Dystoniamatters! - The Dystonia Society

Dystoniamatters!
Issue 58
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Winter 2007
‘Hello darlings...’
Also in this issue...
●
●
Phyllis Yates’ first words in
over 13 years... page 19
IA
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Alternative therapies, Connie’s way, page 15
A day in the life, New York diary page 39
Supported by an Unrestricted
Educational Grant from Ipsen Ltd
Issue 58
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Winter 2007
The Dystonia Society exists to
support people who have any
form of the neurological
movement disorder known
as dystonia, and their families,
through the promotion of
awareness, research and welfare.
THE DYSTONIA SOCIETY
Registered Charity No. 1062595
Company limited by guarantee No. 3309777
1st Floor
Camelford House
89 Albert Embankment
London SE1 7TP
Office: 0845 458 6211
Helpline: 0845 458 6322
Fax: 0845 458 6311
email helpline:
support@dystonia.org.uk
email other enquiries:
info@dystonia.org.uk
www.dystonia.org.uk
Newsletter published at end of:
February, May, August, November
We welcome new ideas for the
newsletter, please call the Editor
to discuss your ideas.
Items intended for publication
should be submitted to the Editor,
eight weeks before publication.
1
ROYAL PATRON
HRH Princess Alexandra, KG, GCVO
PATRONS
Tom Beldon
Sir Geoffrey Littler, KCB
Lord Macdonald of Tradeston, CBE
Derek Thompson
CHAIRMAN
Martin Cross
VICE CHAIRMAN
Fiona Ross, OBE
TRUSTEES
Mike Newbigin, Honorary Treasurer
Graham Ashdown
Sue Day
Roger Edmonds
Tony Flowers
Moira Gwilliam
Penny Richie-Calder
Maureen Sheehan
Alan Tamlyn
CHIEF EXECUTIVE
Philip Eckstein
MEDICAL ADVISOR
Dr Tom Warner, PhD, MRCP
FOUNDER
The late Joan Young
Dystoniamatters! EDITOR
Phil Baldy
Dystoniamatters! DESIGN
Sarah Davies Design (01726) 834833
Dystoniamatters!
Society news
Annual Conference
Around 150 delegates
attended the Dystonia
Society’s AGM and
conference at the
Wellcome Conference
Centre in London
in early November.
The members certainly appreciated
the impressive new venue. ‘This was
certainly the best conference I have
attended’ and ‘I think this year’s AGM
will take some beating’, were just two
of the comments from attendees.
Among the distinguished speakers
at the Conference were Dr Paul Eunson
from Edinburgh who spoke on ‘Children
and dystonia’ and the importance of
early diagnosis and support for children
affected. ‘The potential of too many
children with dystonia is not realised
at school and beyond’, he said. Dr Peter
Moore gave an interesting presentation
on ‘Dystonia – focusing on the future’
in which he identified new directions
for the Society and also suggested that
members use opportunities to get involved
with their local trusts and health services
in order to raise awareness of dystonia.
Alistair Newton spoke on the
European Dystonia Federation and Peter
Meager, National Manager for Scotland
spoke about the physiotherapy project
that has just started (see page 4).
Issue 58
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Winter 2007
From left to right:
Neil Fairburn, Kate Foley
Geoffrey Chem -Yee Tan
●
Essay prize
winners...
The winners of the Jackie
Deakin essay competition,
which is run by the Society for
3rd, 4th and 5th year medical
students, received their prizes
at the conference. Geoffrey
Chem-Yee Tan from the Royal
Free and UCL Medical School
was presented with his first
prize by our patron Lord
Macdonald and Keith Deakin.
Kate Foley from Sheffield
came second and other prize
winners were Neil Fairburn,
Tim Brock, Laura McWhirter,
Musa Basir Sami and
Christopher Groves. Copies
of the seven winning essays
are available to members
directly on the web site
www.dystonia. org.uk or as
printed copies from UK Office.
2
Editorial
One-to-One
Welcome...
A new support service
●
PLANS FOR 2008
As we look to 2008, we
are already planning next
year for the following:
●
Progress on our three
research projects with
at least one new
project launched
●
Our most successful
Awareness Week yet
using information
gained via the members
questionnaire
●
New projects to help
children affected by
dystonia
●
An improved web
site with scope for
membership involvement
●
Staging five regional
conferences
●
Expansion of our One-toOne and Helpline services
3
You will notice some changes. Each
newsletter will now feature a specific
type of dystonia, starting with laryngeal
dystonia. The February issue will focus on
blepharospasm with the May 2008 edition
highlighting cervical dystonia. We are sure
you will find this approach more ‘substantial’
and useful. Let us know what you think.
You will see another change too: we are
no longer including a list of Area Contacts
in the magazine. This comes about because
our newly launched support service,
‘Dystonia One-to-One’ takes over that role.
Now members can call us and tell us exactly
the type of person they would like to speak
to for an informal, supportive chat. We will
do our best to match them against our list
of One-to-One volunteers. We are hugely
grateful to that special band of volunteers
who made up our Area Contacts over the
years. Happily, quite a number of them are
still involved in the new service.
We have very recently undertaken
a mailing to around 1500 ex-members
whose membership had lapsed at least
three years ago and are delighted to
welcome back around fifty readers already.
Remember, the more members we have
the more impact we can have on behalf
of people with dystonia.
An important new service is being launched in
December to provide members with informal,
positive support over the telephone or via email.
A
v
to the Winter newsletter
For an isolating and little known condition like dystonia,
the support that members can give each other is vital.
“We hear every week from members who would like to speak to others
with the same experience”, says CEO Philip Eckstein. “This new service
will enable us to match callers with a One-to-One volunteer who can
share experiences in a supportive way”.
Members will be able to call one central telephone number where
they can discuss their requirements with a staff member. They will then
be matched with a volunteer who has appropriate experience. For instance
a member might find considerable benefit in speaking to someone with
similar symptoms, or the same type of dystonia, or who has had a
certain treatment, or who is also the parent of a child with dystonia.
The new service is a refinement of our previous Area Contact service.
But whereas previously it was not possible for members to easily find
people with similar experience, this should now be possible. The service also
offers better support and clearer guidelines for the volunteers themselves.
How the One-to-One service works
1
Member calls our One-to-One number 0845 899 7111
You will be asked about what sort of person you would like to
be ‘matched’ with and when you would like to be contacted.
2
We will identify a volunteer with suitable experience and
make contact with them to see if they are able to call you.
3
You will then be called by the One-to-One volunteer.
4
We’d also like to follow up with users of the new service some
weeks after the first call to get feedback about their experiences
with the aim of making the service even better in the future.
Philip Eckstein Chief Executive
Dystoniamatters!
Issue 58
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Winter 2007
4
Local 2008
Conferences
Society news
Society news
Research Update
Awareness Week
Next year we are planning
four more regional Living
with Dystonia days as well
as the national conference.
Don’t forget to put them
in your diary.
Each of the three research projects
funded by the Society has made
progress in the past three months:
● Bristol
29 March
● East Midlands (Nottingham)
17 May
● Liverpool
20 September
● AGM /conference (London)
Early November
● South East
Physiotherapy project
Now that the full amount of £150,000
has been raised, the project to evaluate
the benefits of physiotherapy for people
with cervical dystonia has started!
The project is being run at two centres
in Scotland: Glasgow and Aberdeen.
