Guillain-Barré Syndrome Support Group

Transcription

in the know
Summer 2013 Issue 20
in this issue
1
Letter from the Office
Executive
2
The 2013 Annual
General Meeting and
Conference
6
Ask the Experts
9
Research Updates
12 Recently Published
Articles
15 Fundraising
18 My Sister – As Strong
As A Horse!
21 My experience of GBS
29 A long and winding
road: A family’s story
of GBS
33 Branch News and
Events
34 Letters
Equipment Review
35 Christmas Cards
Gill Ellis (GBS Support Officer) – see page 15
37 Logo Competition
Registered Charity 327314, SC039900
In The Know is published by the GBS Support Group
in the know
About the Guillain-Barré Syndrome
Support Group
Founded in 1985 to help those
affected by the illness, the
charity today has three main
aims:
• providing support,
information and other
assistance to sufferers and
their families;
• promoting research into
causes, prevention and
treatments;
• advancing the education of
the public and of the medical
professions.
Left to right: William Harmer, Chris Fuller, David Wada, Russell B. Hamilton, Bridget
Allerton, James Babington Smith and Jacqui Cooper
How you can help
As long as people continue to be taken ill by GBS
and CIDP and related conditions, the Charity’s work
will never be complete.
We can only continue to provide our service with
the continuing help of our generous supporters.
There are several ways in which you can help us
and make that extra difference.
• Some people like to hold fundraising events,
which also has the advantage of spreading
awareness.
• Others prefer to make a financial donation.
• Additionally, many wish to become members of
the Charity so that the mutual support between
them, the Charity and other members may
continue.
GBS Support Group
Woodholme House
Heckington Business Park
Station Road, Heckington
Sleaford, Lincolnshire, NG34 9JH
Tel: 01529 469910 (+441529 469910)
Fax: 01529 469915 (+441529 469915)
Email: [email protected]
Website: www.gbs.org.uk
FREE HELPLINE:
0800 374 803 (UK)
1800 806 152 (Republic of Ireland)
OFFICE HOURS
Monday – Friday: 9.00am – 12.30pm
Registered Charity Nos. 327314 & SC039900
Trustee vacancies
Do you have a few days to spare each year? Fancy a challenge? Want to utilise your skills to benefit people
with GBS, CIDP and related conditions? Why not consider being a GBS Support Group Trustee!
If you are interested in applying or require further information, please contact: Caroline Morrice, Office
Executive, on 01529 469911 or [email protected]
Deadline for submissions for the next issue of In The Know is 20th August 2013.
Please forward all articles to [email protected]
The views expressed in this publication should not necessarily be taken as The Guillain-Barré Syndrome Support Group (GBSSG) policy. Whilst every care
is taken to provide accurate information, neither GBSSG, the Trustee board, the editor nor the contributors undertake any liability for any error or omission.
In The Know Summer 2013
Patrons
Professor Richard Hughes
MD FRCP FMedSci (Medical Patron)
Air Marshal Ian Macfadyen CB OBE RAF
Letter from the
Office Executive
Founder and Honorary President
Glennys Sanders MBE
Board of Trustees
Medical Advisory Board
Chairman Dr. John Winer
Secretary Dr. Jane Pritchard
Members:
Professor H. Willison
Dr. Claire White
Dr. John Nixon
Karen Bull
Dr. Rob Hadden
Dr. Anne Fowlie
Dr. Mark Busby
Dr. Michael Lunn
Ex-Officio
Chairman of the GBSSG
Office Executive
Staff
Office Executive Caroline Morrice
Charity Officer Lesley Dimmick
Support Officer Gill Ellis
Others
Editor Debra Anderson
The AGM and Conference went very well, with a great
selection of speakers covering a range of subjects
– all the details are included. The AGM saw the
members voting to change the charity to a Charitable
Incorporated Organisation from 1 January 2014. This
change will give the charity an opportunity to rebrand;
one of the priorities was to ensure our name reflected
the range of illnesses that we support and it was
agreed with the Medical Advisory Board that GuillainBarré & Associated Inflammatory Neuropathies (GAIN)
was most suitable. Members have the opportunity to
vote on the new logo and the entries are at the back of
this magazine.
Some of you will have received your membership
renewal and will have seen that we now have a single
membership fee of £15 per household. Members are
able to vote at the AGM, and will receive copies of the
magazine either by post or email. Supporters do not
pay a membership fee, are not eligible to vote and
receive the magazine by email; however if they wish
to have a hard copy there is a subscription fee payable
to cover costs. It was also agreed that all membership
is going to run from 1 July to 30 June, so during this
next 12 months your date will be adjusted and the
subscriptions charged pro rata (this does not affect
those paying by standing order or direct debit). Since
the conference 25% of renewals have opted to receive
the magazine by email.
The next few months are going to be busy, and to help
us in the transfer to the new organisation, please can
I ask that those members who have an old standing
order mandate to Lloyds Bank return the form you
recently received from us. The Lloyds Bank account will
be closing on 31 December 2014, and all membership
payments need to be going to the CAF Bank.
Alternately if you wish to pay monthly you can set up a
direct debit; just contact the office for details – you will
need to have internet access to use this system.
in the know
Chairman James Babington Smith MBE
Charity Secretary Jacqui Cooper
Treasurer David Wada
Elected Members:
William Harmer
Russell B. Hamilton
Bridget Allerton
Chris Fuller
As you will see the conference report is included
in this issue of In the Know. It was decided that the
content and quality of In the Know was so good that
there was no longer a requirement to have an annual
journal as well. Therefore, Reaching Out will no longer
be published; instead you will receive the four copies
of In the Know each year, either through the post or
electronically if you prefer.
Have a great summer!
1
The 2013 Annual
General Meeting and
Conference
in the know
Caroline Morrice
This year we met in the De Vere Village
Hotel on the Wirral on 20 April. Many
people arrived on the Friday where we
gathered for an informal meal and chat.
side we have more volunteers than people to visit;
maybe these volunteers might like to consider how
else they can support the Charity like the Helpline,
starting a branch or creating a fundraising team. We
have plenty of ideas so please ask us what else you
could do.
The day started with a review of the charity in 2012
before the main business of the AGM.
Membership has dropped overall by 52 during 2012
and friends have increased by 308.
Caroline Morrice – The support of patients and
their families remains at the heart of our work.
In 2012 we had 500 requests for support, 75% with
GBS, 4% with Miller Fisher syndrome, 20% with CIDP
and 1% unidentified diagnosis. Of these 198 asked
to speak to a local contact, 29% of the total, and 73
local contacts were employed. This is an increase on
last year, but we are still finding that many people
rely on the internet and using social media to chat
with others in a similar situation. Although the
use of the internet and social media does not suit
everyone, as a charity we need to ensure that our
information is available to all and in a format to suit
those affected by the illnesses.
The helpline received 800 calls in 2012, a drop of
17% over previous year. Although we have seen a
drop in calls coming through, the fact is that the
facility is there, and is extremely important. If we
only spoke to one person and helped them it makes
it worthwhile. We used 20 volunteers to man this
valuable resource.
The welfare fund continues to receive requests for
support, and we have been able to offer help to
many families again this year. Sixteen applications
were received of which 13 were approved, 1
rejected and 2 withdrawn.
The Branches around the UK continue to be active,
but as ever there is scope to increase the number of
Branches across the UK.
We have seen an increase in the number of
volunteers coming forward with 20 being
taken on during the year. This ensures that
we have a good mix of people available to
help out when needed. Local contacts are
provided with a pack of information about
all the variants as they may have to visit
someone with a slightly different diagnosis to
the one they are familiar with. On the down
2
The internet is now our most important first point of
contact for those seeking help and information and
the new website is almost ready and will be up and
running for July. It will have a fresh look and greater
capability; one of the new elements will be to allow
the newsletter to be received electronically.
The GBS Support Group site on facebook continues
to be a major forum for discussion and now has
over 2000 members. This forum is monitored by a
number of people and they do their best to answer
questions and weed out the problems.
Twitter is also a popular tool for spreading the
word and we are looking at ways of increasing our
followers and utilising this to support the Charity.
The information booklets are still issued to all
new referrals and this information is up to date
as we have a rolling programme of review by our
Medical Advisory Board. New information leaflets
are considered and will be added to the list as
appropriate. Again many people download the
information from the internet and the new website
will make this a little easier to achieve.
2012 saw a drop from last year, however last year
there was a legacy of £110,000 which we have not
repeated this year! Given the current economic
situation fundraising activity is very good, and it is
worth noting that most money raised for the group
is by people that are not registered with us. Many
F311/%7*
06#%,',))*
:.;.//+,9'
L!
L!
L!
L!
L!
4,A,%%#-)*
M,-1-$',*
+,-A#%,*K3'>*
N/.#-*H%#'.",)*
;,&<,%)"$1*
GHF*
!=IJ*
o!
o!
o!
o!
+,<)$7,*
86$O,%*
K#.,<//P*
N,#Q,7)*
;KF*
?7",%*
remain anonymous, choosing to use an on-line
fundraising site such as Justgiving or Virgin money
giving.
An amazing range of events take place throughout
the year to raise funds, from cake sales to the more
energetic cycling, running and climbing events.
However you raise money, we sincerely thank all of
those people who raised funds in 2012 and who
continue to raise funds for the Group. In fact just
before we left the office yesterday we received
£1000 from a livery company.
So what does the future hold? We are always in the
market for applications for new trustees so if anyone
is interested please have a chat with me and I will
get an application pack to you. It is a voluntary
role and one that anyone with an interest in the
governance of the charity would find rewarding.
2016 marks the 100th anniversary of the pioneering
research carried out by Guillain and Barré. Some of
our supporters have started fundraising against the
Centenary appeal but we still have a way to go to
reach the £1m we would like to use for essential
research. If you have any ideas or a desire to scale
Everest or the cake stall at a garden party, Lesley
would love to hear from you.
We have four guaranteed places in the cycling event
RideLondon-Surrey100 2014. This event attracts top
cyclists on the back of London2012 which started
people thinking ‘sport’ so if you or anyone you know
wish to take part we would love to hear from you.
You don’t have to be Bradley Wiggins or Victoria
Pendleton to take part – obviously beating them
would get you noticed!
We wish to continue developing the ways in
which we can support patients and members
K3'>*4#$)$'2*
L!
L!
L!
L!
L!
CDEC*S*TEEUVWDX*
I/'#:/')*
K3'>%#$)$'2*
N,2#.$,)*
**
8",*K373%,*
o! 8%3)7,,)*
o! K3'>%#$)$'2*
text: GBSG11 £(amount) to 70070
•! 4$>,N/'>/'SF3%%,BEDD*
o! F311/%7*
o! 06#%,',))*
•! @,6)-,O,%)*
•! J%,))*
o! !/'A,%,'.,*CDEY*
o! CDEZ*#'>*<,B/'>*
More recently we have received a lot of media
coverage through the national and local press, with
one story making it into all the national papers
and also on to BBC tv and radio in Yorkshire and
Lincolnshire. Also on the back of that we were on
the BBC South East tv news talking about another
case. I am aware that some of you saw these
broadcasts and I hope that we will be able to build
on this around the UK.
We are continuing to target the medical
professionals with information, but we do rely on
members and friends to let us know of any gaps so
that we can add them to the mailing list.
The newsletter In The Know has over the last couple
of years changed from a simple newsletter into
a full blown glossy magazine and so it has been
decided that In The Know and Reaching Out will
be amalgamated and the Summer Issue will be a
bumper conference issue. Please keep sending your
articles for the magazine to Lesley; you will find the
deadlines for submissions in each publication.
The 2014 conference will be held on 17 May in The
Village Hotel – Swansea. Any suggestions you make
on the feedback form that can help with planning
next year would be welcomed.
Obviously 2016 is due to be a big year and the
conference will be held in Scotland on the weekend
of 25 June; planning has started and we will give
updates as we get nearer the event.
We have to consider the future conferences and
2015 may be the time to hold an AGM with a lunch
and with a speaker ; there will be more about this in
the October magazine.
One of the proposals put to the members resulted
in the simplification of the membership categories
being adopted. This gives members and supporters
the option of receiving all their correspondence by
email. We can report that members and supporters
renewing their subscription have responded well
to the new system, with 25% opting to receive
newsletters by email.
in the know
Finally, and yes I know I mention it every year for
which I make no apology, we have all heard of
Gift Aid and would like to remind people what a
difference gift aiding your donation makes to the
charity’s income. As long as you are a UK tax payer
you can tick the gift aid box. This allows us to get
“free” money from HMRC worth 25pence for each
£1 donated. In 2012 we received an additional
£5972.22 as a result of gift aid. 2013 changes to
the system will now allow us to claim gift aid on
the proceeds of collection boxes, so please ensure
that you complete the form and return to Lesley
everytime you empty the box. This has the potential
to boost our funds and we should never miss an
opportunity to receive money from the tax man!
alike to ensure we can reach all affected by these
illnesses. The introduction of a mobile website to
run alongside our new website is happening and
embracing Facebook and Twitter must be a part of
the future.
The proposal to convert to a Charitable Incorporated
Organisation (CIO) was adopted and is scheduled
to come into being on 1 January 2014. Watch
out for details on an additional General Meeting
taking place later this year to formalise the
changes. The new CIO would come with a
new name which embraces all those people
we aim to support and help – Guillain-Barré
and Associated Inflammatory Neuropathies
– GAIN. A competition to design a logo was
held and your opportunity to vote for your
favourite entry is at the back of the magazine.
3
Conference
in the know
Amanda Woodhall
!"#$%&'(#)!&*&+),-"+&.(*/0)(12)
*/-)"3-)&%)3"4'"*(1-&"3)
566"1&7#&4"#518))
!"#$%#&'((%#))&
*+,-(",./,)#-&.0+/1#)1.2&$,-.+&
Amanda Woodhall on Multifocal Motor Neuropathy (MMN) – this is
a rare disorder affecting only motor nerves. About 1 in 200,000 have
it; typical age of onset is 40. It was first recognised 1986. It presents
with progressive limb weakness, normally in the hands and fingers.
For diagnosis, we look for antibodies in the blood, protein in the
spinal fluid, and nerve conduction block.
Unlike CIDP there is only one treatment: IVIg. Plasma is taken from
about a thousand donors and mixed to produce IVIg. The treatment
works for from two to eight weeks; most patients need treatment
at varying intervals. We’re not exactly sure how it works. It’s very
expensive so its use is governed by the Department of Health to
ensure it’s only being used for the right patients.
In 2008 we began switching MMN patients to subcutaneous
