Skip navigation

What our visitors say

Property and holiday accommodation with wheelchair access

Login / Search

[ Join | More ]

Add topic 
Christine Barton - living an ordinary life in an extraordinary way!
Strategies for remaining independent
Posted
#14 (In Topic #13)
Site director

admin2 in the usergroup ‘Administrators’

Living with quadriplegia - a tribute to Christine Barton

Part 1 - Personal and medical

My partner and the inspiration behind Accessible Property Register, Dr Christine Barton MBE, died in March this year.  Christine had a severe form of multiple sclerosis which progressively incapacitated her, leading around 15 years ago to quadriplegia and the need for 24 hour care.  A slight movement of her head remained but that was it.

My aim in writing this blog is to share the strategies that Christine used to maintain an extraordinary level of independence and control right up until she died.  It is my hope that others may be able to benefit from our experiences and perhaps live a little more independently as a result.  This is Part 1.  Future episodes will cover personal assistance, funding, mobility, technology, and communication.

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."

It's this 'extraordinary way' and level to which Christine managed to maintain her independence that I want to record, because the strategies that she used should be open to all, and maybe knowing more about what is possible could help others in similar situations and facing barriers that could perhaps be overcome.

Christine was first diagnosed with primary progressive multiple sclerosis in either 1982 or 1983.  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 I feel 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 and 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 for disabled people, a developer for direct payments, a disability adviser to Sheffield City Council, a founder member of Inclusive Living Sheffield, a disability awareness trainer employed by Social Services departments, and by Sheffield University.  Only four days before her death she attended her final meeting as a member 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 her MS was devastating, her brain and speech were largely unaffected.

So what strategies does it take to remain a busy quadriplegic professional with national and local responsibilities?  In outlining these strategies I do attempt to show where there was a financial cost to ourselves and I'm aware that sadly, this may exclude access for some people to some of the options.  However, by far the highest proportion of the support costs (personal assistance and equipment) were met by NHS and Social Services at little or no cost to ourselves.  Some other costs could be significantly reduced, for example by buying second-hand.

Personal decisions

The first, and perhaps the most crucial decisions that Christine took in maintaining her independence were personal and medical rather than professional or support related.  Starting with overcoming the tyranny of the toilet!  Even before she took early retirement life was dominated by finding the next disabled loo and getting there quickly enough.  It takes over your life and resolving this issue was critical for Christine.

Christine's solution will not be one that everyone would want to consider, but it did turn out from Christine's experience to be both right and effective.  With the support of her GP and the relevant consultants she opted for an elective ileostomy and suprapubic catheter*.  At a stroke the tyranny of the toilet was banished forever.  As she progressively lost her remaining mobility it is difficult to imagine how her life would have been if this decision have not been taken.  Without this it seems unlikely that Christine could have undertaken the demanding professional roles that occupied much of her life for the next 15 years, a number of which involved travelling and the ability to sit and concentrate in meetings without being distracted by toilet needs!  It was a decision that she never regretted and I'm pleased to be able to say that, although both ileostomies and suprapubic catheters need regular management (bags made emptying and changing, a task undertaken by myself and Christine's PAs) both remained remarkably trouble-free throughout her life.  

Cost to ourselves - nil

If you would like more information about the information in this blog then please use the 'Reply' button below, or contact me at conradh@accessible-property.org.uk

* An ileostomy (like a colostomy) brings the bowel to the surface of the abdomen where waste material empties into a bag.  A suprapubic catheter enters the bladder just above the pubic bone and tends to be less problematic long-term and needs changing less often than a conventional catheter.