A physiotherapist has been recruited at
each centre and they have both started
their training in France. They’ll be starting
their work with patients after Christmas.
We are delighted to welcome
Maureen Sheehan and Tony
Flowers as new members of
the Board of trustees.
WEBSITE EXPERIENCE
Childhood Onset Dystonia project
NEW TRUSTEES
We are planning big
improvements to the website
in 2008. Do you have ‘web
experience’ or know anyone
who does? If so, we would
love to hear from you.
The HELPLINE will break
for Christmas on 21 Dec and
resume on Monday 31 Dec.
5
If we are to work and lobby effectively
on behalf of our members, we need the
ammunition! The Society plans to send
every member a questionnaire in January
2008 that asks about your treatments
and the everyday challenges you face.
We will also seek your opinions on the
Society’s priorities and the local involvement
you would like. The questionnaire will not
take longer than 15 minutes to complete.
Please do take the time to complete your
copy. The more we know about your
challenges, the more we can help.
Oxford Blepharospasm device trial
We are now at the last hurdle before the
project can start! The final application
to use the simple device that clips to
spectacles is with the MHRA (Medicines
and Healthcare Regulatory Agency).
As soon as we receive approval, the
project can finally begin.
6 December
ASKING THE RIGHT QUESTIONS...
Consultant Paediatric Neurologist,
Dr Paul Eunson, will head a project to
carry out a detailed audit of Scottish
children and youngsters with dystonia
(particularly the causes and treatments).
An application is with the Ethics
Committee, awaiting their approval.
A positive decision is expected in the
next few months.
Dystoniamatters!
Runners and riders
If you have a place in the London
Marathon or would like to run the
race, please contact Joy Bourne on
020 7793 3654. Likewise if you
would like to take part in an exciting
cycle challenge in May 2008.
GRANTS ● Why not see if
you are eligible for a home
insulation grant? Trustee
Alan Tamlyn reports that
if a member is on any
of a number of benefits
(including DLA), they may
be able to apply for a grant
covering up to 100% of the
cost of insulating their home.
Ring the Helpline for more
details on 0845 458 6322.
Thank you
To Helen Barrow from
Gateshead, Tyne and Wear
for her splendid photography
at our Annual Conference
and to Lucy Laing for her
contribution to My Story
who kindly allowed us to
reproduce the photographs.
Good idea...
Following suggestions from readers,
we are planning to produce several items to help people
communicate their dystonia to others. The first is a sticker about having
writer’s cramp. It is designed to be stuck onto a letter written by someone
with writer’s cramp. The other is a card (credit card sized) for people
suffering from laryngeal dystonia. What do readers think? Please call
the office if you are interested is either item. Let us know if you have
any other good ideas on how to communicate your condition to others.
Issue 58
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Winter 2007
6
A Review
Laryngeal dystonia – Special Issue
Dystonia affecting the voice is known as laryngeal dystonia or
spasmodic dysphonia. In this article, Dystonia matters! puts the
questions to two eminent ENT surgeons
who regularly treat people with laryngeal
dystonia (LD): Mr Gerald Brookes and
Mr Maurice Hawthorne.
The statistics published by the renowned
US Mayo Clinic suggest that about 52 people
per million have laryngeal dystonia. This
translates to 3,100 people being affected
in the UK. Mr. Brookes feels this is almost
certainly an underestimate: “As awareness of
laryngeal dystonia grows, so are the numbers
of people being diagnosed,” he says.
There are two principal types of laryngeal
● Mr Gerald Brookes
dystonia – one affecting the adductor muscles
that pull the vocal cords together and the other affecting the abductor
muscles pulling the vocal cords apart. LD of the adductor muscles results
in a strained staccato-like speech while LD of the abductor muscles often
results in a weak, breathy voice that can break in mid-word. It is very
unusual to have complete voice loss as a consequence of laryngeal dystonia.
The symptoms of LD such as strained speech or a breathy voice are
thought to be caused by muscle spasms within the adductor or abductor
muscles. In some patients, however, sudden changes in muscle tension
may simply appear as spasms. Mr. Brookes suggests it is more useful
to think of the symptoms caused by laryngeal dystonia as a problem
of correctly sequencing the complex movements of the vocal cords.
“Laryngeal dystonia is caused by faulty control signals from the brain
to the laryngeal muscles”, Mr. Brookes says, “which results in disruption
of the co-ordination of vocal cord movements.”
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Dystoniamatters!
Adductor LD is the commonest type of
laryngeal dystonia, resulting in around
90% of cases of laryngeal dystonia while
abductor LD is rarer and seen in around
10% of cases. However, there are variations
on these conditions and physicians
occasionally see patients who have a
mixed pattern of dystonia with elements
of abductor and adductor muscle spasms.
“This is rare,” comments Mr. Brookes
“and these mixed patterns are seen in
less than 1% of patients”.
There are a number of conditions which
● Mr Maurice Hawthorne
have similar symptoms to that of LD such
with his son Hugh
as nodules or polyps or potentially tumours
on the vocal cords. The diagnosis of LD must start by excluding these
and other medical problems. “The diagnosis of LD is not always easy,
as the patients’ efforts to compensate for their communication
difficulties may cause additional voice distortion which can mask
the underlying condition” says Mr. Brookes. Patients should also be
cautious about assuming that every case of dysphonia is likely to be
dystonia. “Around one third of the patients I see with initial symptoms
of dysphonia, turn out not to have LD after further investigation”,
says Mr. Hawthorne, “so it is very important therefore that the
patient sees an ENT specialist who can make a careful assessment”.
The main treatment for LD is injections of botulinum toxin into
the muscles causing the abnormal vocal cord movements. Botulinum
toxin can be very effective in lessening the spasms that distort the
vocal cords. The vast majority of people with laryngeal dystonia get
some relief with this treatment. “Around 90% of patients will usually
find their laryngeal dystonia can be successfully treated using botulinum
toxin. It is reassuring to patients to know that the symptoms can usually
be well managed with a course of the drug” says Mr. Hawthorne.
There are also other novel approaches that focus on the ‘reprogramming’
of the pathways in the brain by retraining the voice muscles, (see the
article on Connie Pike’s regime, page 15).
Issue 58
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Winter 2007
8
A Review
(continued)
Laryngeal dystonia – Special Issue
Mr. Brookes is also working on a technique using radiofrequency
treatment to the neck muscles to ‘re-programme’ neural pathways.
He thinks this causes a masking effect thereby improving regulation
of the brain ‘control centre’.
Typically treatment for adductor LD is given sitting up or lying
down. Firstly the throat is treated with local anaesthetic after which
a small injection is given into the affected laryngeal muscles. To guide
the placement of injections, the patient must be attached to an
electro-myography (EMG)
“Laryngeal dystonia is caused
machine that senses the
electrical activity in the
by faulty control signals from
muscles. Normally each
the brain to the laryngeal
patient is offered treatment
muscles... which results in
with botulinum toxin type
disruption of the co-ordination
A following diagnosis.
For those very few patients
of vocal cord movements.”
who develop a ‘resistance’
(ie. anti-bodies) against botulinum toxin type A that will negate the
beneficial effects, there is a type B that is sometimes tried and can
prove effective. However, the likelihood of a patient with voice
problems developing a resistance to botulinum toxin is rare.
Usually small side effects from injections last for one week while
the benefits from the injections can continue for up to four months.