immunoglobulin (Subcut). They can then manage treatment at
home. It’s less intrusive, but we need expert patients – patients who
are able and willing to undertake their own infusions. On the whole
our patients on subcut are doing very well, and we are about to start
CIDP patients on subcut. Michael Tooze, one of my patients, will talk
about his experience.
!!,)
•! ?(+-)566"1-96-25(*-2)1-"+&.(*/0)(;-'$17)6&*&+)1-+:-3)
@! A9BC)ADDEDDD)
@! !-1)F)G&6-1)(..+&H56(*-)+($&)B8ICA)))
•! J7-)&%)&13-*)*0.5'(##0)BD9KL)0-(+3)&%)(7-)=6-(1)&13-*)(7-)MD)
0-(+3>))
•! N5+3*)2-3'+54-2)40)?&*/)!"#$%#=AOPI>)51)QG5*R-+#(12)S)T(++0)S)
U#(+V-)=AOPP>)51)*/-)WQJ))
•! T-3*&1V)!"#$%#=XOPP>)-3*(4#53/-2)*/-).&3354#-)("*&566"1-)
1(*"+-)&%)*/-)253&+2-+))
•! T(*/&7-1-353)1&*)%"##0)"12-+3*&&2)Y)'#-(+)*/(*)5*)53)%&'(#)
2-60-#51($&1)
3
!"#$%&'(#)!&*&+),-"+&.(*/0)
•! !"#$%&'(#9)6&+-)*/(1)&1-)(+-()
•! !&*&+9)6-(13)*/(*)*/-)1-+:-3)(+-)(;-'*-2)(+-)
3.-'5<'(##0)*/&3-)*/(*)'(++0)3571(#3)%+&6)*/-)
4+(51)(12)3.51(#)'&+2)*&)*/-)6"3'#-3)=6&*&+)
1-+:-3>)
)
•! ,-"+&.(*/09)253-(3-)&%)*/-)1-+:-3)
2
Michael Tooze: I’m now 67, a retired company director. I was
diagnosed sixteen years ago with MMN, despite which I’m still going
strong – I play golf, do Scottish dancing, gardening, and I volunteer
with the NHS, so I stay fairly busy.
Twenty-five years ago I had a new company car and found I couldn’t
push the button on the hand brake; I assumed the problem was just
that it was a French car. Then I got twitching in my shoulder, which I
still have. Then began problems with my left foot – it was then that
I went for medical advice. The only further deterioration I’ve had is
lifting my arm in certain ways, but I have learned to adapt. That’s
what this disorder is all about – adapting. My left foot has improved
because other muscles have taken over, so I’m no longer limping. I
was on BUPA, who had never heard of MMN.
IVIg was an all day event; I had to wait round for a doctor to
cannulate me because at the time nurses weren’t allowed to do it.
When it was determined that I had a chronic condition, I moved my
care from BUPA to the NHS.
4
4
Amanda put me on more concentrated IVIg, then in time invited me
to join home treatment – which has been a very positive step. Every
two months they telephone me to determine what I need and then
deliver it to my home. Amanda gave initial training. [He shows the
pumps and indicates where he infuses the Ig.] I can put the pump
in a bag that I carry round my waist, then can walk around: it’s much
more convenient than going to hospital for infusion. Rather than
nurses having to record batch numbers, etc., Baxters gave me a smart
Conference
Michael Tooze
There are a number of benefits with subcut: I can control when and
where I have treatment; I don’t get peaks and troughs as I was when
having treatment every five weeks because I can have treatment
every week. Early on I had a few side effects – swelling, etc. – as my
body got used to it, but I persevered and it’s working very well now.
It’s stabilised my condition. My hope is that this helps with NHS
expenses. I’m very concerned about health care in the community – I
write software for this, working to get patients out of hospitals and
into home.
Question: Can you drink alcohol in moderation?
Michael: I think I’d be abusing the system to be overdrinking, but I
can drink a bit. I’ve had to adapt in some ways. I’ve found that MMN
has improved my golf in some ways – the way I swing my arms
sometimes gives me a better hit.
Question: What about foreign travel?
Michael: I can take everything with me.
Amanda: one patient is an underwater photographer who travels all
over; he takes everything with him. He carries a letter explaining why
he has the drugs and advises airlines ahead of time, and so far has
had no problems.
Question: Does the Ig need to be refrigerated?
Michael: I have a fridge, but the product will last a long time without
refrigeration.
Amanda: I would advise patients to take the drugs in a cool bag to
avoid high temperatures. But it won’t be problematic.
Question: How do you know it’s working?
Michael: I could tell I was going down on treatment every five
weeks. With MMN if you lose a part of your body it’s liable not to
come back, so it’s important to hold stable. When I was in Nigeria in
the heat I found I didn’t go down as badly, but in colder climes I need
level treatment.
Amanda: I do on occasion challenge patients to try to reduce their
dose to see if they can do without the full amount.
Michael: I can sense when I’m going down. I’m concerned about the
cost but also want to maintain a good quality of life.
Question: Does MMN progress to other muscles?
Michael: it seems to: right now it seems to be affecting my right
hand. But I’m also getting older. Of course, if I start forgetting dance
steps I’ll start to worry!
Jamie: I am a CIDP patient and on subcut and would encourage
everyone to try. It does not work for everyone.
U#515'(#).+-3-1*($&1))
•! Q#&G#0).+&7+-335:-)&+))
))))(3066-*+5'(#)#564)G-(V1-33)
•! ,&)3-13&+0)(41&+6(#5$-3)))
•! !&*&+)35713)51'#"2-))
)))).+-2&651(1*#0)253*(#)G-(V1-33))
))))(12):(+0517)2-7+--3)&%)(*+&./08))
))))N517-+)-H*-13&+)G-(V1-33)-(+#0))
))))3571))))
•! Z0.5'(##0)51:&#:-3)*/-)(+63E)&+)A)(+6)=PD[>E)
4-%&+-)*/-)#-73)
•! U+(6.3)S)%(3'5'"#($&1)51)*/-)(;-'*-2)#564)=BD[>)
)
5
!"#$%&'(#),-"+&.(*/0)=!!,>)Y)25(71&353))
•! \5(71&353)4(3-2)&1C)
–! #(4)*-3*39)3-+"6)X7!)(1$4&25-3)
4#&&2)(1$9]!A)(1$4&20)$*+-3)
=FACIMDD>)X7!9]!A)(1$4&25-3)
(+-).+-3-1*)51)(..+&H56(*-#0)))))))
LD[)&%).($-1*3)=BL9PD[>))
–! 3#57/*#0)-#-:(*-2)UQN).+&*-513)
–! -#-'*+&./035&#&70)Y)/(##6(+V)
.+-3-1'-)&%)6&*&+)1-+:-)
'&12"'$&1)4#&'V)=U^3>)(*)(10)
#-:-#)))
–! '#515'(#)/53*&+0)
6
Z+-(*6-1*)53)X66"1&7#&4"#51)
•! ^#&&2).+&2"'*)6(2-)".)&%).&&#-2)
(1$4&25-3)
&&340+.&&(5&6"",$(7)(8,)1$&&
•! _H*+('*-2)%+&6).#(36())
))
•! `:-+)ADDD)2&1&+3)6(V-)".)&1-)
4(*'/)
•! _;-'$:-)%&+)4-*G--1)B)Y)P)G--V3)
•! T+-'53-)6-'/(1536)40)G/5'/)X7)
*/-+(.0)G&+V3))/(3)1&*)4--1)'#-(+#0)
-3*(4#53/-2)
•! _H'+"'5($17#0)-H.-135:-))
•! a57/#0)7&:-+1-2)40)\-.(+*6-1*)&%)
a-(#*/)+-b"5+-6-1*3)
)
7
in the know
phone to provide information to Amanda.
X66"1&7#&4"#51)&.$&13)
•! T+-)BDDP).($-1*3)G-+-)&1#0)*+-(*-2)G5*/)
51*+(:-1&"3)566"1&7#&4"#51E)&c-1)+-b"5+517)
/&3.5*(#)(265335&13)%&+)*+-(*6-1*)
•! X1)BDDPE)3*(+*-2)*&)&;-+)*+-(*6-1*):5()()
3"4'"*(1-&"3)+&"*-8)a&6-)*/-+(.0)G5*/)
56.+&:-2)b"(#5*0)&%)#5%-)(12)+-2"'-2)352-)
-;-'*3)
•! T($-1*3)51)'&1*+&#))
•! T($-1*).-+3.-'$:-)%+&6)!5'/(-#)
8
5
John Winer
Jane Pritchard
Hugh Willison
in the know
Ask the Experts
Members of our Medical Advisory Board Chairman – Dr John Winer, Queen Elizabeth Hospital; Secretary –
Dr Jane Pritchard, Charing Cross Hospital; Professor Hugh Willison, University of Glasgow; Dr John Nixon,
Lancaster; Dr Shakti Agrawal , Paediatrician Queen Elizabeth Hospital; and Dr Claire White, Kings College London
were joined by Dr Bart Jacobs, Netherlands to answer questions from the floor.
Question: We hear that there are only a few people annually who contract GBS, but now it seems
more. Is it becoming more common?
John Winer: Probably not. Sometimes the numbers depend on the database being accessed. And it may be
that perhaps there are more some years, and fewer in others.
Jane Pritchard: There are clusters and outbreaks on occasion.
Hugh Willison: More and more people know someone who has had GBS: it’s not unusual in seventy years
of life to meet people who had it. And there is more interest in rarer diseases these days, which brings more
cases to light. We are better, too, in the West diagnosing it; but in Africa, etc., other diseases overwhelm the
numbers of GBS patients – they have to deal with malaria, TB, other more common diseases that we don’t
see often in the West. But in some countries there are more incidents of GBS, e.g. Asia with axonal forms while
more demyelinating forms in Britain. It’s a big project to gather information.
Bart Jacobs: I have worked in Bangladesh, and half of intensive care units are filled with GBS patients, but it is
possible that perhaps all severe cases of any illness are gathered in that hospital. It would also be that illnesses
that bring on GBS are more common in those countries.
Question: More vaccinations, more GBS?
Shakti Agrawal: In paediatrics we don’t know if it’s vaccinations or that children are more likely to have
infections, etc., which bring on GBS. In our area are more children who travel outside the UK. But regarding the
relation of vaccinations to GBS, we haven’t seen any that are definitive.
Bart Jacobs: The swine flu thirty years ago in the USA indicated that there was something in the vaccination
that triggered GBS. But to make a definitive statement we also need to know the background of the flu and
the drug, and it needs to be remembered that the more new vaccines, the more likely we’ll see side effects.
Often it is more advantageous to have the vaccination even at a risk.
Question: Is the change from Vigam™ to Privigen™ good or bad?
John Nixon: Each product differs in how it’s made. There’s no clear evidence that one product is better than
the other; some are licenced when others aren’t because of lack of clinical studies. I have found that some
patients note improvement or worsening; individuals may find differences, and sometimes doctors can even
note the differences. We simply use the new product for a time to see how it works and move the patient back
if necessary. Some centres only use one brand, others may use several brands.
Jane Pritchard: Some PCTs rotate brands because of supply.
John Winer: We don’t really know what in IVIg works, so can’t determine which one works best. And even
different batches of the same brand differ – some have less of the active ingredient.
Hugh Willison: We don’t know how it works, and have problems determining whether patients are better
or worse – for CIDP it’s hard to put a hard number on patients, and hard to know if improvement is from
treatment or from the disease itself changing. Ig costs about £30 per gram, so about £1,500 per treatment, so
we as prescribers are constantly under pressure to control prescription.
Question: For a person with IVIg, what about using steroids and steroid-sparing agents. What are the
side effects?
John Winer: There’s been a big discussion on this, but no consensus of thought whether to use a single type
of treatment, or to add additional drugs. If you need a high dose of steroids, it might be better to also have an
immunosuppressant to cut down the steroid. Which immunosuppressant to give: there is no clear guideline
yet. We want to set up databases of CIDP patients to try to determine this. The starting steroid level is about
60mg, then reduce to get a maintenance dose which is as low as possible. If a patient requires a have high
dose, perhaps it would be better to have a sparing agent.
6
John Nixon
Shakti Agrawal
Claire White
Bart Jacobs
Question: How do you deal with a doctor who doesn’t believe there’s anything wrong with you?
Jane Pritchard: Keep going back, or see a different doctor.
Hugh Willison: One problem in clinical medicine is that doctors are going to be wrong on occasion. GPs
can’t refer people for every symptom. The art of medicine is to determine when something will go away on
its own. With GBS some have nonspecific symptoms. Both patient and doctor need to be persistent.
Jane Pritchard: Ask GP for second opinion, or if possible ask the neurologist for a second opinion.
Shakti Agrawal: In neuropaediatrics, in a young person or child who presents with inability to walk, etc.,
it can be difficult. I have a two-week old with GBS. Diagnosis is not necessarily black and white. We get
referrals from other paediatricians who aren’t sure what’s wrong. Are there functional changes? We need to
do investigations, and if everything appears okay then may have to consider psychological evaluation.
John Nixon: Things can be missed but there’s a better understanding now than when I was in medical
school. It’s still not very straight forward, but understanding of these diseases is improving.
Bart Jacobs: Sometimes a doctor doesn’t recognise longer-term symptoms; sometimes a GP doesn’t
recognise muscle cramps that return some months later. There’s a book of some 250 pages dealing with
GBS – it’s a bit too much for a GP who may never see a case. Shorter material written for doctors is very
helpful.
Hugh Willison: Myasthenia gravis takes several years to diagnose – the main symptom is feeling tired. How
many here had problems being diagnosed?
Delegates: One patient says she took three months; others were diagnosed by junior doctors when the
disease was missed by neurologists; some say that they have continuing problems although the doctors say
there’s nothing wrong with them – some days you feel fine and others awful.
Hugh Willison: GBS leaves irreparable damage, so residual symptoms are well known. When the doctor
says there’s nothing wrong, they often mean there’s nothing they can do about it. We also need to be
aware that there is recurrent GBS or that it can change to CIDP, rather than assuming that the patient is just
suffering residuals.
John Winer: Sometimes information given is old, while better information is available.
Delegate: Patients are very frustrated sometimes: GPs can be lethal when they don’t know that they don’t
know; everything needs to put in writing rather than just talk so they’ll have to respond.
in the know
John Nixon: There are different choices for different people. I have more on IVIg than on steroids, but that is
much based on patient desire, often based on side effects, etc. For immunosuppressants, we try to work out
whether it works or not, e.g. I use methotrextate but if in a few months it doesn’t work, I take the patients off it.
Jane Pritchard: Most people know the side effects of steroids and we can do a lot to counteract them, but
others we have to monitor more closely, and some side effects put people off. IVIg isn’t without side effects
for some people.
Bart Jacobs: We start with IVIg usually, but with a couple who didn’t work we found steroids have worked –
it makes us wonder if maybe CIDP isn’t a single disease but several related ones which responds to different
treatments.
Question: In Miller Fisher, what causes hallucinations? I was in hospital for nine months.
Hugh Willison: This sounds like MFS with GBS. Intensive care GBS patients often have hallucinations.
John Winer: Drugs, the constant lights in ICU, etc., can cause hallucinations in any patient, but it’s perhaps
worse for neurological problems.
Delegates: I had hallucinations even without the drugs; you can’t communicate that you’re having
hallucinations to doctors; I thought members of staff were trying to kill me while I was in ICU; you lose track
of reality.
Jane Pritchard: If doctors don’t know you’re having hallucinations they can’t do anything to help you.
Often those on vents are sedated. Infections can also cause hallucinations – many things can cause them.
Bart Jacobs: Doctors should ask their ICU patients if they’re having hallucinations. We need to pay more
attention perhaps.
Delegates: It seems a lot of people have visions of death and hell.
7
Question: Regarding MFS, why do I have a lack of hunger and thirst after nil by mouth and on a peg?
Jane Pritchard: That’s not something I’ve ever come across. The drive to want to eat and drink is from the
central nervous system. Most patients with pegs still want to eat.
Caroline Morrice: I came across a site that deals with people with alternative forms of feeding.
www.pinnt.com Patients on Intravenous & Nasogastric Nutrition Therapy
in the know
Question: Can we donate our bodies to science in an effort to help find a cause and cure?
Jane Pritchard: Tissue banks are available, but I don’t know of anything for GBS/CIDP. Routine post mortems
don’t normally take nerve tissue.
Hugh Willison: We prefer to study patients while alive. We’ve done a lot of study of end of life GBS patients,
etc., but not at the early stages: these are where we need studies. But we can’t do some tests on live people.
Additionally, nerve biopsies aren’t done easily. We really need other methods to examine nerves.
Bart Jacobs: Biopsy means that the nerves don’t work again. But in skin nerves the nerves can regenerate. We
have done some skin biopsies in the acute stage of GBS to try to understand what’s going on at the beginning