Last edit: by admin2
Back to the top
 
Posted
#1753

cc20180427
hermens
tory burch outlet online
nmd adidas
cheap jordan shoes
louboutin outlet
michael kors
michael kors outlet clearance
coach factory outlet
fitflop sandals
mulberry outlet uk
jordans
coach outlet online
rolex replica watches for sale
oakley sunglasses outlet
cheap nfl jerseys wholesale
north face outlet
adidas yeezy boost
nfl jerseys
nike outlet online
coach outlet online
supreme clothing
ugg canada
canada goose jackets
coach factorty outlet online
moncler
polo ralph lauren outlet online
canada goose sale
ugg boots
birkenstock outlet
ralph lauren uk
birkenstock shoes
nike outlet store online
adidas nmd r1
coach outlet online
yeezy shoes
louis vuitton outlet
michael kors outlet store
kate spade handbags
tiffany and co outlet
adidas yeezy
fitflops sale clearance
air max outlet
ugg boots
kate spade outlet
kobe shoes
prada shoes
coach outlet store
burberry handbags
coach factory outlet
michael kors outlet store
pandora charms sale clearance
coach outlet canada
salvatore ferragamo outlet
christian louboutin sale
michael kors outlet online
cheap jordan shoes
abercrombie kids
coach factory outlet online
cheap jordan shoes
kate spade outlet online
canada goose sale
coach outlet store
pandora charms sale
philipp plein outlet
adidas yeezy
cheap jordan shoes
valentino outlet
ugg outlet online
coach outlet online
longchamp outlet store
adidas yeezy boost 350
discount oakley sunglasses
toms shoes
louboutin shoes
oakley sunglasses outlet
canada goose jackets uk
oakey sunglasses outlet
mcm bags
pandora charms outlet
michael kors outlet store
burberry outlet online
mulberry handbags
timberland outlet
canada goose jackets
adidas originals
canada goose jackets
ralph lauren outlet online
ralph lauren outlet online
ugg boots
ugg boots
coach factory outlet
ralph lauren outlet online
mulberry
the north face outlet
cheap air max
coach outlet store
nike outlet online
coach outlet store online
longchamp sale
adidas outlet online
cheap jordans for sale
hermes bags
pandora outlet
coach factory outlet
nike sneakers
air max
canada goose jackets
coach outlet online
kate spade outlet online
converse outlet
ugg outlet store
fitflops sale
ugg boots outlet
supreme shirts
michael kors outlet
michael kors outlet
pandora jewelry
coach outlet online
ray ban sunglasses sale
michael kors handbags
pandora jewelry outlet
michael kors outlet online
pandora jewelry
mlb jerseys cheap
canada goose parka
ugg outlet
mbt
canada goose sale
christian louboutin shoes
michael kors outlet online
kate spade handbags
pandora jewelry outlet
yeezy boost 350
skechers outlet
ralph lauren uk
cheap air jordans
coach outlet store online
moncler sale
cheap ugg boots
birkin handbags
adidas superstar shoes
hermes bags
adidas yeezy boost
kate spade outlet online
mlb jerseys cheap
hermes bag
adidas outlet store
tory burch handbags
coach factory outlet online
christian louboutin shoes
adidas ultra boost
pandora charms outlet
canada goose jackets
yeezy boost 350
discount oakley sunglasses
tory burch outlet online
cheap air jordans
nike shoes outlet
hermes handbags
moncler coats
adidas outlet
kate spade outlet online
louis vuitton outlet online
ralph lauren outlet
kate spade outlet
puma outlet
moncler outlet online
jordan shoes for sale
ralph lauren sale
canada goose jacket
mlb jerseys
cheap oakley sunglasses
nike outlet
air max
christian louboutin shoes
toms outlet online
longchamp outlet
michael kors outlet online
nike sneakers
louis vuitton outlet store
toms outlet store
polo ralph lauren outlet
adidas yeezy shoes
michael kors outlet online
ugg boots women
canada goose
rolex replica watches
ralph lauren uk
new balance outlet
ray ban glasses
nike air max 2018
oakey sunglasses outlet store
nba jerseys cheap
louis vuitton outlet online
coach outlet online
nike outlet
fitflops sale
moncler coats
michael kors canada
pandora jewelry
cheap oakley sunglasses
discount oakley sunglasses
moncler jacket
nike air max 90
mont blanc pens
adidas outlet online
supreme uk
nfl jerseys
cheap jordan shoes
coach outlet online
uggs outlet
michael kors outlet store
louis vuitton factory outlet
canada goose jackets
adidas outlet store
pandora outlet
canada goose coats
converse all star
ralph lauren outlet online
mbt shoes sale
coach factory outlet online
red bottom
cheap air jordans