“That is the gold standard,” says Mr. Brookes, “and we try to accurately
adjust the dosage to achieve this. Some patients are ten times more
sensitive to the effects of the toxin than others so careful evaluation
of the patients’ response is necessary to decide the optimum dosage”.
The toxin blocks activity at the nerve-muscle junction and is effective
for a very long time. However, the sprouting of new nerve fibres to
overcome the chemical blockade occurs, which is the reason for
recurrent symptoms from re-innervation.
9
Dystoniamatters!
Laryngeal dystonia normally affects people aged 30s onwards. It is very
rare for the dystonic symptoms to spread to other areas of the body.
“If the symptoms appeared to spread, I would question the original
diagnosis of laryngeal dystonia,” said Mr. Hawthorne.The symptoms of
laryngeal dystonia can go into remission. “However, this is very unusual”
he comments. It is widely accepted that stress can make any type of
dystonia worse and that relaxation can help to mitigate the symptoms.
“While stressful situations can make the symptoms worse, the cause
of dystonia is not stress”, says Mr. Hawthorne.
●
Getting the treatment
The principal treatment centres in the UK are listed on the following
pages. To really make an impact on the patient’s quality of life,
treatment needs to be available when it is needed – generally every
three months at least. Some centres are flexible enough to allow
the patients to change appointment times at a few days notice.
“Every patient is given a three month appointment, but about
30% will call to vary these dates – either earlier or later, as their
current situation dictates,” said Mr. Hawthorne of his weekly clinic
in Middlesbrough and the monthly clinics in Penrith and Newcastle.
However, not all patients are that lucky. We are now increasingly
hearing from members about difficulties in getting timely treatment
as the capacity at centres no longer matches the growing demand
for the service. Appointments are being pushed to four month
or even longer intervals. In other cases it is impossible for patients
to get their treatment at a clinic that is reasonably close.
The Dystonia Society thinks this is unacceptable. We recognise
just how important it is to members to have access to treatments
when they need it. Without it, family life will be hugely affected
and one’s social life suffers. There is also the threat of losing one’s
job. The Society will work with everyone directly affected to try
and get improvements in the problem areas. If you are having
problems, please contact Val Wells, Service Development Manager
on 0845 458 6299.
Issue 58
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Winter 2007
10
Important note: This is a list of treatment centres we are aware of.
Botulinum toxin clinics
If you know of any omissions or amendments that should be made,
or if you would like further information on any of these centres,
please call the Helpline on 0845 458 6322.
for laryngeal dystonia
LOCATION
ENT CLINIC
CONSULTANT
FREQUENCY OF CLINICS
Birmingham
Blackpool
Bradford
Bristol
Canterbury
Cumbria
Huddersfield
Liverpool
Liverpool
London (Grays Inn Road)
London (Queen Square)
London (Harley Street)
Manchester
Middlesbrough
Newcastle-upon-Tyne
Nottingham
Oxford
Plymouth
Sheffield
Northern Ireland, Belfast
Scotland, Aberdeen
Scotland, Dundee
Scotland, Edinburgh
Scotland, Glasgow
Scotland, Melrose
Wales, Swansea
Wales, Wrexham
Queen Elizabeth Hospital
Blackpool Victoria Hospital
Bradford Royal Infirmary
St Michaels Hospital
Kent and Canterbury Hospital
Penrith Hospital
Huddersfield Royal Infirmary
University Hospital Aintree
Royal Liverpool Hospital
Royal Throat Nose and Ear Hospital
The National Hospital for Neurology
The Harley Street Voice Centre (1)
Manchester Royal Infirmary
James Cook University Hospital
Walkergate Park for Neuro Rehabilitation
Queens Medical Centre
John Radcliffe Hospital
Derriford Hospital
Royal Hallamshire Hospital
Royal Victoria Hospital
Aberdeen Royal Infirmary
Ninewells Hospital
Edinburgh Royal Infirmary
Glasgow Royal Infirmary
Borders General Hospital
Singleton Hospital
Maelor General Hospital
Mr D Proops
Mr Nigam
Mr Tucker
Mr G Porter
Mr D Mitchell
Mr M Hawthorne
Mr Newbeggin
Mr A Swift
Mr McCormick
Mr J Rubin
Mr G Brookes
Mr G Brookes
Mr Horner
Mr M Hawthorne
Mr M Hawthorne
Mr J McGlashan
Mr G J Bates
Mr M Bridger
Mr A Parker
Mr Primrose
Mr A Hussain
Professor R Blair
Mr M Armstrong
Mr K MacKenzie
Mr M Armstrong
Mr C Fielder
Mr J Coakley
Monthly
2 – 3 times per year
Every 6 weeks
Every 2 months
Monthly
Every 2 weeks
Every 2 weeks
By appointment
Weekly
Every 3 weeks
Monthly
2 – 3 times per year
Monthly
Varies
Monthly
4 – 5 times per year
(1) available for treatment of NHS patients with prior authorisation of their Primary Care Trust
11
Dystoniamatters!
Issue 58
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Winter 2007
12
Helpful hints
Laryngeal dystonia
Special Issue
Below are excerpts from an information
pamphlet produced by Norma Barer
● Dr Renata Whurr
and William Vanderlinde of the National
Spasmodic Dysphonia Association in the US. (www.dysphonia.org).
They have been identified by Dr. Renata Whurr, Specialist Speech
and Language Therapist at the National Hospital for Neurology and
Neurosurgery, London as particularly useful to first time patients.
1. Benefits of botulinum toxin injections
For many spasmodic dysphonia patients, injections provide the freedom
to speak more easily. Although not a cure, most people note a marked
improvement in the quality of their voice and in the effort required
to speak. The benefits are temporary (lasting six weeks to six months)
and can be repeated as required. The length of benefit will vary for
each individual.
2. Your injection
If this is your first injection, there is nothing to be nervous about.
This is a safe and relatively simple procedure, taking no more than a
few minutes to perform. Your doctor will use a local anaesthetic to
minimise any discomfort associated with the injection. Most people
do not find the experience painful.
Before your injection, try to relax and breathe quietly. Focusing
on the relief you will soon receive can help to diminish any anxiety.
3. After your injection
After the injection, you are free to go about your regular routine.
There are no immediate after-effects. The length of time for the toxin
to take effect can vary from 24 hours to several days. Most patients
experience a weakened voice for one to three weeks following the
injection. Often, the voice becomes very soft or ‘breathy.’
13
Dystoniamatters!
The breathiness can last from several days to weeks, depending on
the individual patient and the dose of toxin given.
At first, you may not have the power to speak in a loud voice.
Be patient and enjoy talking. Your voice will gradually become
stronger. Voice rest is not necessary. As the effect of the toxin begins
to wear off, you will experience various changes in your voice. This
is normal and to be expected. Try to relax and enjoy these changes.
4. Post-injection side effects
There are two minor discomforts sometimes associated with your
injections, which can occur shortly afterwards. However, not all
patients experience these discomforts. Both are temporary. One is
the breathiness and the other is a slight difficulty in swallowing liquids.
This is easily overcome by sipping slowly rather than swallowing quickly!
Some patients report a rough or scratchy voice after their injection.
This may be caused by a change in the tension of the vocal cords,
resulting in diplophonia (two vocal cords vibrating at different
frequencies). This scratchy voice tends to recover gradually over
a period of one to three months.
