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Issue number 55<br />
PSP Matters<br />
www.pspassociation.org.uk<br />
<strong>Autumn</strong> <strong>2012</strong><br />
Continuing Care • Olympic Torch • Support Group Lifeline
Contents<br />
4. News Update<br />
Launch of the PSPA’s new <strong>web</strong>site at the<br />
end of September<br />
5. News Update<br />
Family and Friends Day in Cheshire plus<br />
PSPA receive a Commendation for their<br />
Carer’s Information Pack<br />
6. Care Pathway<br />
PSPA have introduced a number of new<br />
practices aimed at further enabling access<br />
to services to meet standards of care for<br />
people affected by PSP<br />
10. Continuing Care<br />
A family tells of their experience of how<br />
PSP means life changes for the individual,<br />
their families and friends<br />
12. Personal Experiences<br />
Telling it as it is…musings and snippets on<br />
life with PSP or CBD<br />
14. Personal Experiences<br />
Comedy combined with reality helps raise<br />
awareness of PSP<br />
16. Fundraising<br />
PSPA Supporters tell of their experiences in<br />
carrying the torch for PSP<br />
18. Your Events<br />
An update on events our supporters have<br />
organised or taken part in from going<br />
beyond the call of duty to throwing the<br />
cake away!<br />
22. Upcoming Events<br />
Read about the exciting fundraising events<br />
you could take part in<br />
24. Research<br />
Huw Morris gives a progress report on the<br />
formation of an important new research<br />
organisation<br />
25. Support Groups<br />
A list of support groups taking place across<br />
the country<br />
02 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
4<br />
5<br />
14<br />
16<br />
10<br />
18<br />
22 24
PSP Matters<br />
Executive Editor:<br />
Fergus Logan<br />
Design and Print:<br />
BSP and Newnorth Print Ltd, Bedford<br />
Cover Picture:<br />
Hannah Daykin with her father, David,<br />
and the Olympic Torch – see page 13<br />
for her story.<br />
The PSP Association<br />
PSP House, 167 Watling Street West,<br />
Towcester, Northamptonshire,<br />
NN12 6BX<br />
T: 01327 322410<br />
F: 01327 322412<br />
www.pspassociation.org.uk<br />
E: psp@pspassociation.org.uk<br />
The views expressed in PSP Matters, which<br />
is published three times a year, are not<br />
necessarily those of the PSP Association and<br />
therefore products and services advertised<br />
or promoted should not be taken as<br />
recommendations by the Association, who<br />
cannot be held responsible should any<br />
complaint arise.<br />
PSP Matters is available as a pdf and can be<br />
downloaded from the <strong>web</strong>site<br />
Online Forum & HealthUnlocked<br />
The PSP Association’s online forum,<br />
PSP_HealthUnlocked (www.psp.<br />
healthunlocked.com/) provides a safe place<br />
for people affected by PSP or CBD to share<br />
experiences and support each other with<br />
the challenges of living with these diseases.<br />
The PSP Association is dedicated to the support of<br />
people with Progressive Supranuclear Palsy (PSP) and<br />
the related disease Cortico Basal Degeneration (CBD),<br />
and those who care for them. As PSP and CBD are very<br />
similar, we often use ‘PSP’ as a shorthand for both.<br />
The PSP Association Registered Charity Numbers:<br />
England and Wales 1037087 / Scotland SC041199<br />
Follow us on Twitter @pspassociation<br />
Chief Executive<br />
What a busy time it has been – for<br />
the entire nation! The Queen’s<br />
Silver Jubilee, the Olympic and<br />
Paralympic Games and it has<br />
been no different for the PSP<br />
Association.<br />
We now have the Helpline up and<br />
running, our volunteer programmes<br />
are burgeoning (with new Support<br />
Groups forming all over the country)<br />
and our Specialist Care Advisers<br />
making great progress in ensuring we get in touch<br />
with everybody who is affected by PSP. News of these<br />
developments and pen-portraits of our new staff members<br />
can be found throughout this issue.<br />
Our local activists have been busy too, with a range of<br />
fundraising initiatives involving eating, slimming, golfing,<br />
running, singing, swimming, torch bearing and any number<br />
of other lively and inventive activities. ‘Hats off’ to all those<br />
who help raise thousands and thousands of pounds for PSPA<br />
by the strength of their commitment and (often) the sweat<br />
of their brow.<br />
You can keep up-to-date with the latest information about<br />
current and future events by visiting our new <strong>web</strong>site at<br />
www.pspassociation.org.uk or by finding us on facebook or<br />
twitter.<br />
As always, we love to hear from you – why not get in touch?<br />
Fergus Logan Chief Executive<br />
Working for a World Free of PSP<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 03
News update<br />
New look <strong>web</strong>site<br />
As part of our programme of<br />
improving services to members, a<br />
new <strong>web</strong>site will be launched at<br />
the end of September.<br />
“We need to provide information for our<br />
members, those living with PSP and CBD,<br />
their carers, friends and family as well<br />
as a resource for medical professionals,”<br />
said our Director of Development. “The<br />
site will include the latest fundraising<br />
Don’t forget your flu jab<br />
For many of us, a bout of flu can be<br />
unpleasant, but not serious. However,<br />
people living with PSP are at greater risk<br />
of developing serious complications of flu<br />
such as bronchitis and pneumonia.<br />
We encourage you to contact your GP<br />
to seek advice about having the flu jab,<br />
as some anti-virals can result in the flu jab<br />
being ineffective.<br />
If you are the main carer of someone<br />
living with PSP, whose welfare may be at<br />
risk if you become ill, ask your GP about<br />
getting vaccinated too.<br />
Your GP surgery should have supplies<br />
of the vaccination in October.<br />
04 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
initiatives, updates on research projects<br />
and news from around the support<br />
groups. The popular forum and<br />
discussion boards will be updated and<br />
will have a fresh new look. As always, we<br />
will be keen to hear what people think<br />
- thoughts and comments will be very<br />
welcome.”<br />
Watch out for the new site - www.<br />
pspassociation.org.uk.<br />
SOS? SMS<br />
For deaf, hard-of-hearing and<br />
speech-impaired people there’s an<br />
additional emergency contact –<br />
Emergency SMS.<br />
This service allows registered<br />
users to send an SMS text<br />
message to the UK 999 service<br />
where it is then passed to the<br />
police, ambulance, fire rescue, or<br />
coastguard who can then reply to<br />
you.<br />
You will need to register your<br />
mobile phone before using the<br />
emergency SMS service.<br />
To register for Emergency SMS<br />
using text messages:<br />
- Send the word ‘register’ in an<br />
SMS message to 999<br />
- You will then receive SMS<br />
messages about the service<br />
- When you have read these SMS<br />
messages, reply by sending ‘yes’<br />
in an SMS message to 999<br />
- You will receive an SMS message<br />
telling you that your mobile<br />
phone is registered or if there is a<br />
problem with your registration.<br />
Or for more information, click on to<br />
http://www.emergencysms.org.uk/<br />
index.php
Family and Friends Day<br />
The first of our new regional events<br />
for people with PSP or CBD,<br />
family carers and friends takes<br />
place on Saturday November 17 th from<br />
9.30am – 3.30pm at Chimney House<br />
Hotel, Sandbach, Cheshire<br />
CW11 4ST. It will provide<br />
an opportunity for a ‘get<br />
together’ in an informal<br />
and relaxed setting and<br />
to meet others in similar<br />
circumstances.<br />
Specialist speakers will<br />
be coming along to offer advice on<br />
a range of practical issues, including<br />
planning a holiday, arranging a respite<br />
break and equipment needs, in addition<br />
to a demonstration of hand massage,<br />
Prism Glasses<br />
“ Specialist<br />
speakers will<br />
be coming<br />
along to offer<br />
advice...”<br />
Follow us on Twitter @pspassociation<br />
the latest news from the PSPA – and even<br />
a cookery demonstration with ‘Sven the<br />
Chef’!<br />
Tickets are £5 (to include refreshments<br />
and lunch) but pre-booking is essential.<br />
For more information,<br />
email debbie.benadie@<br />
pspassociation.org.uk,<br />
or call Debbie on 01327<br />
322410 or log onto the<br />
PSPA <strong>web</strong>site - www.<br />
pspassociation.org.uk<br />
Accommodation can<br />
also be booked directly with the hotel<br />
(£65 per double room, per night quoting<br />
reference BK23501) on www.chimneyhouse-hotel-cheshire.com/<br />
or call 01270<br />
769900.<br />
Seeing Clearly<br />
These specialist spectacles help to<br />
compensate for gaze problems and,<br />
when used for short periods, can help<br />
reading and eating, as well as watching<br />
television and enable the wearer to<br />
see their family and friends better. To<br />
place an order, please contact Debbie<br />
Benadie on 01327 322410. If you have a pair of prism glasses you<br />
PLEASE NOTE: Prism glasses are not suitable for<br />
people who wear prescription glasses, nor are<br />
they suitable for use when walking.<br />
no longer use, please would you kindly<br />
return them to the PSPA, as they can be<br />
reconditioned and used again.<br />
Commendation<br />
for PSPA<br />
The PSP Association’s Carer’s<br />
Information Pack<br />
has been highly<br />
commended by<br />
the British Medical<br />
Association<br />
(BMA). The pack<br />
is designed to<br />
help manage<br />
PSP or CBD, particularly if<br />
Raffle<br />
Winners<br />
Carer’s<br />
Information<br />
Pack<br />
Your personal guide to PSP<br />
Working for a world free of PSP<br />
you are caring for someone with<br />
either condition. Copies can be<br />
downloaded from our <strong>web</strong>site<br />
or by contacting the helpline<br />
and information service – call<br />
0300 0110 122 (calls are charged<br />
at local rate) or email: helpline@<br />
pspassociation.org.uk.<br />
PSPA Director of Programmes,<br />
Debra Chand, and copywriter,<br />
Alison Marlow, accepted the award<br />
on behalf of the Association.<br />
Thanks to everyone who took part<br />
in the Summer Prize Draw raising<br />
over £14,000 for PSPA.<br />
1st Prize:<br />
E. Burden from Sterlingshire<br />
2nd Prize:<br />
K Scale from West Midlands<br />
3rd Prize:<br />
P. Roberts from Merseyside<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 05
Care Pathway<br />
Latest Developments in<br />
PSP Services<br />
Following last year’s survey of experiences of people with PSP, the<br />
Association has revamped the way it works and introduced a number<br />
of new practices (from 1st June <strong>2012</strong>) aimed at further enabling access<br />
