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Living an ordinary life - article from New Pathways
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Christine Barton - living an ordinary life (New Pathways December 2013)

It's not always easy to talk about the later stages of MS, particularly as the condition affects people in so many different ways.  My partner Christine Barton who died in March this year aged 67 was one of those most severely affected.  But if you are expecting a sad and depressing tale of suffering and misery, prepare to be disappointed!

Christine had primary progressive multiple sclerosis, evident for at least the last 30 years of her life and probably longer.  Primary progressive MS is relatively rare but, as the name suggests, it is an increasingly disabling form of the condition.  In Christine's case it resulted, apart from a tiny movement of her head, in complete quadriplegia from around 1995.

Christine was a worker; she's always worked and, despite quadriplegia continued to work and to lead an active social life right up to the week that she died.  People who knew her would remark that she lived an extraordinary life.  "No,' she would say, "I try to live an ordinary life - I just have to do it in an extraordinary way."

Christine was first diagnosed with primary progressive multiple sclerosis around 1980.  At that time Christine was a teacher and later, an education adviser.  In 1993 increasing levels of impairment meant that she was forced to take early retirement and it's at this point that she felt her 'real' career began.  

Since she retired and significantly, when she was already quadriplegic she has served as a member of the governing bodies of the General Social Care Council, the School for Social Care Research, and as a Trustee of Voluntary Action Sheffield.  Christine has been a Disability Adviser, a campaigner for inclusion and equality, a developer for direct payments, a disability adviser to Sheffield City Council, a founder member of Inclusive Living Sheffield, a trainer employed by Social Services, the NHS and universities.  Only four days before her death she attended her final meeting as a member of the governing board of Sheffield LINK.  And that's just a snapshot of her professional life!  In 2000 she was honoured with an MBE for services to disabled people.

Christine did bring two important advantages to this phase of her life: firstly she had the professional qualifications and experience to work at senior levels and to be listened to with respect by decision-makers.  Secondly, although the level of physical impairment created by MS was devastating, her brain and speech remained largely unaffected.

What Christine's story does illustrate is that, with the right support, funding, and technology it is possible to continue to live a full professional and social life, but doing so requires a lot of knowledge, determination, and the capacity to make some difficult decisions.

The first difficult decision that Christine made was probably the most crucial.  In the two years before Christine took early retirement the problem of finding and getting to an accessible toilet in time became increasingly urgent.  Aware that this was a problem that could only become worse she took the decision to opt for an elective ileostomy and suprapubic catheter.  Choosing surgery as a way of solving toilet problems is not for everyone but there is no doubt that for Christine it was absolutely the right decision.  Never again was she constrained by the need to find an accessible toilet and without this decision she would not have been able to take on roles that involved regular trips to London and the ability to concentrate through long and often complex meetings.

It's also reassuring that throughout the lengthy period that Christine lived with both the ileostomy and suprapubic catheter, both proved remarkably trouble free and easy to manage.  Yes, there are bags that need emptying, and if the individual is not physically capable of doing this for themselves (and many will be) it's very straightforward for a care assistant or partner to help.

Having banished the tyranny of the toilet, what else does the busy quadriplegic professional need to maintain their independence?

1. Personal care

If you are quadriplegic and can do nothing for yourself, you do need 24 hour assistance and at least in these circumstances there can be no argument over whether the individual qualifies for funding!  Christine’s direct payment was used to employ one full and two part-time assistants.

2. Mobility and transport

Christine was supplied with a manual wheelchair by the NHS and we chose to buy a much more sophisticated power wheelchair which Christine could control herself initially, but was ultimately driven by whoever was accompanying her at any given time.  A really comfortable pressure relieving cushion and tilt-in-space were absolute essentials.

Transport – Christine moved from an adapted Motability sourced car to a series of wheelchair accessible vehicles that we chose to buy ourselves (Christine received the higher level of Disability Living Allowance).  If possible, go for one where the wheelchair user sits alongside the driver – much more comfortable and sociable!

3.  Equipment and technology

Rather to our surprise we found that most essential equipment was available free of charge either through the NHS, Sheffield Equipment and Loan Service, or Social Services.

So the gel cushion for Christine's wheelchair, a mobile hoist, slings for use with the hoist, a tilt in space shower chair and a pressure relieving air mattress were all supplied promptly and without cost to ourselves.  Christine also received via the NHS quite sophisticated environmental controls that she could operate with a chin switch.  The controls covered multiple functions including use of a special phone (also supplied), controlling the TV and radio, operating a buzzer when she needed help, and a front door intercom and opening system.  These controls can operate virtually any piece of electronic equipment and switching systems can be adapted to accommodate almost any level of physical impairment.

4.  Communication

To work at the level which Christine did would not have been possible had she not been able to use a computer.  Fortunately, voice recognition technology more than kept pace with her increasing inability to use a mouse or keyboard.  The latest versions of programs like Dragon NaturallySpeaking can put text on screen almost as fast as you can speak, and can also be used to control virtually every function of a computer entirely by voice.  

5. Funding

We did choose to put quite large amounts of our own money into some expensive adaptations and equipment, particularly vehicles and wheelchairs, but beyond that Christine's direct payment, Disability Living Allowance, and provision of all essential basic equipment without charge meant that the total funding package provided came remarkably close to covering the costs involved.  If this has not been your experience, it may be time to ask some questions!

This has inevitably been a very quick gallop through the main features which were key to helping Christine to stay independent and it was sometimes a complex and difficult process.  But all the effort was absolutely worthwhile and all who contributed can look back with pride on Christine's life and on what she achieved.  Ordinary life or not, to all of us she was pretty special!

Conrad Hodgkinson, November 2013
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