– we can sometimes determine if the patient will have autonomic problems by skin biopsies.
Question: Is there a connection between GBS/CIDP and diabetes?
John Winer: Peripheral neuropathy is common in diabetes, and some with diabetes also have CIDP – it
appears to be more common than by chance. Perhaps the genes for diabetes also cause CIDP.
Jane Pritchard: Sometimes with patients with diabetes it’s hard to differentiate between that and CIDP.
John Nixon: If I had a CIDP patient with diabetes, I would be more careful about treatment because of steroid
use.
Hugh Willison: Statistics can be confusing, and trying to differentiate between what’s causal and what’s
coincidence is hard.
John Winer: CIDP is more common amongst diabetics.
Question: What are the ten most important facts about GBS and CIDP from a medical standpoint?
Bart Jacobs: No two patients are the same: cause, preceding infection, prognosis, etc.
Jane Pritchard: It’s necessary to measure vital capacity – even without machine indicators, we need to
determine whether or not the patient needs ventilation.
John Winer: Start treatment as early as possible to prevent nerve damage.
John Nixon: GBS can be mistaken for other diseases, so the patient needs to be seen by neurologist as soon
as possible.
Hugh Willison: We really do need to make a huge amount of progress is determining the cause – until then
we can’t find a cure.
Shakti Agrawal: Pain is always a presenting symptom in children and needs to be managed aggressively.
Once the child is walking we have to determine on-going problems, particularly pain and residuals.
Hugh Willison: What do patients say is most important?
Delegates: Listen to patients; don’t forget physio; let the person know there’s life after GBS; nurses need
to understand what patients can and can’t do – often they don’t think you’re trying hard enough; need to
communicate with family; listen to parents in cases of children with GBS or CIDP.
Claire White: Patients need to have physio, and the rest of the team need to work with the patient,
particularly in pain control.
Shakti Agrawal: We like to think we always listen to parents, but sometimes there’s a lack of communication,
particularly when the acute and critical stage is over. On the general ward, there are not as many doctors and
nurses.
Delegate: My son got info from GBSSG that enabled him to ask the right questions.
Question: Is 2016 still the goal?
Hugh Willison: That year is a big anniversary which is why we set the goal for that year. If a hundred years
after the disease was first described it could still not be cured, we need to work harder. Progress so far has
been remarkable, but it’s tiny little bits of information that add up. I don’t think we’re too far away from an
answer, but the real challenge is to convert that to new treatments. I’m optimistic that we’ll improve treatment,
and that toward the mid part of this century we’ll learn more of regenerative methods – there’s much work
being done on the brain, but not on peripheral nerves. Although the peripheral nerves will regrow, they don’t
always grow normally.
8
!
HINT - Home exercise
for Inflammatory
Neuropathy Trial
Research Updates
RCT comparing tailored home
exercise with advice and usual
care for long-term disability in
adults with GBS, CIDP or PDN
Claire White
But we need a large-scale randomized clinical trial to ensure that such
exercise will be helpful generally and cost effective. We need volunteers
who have had disease for some time and are stable and who are not
getting much on-going treatment – we hope to look at those with
residuals, who have difficulty with some everyday activities. We’re
looking for those who are generally recovered but not badly affected,
etc. They need to be able to walk a short distance without help. We
will contact their doctor to ensure their diagnosis and that there are
no other health problems. The trial will mean that some patients get
advice only, others will get a full clinical assessment and individualised
specific exercises. We will be able to provide some funding for gym
activity, may be able to hire a static bike if necessary.
Jane Petty is doing part of an assessment, a questionnaire, looking
for the impact of the diseases on everyday life, particularly such
things as fatigue, mood, quality of life, how much physical activity the
patient can do and any improvements you’ve seen, and how you feel
about your disease. Do you use walking aids? How does it impact on
employment – how does it impact on society? At twelve weeks we’ll
re-evaluate for immediate changes, and do assessments periodically
thereafter.
We would be interested in anyone who would like to join. We need
seventy people at least – we have fifty-six so far, with thirty-nine
screened for eligibility. The patient will need to be within two hours of
London.
We won’t have data for evaluation for another eighteen months at
least – we hope in two years to have results regarding the usefulness of
exercise. We have already discovered that we need more information
on people’s ideas of their own health, what’s it’s like living with the
condition and exercise, so we want to do another small study. What is
your experience of living with the disorders? These need to be people
who aren’t part of the main trial.
Volunteers
HINT - Home exercise for Inflammatory
Neuropathy Trial
Assessment
Advice &
information
12 week
follow up
Randomisation
Tailored home
exercise
programme
12 month
follow up
Interviews
Numbers of volunteers
"#$!%&#'(%'!
)*!+!!
,%-..#./!
01!
2&'!.345463.!
*!
!
74'8/-(9#:!
/.%34#./:3&;'!%&#'(%'!
!
<!
"%=>.!
!
?@!
!
A.B.--./!
?)!
C&#;.#'./!
D1!
$"
#!(&'"
!!"
#$%&'"
)*++)"
,-."
Health beliefs
Interviews
Onset
How you feel about
your neuropathy
How you cope with /
manage your condition
How serious is it and how long will
it last?
Treatments available
Friends and family
Seek information
Looking after yourself
Not thinking about it
Talking to others
/0123451"
6174185"9"
Experience of
living with the
condition
What to do if you are interested
•! Talk to one of us at lunch or teabreak
–! 15 volunteers for interview about health beliefs
•! Contact us at: [email protected]
or on 020-7848-6331
in the know
Claire White: HINT – starting in June 2012 a study of the effect of
exercise on longstanding residual neuropathies was undertaken.
The benefits of general exercise are well known: reduction in health
problems normal for older people, improvement in mood and
wellbeing. This is known to be true in specific health problems. But will
exercise work with inflammatory neuropathies, particularly aerobic and
strengthening exercise? Thus we have undertaken a trial of prescribed
amounts and duration of exercise. Thus far we’ve found clinical
improvement and also changes in disability levels.
•! Look out for adverts on
www.gbs.org.uk
Question: Is the objective to be fit enough to return to work, etc.?
Claire White: Not necessarily, but we aim to see if exercise will help
with the return to more normal life.
Question: With the government looking at benefits, if I could resume
work they might take my benefits away.
Claire White: We’re aware of that so are doing discussions of the cost
effects as well before taking on patients.
9
Hugh Willison
Govind Chavada
Bart Jacobs
in the know
IGOS: the way forward for GBS research and discovery (a summary of their conference presentations).
Govind Chavada, Bianca van den Berg, Hugh Willison and Bart Jacobs.
IGOS was introduced to the GBS Support group
at the Liverpool AGM in April 2013 by Dr Govind
Chavada, our IGOS UK clinical research fellow
jointly funded by the GBS Support Group and the
University of Glasgow. Dr. Bart Jacobs, international
leader of IGOS from the Rotterdam GBS Research
Group, Netherlands, also attended the meeting
in Liverpool, along with Professor Hugh Willison
and Dr. John Winer who are also both involved in
coordinating IGOS UK. Dr. Bianca van den Berg,
the clinical research fellow in Netherlands who
coordinates international activities and co-authored
this article was holding the fort in Rotterdam.
After the AGM, Bart, Govind and Hugh returned to
Glasgow for further in-depth discussions about IGOS
plans for the future. A four hour car journey with
non-stop debate about GBS ensued.
Although we have achieved a huge amount of
progress in our understanding of GBS over recent
decades, in terms of cause of disease and available
treatments, there are several major issues which
still remain unsolved. One of the major aims of
IGOS, the International GBS Outcome Study, is
to comprehensively address these issues on a
worldwide scale, bringing together patients and
researchers in a manner that has never been
achieved before. Many local and national surveys
and studies have been conducted on GBS and
gathered extremely useful data in the process. It
is on the shoulders of these studies that IGOS has
been constructed. In doing so, we can truly state
that IGOS is a worldwide first, and hopefully sets
out the model for future studies that will inevitably
follow over the coming decades.
What research questions is IGOS addressing, and
hoping to achieve answers to?
Firstly, GBS still remains a clinical diagnosis in
that there is no single test which can confirm the
diagnosis. This means that clinicians have to rely on
patient history and clinical examination findings that
do not always point in the right direction, as many
support group members will know from their own
experience of the early phase of the disease. Lumbar
puncture and nerve conduction studies can be
normal in the initial stage of GBS, which doesn’t help
10
the diagnostic situation. These factors may lead to
delay in the diagnosis and treatment and therefore
there is an urgent need for development of the early
diagnostic marker of the disease, ideally in the form
of a simple blood test.
Secondly, GBS has a variable clinical course
in different individuals. Whilst many patients
completely recover, others are left with severe
residual disability. In the initial phase of the disease,
around one third of cases require intensive care
therapy. In the longer term, about 20% of GBS
patients do not recover well, remaining unable to
walk 1 year after onset. In up to 5 % of patients, GBS
is fatal. Currently there is little information available
to predict the disease course and overall outcome
in individual cases and therefore we need good
prognostic markers which can reliably identify
patients with poor outcome so they can benefit
from clinical trials of more intensive treatment.
To address the above important issues, a group of
peripheral nerve specialists within the group called
Inflammatory Neuropathy Consortium (INC) have
launched a worldwide observational study called
International GBS Outcome Study (IGOS). IGOS is
a web-based registration system that provides the
framework to recruit at least 1000 GBS cases around
the world over a 3 year period. IGOS has been
funded by a range of organizations including GBSSG
UK, GBS/CIDP Foundation International, and in
Glasgow by the University of Glasgow and by grants
to Hugh Willison from The Wellcome Trust.
The aim of IGOS is to identify the factors that are
responsible for the varying clinical and pathological
characteristics of the disease in different patients.
This is achieved by collecting and analysing the
clinical and laboratory data during the course of the
disease over a one year time scale. Analysing these
data will allow researchers to predict the disease
course and its outcome in groups of patients and
in individual cases, and to develop biomarkers
of disease. This is important because it will help
doctors to identify patients destined for a poor
outcome earlier in the course of disease than is
currently possible. Such patients might benefit from
additional therapies.
Another major aspect of IGOS is to develop
biomarkers for GBS. Principally, these are laboratory
tests looking at immune, genetic and nerve factors
that predict the course, subtype, and severity of
disease. For example, researchers have recently
identified antibodies in the blood of GBS patients
that are believed to be directly responsible for
damaging nerves. Currently their precise roles and
predictive value in GBS are unknown. To investigate
these and other biomarkers further, blood samples
are required from GBS patients. The unique
genetic makeup of individuals may contain vital
information on how nerves withstand injury and
how well they are able to regenerate. By correlating
these laboratory data with clinical information
we aim to identify the underlying significance of
these biomarkers in relation to particular disease
characteristics.
patients. As of June 2013, the UK has recruited
highest number (38) of the patients into the study,
followed by Denmark (18), Netherlands (17), USA
(17), Italy (12), Germany (6), Japan (4), Spain (3) and
Belgium (1). In the UK, we hope to recruit several
hundred patients into the database.
How far have we got with establishing IGOS?
IGOS has a web based data entry system.
After almost 2 years in the planning stage the
website was officially launched in May 2012
(www.gbsstudies.org). At present, 177 centers from
18 different countries have expressed their interest
in participating in the project, which requires local
ethical and administrative approvals. Out of 177
centers, 77 centers have achieved this and are
actively recruiting patients. 117 patients have been
recruited in to the study so far and majority of them
have been in last 6 months. This was due to increase
in the number of participating centers. In the UK,
we have 20 centers which are actively recruiting
This has been a great opportunity to introduce IGOS
to the UK GBS community, and also for the study
coordinators to meet and further develop plans.
The IGOS UK team are extremely grateful for the
financial support that the GBSSG has provided. The
results of IGOS will be published over the coming
years. The IGOS team has been delighted with
the interest in the projects from patients, the vast
majority of whom have consented to be involved. It
is important to note that patients are only able to be
recruited into if they are within 14 days of the onset
of GBS, as the database is designed to include data
from all stages of the illness, early and late. Fully or
partially recovered patients are not eligible for entry,
but may be the subject of future research projects.
Figure legend: Information on the patient recruitment into IGOS up to April 2013. The countries involved are listed in the upper figure,
alongside the patient recruitment numbers. The lower figure is the total number of cases recruited into IGOS worldwide, between May
2012 and April 2013
in the know
IGOS has made remarkable progress over last 12
months. As more centers are coming on board
we are expecting a substantial increase in the
worldwide recruitment figures over next two years.
IGOS will make an important contribution to the
existing information available to predict the disease
outcome and development of new biomarkers.
Eventually such discoveries will lead to better
treatment planning for patients with GBS.
My Blog
Andrew Markham
Andrew outlined the findings of his personal survey on GBS and CIDP. He has
a blog which will give more information www.mycidp.blogspot.co.uk
11
Recently Published Articles
Treatment of chronic immune-mediated neuropathies: impact of the rare diseases centers
network in Italy.
Nobile-Orazio E.
in the know
Source
Department of Medical Biotechnology and Translational Medicine (BIOMETRA), University of Milan, 2nd
Neurology, IRCCS Humanitas Clinical Institute, Via Manzoni 56, 20089, Rozzano, Milan, Italy. eduardo.nobile@
unimi.it
Abstract
Chronic immune-mediated neuropathies represent a heterogeneous group of mostly demyelinating
neuropathies thought to be caused by an autoimmune response to peripheral nerve antigens. They include
chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related variants, multifocal motor
neuropathy (MMN) and neuropathy associated with an IgM monoclonal gammopathy with antibody activity
against myelin-associated glycoprotein (MAG). Most of these neuropathies respond to immune therapy even
though their response to therapy may be different, thereby confirming that their distinct characteristics have