A few patients have reported occasional side effects such as difficulty
swallowing, trouble clearing their throat, problem with swallowing
too much air, etc. These side effects, which may vary from mildly
to extremely annoying, are apparently due to the spreading of the
botulinum toxin into the other muscles. The most severe side effects
usually go away in one or two weeks.
I have found that during my ‘breathy’ period, it is better not to force
my voice to be louder than it is. In noisy situations, I try to move away
from the centre of noise and explain that my voice is not very loud. It
certainly gets the attention of your listeners! You will find that speaking
over the telephone is not nearly as difficult as it was before the injection.
Speak slowly, enunciate and remember to pause and breathe often.
For me botulinum toxin injections are miraculous! After the injection,
my voice may not always be perfect but the improvement is amazing.
I am once again able to express myself without inhibitions and to once
again be spontaneous.
Issue 58
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Winter 2007
14
Alternative therapies
Connie’s way
By Peter Meager
Connie Pike is an American speech and
language therapist. Around three years ago,
she developed severe spasmodic dysphonia
(SD for short – also known as laryngeal dystonia). As a result, she
developed a non-drug, holistic programme to tackle her symptoms.
Today you would not know she had a speech problem and she
runs a clinic in her home near Tampa in Florida to treat others
who suffer from SD. In June, Peter Meager had the opportunity
of experiencing what Connie is advocating at first hand.
While in London, I was able to sit in on a meeting Connie was having
with English SD sufferers in the Society’s UK office. The kind of things
she was saying made sense to me and I came home wondering if it could
really work. Christine, my wife, said that she really thought I should go
and agreed to go with me. So, we decided to dig into our savings and
four weeks later were flying to Orlando en route for Tampa.
There were six of us at the clinic, the other five being American ladies
from various parts of the States. All of them had symptoms much worse
than mine. I had been having botulinum toxin injections for over eleven
years and when they worked my voice wasn’t too bad. But the last
injections hadn’t worked and I was desperate to try anything which
would get me out of this cycle of injections – waiting to see if they
worked; struggling when the benefits (if any) wore off and then waiting
for the date of the next injections so that I could get on with my life again.
There are several elements in the five day clinic programme. First
there is traditional speech and language therapy carried out by Connie
Pike. Then there is optimal breathing with Mike White who, over the last
thirty years, has developed a course to improve breathing. Although this
is not primarily for people with speech problems it has been found to be
of great benefit to many who have them. There is a psycho-social aspect
15
Dystoniamatters!
(the Taylor-Johnson
Temperament Analysis
Profile) and also a
spiritual element.
As the symptoms of
SD can be different for
almost every individual,
we learned many general
● Peter & Christine Meager
principles and then,
with Connie and Mike’s guidance, could pick out which might help us
individually. One of the common characteristics is tension in the throat
which causes the vocal cords to go into spasm. One of the main aims of
the clinic is to take the focus away from the throat and bring it up into
the front of the face.
One way of doing this is by humming. Another is by singing,
making ‘oo’ sounds. We were given a book called Set Your Voice Free
by Roger Love. This has a CD with it with singing exercises which we
practised as a group. We also had a PC programme called Voice Print,
which allows you to check your voice quality and also that you are
speaking at the correct pitch.
The breathing exercises were very intensive and it was during a
one-to-one session with Mike White that the breakthrough came for
me. One second there was the tight, strained, rasping, breathy voice
and the next there was a deep, free resonant sound, filling the room.
I stopped and exclaimed, ‘Where did that come from?’ Then I cried.
It was like meeting a long lost friend. I could hardly remember having
been able to make that kind of sound. After that I had to start learning
to use this new voice for speaking. By the end of the clinic each of us
had seen an improvement in our voices.
It is recognised that several things can affect the vocal cords and
therefore might aggrevate SD symptoms. These were highlighted and
we were advised to avoid them for at least six months to give us the
best possible chance of maintaining any progress we had made.
Issue 58
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Winter 2007
16
Alternative therapies
(continued)
Connie’s way
Comments & tips from members
of the Laryngeal Dystonia group
”
”I spent a lot of time preparing for a job interview and sought advice
from the on-line American spasmodic dysphonia bulletin board,”
writes Debbie Skerrett. “I told people I had a muscle disorder that
affected my voice – not a neurological disorder because I find people
then assume I am going to keel over at any moment. I’m really pleased
to say I was offered the job as a medical social worker!”
● The on-line SD Bulletin Board: www.dysphonia-bb.org/forums/sd/
Alcohol, caffeine and dairy products
come into this category. We were also
advised to try a diet which is at least
75% vegetarian. In addition, to help
maintain our breathing efficiency, we
were told to take at least three, thirty
minute exercise sessions per week.
After nearly three months the
improvement in my speech has been
maintained, despite two or three blips.
My consultant observed that my voice
was better than he had ever heard it.
Is this a cure for SD, or is the brain
learning a new pathway for speech
– by-passing the malfunctioning
part? Whichever it is, I’m glad
I went and it’s working for me.
Liz Hope explains: I tried The Journey – a mind, body and spirit
organisation that brings together beliefs and experience, linked to
psychological therapies. I can now speak without effort and have not
had any effective treatment for nearly two years. Whilst I would love
to know why things have changed, I am content with the result.
● For anyone interested, the web site is www.thejourney.com
“It would be good to see much better availability of treatment for those
with LD when we need it, within reasonable travelling distance from where
we live,” comments Liz Armstrong. “Many patients are denied treatment
they need to improve the quality of their lives, due to clinics being closed
to new patients and longer waiting lists between appointments.”
Essential Information
Ivy Black says: “My first injection was Dec ‘88, making me the very first
in the country to have botulinum toxin treatment for my condition. Since
then, I’ve had 91 injections although my appointments now seem to have
been extended to six months, so I may have lost my voice by Christmas!”
Connie Pike: www.freetospeaktherapy.com
Cost of clinic: US $3000 (from start of 2008)
plus travel and accommodation
Roger Love: Set Your Voice Free (ISBN 0-316-44158-9 / US $15.99)
Optimal Breathing: www.breathing.com
Voice Print: www.vocalinnovations.com
Taylor-Johnson Assessment: www.tjta.com
Free to Speak by Connie Pike costs £10 (including p+p)
and a copy can be obtained by ringing Roz on 0845 458 6211
or emailing roz@dystonia.org.uk
17
Notice board
Dystoniamatters!
“I am a professional trainer. I always start by explaining that I have
spasmodic torticollis and dysphonia (it’s good publicity for a condition I’d
never heard of until it was diagnosed) and I tell the ones at the back to
shout out if they can’t hear so I can mime the rest,” reports Alec Sandison.
●
National Spasmodic Dysphonia Association www.dysphonia.org
●
To join the laryngeal dystonia group of the Dystonia Society,
please contact Moira Gwilliam via the Dystonia Society.
Issue 58
●
Winter 2007
18
My story
Hello darlings...
By Lucy Laing
When Phyllis Yates
lost her voice more
than 13 years ago
she despaired of
ever being able
to say hello to
her beloved
granddaughters...
Ever since Leanne,
● Phyllis & granddaughters Donna (left) & Leanne
13, and Donna, 11,
were born in 1994 and 1996, Phyllis has never been able to hold a
conversation with them. She would play games with them as toddlers
and give them cuddles, but has never been able to say ‘I love you’.