michael kors bags
timberland outlet store
gucci outlet online
ray bans
louboutin outlet
mont blanc pen
ugg outlet store
coach outlet online
nmd adidas
uggs outlet
adidas nmd r1
timberland shoes
cheap nike shoes
adidas superstars
polo ralph lauren
fitflop sandals
canada goose
ralph lauren outlet online
birkenstock sale
jordan shoes
canada goose jackets
polo ralph lauren
moncler uk
harden vol 1
timberland boots outlet
pandora charms outlet
ralph lauren
coach outlet
kate spade outlet online
ferragamo shoes
adidas nmd r1
polo ralph lauren outlet
tory burch shoes
ray ban sunglasses outlet
nike huarache shoes
oakley sunglasses for women
timberland boots
tory burch outlet store
canada goose jackets
discount ray ban sunglasses
moncler jackets
polo ralph lauren outlet
ralph lauren outlet
nike outlet store
pandora charms sale
louis vuitton outlet
birkenstock outlet store
moncler uk
air jordan shoes
adidas sneakers
ralph lauren
birkenstock outlet
birkenstock shoes outlet
supra for sale
adidas campus shoes
fitflop uk
coach factory outlet online
nike air max 2018
moncler outlet online
adidas store
michael kors outlet store
louis vuitton factory outlet
nike air max 97
nike zoom
oakley sunglasses outlet
canada goose jackets
tiffany outlet
valentino
coach outlet online
cheap jordans free shipping
louis vuitton handbags
nike outlet store
hollister clothing store
canada goose
longchamp bags
valentino outlet
red bottoms
coach factory outlet online
adidas yeezy boost
cheap ray ban sunglasses
mulberry uk
yeezy shoes
new balance outlet store
coach outlet online
birkenstock outlet online
ralph lauren outlet
ferragamo outlet
nike shoes
ugg boots sale
pandora charms
pandora uk
polo ralph lauren outlet online
cheap oakley sunglasses
pandora charms
coach factorty outlet online
louboutin shoes
coach factory outlet online
fred perry outlet
tiffany and co jewelry
coach outlet store online clearance
mcm outlet store
pandora sale clearance
michael kors outlet online
kate spade handbags
supreme shirts
yeezy boost 350
red bottom heels
canada goose coats
michael kors outlet clearance
air jordans
timberland outlet
vans outlet store
moncler pas cher
cheap oakley sunglasses
coach outlet online
fitflops sale clearance
coach outlet online
pandora jewelry store
polo ralph lauren outlet
vans outlet
canada goose outlet store
uggs outlet
tods shoes
christian louboutin shoes
canada goose coats
prada outlet online
cheap oakley sunglasses
canada goose jackets
coach outlet store online
ray ban sunglasses outlet
polo ralph lauren outlet online
gucci outlet
durant shoes
nike air max 97
yeezy shoes
michael kors outlet online
ralph lauren uk
fitflops uk
oakley sunglasses wholesale
ugg sale
coach factory outlet online
fred perry polo shirts
polo outlet online
coach factory outlet
air max shoes
reebok outlet
retro 11
cheap jordans
ugg outlet online
cheap jordan shoes
asics outlet
philipp plein
pandora jewelry
michael kors outlet online
cheap jordan shoes
michael kors outlet clearance
supra for sale
fitflop shoes
ecco shoes for women
pandora charms outlet
polo ralph lauren outlet
nike running shoes
canada goose sale
cheap jordans
pandora charms sale clearance
moncler jackets
michael kors outlet store
coach factory outlet online
coach outlet online
adidas nmd runner
moncler outlet online
mlb jerseys wholesale
ecco outlet
coach factory outlet
mbt
ralph lauren sale clearance uk
coach outlet online
adidas outlet online
the north face jackets
adidas shoes
cheap ray ban sunglasses
pandora charms sale clearance
pandora charms sale clearance
yeezy boost 350
ray ban sunglasses discount
gucci outlet online
nba jerseys wholesale
yeezy boost
air jordan shoes
birkenstock uk
nike outlet store
abercrombie and fitch canada
pandora rings
coach factory outlet online
canada goose coats
coach outlet online
michael kors outlet store
moncler sale
fitflops sale
coach outlet store online
nike air max 2019
kate spade outlet
air max 90
moncler outlet online
pandora charms
air jordan retro
canada goose jackets
kate spade outlet store
birkenstock sandals
canada goose
oakley sunglasses outlet
birkenstock outlet store
salvatore ferragamo shoes
canada goose jackets
adidas nmd r1
canada goose
cc20180427
Back to the top
 
1 guests and 0 members have just viewed this: None
Control functions:

Quick reply   Contract

Your name:
Your message: