Complementary Therapies • Everest Base Camp

Transcription

Issue number 54
PSP Matters
www.pspeur.org
Summer 2012
Complementary Therapies • Everest Base Camp • Million to beat PSP
Contents
4.
News Update
Extra support when you need a friend
6.
News Update
Two one-day conferences…one for
Professionals and one for Families
8.
Care
PSPA launches the new Helpline, Advisory
and Volunteering Service
4
9
5
10. Complementary Therapy
PSP Matters explains some of the
terminology for complementary and
alternative therapies
12. Personal Experiences
10
Telling it as it is…musings and snippets on
life with PSP or CBD
16. Fundraising
PSPA Supporters tell of the fitting tribute
to a loving and courageous husband and
father, whilst Julian Evans bravely battled
through icy winds to reach the South Pole
21. Awareness Week
Awareness Week 2012 and ‘A Million to
Beat PSP’ was launched with a bang
24. Your Events
13
16
An update on events our supporters have
organised or taken part in
26. Upcoming Events
Read about the exciting and creative
fundraising events you could take part in
28. Support Groups
A list of support groups taking place across
the country
21
02 PSP Matters Summer 2012
27
Chief Executive
PSP Matters
Executive Editor:
Fergus Logan
Design and Print:
BSP and Newnorth Print Ltd, Bedford
Cover Picture:
Peter and Maureen Collins –
see page 14 for their story.
The PSP Association
PSP House, 167 Watling Street West,
Towcester, Northamptonshire,
NN12 6BX
T: 01327 322410
F: 01327 322412
www.pspeur.org
The views expressed in PSP Matters, which
is published three times a year, are not
necessarily those of the PSP Association and
therefore products and services advertised
or promoted should not be taken as
recommendations by the Association, who
cannot be held responsible should any
complaint arise.
PSP Matters is available as a pdf and can be
downloaded from the website
Online Forum & HealthUnlocked
The PSP Association’s online forum (http://
forum.pspeur.org/) and PSP_HealthUnlockd
(www.psp.healthunlocked.com/) provide
a safe place for people affected by PSP or
CBD to share experiences and support each
other with the challenges of living with
these diseases.
The PSP Association is dedicated to the support of
people with Progressive Supranuclear Palsy (PSP) and
the related disease Cortico Basal Degeneration (CBD),
and those who care for them. As PSP and CBD are very
similar, we often use ‘PSP’ as a shorthand for both.
The PSP Association Registered Charity Numbers:
England and Wales 1037087 / Scotland SC041199
Follow us on Twitter @pspassociation
This issue contains details of one
of the most significant
developments at the PSP Association
in recent years.
We have been working with our
colleagues in the health and allied
services to devise a set of recognised
standards of care for people with PSP and
CBD, along with a whole new system for
providing advice and support. There will
be a dedicated telephone helpline and
we want to ensure that every person with these conditions will
be given a named contact - giving them guidance and support
and, where necessary, chivvying the appropriate authorities on
their behalf! More details appear on page 8.
At the same time, we continue to encourage the formation
of new support groups around the country, as well as other
activities such as study days and a family day to show people that
they are not alone and to share coping strategies. See pages 5, 6
and 30.
Question: what does climbing to the top of the world have in
common with walking to the bottom? Answer: both activities
have been used as fundraisers. Angie Cannon tackled Everest,
whilst Julian Evans trekked across the ice to the South Pole; their
stories appear on pages 16 and 17.
If like Angie and Julian you want to help, you don’t have to
go quite to the lengths they did. This year, we are setting the
challenge, ‘A Million to beat PSP’, and there are any number of
ways you could help. There’s a distinct sporting vibe but please be
assured you don’t have to don the trainers or swimming costume
to join the fun - page 26 has the details.
Fergus Logan Chief Executive
Working for a World Free of PSP
PSP Matters Summer 2012 03
News update
When you need a friend
Y
ou may remember from the last
issue of PSP Matters, that the
Association now offers a Volunteer
Befriending Scheme. Volunteer Services
Manager, Jon Stevens gives us an
update…
The Volunteer Befriending Scheme
offers emotional and practical support
to those affected by PSP and their carers,
friends and family. The pilot project has
been running for a few months now and
we have trained volunteers across the
Yorkshire and Tyne and Wear regions. We
have also been recruiting in Scotland but
still need more volunteers to support
us here, so if you have a few hours to
spend and can spare a day to attend
training then please get in touch; we’d
love to hear from you. Remember, there
are no specific skills needed to become
a volunteer befriender, just a willingness
to give some time and energy to helping
those in need of support.
Since promoting the Befriending
project we have had lots of interest from
carers and those affected with PSP and
it is clear there is a real demand. Having
now started matching volunteers with
those wanting some help it is becoming
increasingly clear that many find the
support of a befriender invaluable.
As one carer from the Tyne and Wear
region said, “I was only talking about
the need for support like this the other
day and your letter came through the
door. This is a wonderful service the
Association is offering and will be a
real help for me and my mother”. A
volunteer befriender who is offering
telephone support in the Yorkshire
area added; “It’s great to be able to give
something back; I’m glad that what I
went through in looking after my father
and the knowledge that I gained can be
of use to others who are currently going
through this.”
The PSP Association has decided
to expand the project and roll out
recruitment and training in other areas
of the country.
“It is really satisfying to be able to
offer support to people who may be
going through a really tough time. I’m
always really impressed and grateful
that people are willing to give up some
of their spare time to help others. I’m
really looking forward to developing
the project across the UK and hope
“
It is really satisfying
to be able to offer
support to people
who may be going
through a really
tough time. I’m
always really
impressed and
grateful that people
are willing to give
up some of their
spare time to help
others. I’m really
looking forward
to developing the
project across the UK
and hope that many
others can benefit
from the friendship
and support of the
volunteers.”
that many others can benefit from
the friendship and support of the
volunteers.”
The PSP Association is also expanding
the involvement of volunteers in many
other areas of its work. This will include
volunteers leading on regional support
group meetings, offering telephone
advice services and the continuing
development of volunteer fundraisers,
as well as help in our back office
functions. We are committed to offering
full training and ongoing support for all
of our volunteers as well as offering a
rewarding and worthwhile experience.
If you would like to have a chat about
the befriending project or any of our
volunteering opportunities then please
call Jon Stevens on 07587 130 631 or
email jon.stevens@pspeur.org.
Help with Eating
T
is to provide patients and carers with
rish Bolger, a dysphagia*
information about our dysphagia range
representative for ‘Fresenius Kabi’
of products – including demonstrations
- a company based in Cheshire
and taste sessions with food and drinks
- advises on their range of products,
prepared using our specialist powder
information and support:
formulation, ‘Thick and Easy’. This creates
“As a company, Fresenius Kabi works
a safe consistency of fluids and foods - as
in the area of dysphagia with nursing
recommended by Speech and Language
homes and hospitals, helping them
Therapists - to prevent aspiration (food or
to improve the quality and safety of
pureed food. However, whilst we do not drinks going down the wrong way). I also
show how the presentation of pureed
visit people in their own homes, I was
foods can be improved,
keen to ensure that the
I also show
by using different moulds
information and support
(these are provided, free of
we provide was available
how the
charge, to anyone using/
to everyone with
presentation prescribing ‘Thick and Easy’).
swallowing difficulties.
At the meetings, I also
of pureed
I made enquiries with
offer
the opportunity to
Speech and Language
foods can be
sample other dysphagia
Therapists who then put
improved...” products such as ‘Fresubin
me in touch with a PSPA
Thickened’, a pre-thickened
Support Group, where
supplement drink, as well as ‘Fresubin
I have been working with specialist
Crème’ and ‘Yo Crème’, which are
nurse, Kat Haines.
protein rich, dessert style supplements
I have attended, as a guest speaker,
to help patients meet their nutritional
PSPA Support Group meetings in
requirements.
Leicester, Liverpool, Holmes Chapel,
Attending these meetings has
Lancaster and Shrewsbury. My aim
“
Prism Glasses
Seeing Clearly
Prism glasses can improve the vision of
people with PSP but in the past they have
been difficult to acquire. That’s now all
changed…
The PSP Association is pleased to
announce, that with the help of a
charitable trust it can now supply prism
glasses free of charge.
These specialist spectacles help to
compensate for gaze problems and, when
used for short periods, can help when
watching television and enable the wearer
to see their family and friends better.
To place an order, please contact Debbie
Benadie on 01327 322410.