to services that meet standards of care for people affected by PSP.<br />
Here is a progress report…<br />
Helpline and Information Service<br />
Launched on 1st June, the helpline has already responded to several hundred<br />
telephone calls and emails. It is now the main first point of contact for advice and<br />
support for people with PSP and CBD, their families, carers, volunteers and health<br />
and social care professionals.<br />
06 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
Introducing new staff members…<br />
PROFILE<br />
Name Sharon Schillerstrom<br />
Position Helpline and Information<br />
Services Manager<br />
Responsibilities<br />
Managing and developing the service<br />
to offer confidential advice, information,<br />
practical and emotional support to<br />
people affected by PSP & CBD.<br />
Experience includes<br />
Over eight years working for a UK charity,<br />
supporting people living with another<br />
neurological condition, with 3 years in<br />
a similar role managing the national<br />
helpline and information service.<br />
Sharon says<br />
“I am really passionate about supporting<br />
family carers as all too often their needs<br />
go unnoticed. I experienced this myself<br />
as a young carer to a parent living with a<br />
terminal illness. I now care for someone<br />
close to me, combining work and care, so<br />
understand some of the challenges that<br />
caring brings.<br />
“A service like this can be a life-line for some<br />
families and individuals. People may have<br />
a question or need advice on such things<br />
as accessing services or their rights to an<br />
assessment or may be thinking of planning<br />
a holiday and want practical advice. It’s that<br />
type of information we can help with.<br />
“Sometimes people just need a listening ear.<br />
We know how reassuring that can be and I<br />
would encourage people to get in touch.”<br />
Next step?<br />
“Over the next few months, we will be<br />
developing our information bank and aim<br />
to have the most extensive and up-to-date<br />
repository of information in the UK on all<br />
aspects of living with PSP.<br />
“I am keen to recruit and train volunteers<br />
for the helpline and information service,<br />
to enable us to further strengthen our<br />
support for people affected by PSP. I will<br />
also be developing our range of printed<br />
information. It is really important that<br />
people affected by PSP are involved in<br />
shaping our information, as you are the<br />
experts. (I’d love to hear from you – please<br />
get in touch!)”<br />
Hobbies<br />
Outside work, Sharon enjoys walking,<br />
gardening, listening to music and<br />
cooking for family and friends. Her<br />
passion for championing the needs of<br />
carers led her to become a volunteer<br />
for Northamptonshire Carers, where she<br />
spent over four years as a Trustee. Sharon<br />
hasn’t hung up her volunteering hat just<br />
yet - she has been a volunteer for a small<br />
local community group for over 25 years.<br />
Contact:<br />
Call 0300 0110 122 or email<br />
helpline@pspassociation.org.uk
Specialist Care Advisers<br />
Follow us on Twitter @pspassociation<br />
Helpline:0300 0110 122 / helpline@pspassociation.org.uk<br />
The team of Specialist Care Advisers work to ensure that people affected by PSP or CBD<br />
have access to good local support - advising on the services available and acting as<br />
advocates with health and social care professionals to make sure services are available<br />
when needed. This was an area highlighted as a priority in the PSP survey last year. The<br />
team now welcomes two new members…<br />
PROFILE<br />
Name Jan Brittain<br />
Position Specialist Care Adviser<br />
Area<br />
South East England & London<br />
Experience<br />
Qualified nurse and midwife; further<br />
education lecturer; worked with<br />
people with learning difficulties and<br />
for charities including Macmillan<br />
Cancer Support, British Red Cross and<br />
Alzheimer’s Society.<br />
Jill says:<br />
“I was born and bred in North London, and<br />
qualified at the North Middlesex Hospital,<br />
where I stayed for 7 years before having<br />
my family. I returned to employment after<br />
my youngest child went to school but<br />
have always wanted to work with people<br />
with neurological conditions. Many years<br />
ago, a very good friend’s brother had an<br />
acquired brain injury and my best friend’s<br />
PROFILE<br />
Name Michaela Morris<br />
Position Specialist Care Adviser<br />
Area<br />
North East England & Scotland<br />
Experience includes<br />
7 years as Specialist Occupational<br />
Therapist in hospices and community<br />
Michaela says:<br />
“I am delighted to be joining the PSPA at<br />
such an exciting time of development and<br />
growth. Through my work, I am very aware<br />
of how difficult it can be to find services<br />
and support when needed. I am looking<br />
forward to building links with individuals<br />
Dad had Multiple Sclerosis. I believe<br />
that the skills I have gained throughout<br />
my very varied career will be an asset to<br />
people with PSP/CBD. I am passionate<br />
about my new role and really look forward<br />
to working with health and social care<br />
colleagues to enrich and improve the<br />
quality of lives for all people affected by<br />
PSP.”<br />
Hobbies<br />
Jan is an outdoor girl, loves walking and<br />
hill climbing, exploring the countryside<br />
and visiting National Trust and English<br />
Heritage properties, photography,<br />
reading, and cinema but her real<br />
passion is music – most kinds but<br />
especially jazz.<br />
Contact<br />
Call 01473 233285 or email jan.brittain@<br />
pspassociation.org.uk<br />
and their families, friends and carers, as<br />
well as health professionals and voluntary<br />
agencies to raise standards of care and<br />
access to services. I have been really ‘struck’<br />
by the great work that is being done here<br />
and is planned for the future – daunting<br />
and exciting at the same time!”<br />
Hobbies<br />
Outside work Michaela enjoys walking,<br />
creative activities, baking, singing and<br />
spending time with friends and family.<br />
Contact<br />
Call 01423 858548 or email michaela.<br />
morris@pspassociation.org.uk<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 07
Care Pathway<br />
Specialist Care Advisers<br />
08 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
PROFILE<br />
Name Jill Lyons<br />
Position Specialist Care Adviser<br />
Area<br />
South West England and South Wales<br />
Experience includes<br />
6 years as Nurse Specialist<br />
Jill says:“I have worked at the Association<br />
for almost 6 years as a Nurse Specialist,<br />
and my background is as a registered<br />
nurse. I have practised in hospitals, as a<br />
GP Practice Nurse, in stroke rehabilitation<br />
and am trained as a ‘Care of the Elderly<br />
Specialist’.<br />
“I am excited about the new role of<br />
Specialist Care Adviser and prepared for<br />
the challenges ahead. I will be focussing<br />
PROFILE<br />
Name Kat Haines<br />
Position Specialist Care Adviser<br />
Area<br />
North West England, North Wales and<br />
Northern Ireland<br />
Experience includes<br />
Extensive experience of progressive<br />
neurological conditions<br />
Kat says:<br />
“I have worked as a Nurse Specialist at the<br />
PSPA since March 2010 and am now really<br />
looking forward to helping our members<br />
gain the best possible support from within<br />
the statutory social and health services.<br />
“I have extensive experience of progressive<br />
neurological conditions having worked for<br />
many years on a specialist neurological<br />
unit in a major hospital in Lancashire.<br />
Prior to that, I worked in the community,<br />
on enabling access to support and<br />
identifying gaps in the provision of health<br />
and social care - I think this new role will<br />
allow us to be more proactive.<br />
“Having worked with PSP for six years, I am<br />
well known in this area and will remain<br />
a point of contact for information and<br />
advice for the region.”<br />
Contact<br />
Direct Line: 01934 842366<br />
jill.lyons@pspassociation.org.uk<br />
with adults with challenging behaviour<br />
and was engaged in research, up to PhD<br />
level, investigating the implications of<br />
health beliefs on depression and symptom<br />
management in people with Parkinson’s<br />
Disease, and their carers.<br />
“In my new role I hope to help carers<br />
and people with complex needs feel<br />
empowered, by providing them with the<br />
necessary signposting and information. “<br />
Contact<br />
Direct Line 01995 601533<br />
kat.haines@pspassociation.org.uk
!<br />
Volunteering Services<br />
Follow us on Twitter @pspassociation<br />
Helpline:0300 0110 122 / helpline@pspassociation.org.uk<br />
We aim to establish the highest standards and increase the numbers of volunteers involved in our<br />
work, enabling us to make a real difference to people living with PSP, their families and carers by<br />
reducing the sense of isolation and providing timely support and information in a variety of ways.<br />
Introducing new staff member…<br />
PROFILE<br />
Name Wendy Crofts<br />
Position Volunteering Services<br />
Manager<br />
Experience<br />
20+ years working with volunteers in<br />
national charities: Victim Support, the<br />
MND Association and the MS Society<br />
Wendy says:<br />
“I am really excited about working with the<br />
PSP Association as I know the difference a<br />
strong volunteering service can make to<br />
people living with and affected by PSP.<br />
“I have gained vast amounts of experience<br />
in all aspects of volunteering practice from<br />
recruiting and supporting volunteers,<br />
designing and delivering training and<br />
the development and implementation of<br />
good practice guides and programmes.<br />
PSP & CBD Helpline and<br />
information service<br />
0300 0110 122<br />
(Monday to Friday, 9am until 5pm)<br />
Messages can be left outside these hours.<br />
Email:<br />
helpline@pspassociation.org.uk.<br />
We aim to respond to all enquiries within<br />
24 hours.<br />
I am looking forward to getting to know<br />
existing volunteers and working with<br />
members of staff to build on the strong<br />
foundations already in place.”<br />
Hobbies<br />
Spending time with her new grandson<br />
and two sons. Wendy is a wannabe<br />
gardener and likes long walks but<br />
avoids hills! She enjoys entertaining and<br />
cooking and has taken up sewing again<br />
– just finishing a quilt she started 10<br />
years ago!<br />
Contact<br />
Call 01327 356134 or email at<br />
volunteering@pspassociation.org.uk.<br />
“My father has advanced PSP and I<br />
am doing everything I can to make<br />
his life more than an existence. This<br />
is not easy.<br />
“I cannot stress enough, how<br />
much better I felt having called<br />