relevant clinical implications. While clinicians and scientists are intrigued by the desire to better clarify the
cause and pathogenesis of these disorders, the need to allow affected patients to be reimbursed by insurance
companies or the national health system can lead to the risk of lumping all these neuropathies under the
umbrella term of ‘CIDP’ to facilitate patients’ access to costly therapies.
Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Home IVIG for CIDP: A Focus on Patient Centred Care.
Katzberg HD, Rasutis V, Bril V.
Source
Toronto General Hospital, University Health Network, University of Toronto, Toronto, Ontario Canada.
Abstract
Objective: To determine the safety and tolerability of home-based intravenous immunoglobulin
(IVIG) (Gamunex) as maintenance treatment in patients with chronic inflammatory demyelinating
polyradiculoneuropathy (CIDP) in Canada. Methods: We enrolled ten subjects with CIDP who had previously
received IVIG in the hospital setting to receive the comparable IVIG dose (1-2 g/kg/month) in the home for six
months. The patients were evaluated in the clinic at three months and at six months to evaluate their clinical
status as well as the safety and tolerability of IVIG. Results: All subjects tolerated home-based IVIG treatment as
maintenance treatment of CIDP. There were no serious adverse events related to IVIG. Subjects did experience
“anticipated” IVIG events post-infusion such as headache and fatigue, which were managed with analgesics and
supportive counseling. One subject withdrew consent at end of study due to hospitalization. This event was not
related to the IVIG. Another subject experienced a “flare” of CIDP symptoms near the end of the study, however,
completed all visits as per protocol. All subjects expressed excellent satisfaction with the individualized therapy,
and almost all (nine out of ten) patients preferred home-infusion to hospital-infusion. Conclusion: Intravenous
immunoglobulin can be delivered safely and is well tolerated outside the hospital setting in Canada in patients
with chronic, stable neuromuscular conditions such as CIDP who have previously tolerated IVIG in the hospital
medical day Care Unit.
Mortality in Guillain-Barre syndrome.
van den Berg B, Bunschoten C, van Doorn PA, Jacobs BC.
Source
From the Departments of Neurology (B.v.d.B., C.B., P.A.v.D., B.C.J.) and Immunology (B.C.J.), Erasmus MC, University
Medical Center Rotterdam, Rotterdam, the Netherlands.
12
Abstract
OBJECTIVE:
To determine the frequency, timing, causes, and risk factors of death in Guillain-Barré syndrome (GBS).
METHODS:
Prospectively collected data were reviewed from a cohort of 527 patients with GBS previously included in
1 observational and 3 therapeutic studies. Risk factors were identified by comparing deceased and surviving
patients with GBS.
RESULTS:
CONCLUSIONS:
Death after GBS predominantly occurs in the elderly and severely affected patients, especially during the
recovery phase. Future research is required to determine whether mortality of GBS can be reduced by intensified
monitoring in patients with an increased risk profile.
Diagnosis, treatment and prognosis of Guillain-Barré syndrome (GBS).
van Doorn PA.
Source
Erasmus MC, Department of Neurology, Rotterdam, The Netherlands. Electronic address: p.a.vandoorn@
erasmusmc.nl.
Abstract
Guillain-Barré syndrome (GBS) is an acute polyneuropathy with a variable degree of weakness that reaches
its maximal severity within 4 weeks. The disease is mostly preceded by an infection and generally runs a
monophasic course. Both intravenous immunoglobulin (IVIg) and plasma exchange (PE) are effective in GBS.
Rather surprisingly, steroids alone are ineffective. Mainly for practical reasons, IVIg usually is the preferred
treatment. GBS can be subdivided in the acute inflammatory demyelinating polyneuropathy (AIDP), the most
frequent form in the western world; acute motor axonal neuropathy (AMAN), most frequent in Asia and Japan;
and in Miller-Fisher syndrome (MFS). Additionally, overlap syndromes exist (GBS-MFS overlap). About 10% of
GBS patients have a secondary deterioration within the first 8 weeks after start of IVIg. Such a treatment-related
fluctuation (TRF) requires repeated IVIg treatment. About 5% of patients initially diagnosed with GBS turn out
to have chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) with acute onset (A-CIDP). It is yet
unknown whether GBS patients who remain able to walk (‘mildly affected GBS patients’), or patients with MFS,
also benefit from IVIg. Despite current treatment, GBS remains a severe disease, as about 25% of patients require
artificial ventilation during a period of days to months, about 20% of patients are still unable to walk after 6
months and 3-10% of patients die. Additionally, many patients have pain, fatigue or other residual complaints
that may persist for months or years. Pain can also be very confusing in making the diagnosis, especially when
it precedes the onset of weakness. Advances in prognostic modelling resulted in the development of a simple
prognostic scale that predicts the chance for artificial ventilation, already at admission; and in an outcome scale
that can be used to determine the chance to be able to walk unaided after 1, 3 or 6 months. GBS patients with
a poor prognosis potentially might benefit from a more intensified treatment. A larger increase in serum IgG
levels after standard IVIg treatment (0.4g/kg/day for 5 consecutive days) seems to be related with an improved
outcome after GBS. This was one of the reasons to start the second course IVIg trial (SID-GBS trial) in GBS
patients with a poor prognosis. This study is currently going on. The international GBS outcome study (IGOS)
is a new worldwide prognostic study that aims to get further insight in the (immune)pathophysiology and
outcome of GBS, both in children and adults. Hopefully these and other studies will further help to improve the
understanding and especially the outcome in patients with GBS.
in the know
Fifteen (2.8%) of 527 patients with GBS died within 6 months of follow-up at highly variable time points during
the disease course, with a median time from onset of weakness to death of 76 days (interquartile range 23-152
days). In 356 patients with an extended follow-up of 12 months, the mortality rate was 3.9%. Only 3 patients
(20%) died during the acute progressive phase and 2 patients (13%) died during the plateau phase. Ten patients
(67%) died during the recovery phase after neurologic improvement, most frequently from respiratory or
cardiovascular complications. Eleven patients (73%) were admitted to an intensive care unit during the course
of disease, but only 7 patients (47%) died in the intensive care unit. Risk factors for death were age (p < 0.001),
severity of weakness at entry (p = 0.02), mechanical ventilation (p < 0.001), delay from onset of weakness to
entry (p = 0.035), and time to peak disability (p = 0.039).
Copyright © 2013 Elsevier Masson SAS. All rights reserved.
13
in the know
14
“Using our resources efficiently and
effectively for the patients and their
care”
Dr Margaret Hewett, specialist Physiotherapist in
Neurology outpatients at the Conquest Hospital,
Hastings has been running a weekly hydrotherapy
group for patients recovering from Guillain-Barré
syndrome (GBS). By seeing patients in a weekly half
hour group session she has been able to extend the
number of sessions whilst goals continued to be
achieved, as usually patients are seen on a one-toone basis within neuro-hydrotherapy for six sessions.
Recovery from GBS, a neurological illness in which
the immune system attacks part of the peripheral
nervous system, characterised by muscle weakness,
can be slow. Exercise in the pool allows progressive
muscle strengthening in an environment that makes
use of buoyancy and warmth. The incidence of GBS
is 1/100,000 and it is unusual to have more than
one patient on treatment in the same hospital with
similar needs at any one time. The peer support,
encouragement and sharing of ideas that the group
provided was greatly appreciated. All have enjoyed
the sessions and have advanced their recovery and
will be reviewed at three months to check progress
has been maintained and is ongoing.
Fundraising
As the Charity’s Support Officer, my main role is to
ensure people receive the information and support
that is available. A huge part of this involves working
closely with our network of fantastic volunteers who
have all been affected by GBS/CIDP themselves, and
who give their time freely to help others understand
and cope with the condition. Some do this by
answering our 24 hour Helpline, while others offer
support at a local level with hospital visits to patients
and their families.
Many of our volunteers are also active in raising
awareness and funds. Time and again, I marvel
at people who push themselves to achieve great
things: running personal bests in 10k road races and
half-marathons, abseiling down mind-bogglingly
high buildings, swimming 3km across a cold Welsh
lake (without a wetsuit) or cycling 850 miles around
Scotland, to name but a few.
I have never had GBS or CIDP myself, but I thought
the best way to show my appreciation of what
others put themselves through would be to join
them in a bit of physical activity, so I signed up for
my first ever 10k road race! Thanks to the generosity
of family, friends and the volunteers who inspired
me in the first place, not only did I achieve my own
personal best, finishing in 1hour 16 minutes and 37
seconds (the first and possibly last time I’ll ever run
that far!), but I also raised a very respectable £355
(plus £70 Gift Aid) through my own Just Giving
page. Thank you to everyone who encouraged me
along the way; and to anyone thinking about doing
something equally daft, good luck and go for it!
in the know
City of Lincoln 10k Road Race
15
in the know
Tough Mudder
Gemma, an air hostess originally from Liverpool, was diagnosed with GBS in 2012 and is now making a
remarkable recovery.
My boyfriend Neil and friends took on the crazy challenge that is Tough Mudder, which is 12 miles of all terrain
muddy running combined with 22 scary challenging obstacles along the way. They started off by having to
jump into a skip filled with ice cubes and freezing water and then swim under obstacles, to get out the other
side. This was followed by crawls through muddy trenches, jumping into mud and water filled ditches, crawling
through blacked out tunnels and other crazy obstacles which included trawling through scramble nets while
being electrocuted, jumping over fire and ending on the final obstacle which was running through a series of
live electric wires!!!
All the lads took this challenge on and worked as a team throughout and all with big smiles on their faces!! I am
so very very proud of Neil for putting himself though this for amazing causes, and as a result he has raised over
£1100 which is being split between GBSSG & the Autistic Society. Neil is now considering another challenge later
in the year along with my brother, once all his cuts & bruises have healed!
Gemma Flanagan
Gemma with Neil
16
Chester Half Marathon
Wayne Barton-Scully completed the Chester Half Marathon in
1 hour 47 minutes and 37 seconds. “very sore knees but I know
that will pass in a few days” said Wayne after the event.
“My Dad (and wife, Mum and Auntie and Uncle) came along to
see me finish. Although still using his crutch for when he’s out and
about for long periods, my Dad is doing really well and was very
happy to see me complete the fourth of my runs this spring.
Sunderland 10k
Congratulations to Paul Oxberry (left
in the photograph) for completing the
Sunderland 10K in 1:10.
“It was my first attempt at anything like
this since I had GBS in 2010 and I am
now setting my sights on the Great
North Run. I have a place, can now run
six miles, and feel ready to step up the
training” said Paul.
GBS Quiz Night
On 11th April, 65 people
attended the Quiz Night
for the Guillain-Barré
Syndrome Support
Group. Alistair Summers
(19) who was diagnosed
with the condition in
October last year opened the evening which raised
£500 pounds for the charity. He said that GBSSG had
given him “tremendous support through a devastating
and very frightening illness”. His parents, Bryan (79)
and Jacky (59) thanked everyone for attending and
making the evening such a success. They would also
like to thank many of the local businesses and friends
who generously contributed raffle prizes and Richard
at The Nag’s Head who provided The Venue and a
buffet at half time. Special thanks should go to Kevan
Bailey the quiz master and Angela Bailey who kept
score throughout the event. The winners, Wit’s End,
took home the £150 pounds cash prize donated by
Bryan & Jacky.
Bungay Black Dog Half Marathon
I was diagnosed with CIDP in 2000 and have lived with
the condition ever since. I love to run and decided to
enter this years’ Black Dog half-marathon in Bungay
with the aim of raising awareness of my condition and
also funds to support the Guillain-Barré Syndrome
Support Group. I found the race tough going with
a strong wind and blisters to contend with but was
proud to finish with a time of 1hour 49 minutes and
having raised £770 for the GBSSG!
in the know
“Donations are at £550 so far which is way more than I hoped to
raise at the start”.
Christian Aldridge
17
My Sister – As Strong As A Horse!
in the know
GBS – WHAT A SHOCK!
STILL IN RECOVERY
Having chosen to work with horses from an early
age, Sally had completed her training in the
Management of Thoroughbred Horses and had
gone on to work at a number of racing stables
in the south of England. Handling yearlings was
one of her favourite tasks; walking them out each
morning across fields and up and down hills assisted
in building their strength but also required strength
and stamina in the individual undertaking this task.
Sally also secured the post of manager of a yard at
the National Stud in Newmarket and in 1999–2000
was working at a thoroughbred stud yard in New
South Wales, Australia. This was following our
backpacking tour of many of the Asian countries
before we both settled and worked in Australia.
We both moved to Darwin in the Northern
Territory where Sally worked at a trekking centre
accompanying visitors on horseback out in the bush
on the outskirts of Darwin.
Sally returned to England in 2001 and managed a
livery yard and riding stables before managing over
30 horses at a Trekking Centre, again accompanying
riders on horseback on Cannock Chase. From this
brief working history you will have gathered that
Sally loved the outdoors. At the time of her illness in
January 2013 she was working as a Park Ranger in
three of the local borough council parks.
Sally and her fiancé, John, are runners and had
stepped up their training in readiness to compete
in the local half marathon on 17 March 2013.
Following one such training session Sally had
felt particularly fatigued, muscles aching etc,
pins and needles sensation in her hands, which
progressed to her feet and then the onset of pain
in her back which progressively worsened over the
coming week, culminating in a visit to her General
Practitioner where bloods were taken and stronger
pain relief medication prescribed. However, she
had to be taken by ambulance to hospital one
night in severe pain where again bloods were taken
and morphine administered in the ambulance on
the way to hospital and again on discharge the
following morning. Later the same day Sally was in
so much pain she was admitted to hospital but not
before enduring an hour in the waiting room at A&E
and another hour or so before being admitted to a
ward. Again bloods were taken in A&E. Incidentally,
all three accounts of blood tests revealed nothing
untoward.
Over the coming first week in hospital, Sally’s pain
18
worsened. By this time she was weakening and
her knees collapsed causing her to fall to the floor.
Thinking back, the varied pain relief medication
Sally was receiving would have knocked a horse
out (sorry for the pun, Sal). This was a very worrying
time for both Sally and our family as the cause
was still unknown. Eventually Sally was moved
to another ward where she could be monitored
more closely. Her pain at this stage was intense
and it was literally crucifying to witness. She now