If you have a pair of prism glasses
you no longer use, please would you
kindly return them to the PSPA, as
they can be reconditioned and used
again.
PLEASE NOTE: Prism glasses are not
suitable for use when walking.
opened my eyes to a condition I
never knew existed until a couple of
months ago and I am learning more
with every visit. I now peruse the blog
on ‘HealthUnlocked’ where I have
discovered that there is a new group
(for different movement disorder
conditions including PSP/CBD) starting
in Warrington - right on my doorstep so hopefully I will see you there too!”
For more information, contact Trish
at patricia.bolger@fresenius-kabi.com or
visit www.fresenius-kabi.co.uk
* Dysphagia comes form the Greek
meaning ‘disordered swallowing’ pronounced dys-pha-jeer.
Meet our new Trustees
Colin Blakemore, FMedSci FRS, is
Professor of Neuroscience
at the University of
Oxford. From 2003-2007
he was Chief Executive
of the Medical Research
Council and became
Vice-President of the PSP Association in
2004. He became a Trustee in 2012.
Tom Orchard is a Master Innholder
and is currently Regional
General Manager for
COMO Hotels and
Resorts, looking after The
Metropolitan and Halkin
Hotels in London.
We welcome Colin and Tom and value
their input to the Board.
News update
Message in a Bottle
Like all good ideas, this is simple and easy to use –
and it could save your life…
I
f you needed emergency help in your
inside the front door or on the
own home, would your family and
fridge door
friends be able to tell the emergency
• When the emergency services
services exactly what medication you
come to the house, they look for the
were taking? An ingenious solution is
green cross and then head to the
being offered by the Lions
fridge to find the vital
An ingenious
Club of Great Britain in the
information – saving
form of a ‘message in a
valuable time
solution is
bottle’.
being offered
The scheme is free
in the form of
Here’s how it works…
to the user and
a ‘message in a emergency services
• Details of all
personnel know
bottle’...”
medication, allergies
where to look for the
and relevant medical
green cross.
history are entered on to a form
Bottles and forms are available FREE at
• The form is then placed in a sealed
local chemists, health centres, housing
plastic bottle
associations or you can contact Brigitte
• The bottle is placed in the fridge
Waterfield, on 0121 441 4544 / 0845 833
• The green cross sticker that
9502 (local call rate) or email mdhq@
accompanies the bottle is fixed
lions.org.uk
“
Family Conference:
Saturday 17th November, 9.30am - 3.30pm
Come and meet other families affected
by PSP in a lovely, relaxed setting, at
Chimney House Hotel, Congleton Road,
Sandbach, Cheshire CW11 4ST.
There will be plenty of time to
chat, enjoy lunch and refreshments
(provided), and local speakers will
give practical advice on topics such as
carers’ issues, advanced care planning,
handy equipment and accessing local
support. We will update you on the
new PSP pathway and PSPA plans to
support you more effectively. There
will even be an opportunity for a foot
massage! The event costs £5 to attend
and pre-booking is essential. Places
are limited, please book early. (To book
overnight accommodation, £65 per
double room, please contact Chimney
direct – www.chimney-house-hotelcheshire.com/ or tel 01270 769900 –
quoting reference: BK23501. Rooms are
available on a first-come-first-served
basis. Please request on booking if you
need accommodation adapted for
wheelchair users.)
Please contact Debbie Benadie at
debbie.benadie@pspeur.org or on
01327 322410 for a booking form.
Support
New Family Conference and
Professional Study Day
Over the last few years the PSP
Annual Symposium has grown in
popularity and scope but you told us
that you would prefer more targeted
events. We listened and have
arranged two one-day conferences…
PSP Study Day for Professionals:
Monday 24th September, London,
9am - 4pm
Aimed at health and social care
practitioners, this accredited event
will be held at the Governor’s
Hall, St Thomas’ Hospital, London,
SE1 7EH. Specialists will give an
overview of PSP and its impact on
sight, speech, swallow, mobility and
cognition; the new PSP pathway
and best practice guidance in
delivering standards of care for
people with PSP; the vital role of
keyworkers for coordinated care,
speech and language therapy for
social inclusion, and early palliative
care for quality of life. Chaired
by James Rowe, Senior Clinical
Research Associate Department of
Clinical Neurosciences, University
of Cambridge, and member of the
Advisory Group for the PSP care
pathway.
Booking Fee: £40 for bookings
made and paid for before 30/06/12
(thereafter £50) to include lunch and
refreshments.
Holidays
Holidays can happen
with the Jumbulance
T
he Jumbulance Trust exists to
make it possible for severely
disabled and unwell adults and
children and dependent elderly people
to travel on holidays and day outings
which for most would be well nigh
impossible by air, rail, standard coach or
any other means.
Jumbulance you
You can hire a
You can hire a Jumbulance
travel safely and
to take a party to see local
Jumbulance to can
in comfort all day
places of interest or maybe
take
a
party
to
and throughout
disabled supporters of your
see local places the night (subject
favourite sports club to
to EU Regulations)
watch a match or sporting
of interest...”
with no need
event.
even to leave
You can hire a Jumbulance
the Jumbulance when crossing the
for a longer period - perhaps to take a
group on a 10-day holiday or pilgrimage Channel if a disability or illness makes it
inappropriate to do so.
to places all over mainland Europe, as
To find out more, visit http://
far distant as Poland, Austria and Italy.
jumbulance.org.uk/
With all the special facilities in a
“
Support for Carers
New website aims to help Carers
Looking after a friend or family member
when they need care can be immensely
rewarding, but it can also be incredibly
stressful and exhausting at times.
Without the right support, it can take
a serious toll on a carer’s health, often
leaving them without enough energy
to care.
‘Carewell’ - a partnership between
BUPA, Carers UK and MEND - is a new
website designed to encourage and
support carers to make positive changes
to be healthier and happier.
Drawing on tips from carers and
health experts, Carewell pulls together
a range of information, support and
guidance aimed at helping to improve
the health and quality of life of carers
themselves, and ultimately, supporting
them in continuing to provide better
care for their friends and family.
The site features a section entitled,
‘Energy to Care’, which is packed with
useful tips and guidance including how
to manage stress levels, getting a better
quality night’s sleep, eating healthily
and how to increase physical activity on
a busy schedule.
What’s more - this is only the
beginning. Carewell is a website in
development and aims to build a
resource which is of true value to carers
and gives them the opportunity to help
each other by sharing their own tips
and advice.
Visit www.carewelluk.org and take a
look around, discuss the content and
please feedback any comments. You
can also phone 0800 011 4777 to order
a free copy of the handbook.
Care
Standards of Care
With the Olympics and the Queen’s Diamond
Jubilee, 2012 is set to be a momentous year.
It is also a significant time for the PSP
Association, as the organisation launches the
new ‘Helpline, Advisory and Volunteering
Services’.
L
ast year, the PSPA carried out an
extensive survey of people with
PSP in the UK and consulted with
health and social care professionals
to establish care standards – ones
considered ‘acceptable’ by people
with PSP and ‘deliverable’ by service
providers.
The findings discovered that fewer
than 50% of people with PSP had had
their condition reviewed in the previous
six months and almost 70% of people
with PSP had no known named contact
within the health or social services. This
is combined with the finding that just
16% of people with PSP felt they were
listened to and their views taken into
account, along with only 6% of people
with PSP feeling that the professionals
they see know how to support them
adequately. To fill this communication and
support ‘void’, the PSPA offer people
living with PSP and CBD, their families
and carers, greater and easier access to
existing care and support that meets
agreed Standards of Care - ensuring
they receive the services they need
when they need them.
We are doing this by re-designing our
advisory services. Instead of having a
small team of nurses spread around the
country, and trying to be ‘all things to all
people’, we will set up a central Helpline
to assess the individual needs of people
with PSP and their carers and a team
of Specialist Care Advisors to take
responsibility for mapping everybody’s
needs and ensuring that they are met.
A new Helpline
The new central Helpline will be the
first point of contact for enquiries. The
service will be operated by qualified
health and social care professionals,
supported by a team of volunteers over
time. It will assess the individual needs
of people with PSP and their carers
and provide information, advice and
signposting to meet the needs of most
enquiries. Complex cases will then be
referred to our new team of Specialist
Care Advisors.
Specialist Advice
The Specialist Care Advisors will work
to ensure that in complex cases,
people with PSP have access to
available support that meets their
needs, including a local health or
social care keyworker (acting as such
where one is not available). In this way,
everybody will have a named contact
whose primary role is to look after their
interests. “We want people with PSP and CBD
to feel informed about their options,”
explained PSPA Chief Executive Officer,
Fergus Logan. “This means increased
access to a wider range of support
and services, enabling them to make
better choices about living with their
conditions and dying with dignity.”