the PSP helpline for the first time.<br />
To be listened to by someone who<br />
understood was like a weight<br />
being lifted off my shoulders. To<br />
know that I can call back and that<br />
help has been offered, as well as<br />
understanding and being listened<br />
to, means so much. Thank you.” Daisy<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 09
Continuing Care<br />
Life Changes<br />
The diagnosis of PSP means life changes for the<br />
individuals, their families and friends. PSP Matters<br />
talks to Nicky Christall-Grier about her family’s<br />
experiences…<br />
Karate World Champion, Bill<br />
Christall was dedicated to his<br />
family and to karate – a sport he<br />
adored and in which<br />
“ I’ve learnt that<br />
he excelled. In 2003, at<br />
the age of 69, he began<br />
to experience a variety<br />
of symptoms and in<br />
May 2007 he received a<br />
diagnosis of PSP.<br />
“Mum, Marilyn, and<br />
Dad returned home<br />
and life continued as it<br />
had before,” tells Nicky.<br />
“But as Dad’s condition deteriorated,<br />
10 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
there is support<br />
out there but<br />
you have to<br />
know the right<br />
questions to<br />
ask...”<br />
Mum battled on, caring for him virtually<br />
single-handedly - visits from family<br />
relieved some of the pressure. Dad was<br />
not sleeping, so that made<br />
it even more difficult for<br />
Mum to rest. They did not<br />
receive any help from the<br />
services.”<br />
Nicky explained that<br />
various respite care<br />
options had not worked<br />
out and Bill was admitted<br />
to a care home whilst<br />
Marilyn and the family<br />
decided on a course of action.<br />
“We sought<br />
advice from Age<br />
UK who suggested<br />
that Mum and<br />
Dad might be<br />
eligible for NHS<br />
Continuing Care. I<br />
began to research<br />
it and realised it<br />
was what we needed. I spoke to Dad’s<br />
consultant and GP to secure their<br />
support, along with that of the home<br />
where Dad was staying.<br />
“Mum was also assessed by case<br />
workers and we completed lots of<br />
forms. The main thing we had to prove<br />
was that the disease was unpredictable<br />
and variable.”<br />
Bill and Marilyn were finally approved<br />
for Continuing Care and in October<br />
2010 Bill moved permanently into a<br />
home paid for by the NHS.<br />
“I’ve learnt that there is support out<br />
there but you have to know the right<br />
questions to ask,” adds Nicky. “Social<br />
services won’t necessarily tell you what’s<br />
available but if you know what to ask<br />
for, you can be assessed and may be<br />
eligible – you need to ask questions<br />
from the outset.”
Follow us on Twitter @pspassociation<br />
Helpline:0300 0110 122 / helpline@pspassociation.org.uk<br />
What is NHS Continuing Healthcare?<br />
This is free care provided over an<br />
extended period of time (outside<br />
of hospital) that is arranged and<br />
funded by the NHS. It is only available<br />
for people who need ongoing<br />
healthcare and meet specific eligibility<br />
criteria. This service is sometimes<br />
called ‘fully funded NHS care’.<br />
NHS continuing healthcare can be<br />
provided in any setting, including<br />
a care home, hospice or the home<br />
of the person being cared for. If the<br />
individual is living in a care home,<br />
NHS continuing healthcare will cover<br />
care home fees, including the cost of<br />
accommodation, personal costs and<br />
healthcare.<br />
If the service provided is in the home<br />
of the person, it will cover personal<br />
care and healthcare costs - it may also<br />
include support for the carer.<br />
To be eligible for NHS continuing<br />
healthcare, the person being cared for<br />
must be assessed as having a ‘primary<br />
health need’ with a complex medical<br />
condition and substantial and ongoing<br />
care needs. Not everyone with a<br />
disability or long-term condition will<br />
be eligible.<br />
“ If the service<br />
provided is in<br />
the home of the<br />
person, it will<br />
cover personal care<br />
and healthcare<br />
costs - it may also<br />
include support for<br />
the carer.”<br />
Advice for applying for NHS continuing healthcare<br />
• Planning ahead isn’t always easy,<br />
but thinking about continuing care<br />
funding as early as possible can be<br />
helpful. Even if a person is not yet<br />
eligible for continuing care, it is worth<br />
using this checklist to prepare for<br />
assessments in the future.<br />
• Compile a medical history of the<br />
person being cared for and update<br />
it on a regular basis. This information<br />
may be useful later i.e. if the application<br />
is refused and you appeal against the<br />
decision.<br />
• Keep a brief log of all communication<br />
with health and social care providers<br />
about the needs of the person you<br />
care for. Things to include in the log –<br />
brief details, date, time, name of those<br />
you spoke to.<br />
• Do your own assessment of the<br />
person you are caring for. The<br />
Department of Health’s national<br />
framework document is quite<br />
lengthy, but pages 18 – 22 provide<br />
useful information.<br />
http://www.dh.gov.uk/en/<br />
Publicationsandstatistics/<br />
Publications/<br />
PublicationsPolicyAndGuidance/<br />
DH_103162 or see PSPA contact details<br />
below<br />
• Whether applying for or appealing<br />
against an earlier decision, always<br />
put things in writing and keep all<br />
correspondence.<br />
• Ask your GP to support your<br />
application. Request medical records<br />
from various bodies involved in the care<br />
of the person e.g. the hospital or the GP.<br />
• Try to attend all assessments or<br />
appeal/ review hearings.<br />
• Be persistent.<br />
Remember, PSPA is here for you.<br />
For advice call the helpline -<br />
0300 0110 122 or email helpline@<br />
pspassociation.org.uk<br />
For more information click on to;<br />
www.dh.gov.uk/en/<br />
Publicationsandstatistics/Publications/<br />
PublicationsPolicyAndGuidance/<br />
DH_103162<br />
www.nhs.uk/chq/pages/what-iscontinuing-care.aspx<br />
www.ageuk.org.uk<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 11
Personal Experiences<br />
Telling it as it is…<br />
Musings and snippets on life with<br />
PSP or CBD<br />
Travels with my<br />
Husband<br />
Careful planning is crucial in ensuring a smoothrunning<br />
holiday, advises Mary Allen. Here she tells<br />
PSP Matters about a recent adventure and gives a<br />
few top tips for trouble-free travel…<br />
12 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
“ I’d like to go back to Malaysia and<br />
Singapore,” declared my husband,<br />
Peter, one morning earlier this<br />
year. This came as no surprise to us<br />
because he was born and spent his<br />
early childhood in Malaysia and several<br />
times during his working life had been<br />
based in Singapore. Also, as a family,<br />
we had several very enjoyable holidays<br />
with many happy memories in both<br />
countries.<br />
But what had changed since those<br />
bygone visits was that Peter was now<br />
living with PSP.<br />
So, I set about making arrangements.<br />
To get a good deal on flights, I used a<br />
travel agency. ‘Trailfinders’ came up with<br />
a package, where we’d spend a couple<br />
of days in Kuala Lumpur before flying<br />
on to Penang, then on to the Cameron<br />
highlands (a beautiful, cool and relaxing<br />
part of Malaysia) before heading to<br />
Singapore. I discussed, with the travel<br />
advisor, Peter’s mobility – she would<br />
inform the airlines and assured us that<br />
he’d be well looked after. I booked the<br />
hotels, requesting rooms with disabled<br />
facilities.<br />
Next concern - travel insurance. We<br />
already had an annual policy and the<br />
insurers knew of Peter’s diagnosis but<br />
because we were travelling further<br />
afield, thought it wise to check. We<br />
paid an additional £68 on our normal<br />
premium - I was expecting it to be<br />
more! Knowing we were ‘covered’<br />
gave me considerable peace of mind,<br />
especially if we had to cancel at the last<br />
minute.<br />
Before we left, Peter saw his GP and<br />
ensured he had plenty of medication<br />
to cover the holiday (and for a couple<br />
of weeks extra, just in case there was
any kind of delay). I also packed a<br />
comprehensive first aid kit, along with<br />
a copy of Peter’s normal prescription<br />
(as some countries require proof that<br />
the drugs being carried are indeed<br />
prescribed medicines).<br />
So, with great trepidation, on 22 nd<br />
June this year, we started out on our<br />
17-day holiday, accompanied by our<br />
daughter, Sarah, who was to<br />
share the care with me. “ On arrival at the airport, I<br />
let the airline know we had<br />
arrived and from thereon<br />
Peter was very well cared<br />
for, being the first on to<br />
the airplane, but you are<br />
last off at the other end! In flight, Peter<br />
had extra attention from the cabin<br />
crew and upon landing, the ground<br />
staff looked after us. The assistance of<br />
all these people gave us one of the<br />
most peaceful flights we had ever<br />
experienced! (The upside of travelling<br />
with a person requiring assistance -<br />
you don’t have to keep checking that<br />
you have the right departure gate, the<br />
ground personnel do it all for you!) KLM,<br />
AirFrance and Malaysian airlines were<br />
excellent and I would not hesitate to fly<br />
with them again.<br />
Once at our<br />
Follow us on Twitter @pspassociation<br />
Once at our destination, we had a<br />
wonderful time, relaxing in the warmth<br />
and sunshine. I had a break when Peter<br />
went to stay with his brother and his<br />
wife (a nurse) in Penang - it was the first<br />
time in months I had been able to sleep<br />
without waking to every noise in the<br />
night.<br />
Unfortunately, Peter did have a nasty<br />
fall whilst we were<br />
away and was admitted<br />
to hospital for two<br />
days. I handed the<br />
PSP Green Fact Card<br />
(the one that explains<br />
PSP) to the doctors, so<br />
that they understood<br />
Peter’s condition. The care he received<br />
was excellent, although he was<br />
pleased to rejoin us for the rest of the<br />
holiday. Thanks to the hotel staff (and<br />
the medical team at the hospital) the<br />
experience was far less traumatic than<br />
it might have been. Our insurers were<br />
very helpful and apart from the initial<br />
outlay (now reclaimed) they dealt with<br />
the hospital for other costs.<br />
So, would we do this type of holiday<br />
again? Yes! if we could be assured of the<br />
same help and assistance we received<br />
throughout our journey this time.<br />
destination,<br />
we had a<br />
wonderful<br />
time...”<br />
Mary’s top tips on a<br />
successful holiday<br />
• Good planning<br />