Phyllis said: “It was wonderful to be a grandmother and I loved my
granddaughters but I’ve had to watch my granddaughters being born
and growing up without being able to talk to them. It has been so
frustrating. All I wanted to do was talk to them; ask how they were
doing at school, and just to tell them that I loved them. We had a
great relationship and my son John explained to them why I couldn’t
speak, so they were used to me being silent. But I really wished that
I could speak to them and ask them about their friends and school.
And most of all I just wanted to tell them that I loved them.”
Phyllis, who is 73, lives in Lowestoft with husband George, a
former crane driver. She had been able to speak perfectly normally
until she went to a party at her sister’s house in 1993 and woke up
the following morning unable to speak.
She said: “I opened my mouth the following morning and no words
came out. I couldn’t understand it. I had been able to speak perfectly
the night before, yet now I couldn’t make a single word come out.
19
Dystoniamatters!
It was terrifying. I couldn’t tell George
what had happened, but he could see
that I couldn’t speak.”
Phyllis and George went to see
her GP and were referred to an ear,
nose and throat specialist at her local
hospital, but neither could provide
any answers.
“No one could understand what
had happened to my voice. I was
treated by a psychiatrist as it
was thought my problem was
psychological but that didn’t
work either. I was even given
a bottle of indigestion remedy,
but nothing worked. My voice
never came back,” she added.
She spent the next decade
unable to answer the phone,
answer the door to anyone or
even go shopping. “It was just
impossible. George had to do
everything and I felt completely
helpless. I couldn’t go shopping
because I couldn’t ask for
anything, or communicate with
any of the shop assistants”, she
said. “I got very depressed as
I’d gone from living a normal life, to living in a shadow, without any
independence. George got very good at lip reading. He could understand
what I was trying to say just by reading my lips. So I didn’t have to
resort to writing things down for him. He would always understand
me. He was a rock of support – I couldn’t have done it on my own.”
Issue 58
●
Winter 2007
20
My story
continued
“It seemed so strange
hearing my own
voice again. I’d
almost forgotten
what I sounded like.
I was so thrilled and
so was George.”
●
George & Phyllis
In October last year, she saw a specialist in Harley Street, London for a
private consultation and, after years of not knowing what was wrong,
Phyllis was finally diagnosed with laryngeal dystonia, a neurological
voice disorder that involves involuntary spasms of the vocal cords,
causing speech interruptions, or in the rare case of Phyllis, the complete
disappearance of her voice. She said: “I was so shocked when I was
diagnosed, but it was a relief too, after years of doctors just believing
that it was all in my head. Finally I had some answers.”
Phyllis underwent her first treatment in May this year where she was
injected with botulinum toxin A into the voice box, which has released
the muscle spasms. Her second injection resulted in some voice
improvement. Then after her third injection two months ago, she finally
got her voice back properly. She said: “It seemed so strange hearing
my own voice again. I’d almost forgotten what I sounded like. I was so
thrilled and so was George. My voice was wobbly at first as I’d been so
out of practice, and I was only able to talk for a few minutes at a time.
Also it came out very loud at first – I was almost shouting – as I didn’t
have much control over my vocal cords.
But the first thing I wanted to say was ‘hello darlings,’ to my
granddaughters. They were so shocked when they heard me speak as
they had never heard me before. Now I ask them all the things that
21
Dystoniamatters!
I’ve always wanted to ask them and they
tell me how they are getting on at school,
which is wonderful.”
Phyllis has now got her voice completely
back, although she is still having the
injections every four months. “The specialist
didn’t know whether the treatment would
work,” she added, “but it has been
marvellous and I am very grateful. It has
given me not only my voice back – but
my life back too. The only thing is that
I can nag George as much as I like now.
He’s had a quiet life for 13 years – and
I’ve got a lot of catching up to do!”
The Harley Street
ENT Clinic can
be contacted on:
020 7224 2350
● Phyllis’s treatment has taken place in the Harley Street
Voice Centre at the Harley Street ENT Clinic in London by
Mr Gerald Brookes, Consultant ENT Surgeon. The clinic’s ethos
is that its state of the art diagnostic and treatment facilities
should be available to all patients. Despite being a specialised
unit in a private clinic, the Voice Centre also treats NHS patients
for NHS tariff rates funded by their Primary Care Trust (PCT).
Phyllis’s treatment has therefore been paid for completely by
her local PCT. Mr. Brookes commented:
“This lady’s voice result is as close to a modern day
miracle as you can get. She has a severe form of a very
uncommon type of laryngeal dystonia. Over the last 20 years
I have only previously treated 2 or 3 similar dystonia patients
with complete loss of voice in a personal series of nearly
700 cases. I am delighted with the outcome of Phyllis’s
treatment and for the new lease of life it has given her.”
Issue 58
●
Winter 2007
22
Your Questions
& Answers...
With thanks to Dr Tom Warner, Medical Director
of the Society for responses to certain questions.
Q. Following the question
in the previous issue about
neuroleptic drugs causing
tardive dystonia, could you
confirm that symptoms are
likely to disappear if a person
stops taking these drugs?
● It is important to distinguish
between an acute dystonic
reaction which is a response
often to a single dose of a
dopamine blocking drug and
tardive dystonia. The latter usually
comes on after chronic exposure
to such drugs and is the dystonia
most commonly seen in patients
treated with neuroleptic drugs.
Whilst in the great majority
of acute dystonic reactions, the
dystonia resolves once the drug
is stopped, unfortunately for
tardive dystonia this is rarely
the case and the dystonia will
persist. Furthermore, there are
major risks of a relapse of the
psychiatric condition if the drugs
are stopped. It is vital that drugs
used for treating psychiatric
conditions are not just stopped
if tardive dystonia develops.
27
The possible options need
to be discussed with mental
health professionals and
sometimes neurologists.
We also asked the mental
health charity, MIND, for their
opinion. Their response was:
“When tardive dyskinesia develops
in response to neuroleptic drugs,
it may persist after the drugs are
stopped, and indeed it may only
appear after someone has stopped
the drug, because the drug has
disguised the effect. For this reason
people may be advised to continue
taking the drug in order to
continue masking the dyskinesia.
Psychiatric advice now is that if
people begin to show signs of
tardive dyskinesia when taking these
drugs, they should stop taking them
as soon as possible, to minimise the
likelihood that this effect will
continue. And in all cases, people
should take the smallest possible
effective dose for the shortest
possible time. In spite of this advice.
people are still often expected to
go on taking these drugs at high
doses, and indefinitely.
Dystoniamatters!
The longer you have been taking
a drug, the more difficult you
are likely to find withdrawal,
and the longer you should expect
it to take. However coming off
neuroleptic drugs is not impossible
providing it is done with care.
Many people do manage to stop
taking them, and to find other
ways of resolving or coping with
their psychotic experiences.”
It is important that you liaise
closely with your physician if you
want to change your drug regime.
Q. Does Erb’s palsy have
any connection to spasmodic
torticollis?
● There is no connection. Erb’s
palsy can be due to birth trauma
and is caused by damage to the
brachial plexus as it runs through
the axilla (armpit). The brachial
plexus contains nerves that supply
the arms. Erb’s palsy can lead to
weakness and sometimes loss of
feeling. It would be unusual to
affect the neck muscles, particularly
after a period of many years after
the original insult.
Q. Is there any connection
between paroxysmal dystonia
and periods of paralysis?
similarities to another episodic
disorder called periodic paralysis
and I wonder whether there may
be some connection. It is always
difficult to speculate further
without full clinical details.