had a catheter in place and various cannulas in her
arms. Paralysis of her body was increasing, her smile
was one sided, her lips, mouth and tongue were
numb, she was beginning to lose her speech, was
unable to close her eyes fully, she was experiencing
numbness in her hands and fingers and in her feet
and toes.
More bloods were taken in anticipation that a cause
could be found. A Neurologist attended on Sally
and a lumber puncture was undertaken whereupon
a diagnosis was reached and Sally was told she had
Guillain-Barré syndrome.
Myself, Mum and Sally’s fiancé, John, were given
permission to stay with Sally 24 hours and we
worked out a shift pattern. We assisted by
massaging Sally’s hands and fingers, her feet and
toes and her back as and when she requested. She
was exhausted through lack of sleep and was now
unable to move the core of her body, legs and feet.
One week following admittance to hospital Sally
therapist. The physiotherapists commenced their
programme (Sally called this torture); at first this was
painful to watch and literally very painful for Sally
to experience but she understood the sooner the
better this was started, the sooner she would regain
her body movements. Sally was given special boots
to wear when in bed which corrected and kept in
alignment her feet; we understood this was to avoid
the possibility of foot-drop, they were cumbersome
and painful to fit sometimes but were necessary.
started the first course of IVIG (Immunoglobulin).
Sally was closely monitored and visited every day
by the intensive care nurses who were fully aware of
her condition and as Sally’s breathing weakened and
she was no longer able to swallow, the decision to
move her to Critical Care was taken. A nasogastric
tube was inserted and Sally spent 12 days in the
Critical Care Unit. Fortunately, Sally managed to
avoid being ventilated, but unfortunately this
meant she had to endure the constant and intense
pain which was best described to us by one of the
many doctors of varying specialities who visited
her as – “imagine an electricity cable and the
covering on that cable being stripped off, this is
what is happening to Sally’s nervous system and
the electricity in her body is criss-crossing which is
causing the pain”. It was evident to us the medical
team had not known or witnessed anyone with this
condition to experience such intense pain and again
was very frightening to Sally and ourselves.
Whilst in critical care Sally was put on a second
course of IVIG and by this stage was taking nerve
pain relief medication, which was slowly increased
to the maximum dose. She was also prescribed
a morphine based pain relief patch on her arm
replaced every three days along with other pain
relief medication and an injection in her stomach
every day to counteract blood clots. When
experiencing pain Sally’s blood pressure reached
dangerously high proportions and so appropriate
medication was given to lower this. Movement
in her hands and arms had sufficiently returned
enabling her to use the suction pipe as she was still
unable to swallow, even her own saliva.
Towards the end of her stay in the Critical Care
Unit Sally was visited by the physiotherapist team,
speech and language therapist and an occupational
At the end of 12 days in critical care, Sally’s swallow
was beginning to return as was the feeling in her
face – yes! my sister’s smile was returning. Sally was
moved to a local rehabilitation hospital, still being
hoisted when transferring but thank goodness
her pain was under control and being managed.
Commencement of a third course of IVIG was given
and after 3 weeks the nasogastric tube was removed
and Sally slowly progressed to a normal diet.
Sally had been in hospital for six weeks when she
was seen by a Neurophysiologist who undertook
nerve conduction tests. I understand this is to
establish whether there will be any permanent
damage to Sally’s nervous system.
Much to Sally’s relief the catheter was removed after
7 weeks and she commenced physiotherapy with
the aim of regaining her body movements, initially
to enable her to transfer from bed to chair unaided,
thus negating the use of the hoist.
Sally continued to work hard with the help of
the physiotherapy team and she returned home
after spending 11 weeks in total in hospital. She
is progressing well and is able to walk around her
ground floor flat unaided. Presently, she relies on a
wheelchair for any further distance and is collected
by ambulance two days a week for attendance at
the rehabilitation hospital for physiotherapy and
other physio based activities.
Sally’s fiancé, John, and a work colleague who
stepped in for Sally completed the local half
marathon and were successful in raising awareness
of Guillain-Barré syndrome and funds to the value of
£1,200.
in the know
Sally was still being hoisted when transferring from
bed to chair during the day. Bowel movement was a
huge problem throughout, her tummy would swell
and she was given various medications to assist with
this but little helped. We were told this was another
symptom of the condition, because of the paralysis
her bowel had gone to sleep and of course she had
no feeling, so could not push.
Sally is strong willed and remains positive, although
there are days when she has attempted to do too
much and has learned to accept that recovery
will be slow. Sally‘s aim is to return to running and
eventually to compete in the local half marathon.
Tracy Haycock
19
Caroline Watches Alien
Fundraising comes in all manner of forms but it was a first when I
was invited to attend the West End debut of Alien. Having never
seen the film, I was slightly in the dark on the story but off to
London I went accompanied by my husband Graeme. On the
journey we were trying to work out how this would work – was it
Alien the musical, Alien the comedy or pure horror!
in the know
I can report that this was one of the most entertaining and
funny afternoons I had in theatre land. The packed theatre resounded with the cheers and laughter of a very
appreciative audience. This (amateur) cast certainly knew how to wow the audience and received a well
deserved standing ovation at the end.
GBS Support Group was the chosen charity as Lydia, who played Ripley, had suffered from the illness when she
was 18. Thank you for a great fundraiser!
Stamp Collecting
Can you help with our stamp collecting
appeal?
ANY amount, large or small – stamps do not
need to be sorted into individual countries or
prices etc. Stamps cut out can be sent directly
to our buyer at:
GBS Support Group Used Stamp Appeal, Fords
Farm, HORSEY, Norfolk, NR29 4EP
Ideally, they should be cut or torn with
approximately 1/2 – 1cm of envelope
surrounding each stamp to prevent damage
and have the back of the envelope removed
as well (this works out cheaper to send too).
Please note that if stamps have too much
excess paper our agent will not buy them.
PLEASE DO NOT remove the stamp off the
envelope as they are damaged easily if they are.
Canterbury City Player
Sponsorship
For the second season in a row, staunch Canterbury
City FC supporters Antonio Sama and Barbara
Bradley are continuing with their player sponsorship
– this year it is Kieron Mann. Kieron will be wearing
the GBSSG logo on his shirt sleeve at every match.
As Antonio and Barbara would say ‘Come on City’’
We would like to thank all our
fundraisers who, already this year,
have raised an incredible amount of
money for the Support Group. We really
appreciate the effort that has gone into
each and every challenge and event.
Thank you
ANNUAL RAFFLE
Winning numbers for the annual raffle
drawn on 20th April 2013 are:
11451, 24509, 12359, 11456, 04419,
06944, 12351, 28180, 25246, 22387
Follow us on
20
my experience of GBS
I don’t know if my blog offers any kind of hope – I
am a GBS patient – having gone through a diganosis
of GBS (purely motor type) 1 year and 3 months ago.
It is an honest personal recount in frank language
on what was going through my mind whilst I was
seeing my body degrade bit by bit and rebuild itself
slowly again.
Today, 1 year 3 months after diagnosis – I function
almost 100% – I can lift 25Kg worth of water
tanks and climb stairs with it with no problems
at all. Something I never thought would happen.
Apparently I am way ahead of schedule in my
recovery – something not usually seen. I still attend
fortnightly therapy and OT sessions to work on my
hand fine-motor skills and walking smoothness. In
any case – I wish all your group members the best of
luck and the psychological and physical strength to
fight back!
On 28th February 2013 it was World Rare Disease
Day – and I had to honour to be received by Malta’s
Prime Minister.
in the know
By Trevor Sammut
In the picture (from left to right) – Jennifer Cornthwaite (with baby Isabelle) – has very rare blood properties present in 0.04% of humans,
Philip Chircop ( President of the Malta Blood Donors Association), the then Prime Minister Of the Republic of Malta – Dr Lawrence Gonzi,
Wilfred Sultana (still Diagnosis Unknown), Trevor Sammut (GBS/CIDP Foundation International Liason for Malta and a GBS patient himself ).
21
in the know
I have been encouraged by many to document, in
some sort of blog, key experiences and stuff I’ve
noticed as I cruised along in this game called ‘life’, in
which I was to experience and survive a diagnosis
of Guillain-Barré Syndrome. If you are here, it is most
likely that you already know what Guillain-Barré
Syndrome is and what its devastating effects are,
or could be. If you don’t, reading a quick wiki on it
will help you comprehend the contents of this blog
better. It’s not my intention (or even competency)
to medically explain GBS to anyone here. What I
can explain, is my experience in tackling my way
through it.
Perhaps this blog may serve as some sort of comfort
to anyone fighting the condition. Looking back as
I regain functionality to an almost-normal life as I
write this, I still would not trade the GBS experience
for anything else. Like astronomy, it is one of the
most humbling and life changing experience that
can happen to you as a Homo sapien.
So here goes:
It was a dark and stormy night… November of 2011
where I was tackling a stressful event at work at the
time when I was struck down with food poisoning. I
cannot identify, nor have any scientific evidence, on
what the bacterium/viral food poisoning was. My
symptoms of not vomiting at all but having almost
continuous runny blast watery poop suggest that
this may have been some type of campylobacter
infection. But this is a mere speculative guess that’s
all.
The symptoms of the ‘food poisoning’ started on
5th November of 2011. I paid my doctor a visit and
was treated with a prescription anti-biotic (I’ll call it
ANTIBIOTIC A or AB-A for short). I felt some serious
abdominal pain whilst with this infection. As soon
as I took Antibiotic A, I felt better very quickly. The
antibiotic was prescribed for a week. I know all too
well that one should never interrupt or stop an
anti-biotic prescription as this may strengthen some
remaining bacteria, making them drug resistant. As
the prescription of AB-A finished, the abdominal
pain and fever returned! Yepp! I still had the nasty
bacteria in me!
Back to the doc I went, where it was confirmed that
I needed further treatment. This time the anti-biotic
was a different one and I was set up to continue on
ANTIBIOTIC B (AB-B) for a further prescription period.
AB-B, like AB-A, worked well on me.
22
So, half way through AB-B, Wednesday 16th
November, off to shave the accumulated beard I
went. As usual I shaped my left hand into a scoop
to scoop water from the tap onto my face. I did
this every day before going to work. Nothing
extraordinary, except I noticed that my hand had a
‘funny’ shape. The fingers had more space between
them despite the fact that I had instructed my hand
to form a scoop. And the little finger on each hand,
just went to its own separate way – it pointed sideward. The result of this? Water ran out of my hands.
With the food poisoning saga over – I was ready to
face the world and get active again. Having rested
for a while, I felt my leg muscles somewhat lazy. Well,
you all know, staying non-mobile for almost two
weeks, it’s nothing extraordinary. I was thinking of
going back to some physical cardio-training to feel
‘stronger’ but at the same time, thought I’d better
take it easy for a few more days.
On Thursday I rested as I felt slightly tired. That same
evening I woke up and felt my legs crampy. As if I
had over-exercised. Again, I thought nothing of it.
I mean, who hasn’t felt crampy legs at a point in
their lives? Except I have done no sudden extreme
exercise of any sort. Ah well, I called my doc and
explained over the phone, about this. He suggested
that I take some magnesium pills. It made sense that
after the severe food poisoning relief I may have
pooped so hard that I’ve depleted vital minerals
which assist intra-muscular communication, one of
which is magnesium.
I also realised that I was finding it difficult to sign
and write. But I didn’t think that much of it at the
time – labelling it as extreme stress in my head. I
was determined to go tackle a work issue I had, so I
could settle down back at work. So I continued on. I
was eating and drinking normally again at this point
in time.
So yeah, I started the vitamin supplements.
On Friday I spoke with a friend (who happened
to be a doctor as well) about the ‘lazy leg’ thing.
I suspected that this was some kind of strange
side effect of AB-B. But since only 3 days of AB-B
prescription remained, I was advised to continue
with the administration of AB-B since the ‘benefits
outweighed potential risks’ and besides, this strange
feeling of tired legs could have been through lack of
vitamins. All made scientifc sense too.
Saturday morning I woke up. I felt no symptoms
whatsoever of the food poisoning. I was ready for
At around 10AM I felt like getting something from
the kitchen cupboard. So, I commanded my legs,
back and arms to get me out of the sofa. They
obeyed, but damn it, something was wrong. My leg
cramps were stronger. I felt somewhat weaker in
getting out of the sofa. But everyone feels weaker
when you have cramps in your large leg muscles
no? At this stage (since Thursday evening actually)
my wife started insisting that I get my ass to
hospital, but by now, I was on the ‘taking vitamins
experiment’ which I did not want to ruin. So, I
explained to her that if I got worse by the following
Monday, then yes, off to hospital I would go.
Saturday evening was not better, but whilst on the
sofa, I thought that it was not worse either. Until I
wanted to get something. I would try to get out of
the sofa and manage successfully, but like someone
aged 75 years old would successfully manage. This
was strange indeed. My wife was worried. I was
not. Come on. Everyone had cramps, cramps were
crappy, cramps made you weak. The hand shape
thing? Aaaa, that was nothing, I thought to myself.
Must be the needless work stress I was trying to
cope with.
Every evening I have one flight of steps to tackle
before going to bed. I was 30 years old (31 at the
time of writing this blog) – a flight of steps is a
breeze no? Saturday evening I was struggling.
My wife had to help me go up this flight of stairs.
I promised her worried mind that if I got worse, I
would go to hospital. Honest.
Sunday morning came. I woke up and had trouble
going down (yes DOWN!) one flight of stairs, I was
having some problems pressing remote TV buttons
and the cramps in my legs were still there. I held on
to the railing and went down my home stairs and
sat on the sofa, resting. I took the vitamins of course.
Sunday evening came – getting out of the sofa
resulted in me holding strongly to my wife and
grabbing nearby furniture. This was not normal. Yes, I
went to Mater Dei hospital precisely at 9PM.
I entered the hospital WALKING. I was seen by a
doctor only at 3AM (YES, I spent 6 hours waiting
with a condition that could kill in as fast as 4 hours
if you have a rapid onset – shameful – but this
IS the only thing I could complain about Mater
Dei Hospital – although it could have had fatal
consequences as I wanted to go home! I was fed up
waiting in the waiting area! I wanted to go home
and sleep, but my wife insisted, and I obeyed – you