• Ensuring we booked facilities for<br />
people with disabilities<br />
• Checking the detail of travel<br />
Insurance<br />
• Booking hotels where the cost of<br />
late cancellation isn’t the full cost<br />
of the stay<br />
• Carrying a comprehensive first<br />
aid kit<br />
• Carrying the green fact cards<br />
about PSP<br />
• Having a credit card with<br />
sufficient funds on it for<br />
emergency use<br />
• Having a good ‘second pair of<br />
hands’ who can competently<br />
do the running around when<br />
necessary<br />
• The most important thing, a good<br />
sense of humour…<br />
PS. Peter has asked to do the holiday<br />
again, so that we can get to the<br />
Cameron highlands - the part he<br />
missed out on!<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 13
Personal Experiences<br />
Comedy combined with reality helps<br />
raise awareness of PSP<br />
Comedian, activist, reporter and<br />
writer Mark Thomas is probably<br />
the last person you would<br />
expect to be spending his time raising<br />
awareness about PSP.<br />
The 49-year-old standup comedian<br />
is famed for his political and human<br />
rights campaigns, many of which have<br />
provided rich material for his radio, TV<br />
and stage shows for years.<br />
Now the father-of-two from south<br />
London is doing more to bring PSP into<br />
the public eye than possibly anyone<br />
else has to date.<br />
His method? His latest award-winning<br />
show Bravo Figaro. His reason? His father<br />
Colin has PSP.<br />
Mark has spent years fighting and<br />
campaigning on a range of issues he<br />
saw as unjust and unfair, and thrusting<br />
those issues into the public spotlight in<br />
a bid to get things changed.<br />
By comparison, his latest show is not<br />
about human rights, or unfair laws, or<br />
massive corporations exploiting the<br />
public. It is instead about his father’s<br />
love of opera, Mark’s own relationship<br />
14 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
with him and his father’s fight against<br />
PSP, a disease he has lived with for ten<br />
years.<br />
Mark, who opened Bravo Figaro at the<br />
Edinburgh Fringe Festival in August,<br />
has already won two awards for it: The<br />
Scotsman’s Fringe First Award, which<br />
recognises outstanding new theatre<br />
work; and the Herald Angel Award.<br />
“All the stuff I do and have ever done<br />
in the past has<br />
“ always been about<br />
saying something<br />
that isn’t normally<br />
said, or looking<br />
at something<br />
that isn’t normally<br />
looked at,” said<br />
Mark.<br />
“I guess Bravo Figaro is a continuation<br />
of that because PSP is not known<br />
about. I love the fact that talking about<br />
the show in newspapers, on radio and<br />
TV has meant awareness has been<br />
raised of PSP. It chimes with my belief<br />
that everyone has to do their bit and<br />
everyone has to shout.”<br />
There’s an<br />
interesting thing<br />
where as you get<br />
older you get a bit<br />
more forgiving...”<br />
The show, while perhaps predictably<br />
has been heralded as both hilarious and<br />
highly emotional at the same time, has<br />
generated one response that Mark had<br />
not foreseen.<br />
“One of the interesting things that has<br />
happened is the number of people who<br />
have contacted me because of the show,<br />
who have or have had relatives with PSP,”<br />
said Mark.<br />
“Because of the nature of PSP and the<br />
fact that there’s no known cause, there’s<br />
no treatment, it is often misdiagnosed<br />
and it’s not as commonly known as other<br />
degenerative diseases, it creates a feeling<br />
of medical isolation in people.<br />
“So when I have spoken to people who<br />
have experience of the disease there’s an<br />
instant bond. And that’s not just because<br />
you have had similar experiences but also<br />
because you are no longer marginalised.”<br />
Colin was a self-employed builder<br />
with an unexpected love of opera. Bravo<br />
Figaro tells the story of Mark’s childhood,<br />
growing up with a dad who he didn’t<br />
understand and didn’t always get along<br />
with.<br />
Colin was diagnosed with PSP ten years<br />
ago and since then Mark admits their<br />
relationship has altered and he sees his<br />
dad differently.<br />
“There’s an interesting<br />
thing where as you get<br />
older you get a bit more<br />
forgiving,” said Mark. “On<br />
a very personal level on<br />
how we see relationships,<br />
it’s not the finishing line<br />
but the distance travelled<br />
that counts.”<br />
“And as a parent myself I now realise<br />
just how easy it is to make mistakes!”<br />
Bravo Figaro is running at the Traverse<br />
Theatre Edinburgh until August 26th, and<br />
then begins a tour of the UK, including<br />
London in September. Details can be<br />
found by visiting www.markthomasinfo.<br />
co.uk.
PSP Support Group<br />
Provides Lifeline<br />
When Shirley Hurstwaite discovered her local<br />
PSP Support Group her world changed forever.<br />
Shirley and her husband Derek,<br />
who has CBD, had been left<br />
feeling isolated and alone with<br />
no support to help with Derek’s<br />
increasingly worsening condition.<br />
But from her first meeting of the<br />
newly revamped Northamptonshire PSP<br />
Support Group, Shirley<br />
felt a weight had lifted<br />
off her shoulders.<br />
“It was just amazing<br />
to meet other<br />
people in the same<br />
circumstances as us<br />
and to meet people<br />
“ It was just amazing<br />
who could help us and get us support,”<br />
said Shirley.<br />
“Straight away we were put in<br />
touch with healthcare professionals<br />
and charities who have really made a<br />
difference to our lives.”<br />
Since that first meeting, Shirley now<br />
receives eight hours of respite care for<br />
Derek every month, which enables her<br />
to visit her mother and do other things<br />
she wasn’t previously able to because<br />
she couldn’t leave Derek.<br />
Follow us on Twitter @pspassociation<br />
The couple have also been visited by<br />
a physiotherapist and have the support<br />
of a Parkinson’s Disease Nurse and an<br />
Information Support Worker. Derek has<br />
also just received a four-wheel walker to<br />
help him move about more easily.<br />
“I can’t thank the PSP Association<br />
enough,” said Shirley.<br />
“Before going to the<br />
meeting, Derek and<br />
I had felt we had<br />
been left locked up<br />
in a cupboard and<br />
forgotten about.<br />
Now we are getting<br />
the help and support we need and<br />
we’ve made friends with other people<br />
in similar circumstances. It’s fantastic.”<br />
The PSP Association runs 34 Support<br />
Groups across the country and is<br />
currently developing a further 11<br />
groups. The aim of the Support Groups<br />
is to provide a warm and welcoming<br />
environment in which people affected<br />
by PSP and CBD can meet and chat with<br />
other people in similar circumstances,<br />
and gain access to services and<br />
to meet other<br />
people in the same<br />
circumstances as<br />
us...”<br />
support from health and social care<br />
professionals and charities including the<br />
PSP Association.<br />
Support Groups are open for anyone<br />
to attend, be it people living with PSP<br />
and CBD, family members and friends,<br />
or health and social care professionals.<br />
We also welcome anyone who would<br />
like to volunteer to help out at a PSP<br />
Support Group in your local area. For<br />
more information about your local<br />
group please email psp@pspassociation.<br />
org.uk<br />
Turn2us<br />
Turn2us (part of Elizabeth Finn Care) is<br />
a registered charity which helps people<br />
access financial support via different<br />
funding streams i.e. welfare benefits<br />
and grants.<br />
Most of us have heard of SSAFA,<br />
but there are over 200 benevolent<br />
funds in the UK and hundreds of<br />
other accessible funding streams for<br />
individuals. Some are more widely<br />
known than others.<br />
Some funds are accessed more than<br />
others, for example The Retail Trust. This<br />
means the amount of financial support<br />
available may be lower than from lesser<br />
known funds. However, representatives<br />
of some lesser known funds may only<br />
meet once every couple of months,<br />
therefore having an application for<br />
funding approved may take several<br />
weeks.<br />
Do visit the <strong>web</strong>site http://www.<br />
turn2us.org.uk/ or contact the<br />
confidential free helpline for further<br />
advice. Opening hours are 8am until<br />
8pm Monday to Friday. Telephone:<br />
0808 802 2000.<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 15
Fundraising<br />
Carrying the Torch for PSP<br />
As the sporting success of the Olympics will live long in the<br />
memory, so too will the recollections of those lucky enough<br />
to help take the Torch on its epic journey around our Isles.<br />
Playing their part were the four PSPA ‘Olympians’ who were<br />
selected for their own ‘moment to shine’ as they ran with<br />
the flame. Here are their stories…<br />
Hannah Daykin carried the Olympic<br />
Torch in Sheffield where she is a full-time<br />
student. Her Dad has PSP.<br />
“It was an amazing experience,” said<br />
Hannah, who is studying criminology at<br />
Sheffield University. “It was my moment<br />
of glory and I wanted to dedicate it to<br />
my dad. It was just wonderful that he<br />
made it to Sheffield to see me.”<br />
Also carrying the torch in his<br />
hometown of Sheffield was Seb Coe, Vice<br />
President of PSPA and Chairman of The<br />
London <strong>2012</strong> Organising Committee.<br />
‘’I knew Seb had been told I was<br />
taking part on that day as well and I<br />
got the chance to meet him which was<br />
amazing!”<br />
16 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
Along the route Hannah was able to<br />
take the Olympic torch over to her Dad<br />
(see front cover), who had made the<br />
journey from Nottingham with Hannah’s<br />
mum and brother.<br />
Beccy Reading-Jones has run 10<br />
London Marathons for PSPA, raising<br />
over £9,000 and carried the flame in<br />
Wolverhampton. Beccy was nominated<br />
for her selfless contribution to support<br />
for charity and her role as a Scout leader,<br />
despite her own disability, dystonia.<br />
“I chose the PSP Association to run<br />
for years ago, as I wanted to support a<br />
smaller, less well-known charity. Next<br />
year will be my 11 th London Marathon for<br />
the Association and I have managed to<br />
persuade my nephew to run too. He will<br />
be quicker than me as he is younger, but<br />
if I can say that we have competed in the<br />
same race and have our picture taken<br />
together, I will be a happy Aunt!”<br />
“The torch relay was for all those I<br />
have helped over the years. It was an<br />
unforgettable day – I’m so proud and<br />
honoured to have been involved.”
