would have required me to call out a trained engineer, she often helps me perform complex computer-related hardware and software tasks with my direction and is always patient with me even if I am tired or irritable.

Rachael pays great attention to even the smallest of skin marks, emerging patterns or signs and is always looking for ways to improve the care she gives, when working with others she is able to take a leading role or to stand back in a more passive role depending on what is needed. She has a great sense of humour and is one of the most caring people I have ever met, her experience with childcare makes her stand out as an exceptional nurturing and warm person. She has become a best friend to myself and my girlfriend and we wish her all the best in the future.

I have seen her be a great role model to others working with her and we are very sorry that she is leaving. For the reasons given I would like to nominate her as PA of the month.

Quotes I liked:

“sooner or later in life the things you love you lose”
“when food is gone you are my daily need”

One thought on “Long overdue update…”

  1. My dear Tom,

    I feel quite embarrassed but nonetheless my “ranting” was rewarded with a wonderful long news update and I thank you kindly.

    Have a great barbecue.

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