“We would like to increase our
contact with people with PSP or CBD
by 30%, whilst increasing the number
of volunteer-led local support groups to
46 across the UK. We will be recruiting
and training more volunteer befrienders
and local service access workers as well
as setting up the new helpline. We are
committed to improving the way we
monitor performance and achievement
and we are expecting significant
positive change over the next year as a
result of these activities.”
Volunteering Services
Drawing on the experience and
expertise that exists within our
membership and beyond adds
Information
enormous value to the charity’s
effectiveness and we will be
We will be developing our range of
establishing a Volunteer Services
information services, including useful
division to create new opportunities for
resources on PSP
to become an
and CBD and new
We see support volunteers
integral part of our work. At
training resources
groups as being local and regional levels we
for health and social
care professionals,
the ‘hub’ for our will be recruiting volunteers
to help us deliver a range
and redesigning the
work
at
a
local
of services that reflect the
website to make it
and regional
changes we are making and
easier to find what
help ensure that everyone
you are looking
level...”
affected by PSP receives the
for (keeping all the
regular favourites such as the forum and support they need when they need it.
As well as rolling out the recently
Health Unlocked). We will also be using
piloted Befrienders Scheme, which
our IT and database systems to track
aims to provide emotional and practical
progress and map any gaps in services,
support, we will also be recruiting
which, coupled with further pathway
volunteers to support the Specialist Care
research, will enable us to identify gaps
Advisors in gaining knowledge of local
and plan how those needs might best
health and social care environments.
be met.
“
These volunteers will be the eyes and
ears of PSPA locally, providing advice
on relevant named professionals and
in many cases offering direct access
based on their own experiences. Having
this level of local knowledge will be an
enormous boost to our ability to make
sure no one is denied even the most
basic level of care and support.
We have been delighted by the
response from members to help set
up and run local groups and will be
rolling out nationally this volunteer led
model. The aim of a local support group
is to provide opportunities for people to
meet others in a similar situation, share
experiences, give mutual support, and
develop a network locally that will lessen
the feeling of isolation.
We are committed to supporting the
further development of this network with
the overall aim that everyone has access
to a group within 25 miles of where
they live. A new publication entitled
‘Successful Support Groups – A Guide’
has been produced. Support will also
be given to volunteers in the setting up
of a group with advice and information
available on an on-going basis.
We see support groups as being the
‘hub’ for our work at a local and regional
level, and hope that over time they will
get involved in a full range of activities,
including fund and awareness raising
as well as continuing to be a valuable
resource for people with PSP, their carers
and families.
Please Note: Most of these
changes will take effect from
June 2012, so please keep
checking our website for any
updates.
Our new helpline number is:
0300 0110 122
Complimentary Therapies
spiritually, and socially.
Alternative medicine is not the
same as complementary medicine.
Complementary medicine is used
with conventional medicine.
Alternative medicine is used instead of
conventional medicine.
According to the National Centre
for Complementary and Alternative
Medicine of the National Institutes of
Health, complementary and alternative
medicine can include the following:
Complementary and
alternative therapies
– do you know the
difference?
There can be some confusion over complementary
and alternative therapies – PSP Matters explains
some of the terminology…
C
omplementary therapy can best
be described as: a treatment or
therapy that is applied alongside,
and in support of, conventional medical
methods – meaning it complements
the range of services provided by the
NHS. In contrast, alternative medicine is
treatment used in place of conventional
medicine.
Complementary therapists stress that
their work is based on the interaction
between the body, the mind and the
energy system that combines them.
This belief is known as holistic medicine,
and contrasts with conventional
(allopathic) medical views, which focus
on trauma and illness with medical
intervention using surgery and drugs.
The truth is, that they overlap a lot,
with some complementary therapies
(like acupuncture) now being available
under the NHS. Medical insurance
policies currently cover some therapies
but not others.
Complementary therapy includes
techniques such as acupuncture,
herbal medicine, massage and yoga.
Complementary medicine typically
addresses how disease affects the
whole person: physically, emotionally,
•
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acupuncture
Alexander technique
aromatherapy
Ayurvedic medicine
biofeedback
chiropractic medicine
herbalism
homeopathy
hypnosis
massage therapy
meditation
naturopathy
nutritional therapy
osteopathic manipulative therapy
Qi gong
reflexology
Reiki
spiritual healing
Tai Chi
traditional Chinese Medicine
yoga
Complementary therapies offer
treatment for all complaints, from
circulation and digestive problems to
depression and stress. There is strong
scientific evidence that some, such as
acupuncture, work. However, some
experts say the evidence for other
forms, such as homeopathy, is, at best,
sketchy.
Research has shown that your
emotional state can affect your immune
system’s ability to fight off disease.
In one study, people with higher
stress levels or more negative moods,
who were exposed to a cold virus,
stomach, blood and skin disorders.
experienced worse symptoms than
Holistic therapy is a generic term
people who were less stressed or had
for any treatment / therapy session
more positive moods. Several studies
that is intended to
on people with various
...emotional
treat the individual
types of cancer suggest that
state can affect as a whole on all
complementary medicine
- mind, body
can improve mood, quality
your immune levels
and
spirit.
Holistic
of life, and coping. Relief
system’s
ability
therapies have been
of stress might help your
around for thousands
immune system function
to fight off
of years. The Chinese
better and allow you to
disease...”
have known about
cope better with treatmentthe energy flowing
related side effects.
through
the
meridians
for over 4,000
Homeopathy works on the principle
years and developed acupuncture to
that what makes a healthy person
tap into and unblock the energy flows.
unwell can be used to treat the same
Ancient India gave us Ayurveda - ‘the
symptoms in someone who is unwell.
Homeopathic medicines are diluted to a Science of Life’ - a system that has been
around for 5,000 years.
high degree.
“
Herbal medicine It is believed that as
much as 80% of the world outside the
industrialised countries relies on herbs
for health. In fact, many commercially
produced pharmaceutical products are
derived from herbs, but herbal medicine
uses the whole plant rather than an
extract. Herbal medicines are used to
help most illnesses including migraine,
arthritis, depression, insomnia and lung,
What qualifications
and experience should
therapists have?
Currently only chiropractic and
osteopathy are governed by statutory
regulation but there is talk of
introducing this to other alternative and
complementary therapies. You should
ensure your therapist is registered with a
recognized body such as The Federation
of Holistic Therapists or The International
Institute for Complementary Therapists
and preferably get recommendation for
a particular therapist by word of mouth.
Many hospices offer a complementary
therapy service to people living with
long-term conditions and their carers.
Where to go for more
information:
Complementary and Natural
Healthcare Council:
www.cnhc.org.uk/pages/index.cfm
Aromatherapy Council
www.aromatherapycouncil.org.uk
General Chiropractic Council:
www.gcc-uk.org/
General Osteopathic Council:
www.osteopathy.org.uk/
British Acupuncture Council:
www.acupuncture.org.uk
Society of Homeopaths:
www.homeopathy-soh.org
Reiki Council:
www.reikicouncil.org.uk
Clinical Hypnotherapy information
on the Complementary and Natural
Healthcare Council website
www.cnhc.org.uk/therapists/
hypnotherapy.htm
General information about the
role of complementary and
alternative medicine in the NHS
can be found on the Department
of Health’s website: www.dh.gov.uk
King’s Fund: www.kingsfund.org.uk/
Personal Experiences
Telling it as it is…
Musings and snippets on life with
PSP or CBD
Why me?
A frequently asked question - particularly pertinent
when coming from a person faced with PSP. But
even more frustrating is the fact that there are very
few answers. But one woman’s blog hopes to go
some way to remedying that situation…
C
illa’s Blog was created to give a
first-hand account of what it is
like to live with PSP and answer
some of the most frequently asked
questions. Throughout her blog, Cilla
(62) takes a ‘no holds barred’ approach
on how it affects her life.
“Like many, I was never prepared
for what was to come and perversely,
having this illness misdiagnosed in
the first place has helped me cope,”
said Cilla, who lives in the South of
England. “Having ME, which is what I
thought I had, put me into a neat little
box labelled ‘people understand your
problem’. Now though, I have to explain
to others what PSP is and further explain
that there is currently no medication or
cure. Surprisingly, many of the people
asking the question are in the medical
profession, which somehow make
matters worse. These are the people we
generally rely on to tell us what is wrong
with us, not the other way around.