Steve Watson lives in Lancashire and<br />
carried the torch in Bolton. Steve’s<br />
mother, Joyce, has PSP.<br />
He was nominated by<br />
Academy Juniors FC, a girls<br />
only football club that Steve<br />
started 4 years ago – it now<br />
has 150 girls aged 4-18<br />
playing every week. The girls<br />
help him in raising funds and<br />
awareness of PSP.<br />
“ ‘Enjoy your<br />
moment to<br />
shine’, and I<br />
completely<br />
did...”<br />
Follow us on Twitter @pspassociation<br />
“The weeks running up to the day<br />
were increasingly exciting, and the day<br />
was a massive high! When<br />
handing the torch to me,<br />
the organiser said, ‘Enjoy<br />
your moment to shine’,<br />
and I completely did!<br />
It was a truly amazing<br />
experience.<br />
“Throughout the run<br />
I was thinking about how huge the<br />
Olympics is, and what a privilege it<br />
was to carry a flame that brings hope,<br />
happiness and inspiration to so many<br />
people.<br />
“Since then I’ve taken the torch into 28<br />
schools and 15 residential care homes.<br />
This has been really popular and many<br />
places have made donations to PSP as a<br />
result!”<br />
If you would like to support ‘A<br />
Million to Beat PSP’ it’s not too<br />
late to make an Olympian effort.<br />
For further information contact:<br />
events@pspassociation.org.uk or<br />
contact Helen Porter on<br />
01327 356131<br />
<strong>2012</strong><br />
An organiser’s tale<br />
In the aftermath of the Olympics, we<br />
are delighted that Seb Coe (PSPA Vice<br />
President) is hosting a very special<br />
event at The Dorchester, London,<br />
where he will be speaking openly<br />
about his ‘Journey to <strong>2012</strong>’ guided by<br />
the questioning of chat show host,<br />
Michael Parkinson.<br />
Supporting Seb on the night will<br />
be some of the UK’s leading sporting<br />
personalities and Olympians and a<br />
host of VIP guests.<br />
This is the pinnacle of the PSP<br />
Association’s ‘A Million to Beat PSP’<br />
campaign, which has been endorsed<br />
by Lord Coe since its launch earlier in<br />
the year.<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 17
Your events<br />
Summer Reception<br />
Over 50 guests attended a<br />
summer evening reception<br />
hosted by PSPA Patron for<br />
Yorkshire, Lord Halifax and his wife, at<br />
their home, Garrowby Hall, near York.<br />
Lord and Lady Halifax and guest on the terrace of Garrowby Hall.<br />
Sisters step out<br />
The Fife Coastal Walk took place<br />
again this year for PSPA and is<br />
growing in numbers as more<br />
families turn out to support PSPA.<br />
Sisters Siobhan, Erin and Posy Clyne<br />
and were amongst those who took part<br />
in the 13 mile trek in memory of their<br />
Grandpa who passed away in April.<br />
Siobhan tells their story:<br />
“My Grandpa first became ill with PSP<br />
in 2004 but it wasn’t until 2010 that he<br />
was diagnosed. Even though he was<br />
ill, I have so many precious memories<br />
with him that I will hold on to forever.<br />
In March this year, Grandpa was taken<br />
into hospital. I went to visit him several<br />
times and I felt comforted just by being<br />
with him.<br />
After my Grandpa passed away in<br />
April, I manage to keep strong by<br />
reassuring myself that he is no longer in<br />
any pain or discomfort. I remember him<br />
as he was before, not how he was in the<br />
18 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
Wine and canapés were served on<br />
the terrace, which enjoys stunning<br />
views across the Garrowby Estate, whilst<br />
a harpist provided a perfect musical<br />
accompaniment. Guests were also<br />
York Carers’ Week<br />
York Carers Week Michael Shepherd with Lord &<br />
Lady Mayor, Keith & Karen Hyman, Guildhall, York<br />
The Clyne family on the coastal walk. Inset: Siobhan Clyne with her Grandpa, John.<br />
final stages of the illness.<br />
We took part in the Fife coastal walk<br />
with my parents in the hope that the<br />
funds we raised would go towards<br />
helping support people like my<br />
Grandpa and their families.”<br />
Starting at Earlsferry and continuing<br />
along the coast to Crail, the walk takes<br />
in 13 miles of beautiful scenery and<br />
invited to look around the beautiful<br />
private rooms of the house.<br />
Special thanks to Lord and Lady<br />
Halifax for their generous hospitality<br />
in helping to raise over £1,200. The<br />
Local Support Group did a great job<br />
in organising the event, supported by<br />
fundraiser Michael Shepherd and his<br />
volunteers.<br />
picturesque villages.<br />
Organiser, Elizabeth Birrell, also took<br />
part in the walk for the second year<br />
running. Elizabeth and husband, Ian,<br />
who is living with PSP, have helped<br />
coordinate the event in conjunction<br />
with their local Anstruther Rotary Club,<br />
and a fantastic £8,000 has been raised<br />
for PSP from the walks.
Beyond the call of duty<br />
Home Help, Lorna, went beyond<br />
the call of duty for the McNevin<br />
family when she took on<br />
the challenge of the Women’s Mini<br />
Marathon in Dublin this summer. Paula<br />
McNevin tells their story:<br />
“My Mam, Bernadette, was diagnosed<br />
in December 2009, My<br />
Dad, William, and I look<br />
after her. Lorna, our<br />
home help has been<br />
with us for three years,<br />
and is brilliant. As well as<br />
her home help duties,<br />
she has become one<br />
of the family and is a<br />
vital part of our support<br />
system. She and my<br />
Mam are great friends,<br />
Coventry Golf Day<br />
On Thursday, 6 th September, 36 golfers took part in the PSPA’s<br />
15th annual Coventry Golf Challenge. A big thank you goes<br />
once again to Clews & Co for their continued support with<br />
this event.<br />
With freshly cut grass and the sun shining down this<br />
turned out to be a fun filled day for all. The winners of the<br />
tournament were ‘McIntosh Law’ (pictured) reaching a score<br />
of 93 points from the Stableford challenge.<br />
We would like to thank all those that took part in helping us<br />
make the Coventry Golf Challenge another success.<br />
Follow us on Twitter @pspassociation<br />
and often ‘gang-up’ on Dad when he<br />
won’t sit down! Lorna and her daughter<br />
Joanne ran the Flora Women’s Mini<br />
marathon on 4th June for the PSPA, and<br />
all together we have raised over €1,000<br />
- as well as distributing approx 100 PSP<br />
information cards!”<br />
Canine Swimathon<br />
Marianne Aughton and Ruth Tomlinson<br />
organised an 18-hour Sponsored Canine<br />
Swimathon where each dog swam for<br />
20 minutes. They had 54 dogs splashing<br />
and having fun in the pool and have<br />
raised a lot of money for PSP.<br />
Proud of helping with<br />
PSP Tribute Funds<br />
A lasting way to honour<br />
someone special<br />
www.muchloved.com | Registered Charity No. 1118590 | info@muchloved.com<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 19
Your events<br />
Fred’s Challenge<br />
Since Fred Smart’s wife Isabel was<br />
diagnosed with PSP in 2009, Fred<br />
has been on a mission to raise the<br />
profile of the condition in his town of<br />
Fraserburgh, Aberdeenshire.<br />
With lots of fundraising activities<br />
being held around the town, Fred<br />
has raised over £3,500 and he says his<br />
next challenge will be to create a PSP<br />
support group in Fraserburgh for the<br />
local community.<br />
“If we can get the support, we’ll do<br />
it,” says Fred. “Not a lot of people know<br />
about PSP. The people at Aberdeen<br />
Hospital, when Isabel was diagnosed,<br />
couldn’t tell us if there was a group we<br />
could contact. People are coming out of<br />
hospital feeling lost.”<br />
Isabel began showing<br />
signs of PSP in 2007,<br />
but was not diagnosed<br />
with the disease until<br />
two years later. Fred<br />
says he would like to continue caring<br />
Howl!<br />
Brother and Sister Team, Haroun and Amina Appiah challenged themselves to take<br />
on the Wolf Run for PSP, a 10K race through woods, swimming across streams and<br />
wading through bogs in aid of PSP.<br />
Along with a group of friends, the team has raised almost £2,500 for PSPA in<br />
memory of their mother, Patricia.<br />
20 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
“ Fred has<br />
raised over<br />
£3,500...”<br />
for his wife at home. “Isabel can’t walk,<br />
her speech is going, and her sight is<br />
sometimes affected by it, but<br />
we’ve had a lot of help locally,<br />
and the social services have<br />
been spot on. We get a speech<br />
therapist who comes pretty<br />
regularly to help, and we get the<br />
physiotherapist up from the hospital.”<br />
Fred continued, “I want to make<br />
people aware of this disease and to<br />
let people know that there is support<br />
available in Fraserburgh.”<br />
If you are interested in helping Fred<br />
set up a support group in Fraserburgh<br />
then contact us at volunteering@<br />
pspassociation.org.uk or call us on<br />
01327 322410.<br />
Edinburgh Marathon<br />
Well done to the PSPA runners in<br />
the Edinburgh Marathon who raised<br />
over £6,500. One runner, Paul Hedley,<br />
(pictured) raised over £800.