Q. In your fact sheet on
paroxysmal dystonia you say:
“during an attack, people do
not lose consciousness, and
are completely aware of their
surroundings. Paroxysmal
dystonias do not affect the
mind or the sense.” I don’t
believe this is correct. I have
on a number of occasions lost
consciousness especially when
the pain gets bad and I wake
up later not able to move.
● Dr Warner writes: The vast
majority of people with paroxysmal
dystonia do not lose consciousness.
This correspondent has very unusual
symptoms. Rarely paroxysmal
dystonia is associated with epilepsy,
although I am not convinced that
this is the case with this individual.
I can only suggest that he
approaches his neurologist and
suggest that if this is felt to be the
case, then perhaps the neurologist
could let us know so we can
amend our records / literature.
● Dr Warner writes: I am not
aware of any connection although
paroxysmal dystonia has some
Issue 58
●
Winter 2007
HELPLINE 0845 458 6322
28
Questions & Answers
Q. I have cervical dystonia
and was getting very positive
benefits from botulinum toxin
injections over the past 18 years,
with small amounts injected
monthly. Then recently my usual
consultant was on leave and
a covering consultant gave me
the full amount in one injection
and told me not to come back
for 3 months. These injections
resulted in terrible pain in eyes,
neck and ear which I had not
experienced before. How do I
counter these negative effects?
● I am afraid there is not much
to counter the effects other than
the usual painkillers if the pain is
a major problem, and time. The
effects will wear off but may take
several weeks. The majority of
people receiving botulinum toxin
for dystonia have injections every
3 – 4 months, rather than monthly.
Q. I have been receiving
botulinum toxin injections for
four years without side effects.
However, following my last
injection, I developed an itch
(not rash) which is unbearable.
I was initially told that the itch
was not related to injections
but a new doctor has told me
29
(continued)
that 1 in 2000 suffer from itch as
a side effect. Can you comment?
● It would be surprising to
develop an allergic response such
as an itch after this time if the
botulinum toxin preparation was
the same. I am not aware of any
other cases. If the preparation has
changed then it is possible. It may
also be possible to prevent further
such reactions with the use of
antihistamines.
Q. My girlfriend and I have just
found out that she has been
diagnosed with paroxysmal
dystonia. She has major back
spasms at present and I was
wondering whether medications
and spasms may prevent her
from having children, or if she
may be advised not to have
children. This is a concern for
us both as we are both still
young (under 25). Could you
please help put our minds at
ease, or let us know what the
risks may be?
● It is important that your
diagnosis is correct. If your do
have dystonia then the type is
important but unlikely to have
major effect on pregnancy. It is
possible that the dystonia may
Dystoniamatters!
be genetic and thereby there is a
risk children could have the same.
Drugs such Carbamazepine used
to treat this could have the
potential risk of increased foetal
abnormalities. You and your
girlfriend will need to discuss this
with the physician supervising
treatment when you are thinking
about starting a family.
Q. I am looking for a dentist
with experience of working
with people with neurological
conditions. My anxiety is that
my head moves and I suffer
from facial spasms which
makes it very difficult to
hold my mouth open.
● Some Primary Care Trusts
(PCT) have community dental
services which treat people with
particular needs: adults with
special needs, those that are
housebound, hospital long-stay
patients or in-patients or those
living with a physical or mental
illness. In the case of housebound
patients a domiciliary dental
service can be provided.
Referrals to the dental service
have to go via a dentist or GP.
In the case of a referral made
by a GP they would need to
Issue 58
●
Winter 2007
obtain a referral form from the
priority / community dental service
(as only referrals completed
on appropriate forms will be
considered). The number for this
service can be obtained from the
local PCT. People need to be aware
that unfortunately at this time
not all PCT’s have this facility
and some people requiring this
type of treatment may still
have to pay privately.
Q. I have just had
my application for
Disability Living
Allowance turned
down. What should
I do now? I had
a real problem
explaining the
variability of my dystonia
experience on the form.
Do you have any advice?
● The Society recently met with
the Department of Work and
Pensions who are responsible
for the DLA. We have produced
a fact sheet to help with this.
The fact sheet is available on
the website or you can contact
the Helpline on 0845 458 6322.
30
Reader’s letters
Have your say...
●
Alison Bird, Essex
Happy ending
In August 2005 I was housebound. My
head faced up and left, it was shaking
tremendously and I couldn’t see to walk
straight. I was in constant agony and
I felt like a freak; that my life had come
to an end. I was terrified that whatever
I had was going to kill me. All this at
the age of 31, with my life ahead of me.
It was only then that I was finally
diagnosed with spasmodic torticollis.
It left me feeling frightened as I’d never
heard of dystonia, but there was also a sense of reassurance that it
wasn’t terminal, that I hadn’t imagined it, that it wasn’t depression or
whiplash and there could be light at the end of the tunnel with treatment.
Shortly before the torticollis had become severe, I had fallen in love
with Fergus. I had moved to the countryside, near my parents and then
the torticollis did its worst and I thought that Fergus would leave me.
I had been too scared to tell anybody that something odd had been
happening to my body and it was easy enough to hide the early
symptoms by drinking copious amounts of wine with friends.
A few months later Fergus proposed and I was determined to be
able to walk myself down the aisle without my head facing up and
shaking uncontrollably. After a year of injections, Clonazepam and
some great physiotherapy and acupuncture, I achieved my goal and
also raised £300 for dystonia from our wedding collection.
With all the treatment and family support I was back to feeling
normal most of the time and in May 2007 we had our first baby,
Poppy. I have been in partial remission for some time but it’s still
a battle to fight and keep on top of every day.
31
Dystoniamatters!
●
Jim Howson, Kent
Cure
I am writing to comment on the inference, in recent articles published
in our newsletter, that spasmodic torticollis can never be cured – only
alleviated. In the early 1970s my wife developed this condition and,
after the usual round of advice to try acupuncture, head massage,
psychiatry etc, the situation was becoming desperate.
Fortunately, I then heard of an operation being carried out routinely
at Oldchurch Hospital in Romford, Essex. I persuaded my GP to refer
us there and we saw a surgeon called Mr. Andrew. He was prepared
to operate in this case but warned my wife that there was (a) a slight
risk of permanent further disablement, (b) a virtual certainty of a small
amount of slurring of the speech but (c) a good chance of a complete
cure of the torticollis. She was verging on suicide and readily agreed
to the operation.
The surgeon carried out his procedure which involved brain surgery
and the turning of the neck was completely eliminated! However, there
was (and still is) a very slight impairment in speech. We were overjoyed
of course and my wife remains in good health at the age of 72.
●
Jan Lucas, Kent
Passport renewal
I have suffered from cervical dystonia for 16 years. My reason for
contacting you is regarding the problems I had renewing my passport
this year. My photographs did not comply with the new guidelines
because my neck was slightly twisted to the side and my renewal was
deferred. I contacted Belfast by telephone and offered to attend a
face-to-face interview with the authorities who could see that this was
my natural stance. I was advised that the only way around the issue,
at my suggestion, was for them to receive confirmation from my GP,
who willingly agreed to write a four line letter which cost me £32!
Obtaining my passport was a very expensive exercise, not only
financially but also coming up against an immovable authoritarian force
that would not even meet me to confirm my situation. It upset and
embarrassed me and highlighted a physical problem that I struggle so
very hard to cope with in my everyday life and, where possible, to forget!