However, they, like the rest, are to be
forgiven since if we, the sufferers, do not
explain then nobody will ever know.”
We all have stories about how we
are first perceived. Cilla too has one
such story based on a trip to A &
E. Held in a cubical for 5 hours and
having her injuries ignored was one
thing, but being questioned about
how it happened was another. “No, not
drunk… No, not spousal abuse…but
how could I explain the many bruises
since I needed my husband to speak for
me. It appeared to some like a cover up
on his behalf, since I apparently looked
too scared to speak! Fortunately, we
now have a letter from the neurology
specialist, which partway explains the
problems we have had to endure.”
Cilla now has carers twice a day
and each new face receives both an
explanation and a copy of the blog so
they can familiarise themselves with the
illness and what to expect.
So, understanding the issues, Cilla
decided to contact the Association
to offer both her support and her
experiences wherever possible.
“By explaining symptoms as well as
experiences, I hope to offer others a
candid insight into what to expect. I
welcome any questions and will answer
them as honestly as I can.”
To read Cilla’s Blog and other stories
visit http://pspassociation.wordpress.
com/
If you would like to put your stories
forward for the PSP Blog, please email
them to psp@pspeur.org
Tommy and Christine’s
Story
‘Wurzel’, Tommy Banner, has spent his life in the
spotlight as a member of the famous West Country
music group. But now he is finding himself the
focus of attention for a different reason.
T
ommy’s wife, Christine, has the rare wrong with her.
“At first the diagnosis was she had
neurological condition ‘Progressive
a ‘Parkinsonism’, one of Parkinson’s
Supranuclear Palsy’ (PSP), and the
related illnesses,” said Tommy. “She has
couple, from Taunton in Somerset, have
been given various
agreed to tell their
medications used
I know there’s
story to help raise
in the treatment of
awareness of the
no cure but I am
Parkinson’s sufferers
disease.
always
looking
for
but nothing has
Christine (61) first
helped her.”
began experiencing
a miracle.”
One of Christine’s
symptoms of PSP
main
symptoms
is
falling
backwards,
three years ago when she began losing
which is a clear symptom of PSP and it
her balance. Since then the couple
was this that led the couple to a firm
have faced endless scans and tests as
diagnosis of PSP at both Taunton’s
specialists tried to discover what was
“
Musgrove Park Hospital and Bristol’s
Frenchay Hospital.
“The main problem with PSP is there’s
no medication and no funding for
specialist nurses to help us,” said Tommy.
“I know there’s no cure but I am always
looking for a miracle. It is so frustrating
to know there is medication that can
help people with other conditions, but
not PSP.”
Tommy, who still tours all over the
UK with ‘The Wurzels’, is Christine’s
main carer and finds it very difficult to
watch his wife – once so full of life –
deteriorate as a result of PSP. The former
hairdresser can no longer walk without
aid, finds it hard to concentrate and her
movement has slowed down.
“Christine gets very down. She has
always been a very positive person
and was never ill,” said Tommy. “She did
everything at 100 miles per hour. I used
to be forever telling her to slow down. I
wish I could say that to her now.”
Tommy and Christine agreed to tell their
story in support of PSP Awareness Week,
which ran from 22nd to 29th April 2012.
Personal Experiences
Social Interaction for
Maureen
Managing with CBD
I am a 74-year old wife and mother
who was diagnosed with CBD in
October 2010. Like all of us living
with this condition, my life has
changed quite considerably. My
husband is very caring but he
wants to wrap me in cotton wool!
I have attended a PSP Support
Group (mainly carers) but I’d like
to be in touch with other people
with CBD to know how they feel
and how they are managing to stay
positive.
Rita Ransley,
Wokingham, Berkshire
If you would like to contact Rita,
please phone Debbie Benadie on
01327 322410
P
interaction was the best activity. So
eter Collins is a keen singer and
that’s what we do with my singing and
along with his wife, Maureen, has
it does seem to be working. Progression
travelled many miles performing
so far has been much slower that we
with various musical groups. Maureen
was diagnosed with PSP three years ago were told to expect.
“I have always been a singer and I
and is still one of Peter’s greatest fans,
have been very fortunate that Maureen
here he tells us a little about their life
realises how important that is to me
together…
and she has accompanied me all over
“After we got over the initial shock of
the country for many years. It has
the diagnosis and of reading various
dire prognoses, the one thing that stuck been wonderful to discover how all
our singing friends have been very
in our minds was that brain activity
supportive, especially to Maureen.
was thought to
“My lovely mother
help reduce the
Progression so
- who is now 96 - has
formation of protein
far
has
been
been a great help. Her
nodules in the
brain and therefore
much slower that advice was to always
treat the caring as a
slow down the
we
were
told
to
means of expressing
progression of the
expect”
your love and then it
disease.”
never feels like a chore.
So, the couple set about staying
“You will notice I use ‘we’ and ‘our’.
active. “Maureen’s eye tracking problems
This does not in any way mean that I
make reading books difficult but we
can possibly know how Maureen feels,
have invested in a ‘Kindle’. The ability to
but it indicates that our way of coping is
enlarge text and increase line spacing
to do most things together and to make
means that Maureen can read much
sure we enjoy life as much as we can more easily.
and that is still quite a lot! “
“We were also advised that social
“
Condolences
It is with sadness we learnt of
the death of Jean Kinchin, dear
Mum to Heidi Elliot. Readers of
PSP Matters may recall an article
in our Summer 2011 edition,
featuring Jean and her family as
they ventured off on holiday to
Majorca. Our thoughts are with
Jean’s family.
What happened next?
PSP Association volunteer, Fiona McLaughlin from
Northern Ireland, tells us about her life after PSP…
I
clinicians and charities. We aim to
’ve been volunteering with the
work together to improve the quality
PSPA for almost 2 years now. I’ve
of services for those living with a rare
been involved in a few teaching
disease in NI. Now, my volunteering
sessions with Kat Haines, a PSP
includes being an active member of
specialist nurse - Kat does the formal
that partnership, working with other
input on definition, symptoms and
charities and interested individuals- the
management, and I talk a bit about
issues of delayed/misdiagnosis, families
my experiences.
educating the
These sessions have
health professionals,
My involvement
been run alongside
lack of specialist
the Motor Neurone
with PSP came
support, and
Disease Association
when my mum
isolation are
and the Huntington’s
Disease Association,
was diagnosed in common.
My involvement
and have helped in
2007...”
with PSP came
the development of
when my Mum, Ann Brogan was
the Northern Ireland Rare Disease
diagnosed in 2007. Her health had been
Partnership.
declining for a few years beforehand:
NIRDP was launched by the NI
her situation was practically a ‘text book’
Minister for Health on Rare Disease
case.
Day, 29 February 2012, at an event
Except, of course, PSP doesn’t follow
attended by families, politicians,
“
a textbook - each person experiences
symptoms in a different combination or
a different order and at different rates.
It’s unpredictable.
Sadly, Mum died in July of last year
and I still find myself overwhelmed at
times - I want to tell her things, I miss
her company and her hugs. But it is she
who has moved beyond PSP - I’m still
dealing with it. But I’m not the only one.
Look at the forums, the blogs and the
support groups - there are lots of former
carers and family members there,
reaching out, supporting and sharing.
We know the shock of PSP.
Experience of PSP marks us all. I spent
years reacting, waiting on a crisis, and
worrying about what was ahead. I
struggled to make the smallest impact.
PSP was having its way with my mum
and there was nothing I could do about
it. I could make sure she was receiving
the best care. I could talk to all the
health professionals. I could be with her
as much as possible. But I couldn’t do
anything about the PSP.
So, I haven’t quite reached the ‘life
after’ PSP yet, as my head is still full of it
but I’m trying to put the experience to
some positive use. As well as the NI Rare
Disease Partnership, I’m involved in the
NI Neurological Charities Alliance and
the Neurological User/ Carer Reference
Group.
I’m still shouting about PSP - because
that’s something I can do.
For more info on NIRDP, visit www.
nirdp.org.uk
Fundraising
Up to Everest Base Camp
PSPA supporter, Angie Cannon tells of the fitting tribute to a
loving and courageous husband and father…
Angie’s son, Jonathan, at Gokyo Lake
M
y husband Mike was
diagnosed with PSP back
in May 2008 and he lost his
fight on 29th July 2011. The advice of a
wise aunt at the time of Mike’s funeral,
“plan something completely different
for Christmas” was to stay with me
and plant the seed of an idea which gradually grew and developed as the
weeks went by.