Walking in Wales<br />
Family and friends of Dave and Linda<br />
Hurley (who is living with PSP) donned<br />
their walking boots and trekked 10<br />
miles from Brynmawr to Abergavenny<br />
British 10k London Run<br />
Seven supporters put on their running<br />
shoes for PSPA and helped raise over<br />
£3,500 at the British 10k London Run. We<br />
thank them for all their hard work and<br />
dedication<br />
Sherry does Curry<br />
Sherry Najran hosted a curry night in<br />
June and raised £347. This sum will be<br />
matched by her employer, Halifax bank.<br />
Sherry’s dad is living with PSP and her<br />
Mum is his carer.<br />
Follow us on Twitter @pspassociation<br />
along the old railway pathway to raise<br />
funds for PSPA. Dave and Linda joined<br />
the team towards the end of the<br />
walk to enjoy the good weather and<br />
camaraderie.<br />
Another friend, Lucy, organised a<br />
sponsored climb to the top of Peny-Fan,<br />
(highest peak in the Brecon<br />
Beacons) and 9-year old entrepreneur,<br />
Harry, created a sponsored slot car<br />
racing game at his school fete. In all,<br />
over £600 was raised and the Hurley<br />
family would like to thank everyone<br />
who contributed.<br />
Serial jumper<br />
Brian Trigg has just<br />
launched himself<br />
out of an aeroplane<br />
for the 66 th time!<br />
Brian, (74) a<br />
parachute regiment<br />
veteran, is planning another 4 parachute<br />
jumps to bring his total to 70, in 75 years.<br />
Most recently, he has been accompanied<br />
by his relatives, Nancy and Darren Jones,<br />
who also organised a cabaret night –<br />
together raising over £2,250. Brian’s wife,<br />
Carol, is living with PSP.<br />
Throw away the cake!<br />
Congratulations to Larry Mabey who<br />
has lost 3 stone on a sponsored slim.<br />
“At the beginning of January, I started<br />
my weight loss programme, with<br />
the intention that by 1st June (my<br />
birthday) I would be 13 stone – a loss of<br />
approximately 3 stone. I have not been<br />
this weight since I was 38 years old; I’m<br />
60 now (gasps of disbelief!)<br />
“My father died of PSP, and this was<br />
a very difficult challenge for me – I<br />
love my food and drink, but I decided I<br />
would achieve it through a programme<br />
of sensible diet and exercise. As an<br />
incentive to myself, I put in £10 a week<br />
until I hit the 13 stone target, with my<br />
estimate that I was saving this amount<br />
on my food bill.<br />
“At 11am, on June 1st <strong>2012</strong>, after<br />
a marathon workout at the gym I<br />
weighed in at my goal weight of 13<br />
stone. It has been very hard but well<br />
worth it, not only have I raised over<br />
£600 but I feel so much fitter now that I<br />
am slimmer.<br />
“Thanks to everyone who has<br />
sponsored me - I would have given<br />
up half way through without your<br />
support and the thought of the<br />
money I was raising for PSPA. All I have<br />
to do now is keep the weight off!”<br />
We would love to hear from you. Please write to us and tell us what is<br />
happening in your area. Send your letters to the Editor at PSP House,<br />
167 Watling Street West, Towcester, Northants NN12 6BX or email to<br />
psp@pspassociation.org.uk<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 21
Upcoming Events<br />
Santa Run<br />
Join thousands of jolly Santas in our<br />
festive 5K fun run on 9 th December<br />
around Greenwich Park. Gather a<br />
group of friends together to enjoy this<br />
short course – a distance achievable<br />
for all abilities (you<br />
needn’t run – walking<br />
“ and jogging is also<br />
allowed!)<br />
How to Enter:<br />
Bring some glee<br />
to PSP by taking<br />
part in the family<br />
Santa Run. We have<br />
guaranteed places for which there is a<br />
Gather a group<br />
22 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
of friends<br />
together to<br />
enjoy this short<br />
course...”<br />
£25 registration fee and a sponsorship<br />
pledge of £100 towards a world free of<br />
PSP.<br />
If you would like to join the<br />
Greenwich Park race, contact the Events<br />
Team on events@pspassociation.org.uk<br />
or 01327 356132.<br />
Once registered you will<br />
receive a free Santa Suit<br />
and fundraising materials<br />
to help you reach your<br />
target, including sponsor<br />
forms, Santa’s training<br />
plan, balloons and posters.<br />
Be a part of the jolliest race in the UK!<br />
Fresh Faces on the<br />
Fundraising Team<br />
Introducing new staff members...<br />
PROFILE<br />
Name: Dean Joy<br />
Position: Community and Events<br />
Fundraiser<br />
Experience includes:<br />
Events Coordinator for Keech<br />
Hospice Care based in Bedfordshire<br />
Dean says:<br />
“I am delighted to be joining PSPA at a<br />
time where there are so many changes<br />
being made. I will be looking after the<br />
events such as running and challenges,<br />
as well as maintaining our links with<br />
corporate sponsors. I am pleased to be<br />
working for a national charity that has<br />
high ambitions, matching my own. I<br />
hope that I can help PSPA achieve these<br />
goals and continue to raise awareness<br />
for the charity and its work.”<br />
Hobbies<br />
Dean is a footie fan, being a season<br />
ticket holder at Luton Town Football<br />
Club where he cheers on his team<br />
alongside his Dad - that’s when he’s<br />
not being dragged around shopping<br />
centres by his fiancée!<br />
Contact<br />
01327 356132 or email, dean.joy@<br />
pspassociation.org.uk
New Zealand Golf Day Carol Concert<br />
The New Zealand Golf<br />
Club is a top-class course<br />
located within the famous<br />
Surrey Heath belt. Not long<br />
by today’s standards at a<br />
little over 6,000 yards, but<br />
with a lowly par of 68 it<br />
represents a challenge. There<br />
will be prizes for the 1st,<br />
2nd and 3rd placed teams,<br />
and a nearest the pin prize<br />
on a selected hole in the<br />
afternoon round.<br />
For more information and<br />
to book your place on the<br />
New Zealand Golf Day please<br />
contact the fundraising team<br />
at events@pspassociation.<br />
org.uk or 01327 322419.<br />
Follow us on Twitter @pspassociation<br />
PSPA<br />
We still have places!<br />
Help us find a cure for PSP by joining our running team<br />
at the Virgin London Marathon.<br />
For more information call:<br />
01327 356132<br />
Email:<br />
marathon@pspassociation.org.uk<br />
Visit: www.pspassociation.org.uk<br />
Progressive Supranuclear Palsy<br />
Registered charity numbers:<br />
England & Wales 1037087 /<br />
Scotland SC041199<br />
The PSP Association’s Carol Concert is on 13 th December<br />
at St Clements, East Cheap, London. This is always a festive<br />
evening with carols led by the talented Helios Choir, which<br />
is followed by a Mulled Wine and Mince Pie Reception at<br />
the Regis Offices, close to St Clements.<br />
Please book early to avoid<br />
disappointment. Tickets are £18<br />
and can be reserved at psp@<br />
pspassociation.org.uk or call<br />
01327 322410. Alternatively, for a<br />
booking form and full details, click<br />
onto www.pspassociation.org.uk<br />
For more information and to sign up<br />
for any of these events, please contact<br />
the fundraising team on 01327 356131<br />
or email events@pspassociation.org.uk<br />
Christmas Cards &<br />
Special Gifts<br />
Christmas <strong>2012</strong> Cards and Gifts now available from the<br />
PSPA shop at www.pspassociation.org.uk or watch out for<br />
the special PSPA Christmas Card Brochure arriving in the<br />
post soon.<br />
Please help us continue our vital work - order PSPA<br />
cards and gifts in <strong>2012</strong>.<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 23
Photo courtesy of MND Association<br />
Research<br />
Huw Morris<br />
Huw Morris of the ‘UK-PSP Research Network’ gives<br />
PSP Matters a progress report on the formation of<br />
this important new research organisation.<br />
The last 15 years have seen an<br />
explosion in our knowledge of<br />
PSP. Let me recap...<br />
We now know that nerve cell damage<br />
in PSP is associated with the abnormal<br />
deposition of a brain protein called<br />
‘tau’ - common to other closely related<br />
conditions and some forms of frontotemporal<br />
dementia/Pick’s disease and<br />
CBD.<br />
We have learned about the biology<br />
and pathology of tau and know that<br />
“ ...a UK wide<br />
tau’s normal function<br />
appears to be to stabilise<br />
microtubules, which<br />
enable transport and<br />
communication within<br />
nerve cells. In PSP, tau<br />
protein forms into<br />
abnormal protein clumps<br />
(‘aggregates’), which may<br />
directly cause nerve cell<br />
damage and/or disrupt microtubules.<br />
Based on this work, a number of<br />
possible disease treatments have<br />
been suggested, including drugs that<br />
modify tau chemistry (such as sodium<br />
valproate, lithium and tideglusib) and<br />
others that stabilize microtubules (such<br />
24 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
as Davunetide).<br />
In parallel, new<br />
techniques are<br />
emerging which will<br />