obey your wives don’t you?!). Obeying your wives
could save your life.
So yeah – I entered the hospital with a limp-walk at
9PM on Sunday 20th November 2011. After 6 hours
waiting at triage in hospital, I needed a wheelchair. I
was unable to walk without falling. My legs were just
too damn weak! WT*?! My symptoms that I could
verbally explain to the hospital triage staff were, “I
have cramps in my legs and feel weak – I never felt
this weak before – it’s like having severely overexercised”.
At the emergency dept I was inspected by a very
nice doctor (all staff encountered at MDH were
amazing! I salute them all, again!!) who noticed that
my symptoms were indeed something unusual. He
suspected GBS, but was very careful not to rush.
I was transferred to another section where I was
inspected by Dr V. A great accurate nice doctor who
inspected me in detail using pin prick tests (and
more). I could feel everything. Even a soft cotton
on my toes, yes, I could feel it – but moving my
toes, I could not. I realised this at the emergency
department! I had problem moving my toes! I was
dexterous with my toes! They often doubled by my
second fingers, picking up stuff from the floor with
my toes! But not today Trev, Toes are OFFLINE!
in the know
work the next Monday for sure, or so I thought. Off
to shave, and my hands, they did the strange shape
again. I was having trouble scooping water from
the faucet to my face. I also felt that the leg cramps
were still there. I think, a bit more present than the
day before. I popped in the prescribed vitamins in
the morning and ate breakfast. I decided to then rest
on the sofa during the morning and watch some TV
and rearrange some of my thoughts on work-related
stuff which was seriously bothering me, causing a
large amount of stress on me. Now I’m not a stress
prone guy, but as much as I keep expectations low
to avoid disappointments, I realised I had some
things at heart and with sufficient passion and yet I
had to come to terms that these would no longer be
part of my life. But onwards with the GBS experience
story...
Amazingly I remained very calm. At this time, the
words Guillain Barré were being uttered somewhere.
‘WT* is Guillain Barré?’, I thought to myself…. Sounds
French, can’t be good (troll face). The A&E doctor
cautioned me and my wife as not to rush and
take things step by step until an accurate certain
diagnosis can be obtained. Wise words indeed. I
warned everyone NOT to tell me anything about
23
in the know
24
any disease. I did not want to read anything about
Guillain Barré whilst in hospital. If I did read anything
about the condition, it may potentially ‘contaminate’
what I was feeling and I would be an invalid patient
descriptively-wise. So, I wanted to remain neutral
and as scientifically accurate as possible to be able
to describe accurately what I was experiencing
whilst hospitalised.
I was practically paralysed from the hips down and
from the shoulder area to my finger tips. I could still
feel everything, but movement was very hard to
do up to my ankles and impossible from my knees
down and ankles down. What a strange feeling!
My fingers were constantly curled. Like a baby
almost. Not a FIST. Not open flat. But weakly curled.
Strange (to me – but an expected thing for medical
professionals).
The Ward doctor came to inspect me. He had a team
of other doctors with him. I eventually got used to
all these inspecting eyes. I even felt safe knowing I
was well cared for. I was asked many questions, one
of them somewhat leaving an impression on me
was “Are you swallowing?”. I was. Why would they ask
me if I was swallowing? Such a natural thing to do,
you drink, you swallow. Read on GBS to know why I
was asked this question.
I was put under observation. Apparently they
wanted to see how my regressing condition was
doing and meanwhile do a test that diagnoses
Guillain-Barré Syndrome with certainty (apart from
the ‘standard’ CT-SCAN, ECG, Chest X-Ray and several
blood tests). What is this test for GBS you say? It’s a
spinal tap. Cerebral Spinal Fluid (CSF) is extracted
from my back and tested in sophisticated labs for a
particular protein, which, in GBS patients, is found to
be extremely high in value. I asked with hope in my
eyes, whether it was possible that I be spared this
test, but no, it was necessary and therefore needed
to be done. Then so be it. I’ll do it.
I remember, in hospital, I was eating soup when
suddenly around 6 doctor-looking staff surrounded
me with a large white plastic container! AAAGH!
This was it! The Lumbar Puncture (LP)! I was
instructed to crawl like a baby on one side and
doctors behind me (medical students under STRICT
supervision were there too) were explaining to me
before touching me. This helped a lot in depleting
my ‘speculation reserves’ in my brain. When I was
touched by a pen I was told so, when I was wiped
with disinfectant, I was told so. Nicely done. And
actually it was less bad than I speculated in my
thoughts. Out of my spinal came out a few ml of
crystal white fluid. I’ve never seen anything like it!
It’s like clear and translucent! Amazing stuff. I was
instructed to lay on my back in bed and NOT MOVE
for around an hour. To be sure, I stayed immobile
on my back for TWO hours and moved just my eye
balls during such a period. I was warned that if I
stood up before 1 hour has passed; I would feel a
strong headache. I had enough problems as I was,
so I obeyed diligently and did not suffer any nasty
headaches when I eventually moved.
Thanks to the diligence of the medical labs teams,
my result was back the next day indicating clearly
a diagnosis of Guillain-Barré Syndrome. (Indeed my
Cerebro Spinal Fluid (CSF) was found to contain a
particular protein as being abnormally high in count.
This is a clear marker of GBS.)
After a short period of observation and questions
like “ARE YOU BETTER, THE SAME or WORSE?”, usually
answering ‘Dunno, better, I think or the same’…I later
realised that I was getting worse in actual fact, but
I was not quick to admit it. The toilet and shower
facility was 4 metres away from me. It took me 10
minutes to get to it, aided by my wife and a Zimmer
frame. I fell numerous times. I was unable to get out
of bed unaided. The bed had to be lifted high-up
from the floor so I would ‘fall’ from it to a standing
position. In order not to fall I would ‘lock’ my knees
so my bone structure would support me upright
rather than muscles. This technique was not always
successful. I still remember Mr G’s (the person who
did a surface EMG on me) warning – “Trev, you are
not well – you are extremely weak! – do not abuse
and do stuff completely on your own as you are
now!”. Wise words indeed.
The weakness was extreme. The following tasks were
IMPOSSIBLE to do:
• Slice a Sausage using knife/fork
•H
olding a metal knife and fork (even plastic ones
were ‘too heavy’).
•H
olding a Mug
•H
olding a Cup
•H
olding a paper cup half-filled with water.
•O
pening a biscuit packet (remained impossible for
up to 4 months after being discharged).
• S plitting a biscuit
• Tearing a piece of paper
• Waving properly at someone
The Bottled Life Savers
• Moving Toes
• Slicing the cooked chicken (hospital food)
• Opening anything that is packaged. Damn!
• Hugging my wife
• Sign my own signature on the sick-leave certificates
(for work).
• Write anything
• Scribble anything
• Hold a pen
• Hold a pencil
• Hold a crayon
• Petting a cat
• Handling Fiffy cat (or even a hamster for that
matter!)
• Answering my mobile phone
• Letting go of my mobile phone when it was in my
semi-curled fingers – I had to ‘shake’ the mobile
away from my hands.
• Go to the hospital bathroom – I was often
accompanied, as in a few days since entering
hospital, I had developed terrible ‘foot-drop’. This
is when your plantar/foot (the flat bit) area just
DROPS. I had no strength to pull-up my foot/toe
area UP. Without such strength, you fall over your
own foot. • And then, you’ll have another problem – “getting
back up”. It’s very very difficult with ‘foot drop’.
And in some areas of my foot, hot was felt as cold,
and cold was felt as hot. Now this is some confusing
stuff. You could burn your foot next to a heater and
could swear you felt the heater blowing cold cool
air like an air conditioner in Summer. It happened to
me. Fortunately the burn, was a minor one.
Hey – but at least I could feel and talk and joke
around like a fool in hospital. I saw the hospital as a
different environment from which there was plenty
to learn.
Yeah – I made a few friends there too, despite my
paraplegic-like condition. One should never give up.
And there was hope indeed. It was brought to me
by Science. I knew that only Science and Technology
(together with some raw will-power) would save my
life and lead me to a better quality of living.
It was decided that I was to be injected
intravenously with Normal Human Immunoglobulin
packaged in the form of bottles labelled as Vigam
Liquid. The process was quite straight forward.
Via dripping bottles, clear liquid would flow to
my veins, causing my body to ‘see’ too many
immunoglobulin and stop producing the Trevordestructing immunoglobulin. It worked. At least, I
stopped getting worse, eventually reaching a 1 to
2 day plateau of not-getting-worse-not-gettingbetter (except for the occasional blood-pressure
fluctuations, caused by the intravenous substance).
Over further days in hospital (I spent 20 days in
hospital), I started regaining movement bit by bit. I
could see my legs moving better…in 10 days after
being treated with immunoglobulin I could wobblewalk!
I still remember the great day where I was being
assisted to walk with a Zimmer frame… where I
took a GREAT RISK and gave the Zimmer frame a
nudge away from me – and did my very first few
small weak steps without frame-support! Yes – there
was hope that I would walk again! I was so excited
– I did walk a few paces without the frame! That
was enough though – I sought the frame again as
I felt that I was going to fall. But it was a major feat.
I walked between four to six paces unassisted!!!!
It was amazing. Tears rolled down my cheeks as I
looked at Mater Dei Staff, my wife, family members
who were there at the time. I would never forget
this moment. My legs – they were taking a few
commands from me. Just a few and weakly– but lest
I forget, a few days before it was close to none! Yes,
there was progress, and that was all that mattered.
in the know
• Holding my wife’s hand
25
in the know
And medical assistance now changed form to
PhysioTherapy and Occupational Therapy sessions.
Yes, sitting on balls, walking on funny squiggly mats,
having therapists stretch my legs, arms and feet
numerous times daily. Not moving (without choice
now) causes a lot of nasty things to happen to your
body. Tendons start shortening and yes, I remember
my calf muscles. They were like sacks of jelly water.
Before hospital I had solid calves that functioned
well. Not in hospital – they died....or as the docs used
to say, ‘they atrophied’. Muscle atrophy is muscle
wasting. And along with muscle wastage, your
morale wastes away too.
But in hospital, some real morale boosters are in the
form of nurses, staff, physiotherapists, occupational
therapists and doctors. And had they not been there
for me, I’m quite certain my recovery would have
been different.
At Home
I was sent home after around twenty days. Upon
my wife opening the door for me ( a soft door
lock key was impossible to turn ) and stepping
in the hallway I heard a long long greeting,
NYANNNNNNMIAAWWWWW. It was my beloved
Fiffy Cat! She missed me. She smelled me, then
touched me with her paw. I missed her so much. I
wanted to pick her up. She wanted to be picked up,
like before no?. But no.
Picking a cat up requires arm strength, it requires
finger strength, it requires co-ordination in balance,
it requires bending of knees and supporting own’s
(and eventually, plus cat) weight which your foot
has to compensate for by adopting to the changed
centre of gravity. I had none of that – and which is
why I felt really bad at home. I thought that being
at home would boost my morale, but it is at home
where I really started realising that all the things I
was used to naturally doing were all impossibilities.
As soon as the cat greeted me I was craving for a
nice plate of spaghetti. They don’t make spaghetti
in hospital (why not?! Dunno... too carby perhaps?).
We’re Mediterranean fond of Italian cuisine!
So my wife made a beautiful big plate of spaghetti
any manly man would crave for. It was delicately
prepared with a good touch of my wife’s usual care
and love. I grasped (somewhat) the fork in my right
hand, and pierced the spaghetti as usual. And then
I stopped.
26
“I did not know what to do “.
That was the exact feeling. I KNEW what I wanted
to do. I wanted to twist the fork clockwise to wrap
the spaghetti around the fork and then eventually,
into my mouth it goes. But NO. I DID NOT KNOW
HOW TO DO IT. In actual fact, I was commanding
my hand to do the movements, but there was no
connectivity. At all! The feeling that you get however,
is ‘I don’t KNOW how to do it!’! And that feeling, is
one horrible feeling, to say the very least. Can the
brain UNLEARN such basic tasks that rapidly? The
same problem was encountered when I tried to
fasten/unfasten a shirt button – or any button. At
the same time, as I regained movement, these little
usual assumed tasks were all key benchmarks in
my life as I learnt again how to do them, once the
movement was back with some measure of strength
after MONTHS of being discharged from hospital.
As time went by – the nightmare of pain
Every evening for the first 3 months after I was
discharged from Mater Dei Hospital, whilst in bed
or resting on the sofa, I would get electrocuted
with pain, and spasmed cramp like nasty feeling
of electrical pain twisting sweating pain from the
hip down (mostly). Yes, the fragmented sentence
is on purpose – there is no word to describe the
nerve boney pain caused by this condition – and
so, I called it SKUMPERT. I had skumpert sessions
all nights for the first 3 months. Paying a visit to
my neurologist, it was suggested that the only real
remedy was to ease the pain was through taking
Amitriptyline. What? You see, it was explained to me
that from what I understood, the brain has this pain
centre, whose evolutionary purpose is to orgasm at
PAIN. Now since my nerves were demyelinised and
therefore were not conducting properly, pain was
not arriving at this centre, and this centre could be
‘inventing’ pain to appease its sadistic self. Again, this
could not be just the cause of this pain, it could be
that my nerves were regenerating myelin and until it
was done with the myelin construction – SKUMPERT
– pain fun for me.
Despite the Amitriptyline solution to my pain, I
decided NOT to take this medicine despite having a
prescription at hand. I would have rather continued
to feel the pain (which I did) rather than creating
some secondary complication caused by this
medicinal. You see, I wanted to remain as drug-free
I possibly could, so that when I felt something, I
had no doubt that it was caused by GBS and not by
some drug. Perhaps it was a needlessly stupid thing
to do – but that’s what I did.
So you think you can dance? – The
‘dancing’ phenomenon
Zygote Body – A free online tool I used to discover
where nerves actually are. I could trace ‘pain paths’
with accuracy and further verify that the pain was
related to nerves.
I learnt, the hard way, that your foot area (specifically
the muscle peroneus tertius and the likes) are
responsible for balance. My offline nerves were not
carrying signal related to balance and floor textures
to/from brain. And so, my brain compensated by
balancing through the use of the HIPS. This gives
very rudimentary balance, and so I appeared to an
observer, as if I was dancing, or wobbling under an
apparent affect of alcohol intoxication. And like this,
I remained for almost 4 months! I’ve now danced
all my life’s worth of dancing, so I have the perfect
excuse to avoid dancing at parties or weddings now.
With very valid reason! Fitted carpets were my worst
nightmare – I often lost balance on them, especially
if I had items in my hands, due to their ‘soft’ visually
unpredictable textures. In January 2012 (ie: around