Mike and I shared a great love of
the mountains, spending much of our
leisure time walking in Snowdonia, the
Lake District and the Alps. My eldest
us to begin an amazing
son, Jonathan, also a keen
journey. We trekked through
mountain walker, lives and
a beautiful, wooded gorge
teaches in Kathmandu so
following the Dudh Koshi
when he invited me there
River, and passed through
for Christmas and New Year
picturesque little villages with
and suggested we explore
terraced fields and pastures
some of the Himalayas, the
and as we climbed higher,
idea for a sponsored trek to
Mike,
loving
and
courageous
magnificent snow-clad peaks
Everest Base Camp quickly
husband and father
emerged above the hills
followed.
against a clear azure sky. We reached
We met with our Nepalese mountain
Namche (3450m) on Christmas Day
guide on Christmas Eve and took the
where we were able to phone home to
scenic flight to Lukla (2840m) where
wish our family a Happy Christmas!
our cheerful, friendly porters joined
The next day was the toughest, as I
had to stop frequently to get my breath
back and a helping hand was needed to
haul me over the large boulders, but the
views were amazing.
New Year’s Day dawned with a
dramatic change in the weather, clear
blue skies giving way to dark clouds. We
were due to tackle Everest Base Camp
the following day, but the snow that
was falling by lunchtime, was forecast
to continue throughout the night, so
the decision was made to go for it that
afternoon.
Ngozumba Glacier near Gokyo
It was very exciting and adrenalin
overcame exhaustion and an empty
After an acclimatisation day, we
stomach as we set off full of optimism
continued towards Gokyo, stopping
to make this very special journey. It
for delicious Sherpa stew and Tibetan
bread before the steep ascent to Dole at was cold and bleak but I wouldn’t have
missed it for the world. We reached
4084m. The temperature at this altitude
Base camp (5350m) and enjoyed a great
was way below freezing - even inside
sense of achievement.
the lodge - and the squat-style loo
We made it! Our battle with the cold
took some negotiating as the floor was
and snow, with
covered in a sheet of
altitude sickness
I know Mike
ice!
lack of oxygen,
Two more days of up
would have been and
was
nothing in
hill climbing brought
extremely
pleased
comparison to the
us to the beautiful
bravery shown by
and proud. .”
turquoise Gokyo
my husband, Mike,
Lakes, approaching
as he fought PSP.
5000 m and I was beginning to feel the
During the trip I often gained inspiration
effects of the high altitude and lack of
and strength from the memory of Mike’s
oxygen (50% less above 5000m) but
incredible courage and dignity.
we kept a steady pace and apart from
My wonderful family and friends as
getting out of breath, not being able
well as my local church, school and choir
to swallow solid food for a few days
have given tremendous support and
and the occasional headache, I was not
helped raise over £4500 - I know Mike
too badly affected. You can keep going
would have been extremely pleased
quite well on copious amounts of hot
and proud.
chocolate!
“
Sunset on Everest
Brrrrrr!
B
y bravely battling through icy
winds across miles of frozen
landscapes to reach the South
Pole, adventurous Julian Evans, from
Leicestershire, has raised £12,500 for
the PSP Association.
“Regarded as the Holy Grail for
polar explorers, the South Pole
narrowly eluded the famous 1907
Nimrod Expedition led by Sir Ernest
Shackleton as they were forced to
retreat just 97 nautical miles (111
standard miles) away from their
destination,” explained Julian. “We
started our expedition at the Thiel
Mountains (9,300 ft), the same
latitude where Shackleton turned
back. I was part of a 10-man team,
with David Hempleman-Adams
(the first person to reach all poles
and the seven summits) as our
leader. It took us three weeks,
trekking through temperatures as
low as –45C but we reached the
geographic South Pole at 1.30am on
9th December, 2011.
“It was an amazing but gruelling
experience. Thank you to everyone
who supported me.”
Everest Base Camp
Fundraising
Making an Olympian effort in 2012
A
huge ‘thank you’ goes to everyone
who took to the starting blocks
and raced towards a world free of
PSP during Awareness Week this year.
After the launch at the London
Marathon on 22nd April, Awareness
Week followed with press and media
campaigns across the country to educate
doctors, healthcare commissioners and
the general public on PSP.
Whilst many of our sporty supporters
have adopted the Olympic Spirit with
races, tennis tournaments and bike rides
across the country, we have also
had lots of fundraisers choosing to
test out their ‘Armchair Olympics’ in
less strenuous ways by holding cosy
coffee mornings, pub quizzes, and
domino drives.
With the Olympic theme
continuing throughout the year,
there is still time for you to support
‘A Million to Beat PSP’ and we
are hoping to reach £1m to fund
research into the causes, treatments
and eventual cure for PSP.
Two families join to fight PSP
W
have organised several fundraising
hen on holiday several years
events in honour of Adrian’s mother,
ago, Adrian Morton and
Margaret Briggs, who is living with
partner, Dominic, met Debbie
PSP, and in memory
Rendall by chance
of Debbie’s mum,
on a cruise, and after
The two
Maureen, who passed
they became friends
families
have
away last summer.
they were shocked to
discover that both of
now raised over The team’s latest
challenge was a
their mothers had PSP.
£10,000”
sponsored walk from
The families kept in touch
their local cafe to the nursing home
and despite being on opposite sides
where Margaret lives in Worthing of the UK, have supported each other
Debbie flew down from Fife to join
through the various stages of PSP and
“
Make it happen in 2012 –
A Million to Beat PSP!
If you would like to take part in
a fundraising event for ‘A Million
to Beat PSP’ then please contact
the Fundraising Team on 01327
356131 or email events@pspeur.
org and we will send a fundraising pack to you complete with
sponsor forms, PSP t-shirts and
lots of hints and tips on how to
make the most of your event.
Dominic and Adrian on their walk.
Dominic said, “We pushed Margaret
4½miles in her wheelchair - it was not
for the faint hearted with a rough path
that was sometimes hard to negotiate,
but we did it!”
The two families have now raised
over £10,000 and would like to say a
big ‘thank you’ to all their friends who
donated, helped out and welcomed
them back into the nursing home after
the cold, windy walk!
The families will continue to raise
funds together for the PSP Association,
with a walk planned over the Forth
Road Bridge in Fife this coming July,
and have both set up Tribute Funds for
Maureen and Margaret, who now have
trees dedicated to them in Woodland
Trust sites.
Climbing Mount Kinabalu
Intrepid fundraiser, Susan Bromley, climbed the
world’s 20th highest peak to raise £3,210…
S
ince my Auntie Margaret’s
diagnosis 4 years ago, our family’s
desire for research and a greater
knowledge and understanding of this
condition has exploded. Following
Awareness Week in 2011 we made the
decision to take on a huge fundraising
challenge – a 2-day climb to the summit
of Mount Kinabalu, in Malaysia.
Three of us (Peter, Neale and I) set
off on the first day and after 5 hours
of constant climbing reached our
campsite at 11,000ft. Early the next
morning (2am) we awoke to the news
that due to weather conditions no one
was allowed to continue...my heart sank!
But by 3.15am, this notice was changed
go on. Nearly an hour and a half later, I
to ‘advised not to climb’, so thinking of
made it to the top at 13,435 feet - what
all the funds raised for Auntie Margaret
an awesome feeling!
and for PSP, Neale and I signed the
Of the 150 people sleeping at base
waiver and disclaimer and began the
camp
wanting to reach the summit,
final push to the summit through
only 20 of us made it and I
the storm – sadly leaving
I
made
it
to
am so proud to be one of
Peter behind suffering with
the top at
them. I’m also completely
altitude sickness.
Just an hour in and Neale
13,435 feet” in awe of family and
friends who raised so
felt he could not continue,
much - thank you to
as he was cold and could not grip
everyone for support and sponsorship,
the rock and ropes. I felt OK so after a
what a cracking total!
mountainside discussion, I decided to
“
Pair of Knits!
Pam, and her friend Beryl, have been working hard to knit and sell
scarves to raise funds. To date, they have raised £250 and orders are
still coming in.
“When we knitted and sold the first few scarves, we didn’t realise
how it was going to take off,” said Pam. “We have had lots of laughs
about it all!”
Beryl’s husband, Sid, has also been involved and very supportive
(not knitting), being Beryl’s driver and taking her to buy more yarn as
necessary, along with Pam’s three daughters who have helped out too.