Issue 58
●
Winter 2007
32
Reader’s letters...
●
continued
Janet Baird, East Sussex
●
Vicki Bennett, Hants
Iridology
Sticker idea
During the time when my symptoms of oromandibular dystonia began
until I found the cause (a period of eight years), I consulted many
complimentary and alternative therapists. Some were excellent, others
were mediocre and a few who were plain weird!
Finally in 1993, while studying to be a nutritionist and at my lowest
point, I went on a course to study iridology, which is the examination
and analysis of the coloured portion of the eye which determines factors
that may be important in the prevention and treatment of disease.
It was then I discovered the cause of my dystonia. On the left side
of my mouth was a mercury filling. It had been leaking into my mouth
for years. Many nerves pass via the temporomandibular joint in the
lower jaw on their way to the brain and this was causing the dystonia.
Following removal of the filling by a mercury free dentist, using
the correct safety procedure to protect the patient (any other method
is dangerous) and having chelation treatment to remove the mercury,
I am now 95% cured.
A trip to our local supermarket the other day got my partner and
myself thinking. We were parked in the disabled bay and next to our
car was a vehicle displaying a sticker briefly outlining their medical
condition. It certainly caught our attention to an illness we were both
unfamiliar with – pulmonary hypertension.
‘What a brilliant idea!’ I thought and wondered if the Dystonia Society
had ever considered such a scheme. Not only would it back up the
Blue Badge, but most importantly it would attract public awareness for
our society. I appreciate this could be uncomfortable for some members,
displaying their illness for all to see, but obviously that’s freedom of
choice. Personally, it would give a boost to my flagging confidence, as
many a time I’ve felt uneasy when I’ve parked in a disabled bay and got
a disapproving look from an individual, the moment I’ve stepped out of
the car despite the badge and the lopsided head!
●
Helen Barrow, Newcastle upon Tyne
●
New goals
I have been diagnosed with spasmodic torticollis for over three years
now and sadly the condition has progressed. The botulinum toxin
treatment has had little effect. The spasms, twists and the pulls have
gradually appeared in more areas of my body, affecting not only my
neck but both shoulders, my arms and now stiffness in the hip.
I am still learning to adapt to my new life, finding new hobbies, new
goals and dreams which are a lot different to those I’d had even a few
years ago. But I have discovered if you stay still and think of the things you
have lost, you will be left behind and loneliness will be your only friend.
I have learned it is vital to remain focused and to keep going, to keep
seeking new goals or else you risk letting the condition take you over.
It’s you who has to take control of it. That’s easier said than done,
I know but then this is why an organisation such as the Dystonia
Society is so important.
33
Editor’s note: That’s a good idea Vicki.
What do other reader’s think?
Dystoniamatters!
Judy Reeves, West London
Update
I am writing to let you know how things are going with my injections.
The first in May didn’t really make any difference and I was a little
disappointed but was still hopeful. I had my second injection in
September and am now experiencing a change in the movement
in my neck. I am able to voluntarily control my neck. Generally things
are better but if I’m a little tired and stressed, the spasms and twisting
start again, if only for a short while.
Since being in contact with the Dystonia Society
and receiving so much support and encouragement
from members, my self-esteem is slowly being healed.
Please send all your letters to: The Editor
1st floor, Camelford House 89 Albert Embankment, London SE1 7TP
Issue 58
●
Winter 2007
34
Top form
Trustee Graham
Ashdown travelled to
Felpham near Bognor
to collect a £2,500
cheque from the
Community College.
Students have raised
funds for several
charities through
various activities and
allocated this sum for
the Dystonia Society.
David Paske, a
member of the Society
from Bognor Regis, is
a teacher at the college
and his daughter has
generalised dystonia
and is now completely
reliant on special care.
David says that
although students
knew of his daughter’s
condition, he had no
influence on their
choice of charity.
Fundraising news
and events
●
Joanne Day
●
Denise with her dad
True grit
Ritz style
A total of £4,000
and awareness of
dystonia were raised
at Cannock Rotary
Club’s Dragon Boat
Race in August. There
were 21 teams competing
with two having been sponsored to
raise funds for the Dystonia Society.
Around 60 guests were
invited to a garden party
at the home of Denise
Flowers in Feltham, West
London and raised £780
with more expected from
matched-funding by the
Royal Bank of Scotland.
The event was based on high tea served at
the plush Ritz Hotel in the Strand, London
and even had menus printed, along with
a raffle and tombola stall.
One of the rowers was our very own Joanne
Day, who was the only disabled person rowing
and she was awarded a special medal by the
organisers for ‘True Grit and Determination’.
Thanks also to Joanne’s brother, Richard,
and RWE Systems.
Heroic Hever
Many thanks to Terry Newman and Pat Whitty
for choosing us as one of the charities
to benefit from their year of
captaincy at Hever Golf Club.
We have received the magnificent
sum of £7,562 so far with the
promise a little more will be
added before the end of their
captaincy year.
●
35
Fundraising news
and events
Recycling
So far we have received £176 from
Cartridges4Causes from the mobile
phones, inkjet and laser cartridges recycling
scheme. Recycling phones not only help
the environment but is a fantastic way
to raise money for the Society. If you or
anyone you know receives a new mobile
for Christmas, please consider recycling
your old one by registering online at
www.cartridges4causes.co.uk/recycling
Or call 0845 466 7147 for your free mobile
phone recycling bag.
Club captain Terry Newman
and ladies captain Pat Whitty
Dystoniamatters!
Issue 58
●
Winter 2007
On yer bike
Make a note in your
diary for Saturday,
10 May 2008. There will
be a 25 mile sponsored
bike ride around
Rutland Water and we
hope to recruit as many
cyclists as possible to
raise money and also
help raise awareness.
Free places are available
to members, their
families and friends.
Further details from
Joy Bourne: call her on
020 7793 3654 or email
joy@dystonia.org.uk
36
Thanks Helen!
We are very grateful to
Helen Curd (pictured
above) who generously
asked guests at her 80th
birthday celebrations to
make a donation to the
Society in lieu of gifts.
New heights...
Val Wells had so much
fun doing her first ever
skydive in New Zealand
that she plans to repeat
the experience and
raise £2,000 by
falling out of a plane
again in February.
Please sponsor Val
by visiting the website
www.justgiving.com
/valwells or send her a
cheque via the UK office.
37
Fundraising news
and events
Fundraising news Every click
So far, nearly thirty
Rose Day
Hindsight
Congratulations to
everyone who took
part in the successful
Alexandra Rose Day
collections this year.
Over £1,400 was
raised. Just four groups
took part but we hope
that many more of you will join Rose Day
2008. The London street collection will
take place on 18 June and the national
collections on 21 June next year.
If you take part in Rose Day collections,
you can also apply to the Special Appeal
fund for a grant towards a project or
your running costs. You can find out
more by looking at their website
www.alexandraroseday.org.uk or call
Mrs. Margaret Stock on 01252 726171.
In October,
a fundraising
event, which
● Nikki Parkin (centre)
was organised
by Nikki Parkin, a dystonia sufferer, took
place in London Colney, Hertfordshire.
Guests danced the night away to music by
rock band Hindsight, complete with nibbles
and a free bar – thanks to a donation from
Tesco and one of the guests. A raffle was
drawn by the local Deputy Mayor, Councillor
Geoff Harrison.