And I shall be 100% honest. I psychologically fought
real hard not to let GBS win over my morale and
mind. At times, GBS did win, as I definitely imagined
myself permanently crippled and at moments of
weakness, I imagined myself secretly wheeling
myself to a high bridge or a high location… to take
a good view of course… of course.
But morale boosters came along, as I continued to
regain movement and fluidity of motion. You see,
it’s not just about moving, it’s about moving with
fluidity and not like a rough robot or a flap of a
carton box. As more pain whipped at me, I noticed
that, each time I would gain some better motion
in my fingers, legs, general walking (improving
from limping to less-limping to somewhat walking,
to looking like walking, to walking). So pain was
soon starting to be associated with the possibility
of improving. It was (and still is) associated with
myelin/nerve repairs in my mind.
Morale boosters were also encouraged very
significantly through my wife. She took me vehicle
rides and ensured I would not give up. Facebook
friends kept the encouregement going too. Despite
GBS being, at a glance, physically destructive, it is
also emotinally so. Emotional support was given in
continous loving doses especially by my wife. Family
& friends, I also salute you all for being there. I was
not alone. And perhaps through this little disjointed
blog of mine, you too will not feel alone, even if you
have limited emotional support and are suffering
GBS.
Yes, some of my timelines now (and these apply
only to me – if you are fighting GBS, your timeline of
improvements may be significantly different). Seven
months after hospitalisation, I could open a garagedoor lock with some confidence. At this time too, I
could start buttoning shirts and pants again! Eight
months after hospitalisation, an almost-fluid motion
to my movements started. I no longer walked too
much like a ‘square robot’.
in the know
I was managing to feed myself (somewhat), shower
myself (somewhat) but not drying myself. To dry
yourself, you need a towel. You must be able to
GRAB the towel (despite its weight). As soon as
you grab a towel, it starts throwing you off-balance
because of its weight and pendulum effect –
therefore you need to compensate with counterbalance – something I could not do very well. To dry
your lower extremities, you need to bend you knees
just slightly and lower your back and compensate
for having your centre-of-gravity moving slightly
forward – BAM!!!! On the floor I went. So drying
myself was on the impossible list of things that I
could not do for a few months. For three months
to be exact, I was unable to towel-dry myself. Not
without falling like a broken folded chair.
2 months after hospitalisation) I had a new year
party which I was determined to go. I had to to be
constantly accompanied so that I would not fall. The
venue was in a hotel full of various types of fitted
carpets and tiles – occupying me with hundreds of
assisted route calculations.
When I first attended my occupational therapy
session, pressing an aerosol can was impossible. My
hands could feel, my finger-tips could feel. I never
had the ‘pins and needle’ sensations many with GBS
seem to report. I always felt everything well. Except
for some parts of my left leg where I felt hot as cold
and cold as hot.
There were also no other chemical treatments that
27
in the know
28
I took. It was ‘just’ physiotherapy and occupational
therapy. I obeyed (and still do) every single
instruction that both my therapists gave me. It was
frustrating playing with putty, balls, blocks and
wobble boards. VERY FRUSTRATING – even when I
continued such exercises at home. But I knew that
the solution was to shut up and obey. And soon,
from unable to stand after sitting on the neuro-gym
chair – I could stand back up – for a few weeks with
extreme difficulty and with assistance and now,
9 months after diagnosis, I could do it numerous
times without problems. Up to 4 months after being
discharged, I never sat down on chairs (or toilets for
that matter). I FELL onto them. As soon as I bent my
knees, even by just a little bit, they buckled under
me. Standing back up, required me to hold onto
something and push or pull UP.
The Afterthoughts of Today and
Tomorrow…
GBS is an amazing experience. I don’t wish it upon
my enemies (that is: no one – I have no time for
such pointlessness as to even have an enemy).
There are however, a few people I’ve met in my life
who would benefit greatly by having GBS and then
quickly recover from it (I’ve been told that ‘quickly’ in
GBS terms is around one year). People who need a
good dose of humbleness and humility in their lives.
On those persons, it could leave some real long term
benefits.
As I write this blog, around 9 months after diagnosis,
I do not take my keyboard ticking fingers for
granted, I feel my spine doing its job, I feel muscles
supporting my sitting position and I’ve learnt a lot.
I feel all fingers doing what my brain tells them
(despite the tremor that is still evident on both
hands).
And I learnt on how strong I could be when faced
with such a crisis. Perhaps I learnt to be strong when
being strong was the only option I had left.
As my therapy sessions have now decreased to 2
times every fortnight, therapists are still working
on me to improve my walk to a ‘normal’ one (as
much as possible) and finger interossei movement
come back. The pain decreased to low and tolerable
measures now (except for a few nights here and
there).
I’ve been promised that as soon as I can stand on
my heel and have my hands improve, I’ll be out
of out-patient therapy for good. I’ll fight it off till
the very last moment! And work stress that could
have triggered the food poison, triggering GBS? I
changed that as soon as I could (a few weeks after
being dismissed from hospital and assisted by my
wife to physically arrive at an interview venue with
the aim to change the workplace conditions). I am
now very happy at my new post. It was high time
too that I did something to improve my working
conditions and environment. The catalyst was the
soffit tile counting at Mater Dei Hospital and of
course, GBS.
So my friend, if you have GBS – Don’t give up. It’s
an experience I don’t want any refund for. That
experience is mine. And had I the choice an UNDO,
I’d like it to remain there.
Yes, GBS leaves a serious psychological scar on you
(and possibly a few physical problems too), but in
my experience, I learnt a lot, about a lot.
Life is an amazing feat of probability, bordering on
the improbable, yet it is. A lot of things changed in
my life and those around me since the onset of GBS.
And viewing matters in a long-term fashion (the
only way you should visualize things to increase the
chance of being happier), has been an experience I
would never forget.
Anyone still tackling GBS and is reading this – I tell
you – stay strong and fight it. Do physiotherapy, do
occupational therapy and keep trying. Improving
your psyche and morale can only accelerate positive
effects on you. And know that IRL, science is our
only key to hope. It’s what kept me going.
And for those of you reading this who never
experienced serious debilitating illness and have
been thinking on change, for a long time, a change
to the better, and change in your life, a holiday, a
dream, and yet done nothing about it yet, what are
you waiting for, GBS?
If you want to read the full, unedited, uncensored
account of Trevor’s experience with GBS, then head
over to http://trevorsammut.blogspot.com (contains
expletives at times).
A long and
winding road:
A family’s story
of GBS
Late October 2008 – I have a strange call from
Mum (aged 72). She’s feeling weakness in her
arms, having trouble getting things out of kitchen
cupboards and using the potato peeler! Within
a few days it’s affecting her legs and she’s now
struggling to get up the stairs. Can hear in her
voice that she’s worried. Is talking about needing
physio. On Sunday night I suggest she ring GP in
the morning.
Monday 3rd November – Have strange feeling
whilst in the supermarket that I need to get home.
As I get in, the phone is ringing. It’s Dad to say that
Mum has collapsed in the bathroom and he’s been
unable to get her up. She’s being taken to Worthing
Hospital. Spends the day in A&E. Doctors seem
puzzled.
Tuesday 4th November – Mum now on a ward
and only able to wiggle her fingers. Neurological
Consultant suggests she be moved to Hurstwood
Park Neurological Unit in Haywards Heath for tests.
Wednesday 5th November – Waited all day for
Mum to be moved. My youngest brother comes
down from London and we head down early
evening to see her. As we approach Worthing my
husband rings to say she’s on her way to Haywards
Heath! We turn around and race back with
fireworks exploding around us to be there to greet
the ambulance and settle her in. As Mum is now
only 20 minutes away from me, Dad, aged 82, and
not a great cook, comes to stay with me.
My husband does some internet research and
suspects it may be something called Guillain-Barré
Syndrome. Doctors still a bit flummoxed as GBS
hasn’t presented in usual way as there was no
apparent prior illness. Scans highlight some sort of
issue with her neck, but this might just be an old
injury.
During the following weekend Mum in fine spirits
despite having now lost all power in arms and legs.
Monday 10th November – Mum is taken to the
hospital gym by the physios. She complains of a
pain in her back and is X-rayed. She is transferred
that evening to the Intensive Therapy Unit as
her chest muscles have weakened and she has
developed pneumonia. A lung has collapsed. She’s
put on intravenous antibiotics. Finally a diagnosis
of GBS is confirmed and she starts on a course of
immunoglobulin.
Over the next few days it’s terribly distressing to see
her struggling to breathe with oxygen.
7am Thursday 13th November – Call from
ITU nurse to say that the decision was made to
put Mum on a ventilator during the early hours
of the morning. Dad and I go in but Mum still
unconscious. Shocked to see that she has now
had a tracheostomy. Decide to go back later when
she’s awake. Find great strength and comfort from
her spirit. Probably a huge relief to her not to be
struggling to breathe.
During the following week Mum responds well to
treatment for pneumonia, but no change in her
paralysis. A great talker, she mouths to us and we
desperately try to lip-read. Alphabet pointing board
is useless as she is unable to point!
in the know
By Mary Lou Burge
Dad in a heap. Lots of tears and lots of wine.
Trying to prop him up, be strong and pretend life
all perfectly normal to my boys aged 9, 5 and 4.
Endless people ringing… understand their concern
but have so little time to repeat the same story over
and over again, particularly when boys are home.
One of my brother’s friends arrives with a car load of
homemade frozen meals – a god send!
I contacted the GBS Support Group who put
29
in the know
A long and winding road: A family’s story of GBS
me in touch with our local contact – a charming
gentleman from Lewes who had suffered with Miller
Fisher Syndrome. Although he was only in ITU for a
short period of time, he reassures me that Mum has
every chance of getting better (albeit slowly).
concern that Mum is very unresponsive and they
suggest someone come in. My husband Alex goes,
but comes back visibly shaken. Mum had stared
straight through him and seemed completely out
of it.
Wonderfully dynamic Spanish doctor on rota in ITU
suggests trying another treatment; plasmapheresis
– a blood plasma transfusion, only available in
Brighton Hospital. Within days she is transferred.
It’s such a rare treatment only a few of the nursing
staff seem to know how the machine works! It’s a
nightmare to park, sometimes waiting an hour for
space in the car park. Mum has 5 days of treatment.
Having been in a small ITU unit of 7 beds, this is
like a factory. Watching the edge of life; near-death
mothers following childbirth, road accident victims
– even beaten up prostitutes (according to Mum
who takes everything in).
Suspect she may have been given too much
medication for the cramps as she appears better the
next day, although the wacky dreams continue. We
get quite confused when we visit as she mouths
about strange ‘outings’ with the nursing staff!
The senior ITU doctor is very charming, old school,
shakes hands with us every day – probably as Dad
always in suit and tie. I go in alone one morning
and he asks to see me. He confirms what I suspect,
that the treatment has made no difference to
Mum’s condition as we would have seen some
improvement by now. He suggests it will be a
‘long and winding road’, and will probably not end
where we want it to be?! Mum will have to be on
long-term ventilation which could mean recurrent
chest infections. He asks if she’d ever smoked which,
apart from the odd one at a party in her youth, she
has not. He says there is nothing more they can do
to help her in Brighton so he’s sending her back to
Worthing, her catchment hospital. I ask whether it’s
possible to return her to Haywards Heath to be near
me so that I can continue to look after my father. He
says he’ll see what he can do.
6th December – Mum moved back to Haywards
Heath. So thrilled to have her back nearer home as
so much easier for everyone.
Her cramps now seem to increase. We massage her
legs whenever we go in, but she’s given oramorph
to help. Now spends a lot of time sleeping. Her
body’s regulation system seems to have gone
haywire – one minute she has dangerously high
blood pressure, next minute it dips well below
normal.
Her hairdresser comes to visit and ends up washing
Mum’s hair with a bowl behind her bed and blow
drying it which must have felt wonderful for her.
Friday 19th December – Dad and I have stinking
colds so haven’t gone in today. Hospital calls with
30
Christmas Day 2008 – the oddest Christmas. Took
my mother-in-law to spend morning with Mum.
We were tearful as she doesn’t seem to be in a
good way. Family debate at lunch as to whether
we should take her 6 grandchildren to see her as
none of them have seen her since October. We end
up taking the youngest (aged 3) as we feel she’ll
be least affected. Mum seems to respond. Lizzie
confused.
New Year’s Eve – Decide to take Harry, my eldest
son (aged 9) to see Mum – find her sitting in a
chair which is a lovely change! I do her hair with
curling tongs and a manicure. She looks great even
though she is attached to a lot of machinery. Harry
remarkably brave and chats normally whilst there,
but very upset after we’d left.
January 2009 – Although we have confidence in
Mum’s neurologist who visits regularly, can’t help
wondering if there are some other treatments out
there. I do some internet research and email a
leading neurologist with a lot of experience of GBS.
He replies very promptly that there are no other
treatments to immunoglobulin and plasmapheresis
and that these are only effective if administered as
early on as possible. He confirms that with time and
excellent nursing there is every hope that Mum can
make a good recovery.
Told that Mum now has MRSA in the neck opening
of the trache and to be careful with hygiene. Quite
concerned about transmitting anything to my boys.
We’re called in for a family meeting. It’s explained
that as ITU in Haywards Heath is only a 7 bed
unit and that, although still on life support and
completely paralysed, Mum is stable and therefore
blocking a valuable bed. Senior staff are under
pressure to start thinking about transferring her
to a long-term ventilation unit. This could be
anywhere in the country as there are not many left.
Concerned how on earth I am going to manage
with 3 small boys and an 83 year old father. They
agree to give it 6 weeks to see if there is any change
in Mum’s condition.
Have now spent a fortune in car parking! Go and
talk to Car Park Manager who gives myself and my
father free monthly passes.
February 2009 – Some improvement. Less reliance
on the ventilator during the day.
March 20th 2009 – Mum’s 73rd birthday. I take a
cake in for the nursing staff who now feel like our
extended family. A great shopper, we take Mum in
her bed with all her machines in the lift down to see
the hospital shop in the foyer and buy her a balloon!
Late March – Slight movement in thumbs! Alleluia!
April 2009 – Decide to attend the GBS conference