Fundraising
Donations remember
Horace
A
nna Rowbottom lost her
and he had a personal
husband, Horace, to PSP last year trainer to help him work
but in remembrance, she asked
out under supervision.
for donations to the Association. Anna
We went regularly to the
sent a cheque for £410.07 along with a
cinema, concerts and
few thoughts…
shows.
“After Horace’s
Horace
Anna sent a
diagnosis we filled the
went into
cheque for
following two years
nursing care
£410.07 along and we were extremely
with activities we never
had time for when we
lucky to find a wonderful
with a few
were both working.
home, Briar Hill, in
thoughts…”
Our first venture was a
Rugeley. The home liased
Mediterranean cruise, which we both
with Maggie Rose (one of PSPA’s Nurse
enjoyed immensely. We then joined a
Specialists who has since retired). I have
health club, and with my help, Horace
had such excellent support from all
was able to swim three times a week
PSPA’s nurses.
“
Just over a year ago Horace and I
had a wedding blessing followed by a
reception at the nursing home. This was
provided by the home for four couples
and it was a wonderful day; we were so
happy.
I would like to thank everyone who has
given us support over the last few years.”
PSPA
Supranuc
ve
r Palsy
lea
Progressi
Join the London
Marathon 2013
The PSP Association has a number
of guaranteed places for the 2013
London Marathon
To join ‘Team PSP’ contact
marathon@pspeur.org
Registration fee £100,
Sponsor target £2000
or call 01327 356132 now!
Proud of helping with
PSP Tribute Funds
A lasting way to honour
someone special
www.muchloved.com | Registered Charity No. 1118590 | info@muchloved.com
Awareness Week
Awareness Week and
‘A Million to beat PSP’ launch.
Team PSPA goes off with a bang - Cameron
Wood, PSPA Director of Development reports…
A
wareness Week 2012 and
anticipated to exceed £200,000. A truly
‘A Million to beat PSP’ was
amazing start to the ‘Million to beat
launched with a bang as the
PSP’ campaign and we are enormously
starting pistol for the Virgin London
grateful to everyone who took part
Marathon set our 101 runners on to the
and their sponsors. We can’t thank you
streets of the Capital - cheered on by
enough!
family and friends along the gruelling
The momentum continued through
26-mile route, ending in The Mall.
the week with lots of events and
Many of the runners
initiatives across the
A truly amazing UK to raise awareness
joined us at the post
race reception at the
and funds. These
start to the
Department of Media,
included a cheese
‘Million
to
beat
Culture & Sport, where
and wine evening in
PSP’ campaign” Northamptonshire,
they were given a much
deserved and rousing
tea parties in Essex,
welcome from supporters and the PSPA
a gala dinner in Newcastle and in
team and offered a physio massage,
Aberdeenshire, a 5k run and coffee
shower and buffet to refuel!
morning. Gloucestershire was a hive of
To date, a fantastic £140,000 has
activity with a cabaret night, tea party
been raised and the final figure is
and skydiving. Unusual events included
“
a canine swimathon in Lancashire and a
cycle across Iceland – in Dorset.
More details of a few of these event
and initiatives can be found on pages
24 and 25.
We also generated valuable media
coverage during ‘Awareness Week’ with
articles appearing in newspapers and
radio interviews with Fergus Logan, PSP
CEO, along with a series of ‘case studies’
put together by members who were
willing to talk openly about their own
experiences.
The awareness and fund raising isn’t
restricted to the week, as ‘A Million to
beat PSP’ continues to be a focus for
the entire year. We were delighted by
the response from members to the ‘A
Million to beat PSP’ leaflet sent out in
March – many have already committed
to organise or take part in a wonderful
mix of events.
So, what is the ‘A Million to beat
PSP’ campaign about and what are
we hoping to achieve?
More research in to PSP and CBD is
vital if we are going understand more
about the causes. It’s also important
that we continue to look for effective
treatments and work towards finding a
cure.
Increase awareness - not just amongst
the general public but also within the
medical profession. Without the medics
Awareness Week
we’re not able to stimulate the level
of interest needed to generate good
research projects and without public
support we can’t raise the money
needed to fund them.
We hope ‘A Million to beat PSP’
will help, but we need as many of
our members and supporters to pull
together to do whatever they can.
We have already committed to a
project to fund a new research network
in the UK with the aim of encouraging
neurologists to work more closely, share
information and also raise awareness
amongst their peer group. This will
go a long way in establishing greater
awareness amongst the people who are
the key to more
research - but
this is only part
of the plan.
We now
have to raise the
money needed
to invest in
groundbreaking research. How can you
get involved?
There are lots of ways! Whether you
want to raise funds or awareness, or both,
everything you do will help us beat PSP.
Below are a few suggestions, but there
are a million and one things that you can
do. But you must remember to
have fun!!
To assist our email-using supporters
as they tell people about PSP, we have
produced a special ‘A Million to beat
PSP’ infographic. It’s a visual and easy to
understand way to explain PSP to friends
and colleagues and can be sent via email.
To receive the info graphic, email events@
pspeur.org
We have also re-launched Facebook
and Twitter (follow us @PSPASSOCIATION)
as a way of reaching more people easily
and effectively. There is also a blog
that you can follow at pspassociation.
wordpress.com/
An e-newsletter is also now available. It
keeps you up-to-date on what’s going on
across the PSPA and beyond. If you’d like
British 10K London Run
8 July 2012
London Stadia
Trekathon 1 Sept 2012
Great North Swim
Staged just 19 days before
the start of the Olympics, the
atmosphere at the UK’s leading
10K road race will be filled with
anticipation...
A tough, 26-mile trek
No lanes, no walls, no chlorine.
A one-mile, outdoor swim in
beautiful Lake Windermere,
Cumbria.
Pedal for Scotland
9 September 2012
Join Scotland’s biggest cycle
from Glasgow to Edinburgh.
through urban landscapes
taking in some of London’s
iconic 2012 Olympic venues,
including Lords Cricket
Ground (hosts archery),
Hyde Park (triathlon and
marathon swimming) and
Horse Guards Parade Ground
(beach volleyball) then
finishing at the O2 Arena.
£49 registration fee, £100
sponsorship target
Trek Hadrian’s Wall
13 - 15 July or 7 - 9
September 2012
A challenging walk, stunning
backdrops and fantastic
history - come and conquer
the Wall for PSP.
22-24 June 2012
Organise a 5-a-side competition
at your local leisure centre or how
about a table football tournament?
Take part in a marathon sailing race
or hold your own mini regatta
Hold a badminton, tennis or ping
pong tournament – challenge
others in your street to become
local champs
to subscribe, please email; psp@pspeur.
org.
And finally, we are still committed to
making sure every single person affected
by PSP has access to the care and
support they need for continued quality
of life. We are in the process of making
some changes to how we do this. To
learn more, please see page 8.
Thank you to everyone who contributed
to making both PSP Awareness Week
and ‘A Million to beat PSP’ a great
success and also our sincere thanks to
those who help us throughout the year.
Armchair Olympics
Don’t fancy getting physical? Then join
Team PSP for the ‘Armchair Olympics’ and
organise an event in your own home - no
training shoes necessary!
Hold an ‘Opening Ceremony’
party in your home, with fireworks
and a BBQ!
Have a coffee morning, afternoon tea
and cakes or invite all your friends for
a ploughman’s lunch
Sell your plants, vegetables and
produce or ask for donations from
fellow horticulturists as they visit your
garden
Office Olympics - organise an event
at your workplace; get sponsored for
a dress down day, hold an Olympic
sweepstake or have a cake sale
Compile a sports or Olympic pub
quiz and charge a fee to enter
Create your own event doing
something you enjoy and help raise
‘A Million to Beat PSP’
Your Events
Skydive for Granddad
Danielle and Charlotte took to the skies
to remember their granddad, Ken Smith.
On yer bike
Carly Skellern took on a cycling challenge to ride from London to
Paris in memory of her granddad.
“It was an absolutely wonderful experience.
I admit that I didn’t do enough training as
was advised but I had managed to build
up to 30 miles at a time. I do wish that I had
done more training as I think that I would
have found certain parts of the ride, like the
hills for example, a lot easier!”
“Arriving in Paris and seeing so many
friends and family was fantastic. It made
all of the aches and pains worthwhile.
The whole event was so well organised
and I met some great people and I will
never forget the experience and I would
definitely do it or another ride again.
Raising money for PSPA means a lot to
me, and my family.”
Bit of a ‘Do’
Crumbs
Emily Finch, together with her friend,
Shama Patel (whose mother was
diagnosed with PSP in 2010) held a cake
sale - they made £632 and helped raise
awareness amongst their colleagues at
Thomson Reuters.