Nikki said: “For me, the most important
aspects of the evening were raising £600
for the Society and giving hope to another
local sufferer who read my story in a local
newspaper and came along to the event
with her family.”
Hydroactive
Here are some of
the runners who ran
for us in the Hydro
Active Women’s
Challenge in Hyde
Park, London in September (right to left
Rosalind Fell, Coral Datta, Anne Chadwick
and her two daughters). Well done to all!
Dystoniamatters!
●
●
Hilda collecting
Issue 58
●
Winter 2007
of you are using
Everyclick instead
of your usual
search engine
and by doing
so have raised
£137.61. Using
everyclick.com is
a highly effective
way for you to raise
money for us.
It’s really simple.
Every search you make
earns money for the
Dystonia Society.
Please log on to
www.everyclick.com
to find out how to
make Everyclick your
home page when you
search the web or
shop on-line.
Trust boost
The Lincolnshire support group
were thrilled to receive the news
of a grant from the John and
Lucille van Geest Foundation
for £1,500. The foundation
offers support for medical
research and welfare purposes.
A day in the life...
Our New York diary
By Gus Macdonald, our patron
Contacts Corner
✎
My grandson Dylan has a passion for New York. He also has
generalised dystonia. Our challenge was to leave behind his
normal support systems and find ways to explore Manhattan.
If you would like to contact any of the following
people, please ring Roz at central office, on:
0845 458 6211 or email: roz@dystonia.org.uk
●
Member with hemi dystonia, tardive dyskinesia and
spasmodic torticollis, would like to contact others
with a similar combination of symptoms.
●
Member with spasmodic torticollis and spondylosis
would like to contact others with similar symptoms.
●
A member would like to contact any people with
Meige’s syndrome or cranial dystonia.
●
Member from Liverpool is interested in hearing from
anyone with paroxysmal dystonia.
●
A member who currently is not in need of treatment,
following 7 years of botulinum toxin injections, would
like to speak to another member who has experienced
a long period without injections.
●
A member in Tyne & Wear with multi-focal dystonia
would like to make contact by email with other people with
dystonia. Members in the North East with any neurological
conditions who would like to join a local social group can
also make contact with this member via email.
●
A member who’s pregnant and has had Deep Brain
Stimulation would like to contact other members who are
going through / have gone through pregnancy and had DBS.
Dylan and his father Paul started their search months ago on the internet.
With a few clicks they found Silverjet, one of the new business class
carriers flying out of London. Silverjet seats all convert to flat beds;
their flights take only a hundred or so passengers and at £500 each
way are much cheaper than business class on scheduled airlines.
Another advantage is their Silverjet terminal at Luton where Dylan
could drop off right outside the door, check in and speed with his
wheelchair through security with no Heathrow hassle. The on board
arrangements were spacious and the in-flight entertainment made
time fly for Dylan on the seven hour flight.
At Newark airport a wheelchair attendant whisked us through the
immigration queues, helped with the luggage and dropped us at the
Silverjet lounge just next to our taxi pick up point. By mid afternoon
we were in our hotel room on the 43rd floor. Brilliant!
Manhattan is like nowhere else with its breathtaking skyline and
bustling canyons full of yellow cabs. Dylan found New Yorkers friendly,
funny and generally helpful – special meal requests were ‘not a problem’.
We wheeled through the grid pattern streets with sat-nav precision to
take in all the sights. Wheelchair access to the top of the Rockefeller
Centre and in the Museum of Modern Art was excellent.
We also rickshawed through Central Park, sailed around the Statue of
Liberty, helicoptered up the Hudson river and took a limo tour through
Greenwich Village, Tribeca, Wall Street and over the bridge to Brooklyn.
With world leaders in town for the United Nations summit, a particular
thrill for Dylan was to find our hotel swarming with Secret Service agents
talking into their lapels. As a precaution we had taken the full range
of medication for dystonia and cerebral palsy, plus letters from Dylan’s
doctors to consultants in New York should the need arise. Fortunately
it did not. However, after we checked in at Newark for the flight back,
US Customs must have broken open his suitcase for a closer look at
his stash of drugs. Back in London, the damaged suitcase emerged
swathed in security tape with a polite apology pasted on. For Dylan
it was just a final memorable event in an unforgettable trip.
39
Issue 58
Dystoniamatters!
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Winter 2007
40
In my opinion...
Dystonia Society
by Kathy Bacchus
Christmas gifts
My name is Kathy Bacchus and I am
a mother of three married children,
from New Addington, Croydon.
I can remember being affected by dystonia
from a very early age and was treated at
Great Ormond Street Hospital as a child because I couldn’t walk properly
and had to have leg irons and special shoes. My condition is now diagnosed
as spasmodic torticollis and generalised dystonia. I am undergoing
botulinum toxin injections which do seem to help me.
I have been regularly prescribed with a cocktail of drugs for most of
my life to help ease the pain and discomfort of my condition. However,
my major problem is with diazepam, in the form of ‘valium’, and how
I can be weaned off such an addictive drug that has been almost a
constant part of my life for the last 11 years or so. I can understand why
I was prescribed the drug in the first place. The spasms had become so
bad and uncontrollable as my head had began twisting violently towards
the right and then upwards. It did
“I am hooked on diazepam, and
help to ease my condition at first,
am getting little or no support...”
along with steadying my balance.
I feel resentful over my medical care as I really need someone to look
at my medicine properly and monitor and control my drugs intake. I feel
I am hooked on diazepam and am getting little or no support from those
who should be caring and supporting me. It is like a nightmare and I am
sure there are many others who must be affected by the way such drugs
as diazepam are administered. My dosage has been reduced to 5mg
– that hasn’t helped but has rather increased my problems. I find it
difficult to sleep and often experience nightmares when I do.
However I cannot finish this article of complaint without expressing
grateful thanks to the Helpline support team, particularly Malcolm
Freeman, who has been really helpful and given me encouragement
and support when I needed it most.
41
Dystoniamatters!
With the festive season nearly upon us, now is the time to think
about gifts for family and friends. The Society has produced a limited
run of teddy bears, roller ball pens and key rings with shopping trolley
tags. Not only will they make lovely gifts – perfect for a Christmas
stocking – but they will raise awareness of dystonia too.
For branches and groups who would like to sell the items below
themselves, special rates are available to ensure they can make a
profit from their sales. Please call the UK office to discuss your order.
How to order
Send the completed form on the back cover to the UK Office, enclosing
your cheque. Or you can phone or email us: joy@dystonia.org.uk
All items will be sent
to you on a same day
delivery basis.
●
Please give me a
new loving home!
●
Pen with comfortable
hold and key ring with
disc for shopping trolley
Hurry while stocks last!
Issue 58
●
Winter 2007
42
DYSTONIA SOCIETY GIFTS ● ORDER FORM
Items to order:
Teddy Bears
Price: £10.00 each
Colour of ‘hoodie’
RED
BLUE
Number required:
Pens
Price: £2.00 each
Number required:
Key ring with shopping trolley tag
Price: £1.50 each
Number required:
I enclose a cheque payable to The Dystonia Society
for
£
Name
Address
Post code
Tel. no
Quick turnaround: All orders will be sent out on the day received.
Please send your order form to:
Dystonia Society, 89 Albert Embankment
London SE1 7TP or call us: 0845 458 6211