allow the measurement<br />
of abnormal tau in the<br />
cerebrospinal fluid<br />
(CSF) and on brain<br />
scans. A recent, large<br />
collaborative genetic<br />
study has described a<br />
number of new genetic<br />
risk factors (which do<br />
not obviously relate to tau). Some of<br />
these genetic risk factors seem to relate<br />
to the way in which nerve cells respond<br />
to the accumulation of abnormal<br />
proteins and this is likely to be a key<br />
factor in age related neurodegenerative<br />
diseases.<br />
Although PSP is not a ‘familial’<br />
disease, we know that there are a<br />
number of genetic risk factors, which<br />
slightly increase the risk of developing<br />
PSP, probably in conjunction with<br />
collaborative<br />
network to<br />
enable us to fully<br />
understand the<br />
biology of the<br />
disease.”<br />
other genetic or<br />
environmental<br />
factors. Much of<br />
this research has<br />
been supported and<br />
encouraged by the<br />
PSP Association - our<br />
challenge now is to<br />
translate these preclinical<br />
discoveries<br />
in PSP and tau into<br />
effective treatments for patients.<br />
So we are in the process of setting<br />
up a UK wide collaborative network<br />
to enable us to fully understand<br />
the biology of the disease; also to<br />
have a way of tracking the effects of<br />
treatments in patients and to show<br />
that these treatments can be safe and<br />
effective. The network will include<br />
Newcastle, Manchester, Oxford,<br />
Cambridge, London, Brighton and<br />
Cardiff. A standard system will be used<br />
to gather clinical data from patients<br />
who are happy to participate and a<br />
variety of biological samples from<br />
blood and, ideally, cerebro-spinal<br />
fluid (‘biomarkers’) to enable the<br />
development of new disease tracking<br />
tests. We will use the Network to<br />
develop new studies that will involve<br />
clinical assessment, genetics, biomarker<br />
and brain imaging work.<br />
This information, along with results<br />
from post-mortem studies, will be<br />
gathered together to create a ‘wider<br />
picture’. Importantly, we will try and<br />
increase the local referral of patients<br />
to research clinics, as we know that<br />
there are likely to be a large number of<br />
patients with PSP in the UK who have<br />
been misdiagnosed, have not been<br />
in contact with a PSP nurse or seen a<br />
specialist with an interest in PSP. The<br />
NHS now supports research officers<br />
within a network for neurodegenerative<br />
disease (DeNDRoN) and we would hope<br />
that they would be able to support a<br />
PSP network.<br />
We are also envisaging collaboration<br />
with the pharmaceutical industry and/<br />
or the development of new UK-based<br />
studies on treatments for PSP. With<br />
time, we hope that the network will<br />
expand to include new centers. The<br />
PSP Association is supportive of the<br />
development of this network and we<br />
hope that this is something that can be<br />
up and running before the end of the<br />
year.<br />
UK-PSP Research Network<br />
David Burn, Alex Gerhard, John Hardy,<br />
Janice Holton, Henry Houlden, Andrew<br />
Lees, Nigel Leigh, Michelle Hu, Huw<br />
Morris, Tamas Revesz, James Rowe, Romi<br />
Saha, Kevin Talbot, Nick Wood.
Support Groups<br />
Support Group Meetings<br />
Please note: Support Group dates are planned<br />
well in advance and are subject to change.<br />
Please check our <strong>web</strong>site or call the PSPA on<br />
01327 322410.<br />
Group Held Date & Time<br />
Lancaster St Johns Hospice, Lancaster Fri 28 Sept <strong>2012</strong>, 13.00<br />
Brentwood The Marillac, Brentwood, Essex Sat 29 Sept <strong>2012</strong>, 14.30<br />
Northampton Grangefield Residential Care Home, Earls Barton Sat 29 Sept <strong>2012</strong>, 14.30<br />
Cardiff Ty George Hospice Care, Whitchurch Tue 2 Oct <strong>2012</strong>, 11.00<br />
Leicester Age Concern, Earls Shilton Tue 2 Oct <strong>2012</strong>, 11.00<br />
Cambridge Trumpington Village Hall, High St, Trumpington Sat 6 Oct <strong>2012</strong>, 14.30<br />
Aberdeen The Stuart Resource Centre, Aberdeen Mon 8 Oct <strong>2012</strong>, 14.00<br />
Bedhampton Social Hall, Bedhampton Mon 8 Oct <strong>2012</strong>, 10.30<br />
Coventry Ansty Social Club, Grove Road, Ansty Mon 8 Oct <strong>2012</strong>, 13.00<br />
Morpeth Stannington Village Hall, Stannington Tue 9 Oct <strong>2012</strong>, 10.30<br />
Shrewsbury The Hamar Centre, Mytton Oak Road Thu 11 Oct <strong>2012</strong>, 11.00<br />
Pocklington Burnby Hall Room, Pocklington Sat 13 Oct <strong>2012</strong>, 10.00<br />
Dorchester Joseph Weld House, Dorchester Hospice Tue 16 Oct <strong>2012</strong>, 11.00<br />
Camberley 79 The Avenue, Camberley, Surrey Thu 18 Oct <strong>2012</strong>, 10.30<br />
Wimbledon Drake House, Wimbledon, London Sat 20 Oct <strong>2012</strong>, 14.45<br />
Brentwood The Marillac, Brentwood, Essex Sat 27 Oct <strong>2012</strong>, 14.30<br />
Northampton Grangefield Residential Care Home, Earls Barton Sat 27 Oct <strong>2012</strong>, 10.30<br />
Norwich Stoke Mill Restaurant, Stoke Holy Cross Sat 3 Nov <strong>2012</strong>, 11.00<br />
Carlisle Day Hospice, Eden Valley Hospice, Durdar Rd Mon 5 Nov <strong>2012</strong>, 13.30<br />
Glasgow The Beardmore Hotel, Clydebank Mon 5 Nov <strong>2012</strong>, 13.30<br />
Warrington Fairfield & Hawley Neighbourhood Project, Warrington Thu 8 Nov <strong>2012</strong>, 14.00<br />
Pocklington Burnby Hall Room, Pocklington Sat 10 Nov <strong>2012</strong>, 10.00<br />
Cheltenham Leckhampton Court Hospice, Cheltenham Tue 13 Nov <strong>2012</strong>, 11.00<br />
Cranage Cranage Village Hall, Cranage, Cheshire Tue 13 Nov <strong>2012</strong>, 13.30<br />
Liverpool The Neurosupport Centre, Norton Street Fri 14 Nov <strong>2012</strong>, 11.00<br />
Wimbledon Drake House, Wimbledon, London Sat 24 Nov <strong>2012</strong>, 14.45<br />
Northampton Grangefield Residential Care Home, Earls Barton Sat 24 Nov <strong>2012</strong>, 14.30<br />
Bristol Sue Woolnough’s Home, Henbury Tue 27 Nov <strong>2012</strong>, 13.30<br />
Cambridge Trumpington Village Hall, High St, Trumpington Sat 1 Dec <strong>2012</strong>, 14.30<br />
London The National Hospital for Neurology, Queen’s Square Mon 3 Dec <strong>2012</strong>, 11.00<br />
Pocklington Burnby Hall Room, Pocklington Sat 8 Dec <strong>2012</strong>, 10.00<br />
Lancaster St Johns Hospice, Lancaster Fri 14 Dec <strong>2012</strong>, 13.00<br />
Wimbledon Drake House, Wimbledon, London Sat 15 Dec <strong>2012</strong>, 14.45<br />
Pocklington Burnby Hall Room, Pocklington Sat 12 Jan 2013, 10.00<br />
Northampton Grangefield Residential Care Home, Earls Barton Sat 26 Jan 2013, 14.30<br />
Brentwood The Marillac, Brentwood, Essex Sat 27 Jan 2013, 14.30<br />
Wantage Mary Simmonds Home, Wantage Tue 29 Jan 2013, 11.00<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 25
Support Groups<br />
Support Group News Update<br />
Support Group Round Up<br />
Belfast<br />
We were all very proud when Fiona’s<br />
husband, Robbie, carried the Olympic<br />
torch in Portadown - they have<br />
tirelessly used the Torch to fundraise<br />
for the Northern Ireland Rare Disease<br />
Partnership (NIRDP). There were a<br />
few members of the Partnership who<br />
took part in the Torch relay and our<br />
congratulations to them all.<br />
Sadly, our group numbers have<br />
dropped considerably. The meetings<br />
are a great source of information, as<br />
members have a wealth of experience as<br />
carers. Fiona and I will try to meet with<br />
anyone who wishes to see us.<br />
We trust you all have a great summer<br />
and look forward to seeing you in<br />
November.<br />
PS We’d also like to congratulate<br />
Stephen and Belinda Parker on their<br />
marriage and wish them every success in<br />
the future.<br />
Brentwood<br />
This September, it was our first<br />
anniversary! And to mark the occasion,<br />
Dr.Malaspina, Consultant Neurologist<br />
from Barts, will come to talk to us about<br />
PSP and current research issues in which<br />
members may like to become involved.<br />
We usually have between 10 and 22<br />
people attending our meetings along<br />
with one or two new ‘attendees’, who<br />
may be people with PSP or family<br />
26 PSP Matters <strong>Autumn</strong> <strong>2012</strong><br />
members. We seem to have established<br />
a core group who attend regularly and<br />
others who drop in and out as they are<br />
able – all are welcome.<br />
We have had organised speakers<br />
(as requested by group members) on<br />
topics ranging from speech therapy, PSP<br />
Specialist Care Advisers, carers’ support<br />
and benefits information. We were<br />
pleased to welcome Dean Joy (from PSPA<br />
fundraising) who gave an interesting<br />
talk which made us all feel part of the<br />
bigger picture - as we try to ‘do our bit’<br />
with monthly raffles and have secured a<br />
generous donation from Easterford Lodge<br />
of The Essex Masons.<br />
Please note: There won’t be a meeting<br />
in November or December.<br />
Kent<br />
Ever since my husband was diagnosed<br />