Angela Galgani held a party at the
Home Guard Club in Failsworth on
Friday 24th February 2012 in memory
of her Mum, Mary Josephine McGrath.
Friends and family enjoyed the sound of
vocalist Peter Sarsfield singing the tunes
of the 60’s, 70’s and 80’s up to the hits
of today. They raised a fantastic £1,200
for PSP.
We completed our sky dive on what
would have been Nan and Granddad’s
anniversary and it was both the most
exciting and the scariest experience of
our lives!
My granddad would have loved to be
there to see it but I know he was there
in spirit. In total we raised over £2,000.
Thanks to everyone for their support
and best wishes.”
Imagine standing at the edge of an
open doorway in an aircraft flying at
10,000 feet - the noise of the engines
and the wind ringing in your ears... then
letting go and falling through the clouds
at over 120mph! You can do a skydive
for FREE if your raise over £395 for PSP contact the Fundraising Team to book
your jump now on 01327 356132 or email
events@pspeur.org
Please ‘Like’ our Facebook page at
http://www.facebook.com/PSPAssociation
Cycling Iceland
It’s a Family Affair
When Julie Naylor decided to involve
her work colleagues in some fundraising
for PSP, the Iceland Supermarket where
she works in Weymouth became the
inspiration behind the challenge! Julie
set up an exercise bike in the store and
the team cycled the total distance from
the north to the south coast of Iceland,
a full 350km, whilst stationary! Over
£600 was raised for PSPA in memory of
Julie’s Mum, Diana.
Family team Jonathan, Jessica and Holly
Crosby ran the Lincoln 10K in March
in memory of father and grandfather,
Malcolm Crosby. Although it was a
little hot on the day for running, Jessica
achieved a personal best time of 55
minutes and along with their friend,
Brittany Allen, the family have raised
over £1,100 for the PSP Association.
Hitchin firm gives to
PSPA
As part of Crane Building Services
and Utilities’ annual charitable giving
programme, it has donated £4,268.82
to the PSPA. Other recipients of grants
were Luton and Dunstable Hospital
Charitable Fund, Potton Vineyard
Good Neighbour Scheme and
Addenbrooke’s Charitable Trust.
Join us today –
become a member
Help us work towards a world free of PSP
“Life would have been a lot harder if The PSP
Association hadn’t been there providing advice
and support to me when dad had PSP.”
The membership forms can be downloaded from
our website www.pspeur.org or you can email
debbie.benadie@pepeur.org for a copy.
Upcoming Events
‘Fore!’
For our golf lovers we are
pleased to list our range of
golf days in 2012
Friday, 29th June
Shropshire, Ludlow Golf Club
Wednesday, 4th July
Reading, Blue Mountain Golf Club
Thursday, 6th September
Coventry, Finham Park Club
Thursday, 1 November
Surrey, New Zealand Golf Club
For more details or to register your interest in any of these golf days contact events@pspeur.org or call 01327 356132
Royal Parks Half Marathon
Great South Run
When: Sunday 7 October
When: Sunday 28 October
Registration Fee: £30
Registration Fee: £20
Sponsorship pledge: £360
Sponsorship target: £275
With a fantastic festival atmosphere, live bands and
entertainment for spectators, this is not only a great race
in beautiful surroundings but is also a lovely day out for
all the family!
The route itself shows off London’s sights beautifully,
as you pass the key landmarks of Big Ben, Buckingham
Palace and the London Eye.
Starting in Portsmouth City centre and finishing on the
seafront, the BUPA Great South Run follows a 10 mile route
around the city, passing the Historic Dockyard and HMS
Victory. This is a classic race for those wanting to step up
the challenge from a 10K, but are not yet ready for a Half
Marathon, and we have a number of guaranteed places to
offer to our willing runners!
Petra
Trek
10th - 14th October 2012
A
dd a unique chapter to your life
by embarking on this amazing
trek and encounter first-hand
the unforgettable experience that
Jordan and Petra has to offer.
This is five day trip where you will
explore the diverse terrain, take in the
country’s breathtaking views, trek over
its magnificent red sands, and relax
in the Dead Sea. See the ‘lost city’ of
Petra, one of the new Seven Wonders
of the World. This is an unmissable
journey and a challenge of a lifetime.
Come and trek with us...
Is the trip for me?
Absolutely YES! This trip is suitable
for people with a sense of adventure,
who want to do a challenge for a great
cause!
How fit do I need to be?
You certainly do not have to be an
athlete to complete this trek but it is
advised that you train in order to get
the most from this experience. The
terrain on this trek is tough but we shall
provide you with a comprehensive
training guide and are always on hand
to help you with training tips in the lead
up to departure.
Registration Fee - £199
Sponsorship Target - £2,400
For more information and to sign up for any of
these events, please contact the fundraising team
on 01327 356131 or email events@pspeur.org
Support Groups
Support Group Meetings
Group
Held
Date & Time
Exeter
Longdown Village Hall, Longdow
Wed 30 May 2012, 11.00
Pocklington
Burnby Hall Room, Pocklington
Sat 9 June 2012, 10.00
Morpeth
Stannington Village Hall, Stannington
Tue 12 June 2012, 10.30
Cardiff
Ty George Hospice Care, Whitchurch
Tue 19 June 2012, 11.00
Bedhampton
Social Hall, Bedhampton
Tue 26 June 2012, 10.30
Lancaster
St John’s Hospice, Lancaster
Fri 29 June 2012, 13.00
Northamptonshire
The Kairos Centre, Grange Park, Northampton
Sat 30 June 2012 14.30
Brentwood
The Marillac, Brentwood, Essex
Sat 30 June 2012, 14.30
Carlisle
Day Hospice, Eden Valley Hospice, Durdar Rd
Mon 2 July 2012, 13.30
Leicester
Age Concern, Earls Shilton
Tue 3 July 2012, 13.00
Cheltenham
Leckhampton Court Hospice, Cheltenham
Tue 3 July 2012, 11.00
London
The National Hospital for Neurology, Queen’s Square
Thu 5 July 2012, 11.00
Bristol
Sue Woolnough’s Home, Henbury
Tue 10 July 2012, 13.30
Shrewsbury
The Hamar Centre, Mytton Oak Road
Thu 12 July 2012, 11.00
Camberley
79 The Avenue, Camberley, Surrey
Thu 12 July 2012, 10.30
Pocklington
Sat 14 July 2012, 10.00
Salford
Salford Royal
Mon 16 July 2012, 13.00
Dorchester
Joseph Weld House, Dorchester Hospice
Tue 17 July 2012, 11.00
Coventry
University Hospitals of Coventry & Warwickshire, Walsgrave
Thu 19 July 2012, 13.00
Nottingham
Shanta Nathan’s Home, Bramcote
Mon 23 July 2012, 10.30
Brentwood
Sat 28 July 2012, 14.30
Cambridge
Trumpington Village Hall, High St, Trumpington
Sat 4 August 2012, 14.30
Cranage
Cranage Village Hall, Cranage, Cheshire
Tue 7 August 2012, 13.30
Liverpool
The Neurosupport Centre, Norton Street
Wed 8 August 2012 11.00
Warrington
Fairfield & Hawley Neighbourhood Project, Warrington
Thu 9 August 2012, 14.00
Pocklington
Sat 11 August 2012, 10.00
Brentwood
Sat 25 August 2012, 14.30
Exeter
Longdown Village Hall, Longdow
Wed 5 September 2012, 11.00
Pocklington
Sat 8 September 2012, 10.00
Liskeard
Echo Centre, Liskeard
Mon 10 September 2012, 11.30
Group
Held
Date & Time
Wantage
Mary Simmons Home, Wantage
Tue 18 September 2012, 11.00
Lancaster
St Johns Hospice, Lancaster
Fri 28 September 2012, 13.00
Brentwood
Sat 29 September 2012, 14.30
Cardiff
Ty George Hospice Care, Whitchurch
Tue 2 October 2012, 11.00
Leicester
Age Concern, Earls Shilton
Cambridge
Sat 6 October 2012, 14.30
Aberdeen
The Stuart Resource Centre, Aberdeen
Mon 8 October 2012, 14.00
Bedhampton
Social Hall, Bedhampton
Mon 8 October 2012, 10.30
Morpeth
Stannington Village Hall, Stannington
Shrewsbury
The Hamar Centre, Mytton Oak Road
Thu 11 October 2012, 11.00
Pocklington
Sat 13 October 2012, 10.00
Dorchester
Joseph Weld House, Dorchester Hospice
Tue 16 October 2012, 11.00
Coventry
University Hospitals of Coventry & Warwickshire, Walsgrave
Thu 18 October 2012, 13.00
Camberley
79 The Avenue, Camberley, Surrey
Thu 18 October 2012, 10.30
Brentwood
Sat 27 October 2012, 14.30
Carlisle
Day Hospice, Eden Valley Hospice, Durdar Rd
Mon 5 November 2012, 13.30
Warrington
Fairfield & Hawley Neighbourhood Project, Warrington
Thu 8 November 2012, 14.00
Cheltenham
Leckhampton Court Hospice, Cheltenham
Tue 13 November 2012, 11.00
Cranage
Cranage Village Hall, Cranage, Cheshire
Bristol
Sue Woolnough’s Home, Henbury
Brentwood
Sat 24 November 2012, 14.30
Glasgow
The Beardmore Hotel, Clydebank
Mon 26 November 2012, 14.00
Cambridge
Sat 1 December 2012, 14.30
Lancaster
St Johns Hospice, Lancaster
Fri 14 December 2012, 13.00
Brentwood
Sat 29 December 2012, 14.30
For more information about the Support Groups
contact Debbie Benadie at debbie.benadie@pspeur.org
or on 01327 322410
Support Groups
Support Group News Update
Support Group Round Up
Wimbledon and south
west London
The South West London Support Group
held its first meeting on 14th April in
Wimbledon. It was well attended and
participants enjoyed an open and
informal discussion on current concerns
and issues, as well as exchanging ideas
of what they would like the Group to
provide going forward. The Group will
meet monthly on a Saturday afternoon
and various speakers will attend to
give their advice and experience on
medical and other issues relating to
PSP and CBD, as well as speakers on
topics of general interest to the group.