in Leicester. Learn an incredible amount about the
syndrome and its variants such as CIDP and meet
some wonderfully inspirational people. Amazed at
how these illnesses can affect any age group. Come
away with confidence that if Mum has come this far
her condition will eventually improve, although she
does seem to be one of the small number who are
on ventilation for a very long period of time.
Learning about the link with the campylobacter
virus makes me wonder whether Mum had possibly
eaten chicken that wasn’t cooked well enough
during a cruise she and Dad had been on the
previous September, although she claimed she was
never ill. She had been quite low however, having
been winded in a car crash at the beginning of the
year and then fallen and dislocated her shoulder in
the March.
I realise how vital it is for doctors to recognise the
syndrome as quickly as possible so that treatment
can commence and hopefully arrest it. I debrief
the ITU team upon my return and ‘lecture’ medical
students on GBS who come into the unit for
experience.
May 2009 – Nurses try other trache fittings which
Mum seems to struggle to cope with as she looks
like she’s choking to death! Talk of a specialist
3rd June 2009 – Mum’s tracheostomy is removed!
5 days later she’s finally moved out of ITU to a
room back in the Neuro ward at Hurstwood Park.
Can now lift her arms above her head and speak
normally. Has the feeder tube taken out of her
stomach, but stomach then inflates to enormous
size with wind – she looks 9 months pregnant but
hardly surprising having been fed packet fibre food
for 7 months! She has her own room because of
the MRSA infection she had, but this leads out to
a terrace where she can sit in a wheelchair in the
sunshine.
A family meeting is called and we’re informed that
Mum now needs rehabilitation to be able to walk
again. We plead the case that she stay in Haywards
Heath for her rehab which would be so much easier
for us to manage as a family. But this time it falls on
deaf ears as the cost must be covered by her local
NHS Trust. She will have to go to Donald Wilson
House in Chichester and prior to that Worthing
Hospital to await a free bed. I am very upset and
worried about how my father will manage and
that I won’t be able to see Mum so much. A very
patronising senior nurse tells me it is now time for
me to ‘let go’!
August 2009 – Mum is moved to Worthing. Starts
to write letters. Has a great view of the car park but
sees how ill my brother has become with ME which
we had kept from her. After 10 months with me,
Dad moves back home. Rather emotional. Terribly
mixed feelings; relief to have our house back to
ourselves but worried about how he’ll cope.
September 2009 – A bed becomes available at
Donald Wilson House in Chichester so Mum moved.
A brand new, beautifully clean unit. I visit once
during the week, checking on Dad on the way back,
and take the boys some weekends. Mum is now
walking well with the help of a frame. Dad driving
to Chichester every afternoon but seems to be
managing thanks in large part to the great grocery
store COOK!
in the know
Now in a daily routine. I take boys to school, do my
chores then head for the hospital. I massage Mum’s
hands and read to her (and the rest of the unit) the
daily newspaper, letters she’s received and even
Hello magazine. I head back around 1pm to cook
Dad some lunch then he goes in until early evening.
Mum having daily physio which involves her being
slid onto a trolley which then tilts her upright.
Obviously not hugely comfortable for her but she
seems to have great stamina.
coming from The Lane Fox Respiratory Unit at Guy’s
& St Thomas’s Hospital in London. In the meantime
they send a weaning programme. Improvement
picks up a pace. On a couple of occasions they fit a
speaker machine to her trache which is the first time
we’ve heard her voice in 7 months.
October 2009 – Mum making great progress.
Have a meeting to start the process of her returning
home. Occupational Therapists visit house to assess
what equipment will be needed. Mum is brought
31
in the know
home for a cup of tea and to see how she’ll get on.
Strange to have her as a visitor in her own home!
Days later she loses power again. They think it may
be caused by a urinary tract infection and she’s
transferred back to Worthing Hospital. Seen by the
neurologist she is sent back up to Hurstwood Park
for another course of immunoglobulin. Dad comes
back to stay with us for a week – a bit of a holiday for
him! Mum’s weakness improves so she’s sent back
to Chichester. Within days weakness returns and she
is back to Worthing Hospital.
November 2009 – Although her breathing is
checked regularly, this episode does not involve her
chest muscles. The Neurologist suggest that this
may be an attack of CIDP – rare to suffer after GBS
but not unheard of. Mum starts on a high dose of
steroids and starts to make a rapid recovery. By mid
December she returns to Donald Wilson House to
start her rehab again!
Christmas Day 2009 – Mum has made such
good progress she is allowed home on a 2 night
visit. We take a ‘picnic’ Christmas lunch and for the
first time in 14 months all sit around the dining
table as a family. Dad doesn’t move from his chair
and although thrilled that Mum is home, seems
exhausted. Over the next few weeks we have bad
snow so he has to be ‘rescued’ by my brother as he
runs out of food!
January 19th 2010 – Mum finally returns home.
Apart from a couple of unfortunate falls since, Mum
has continued to make a remarkable recovery. She
has had some slight relapses of CIDP following
short illnesses and when, devastatingly, Dad was
diagnosed with cancer a month after she got home
and passed away a year later. Her little fingers are
both slightly bent and she gets very tired, but she
finally came off steroids completely in the summer
of 2012. After all she suffered she never once
complained and is an inspiration to all GBS sufferers
and their families as she did indeed ‘Get Better
Slowly’.
In Memory
Stuart Pert
Stuart Pert of Glasgow who died in April was a man who was a pleasure to meet and to have known.
I first met Stuart many years ago when he was crystallizing his ideas for a Scottish Branch of the
recently formed GBS Support Group. He having suffered from the illness, became acquainted with
fellow sufferers from the Glasgow area and saw the benefits that sufferers and their families could gain
from a properly organised Scottish Branch of the GBS Support.
Suffice to say that after a considerable amount of work a Group was formed, a committee elected with
Stuart as Chairman – a position which he held for a good number of years and saw the Scottish Group
flourish.
Stuart was a member of the National Executive Committee for some years and his ideas and input in
the early years of the Support Group were more than welcome.
A man who had a good word for everybody. To his family we wish to express our profound sympathy.
Ian Bennett
32
Branch News and Events
Lancashire and Cumbria
Bilsborrow Village Hall
Sat. 7th Dec
The Christmas Party and Jacobs
Join
23rd March 2013
Kent
Sat. 12th Oct
Lunchtime gathering – Further
details available nearer the time
Yorkshire
Sun. 13th Oct
2.00pm
etty Boothroyd Centre,
B
Dewsbury. A representative
from the Kirklees Expert Patient
Programme will be speaking
West Midlands
The next meeting will be on Saturday 28th
September where everyone can meet up in the
morning at the National Arboretum at Alrewas,
Staffordshire and continue on to Harlaston
Village Hall (near Tamworth) for a finger buffet
commencing at 1.00pm. Tickets £5.00 available
from Ann Turner Tel: 01827 69739 – please book
in advance to help with numbers for catering.
Thank you
Scotland
The next meeting is on Saturday 5th October at
the Premier Travel Inn Glasgow Airport and there
is a cheap night’s stay and meal deal if you book
early for the Friday night. Most of the committee
will be there on this night. We usually start
around 11.30am followed by lunch and we are
very lucky that nearly every year Hugh Willison
joins us.
South West
Sat. 12th Oct
Saltash Wesley Church - Biannual
meeting 2.00 – 5.00pm
The group met at the golf club outside Bristol,
our usual venue in the spring. This time we
didn’t have a guest speaker but there was no
shortage of conversation. Stories were swapped
and discussed, ranging far and wide, including
one member’s experience of GBS in Malaysia.
The general consensus of opinion is that when
diagnosis is quick and efficient, with speedy
referral to a consultant, the outcomes for (and
general well-being of ) the patient is greatly
improved. Our group still feels there are too
many instances of poor care and treatment that
is not ‘joined-up’. “Come back in a month” and
“The consultant is on holiday” are quotes from
people whose symptoms were progressing quite
rapidly. Some of the group had experiences that
led them to believe that there is still too much
ignorance about the needs of patients with
neurological illnesses, for example water left out
of reach and nurses too busy to give proper care.
in the know
Sat. 21st Sept
SW meeting at Saltford Golf
Club
However, the meeting was not all doom
and gloom! There were some examples of
outstanding care (including that in Malaysia),
with speedy referrals and ‘joined-up’ hospital
procedures. The group enjoys welcoming new
friends and we look forward to the next meeting
in the Plymouth area.
33
Letters
Dear GBS Support Group,
in the know
FUNERALS
What a superb poem by Joan Wallace!
And the ‘sting in the tail’ is brilliant. As
an ex-parish priest, now retired 20 years
I have to say none I ever officiated at
were the celebration they ought to
have been, and few are memorable:
a couple where I was on my own off
to the crematorium and the friends
and relations were left to get together;
perhaps the most memorable was
the funeral of a local farmer, and his
son requested bringing his coffin
into church the night before – readily
given. The church was atop a hill and
I watched as the farm tractor hauled
a cart full of flowers along the road
beneath the hill ( the farm wagon
couldn’t be got ready in time, and I
never said anything about using the
dungcart !); what made it all the more
memorable were the comments by
locals who happened to see a cart full
of flowers passing by – and couldn’t
understand what it was all about; I
would hope we have moved on a bit
since those hidebound times after the
war, and people feel free to express
what they really feel, instead of feeling
constrained by custom, and what is
convenient to the funeral director; when
my wife died suddenly at the end of the
last century we didn’t have enough time
to organize a real celebration, though
we managed a display of Phyll’s life in
the village hall, and we organized the
funeral – and only then told the funeral
director what he was to do – and the
first touch was taking her coffin into
church the night before, with the whole
family cycling behind the hearse (I
never asked the locals what they felt
about that – probably thought I was too
miserly to have a ‘proper’ funeral).
Michael Staines
34
Equipment review
Össur Foot-Up
The ‘Foot-Up’ is a lightweight ankle orthosis, designed
to provide dynamic support for drop foot or similar
complaints.
www.ossurwebshop.co.uk
One of our members has sent in a review as follows:
I would like to recommend the Össur Foot-Up device
– it is a less cumbersome alternative to calf-length
footdrop splints.
Pros: light, tough, insert fits under laces of any lace-up
shoe (or there’s a ‘shoeless’ version – I don’t bother with
that at home, just flop around!).
Cons: expensive at £51.99
Until last year it only came in black, but there is now a
summery beige version!
2013 Christmas Cards
1. Partridge in a Pear Tree
140 x 140mm
£3.50 for 10 cards
5. Golden Starlight
120 x 170mm
£3.75 for 10 cards
9. Winter Post (GBS Support Group)
128 x 128mm
£3.50 for 10 cards
2. Christmas Wishes (with
glitter on textured board)
126 x 126mm
£3.75 for 10 cards
6. Christmas Story
81 x 200mm
£3.50 for 10 cards
3. Christmas Icons
140 x 140mm
£3.50 for 10 cards
7. Glow’d with Tints
of Evening Hours
81x 200mm
£3.50 for 10 cards
10. Bearing Gifts we Travel Afar/Star of Wonder
155 x 108mm
£3.75 for 5 of each card
4. Bobbing Robins
100 x 152mm
£3.50 for 10 cards
8. Bethlehem Nativity
120 x 120mm
£3.50 for 10 cards
11. Christmas Wreath (with glitter)
128 x 128mm
£3.75 for 10 cards
13. Variety Pack
Cards may vary from those illustrated
£5.95 for 20 cards
The Greeting inside these cards reads:
12. Moonlit Santa
86 x 195mm
£3.50 for 10 cards
With all good wishes
For Christmas and the New Year
2013 Christmas Card Order Form
Please detach this order form and send together with payment to:
GBS Support Group, Woodholme House, Station Road, Heckington, Sleaford, Lincolnshire NG34 9JH
Card
Ref.
Title
1
2
3
4
5
6
7
8
9
10
11
12
13
Partridge in a Pear Tree
Christmas Wishes
Christmas Icons
Bobbing Robins
Golden Starlight
Christmas Story
Glow’d with Tints of Evening Hours
Bethlehem Nativity
Winter Post
Bearing Gifts We Travel Afar/Star of Wonder
Christmas Wreath
Moonlit Santa
Variety Pack
Qty per
pack
Price per
pack
10
10
10
10
10
10
10
10
10
5 of each
10
10
20
£3.50
£3.75
£3.50
£3.50
£3.75
£3.50
£3.50
£3.50
£3.50
£3.75
£3.75
£3.50
£5.95
No. of packs
Total Price per line
£
Subtotal
Postage and Packaging Costs
Post & Packaging
UK
Europe
Rest of the
World
£3.30
£5.75
£9.90
Donation – thank you
TOTAL price £
We hold a large stock of cards, but some designs sell out early. Should this occur, please select box and tick below to
advise what should be done with balance of money.
Send alternative cards, similarly priced
Donation to us
Refund
I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5
April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs)
that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax
do not qualify. I understand the charity will reclaim 28p of tax on every £1 that I gave up to 5 April 2008 and will
reclaim 25p of tax on every £1 that I give on or after 6 April 2008
Print name
Signature
Date
Payment by card I authorise you to debit my card with the total price on this form.
Card number
Issue number
Security number
Name as it appears on your card
Start date
Expiry date
Signature
Payment by cheque
Cheque enclosed for
£
(Sterling only) payable to: GBS Support Group
DELIVERY DETAILS
Name
Address
Postcode
Telephone
logo competition
entries
We are asking for your votes to select our logo for when we become a Charitable Incorporated
Organisation from 1st January 2014, known as Guillain-Barré & Associated Inflammatory
Neuropathies (GAIN).
1
2
3
Guillain-Barré
& Associated
Inflammatory
Neuropathies
4
5
6
Guillain-Barré
& Associated
Inflammatory
Neuropathies
Guillain-Barré & Associated
Inflammatory Neuropathies
Fundraising Information Research Support
7
8
9
GUILLAIN-BARRÉ & ASSOCIATED
INFLAMMATORY NEUROPATHIES
continued over...
Freepost RSKJ-TCUZ-RLEA
GBS Support Group
Woodholme House
Heckington Business Park
Station Road
Heckington, Sleaford
NG34 9JH
logo competition
10
11
GUILLAIN-BARRÉ & ASSOCIATED
INFLAMMATORY NEUROPATHIES
13
12
14
15
Guillain-Barré &
Associated
Inflammatory
Neuropathies
16
17
18
Guillain-Barré
& Associated
Inflammatory
Neuropathies
19
20
21
All votes – postal (freepost) and email ([email protected]) must be returned by Friday 16th August
Only one vote per household can be accepted
Each vote must state either your name or membership number
The winning entry will be the logo with highest number of votes taking into account first, second and third
choices – this will be final and no correspondence will be entered into
The winning logo will be published in the next issue of In The Know
Name:
Membership number:
in the know
My top 3 logos are:
First choice:
Second choice
Third choice

Guillain-Barré Syndrome Support Group

Transcription

Similar documents

GBS Launches New and Improved Website

2012 – 2013 Flu Season: What You Need to Know

September 2014 - Guillain Barré Syndrome Support Group NZ Trust

March 2010 - Guillain Barré Syndrome Support Group NZ Trust

vip security system

Legally compliant email management

GBS pseudo-reference

June 2011 - Guillain Barré Syndrome Support Group NZ Trust

8. Poyart Vaccin streptocoque B - CIC de Vaccinologie Cochin Pasteur

Carrot Broth - Comparison of GBS methods from vaginorectal