with PSP in 2010 I found myself struggling<br />
to deal with the impact of this disease on<br />
both our lives. Living in East Kent meant<br />
that I was unable to attend our nearest<br />
support group in London, but felt sure<br />
there must be other people in the area<br />
who were in a similar position so I decided<br />
that I would set up a group closer to<br />
home. Our first meeting took place on 9 th<br />
July, and although there was a modest<br />
number who attended, I feel confident<br />
that future meetings will evolve and<br />
develop.<br />
Our meeting was supported by Jan<br />
Brittain from PSPA who gave an overview<br />
of developments in the Association. She<br />
explained about the recently launched<br />
‘care pathway’ and standards of care for<br />
PSP. The group also exchanged tips to<br />
help individuals with daily tasks, including<br />
the use of a radiator brush to assist with<br />
washing between toes and a croc clip<br />
to hold a serviette in place. I hope that<br />
this support group will enable people<br />
affected by PSP and their carers to share<br />
experiences and enjoy a cup of tea<br />
together.<br />
Loughborough<br />
A group of seven met at Kathryn Timmons’<br />
home (4 other people expressed interest<br />
but were unable to attend). Sharon<br />
Schillerstrom, Helpline and Information<br />
Services Manager from PSPA joined<br />
us to explain her new role within the<br />
organisation. We tried to keep the tone<br />
of the meeting positive and shared<br />
experiences that have helped both<br />
patients and carers to lead as normal a life<br />
as possible.<br />
We decided that we would continue<br />
to meet and had our next meeting on<br />
Monday, September 17 th at 2pm in Barrow<br />
upon Soar. For future meetings, we would<br />
be very happy to welcome any other<br />
people with an interest in PSP to share<br />
support - and cake!<br />
Morpeth<br />
Although the turnout was fewer than at<br />
the previous meeting, we were still about<br />
12 people strong, and fortunate to have 2<br />
professionals in our midst.<br />
We were very pleased to have with<br />
us again Dr. Chris Morris, of Newcastle<br />
University, who is also a member of<br />
the Dementia and Neurodegenerative<br />
Diseases Group. Dr. Morris gave some<br />
useful insights into the brain and visual<br />
problems in PSP sufferers. We also<br />
welcomed a new guest speaker, Ms.<br />
Anne Stark Mitchell, who is a Speech and<br />
Language Therapist at Morpeth Cottage<br />
Hospital. Anne spoke at length on <strong>matters</strong><br />
relating to speech and swallowing and<br />
fielded various questions throughout.<br />
We covered a range of topics in our<br />
discussion circle, and it was useful to<br />
exchange experiences as carers and<br />
patients. It was reassuring to discover that,<br />
as individual as the progression of PSP can<br />
be, there is a wide network of help and<br />
support groups and medical advice out<br />
there for all those who need to access it.<br />
Our thanks once again to Anne Wilson<br />
and Tim Rawsthorne for hosting the<br />
meeting.<br />
Date of next meeting, Tuesday, 9 th<br />
October <strong>2012</strong>, same venue in Stannington.
Northampton<br />
The Group meets on the last Saturday of<br />
each month at either 10.30am or 2.30pm<br />
at Grangefield Residential Care Home,<br />
Earls Barton, NN6 0HE.<br />
We are a lively bunch and as well as<br />
offering support to each other, organise<br />
fundraising events and social evenings.<br />
On 28 th July a successful evening took<br />
place at Tea-zels in Harrold which raised<br />
nearly £800<br />
Group members Shirley, Wendy and<br />
Sue also took part in a craft fair in East<br />
Hunsbury selling home made jams,<br />
hand made cards and PSP merchandise.<br />
Between them they raised over £200.<br />
In June, Mel Smith, the Parkinson’s<br />
Nurse came along to the meeting<br />
and in May, Cheryl Corrodus from<br />
Northamptonshire Neurology Team<br />
joined us<br />
The group always welcomes new<br />
members and is looking for volunteers<br />
to help.<br />
For more information, email Peter.<br />
Daniels1957@hotmail.co.uk or call<br />
07917823279. There’s always a warm<br />
welcome and we look forward to<br />
seeing members old and new at future<br />
meetings.<br />
Norwich<br />
The third meeting of our PSP and CBD<br />
support group took place at Stoke Holy<br />
Cross on the 7th July. The meeting was<br />
well attended and many items were<br />
discussed. Individuals advised about<br />
the difficulty in getting wheelchairs and<br />
The Red Cross seemed to be a good<br />
starting point. Insurance issues and<br />
experiences were discussed and the PSP<br />
listing had been found to be very useful.<br />
The meeting was very upbeat and all<br />
attending offered some contribution.<br />
Fundraising was discussed and the<br />
whole group thought it was a positive<br />
step to promote awareness of PSP and<br />
CBD, through various fundraising events.<br />
For more information, contact Linda<br />
Moore on 01502 516757.<br />
Follow us on Twitter @pspassociation<br />
Pocklington<br />
Hello from Pocklington! We share in lots<br />
of love, care, fellowship, kindness and<br />
hugs.<br />
Events to tell you about…<br />
Saturday 10 th November we have<br />
our own local, international pianist to<br />
entertain us at the Methodist Church<br />
in Pock from 7.30pm. Best music of all<br />
types, plus our trio of 10-year old lads<br />
who are most talented.<br />
And some time, when we have a<br />
spare minute, we will have a bring and<br />
share lunch.<br />
We’re already planning events for next<br />
year, including an event to be staged by<br />
The Right Honourable, The Lord Mayor<br />
of York and the Lady Mayoress, along<br />
with the Sheriff and his lady. Watch this<br />
space for details…<br />
Wimbledon<br />
Held monthly, the South West London<br />
Support Group is held in Wimbledon<br />
and since its first meeting in April <strong>2012</strong>,<br />
has steadily grown, and now has around<br />
20 members.<br />
At the last meeting in July, Dr. Marie-<br />
Helene Marion, consultant neurologist,<br />
specialising in PSP, CBD and Parkinson’s<br />
disease, was the guest speaker. Previous<br />
speakers include the Parkinson’s nurse<br />
for the area, and Cameron Wood, the<br />
Director for Development, from the<br />
PSPA.<br />
We aim for the meetings to<br />
be informal and friendly and for them<br />
to give members the opportunity<br />
to gather important and useful<br />
information, ask questions, and share<br />
experiences and problems with others<br />
diagnosed with PSP / CBD, carers, and<br />
family members. Collectively, we find<br />
that we offer each other support, advice<br />
and friendship.<br />
The meetings are held on Saturdays<br />
at Drake House in Wimbledon. Dates<br />
for the remainder of the year are as<br />
follows: 20 October, 24 November and<br />
15 December. The Group also plans<br />
to have one or two additional social<br />
occasions during the remainder of the<br />
year.<br />
For further information please contact:<br />
Marisa Robertson, email - marisa_<br />
robertson@hotmail.com, mobile - 07813<br />
094 530.<br />
Please come along and join us! We look<br />
forward to welcoming new members!<br />
Contacts<br />
Office:<br />
Tel: 01327 322410<br />
Fax: 01327 322412<br />
Email: psp@pspassociation.org.uk<br />
Website: www.pspassociation.org.uk<br />
Support Groups:<br />
Debbie Benadie, Administrative<br />
Support Officer: 01327 322410<br />
debbie.benadie@pspassociation.<br />
org.uk<br />
New Helpline:<br />
0300 0110 122<br />
Make your voice<br />
heard<br />
PSP Matters, the PSPA<br />
magazine, is published three<br />
times a year. The Editor is always<br />
interested in your comments<br />
and welcomes potential<br />
contributions for future issues.<br />
Material may have to be edited<br />
prior to publication.<br />
Please send your contributions<br />
to psp@pspassociation.org.uk<br />
or write to:<br />
The PSP Association,<br />
FREEPOST RSLR-ZTGA-HHAU<br />
Towcester NN12 6BX<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> 27
Where there’s a Will there’s a way…<br />
A gift in your Will to The PSP Association is a gift that will make a<br />
difference to others in the future.<br />
Once you’ve looked after your family and friends please think<br />
about leaving a legacy to The PSP Association.<br />
Every legacy we receive makes a real difference to the lives of<br />
people with PSP and CBD. It also means we can continue to fund<br />
vital research to identify the causes, develop effective treatments<br />
and find a cure.<br />
Legacies also allow us to continue to develop our work in line<br />
with the needs of people living with PSP and CBD and their<br />
families and give us the ammunition to fight for a world free of<br />
both these diseases.<br />
Your legacy to the PSP Association will have a lasting impact.<br />
For further information please call us on 01327 356132 or email<br />
cameron.wood@pspassociation.org.uk<br />
PSP Matters <strong>Autumn</strong> <strong>2012</strong> - issue 55