Social gatherings and outings will also
be arranged outside of the monthly
meetings for carers to have some time
out and also for those living with PSP
and CBD together with their families
and carers.
The next meeting was held on Saturday
12 May from 2.45 pm to 4.15/4.30 pm
at Drake House, 44 St. George’s Road,
Wimbledon, London, SW19 4ED. If you
would like further information about
the Group please contact Kate Weston
by email: katebweston2011@gmail.com,
or mobile: 07917 764 832
Cambridge
The Cambridge Support Group meets
every two months at Trumpington
Village Hall. So far, there have been
three meetings, attended by a range
of professionals, including Drs James
Rowe and Tim Rittman, neuroscience
specialists from the University of
Cambridge, and Parkinson Nurses,
Glynis Brookman and Mary Hall - who
have offered invaluable advice on a
range of issues. The Group hopes to
enlist the advice and support of a
range of other professionals in future
meetings.
These meetings have been a
welcome opportunity to talk to those
who have direct experience with PSP,
and attendees enjoy the range of tasty
nibbles provided by Ronc and Faiza.
Everyone looks forward to catching
up with the regular members but hope
to see some new faces at the next
meeting on Saturday 4th August at
2:30pm.
For further information and details of
the Cambridge Group please contact
Faiza 07717 375830 or faiz_qureshi@
hotmail.co.uk
Norwich
The first meeting of the PSP and CBD
Support Group Norwich, took place on
the 24th March at Stoke Mill. Fourteen
attendees made the meeting both
informative and productive, as varying
experiences and support was offered to
those living with PSP and CBD and their
carers. The setting created a positive
and friendly atmosphere enabling
agreement for the next meeting which
took place on Saturday 26th May 2012
from 11am to 1pm at Stoke Mill, Stoke
Holy Cross, Nr Norwich, NR14 8PN.
For further information please contact
Linda on 01502 516757.
Brentwood and south
west Essex
The Brentwood Support Group meets in
the last Saturday in every month at The
Marillac, Brentwood, at 2pm. The group
was set up last year and since then
attendance has grown and a number
of speakers have come along to offer
advice and information. Tea and coffee
is served and there is always a warm
welcome and friendly atmosphere.
The group is run by Liz Williams.
Parkinson’s Specialist Practitioner for
South West Essex and PSPA Volunteer,
Jenni Relf.
For more information call Liz on 01277
695241
Northamptonshire
The Northampton Support Group
meets once a month and currently uses
the Kairos Centre in Grange Park, just off
junction 15 of the M1.
Since the group was established
last November, it has enjoyed good
attendance and hopes to invite a
range of speakers to future meetings
– to offer advice and information on
services and support available locally.
The group is also planning a series of
fund and awareness events. The first
was a Cheese and Wine evening during
Awareness Week at Tea-zels Café in
Harrold, in Bedfordshire, which is run by
support group volunteer, Sue Roberts.
Other events include a summer evening
social in July and a ‘Proms in the Park’ in
September.
For further information please contact
Peter Daniels on 0791 782 3279 or
peterdaniels1957@hotmail.co.uk
Nottingham
The first meeting was held on 19th
March at the home of Shantha Nathan,
who not only played host, but also
provided wonderful food.
After introductions, discussions
focused on what the group would like
from these meetings and how often
they should take place.
A friend of Shantha, a qualified
counsellor at Nottingham Hospice,
offered her services on a voluntary
basis for anyone who wishes to talk to
her. She went on to describe the many
services that the Hospice had to offer,
including reflexology, massage and day
and night care services. Attendees then
spoke about the importance of carers
looking after themselves and taking up
any offers of help.
The Group hopes future meetings
will see many more people attending –
assuring a warm welcome awaits.
The next meeting will take place on
Wednesday 23rd July at 10.30.
For more information, contact Jan
Key on 0115 9259946 or 07779127916,
email, Jan.Key1@live.co.uk
Pocklington
The Pocklington support group now
meets every four weeks.
A modest number attend but
everyone is really glad to see each
other – plenty of chat, fellowship, love,
friendship and also lots of hugs! And
of course, there’s also tea, coffee and
biscuits and a fundraising stall selling
old and new – including PSP tea towels
and t-shirts etc.
Last year, the Group secured funding
from the East Riding of Yorkshire Council
to pay for the York Alternative Therapy
team to visit and offer massage and reiki
treatments for members – it was most
appreciated.
At the last meeting, people felt that
there was still more chatting to be
done, so it was suggested we extend
our booking of the room to allow for a
‘bring and share’ lunch - great idea!
The Group will be taking part in
activities for ‘Carers Week’ in June.
For more information and dates for
the next meetings, please call Michael
Shepherd 01759 306741 or 07952
563875.
Warrington
The group was set up in November
2011, by the Parkinson’s nurse working
in the Warrington community who
became aware of a number of patients
with Multi Systems Atrophy (MSA)
and Progressive Supranuclear Palsy
(PSP). Although these patients and
their families are welcome at the local
Parkinson support group which meets
monthly, there was a need for a specific
support group for these conditions.
This meeting takes place every three
months and the third took place in
May 2012. The next meeting will be
on 9th August. Speakers are invited
to give a brief talk and then there’s
time for questions and discussion.
The Group has produced a newsletter
– this included a short summary of a
member’s journey since diagnosis.
Contacts
Office:
Tel: 01327 322410
Fax: 01327 322412
Email: psp@pspeur.org
Website: www.pspeur.org
Support Groups:
Debbie Benadie, Administrative
Support Officer: 01327 322410
debbie.benadie@pspeur.org
New Helpline:
0300 0110 122
Make your voice
heard
PSP Matters, the PSPA
magazine, is published three
times a year. The Editor is always
interested in your comments
and welcomes potential
contributions for future issues.
Material may have to be edited
prior to publication.
Please send your contributions
to psp@pspeur.org or write to:
The PSP Association,
FREEPOST RSLR-ZTGA-HHAU
Towcester NN12 6BX
Where there’s a Will there’s a way…
A gift in your Will to The PSP Association is a gift that will make a
difference to others in the future.
Once you’ve looked after your family and friends please think
about leaving a legacy to The PSP Association.
Every legacy we receive makes a real difference to the lives of
people with PSP and CBD. It also means we can continue to fund
vital research to identify the causes, develop effective treatments
and find a cure.
Legacies also allow us to continue to develop our work in line
with the needs of people living with PSP and CBD and their
families and give us the ammunition to fight for a world free of
both these diseases.
Your legacy to the PSP Association will have a lasting impact.
For further information please call us on 01327 356132 or email
cameron.wood@pspeur.org
PSP Matters Summer 2012 - issue 54

Complementary Therapies • Everest Base Camp

Transcription

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