Autumn 2015 edition - chesterparkinsons

TELEPHONE CONTACTS
Colin Cheesman (Chair)
`
01244 678866
colin@cheeseco.net
Ann Edwards (Secretary)
01244 520757
annie137@hotmail.co.uk
David Stoddart (Vice Chair)
01244 316534
Pam Adams
(Member’s Liaison Officer)
Sue Woods (Nurse Specialist)
Western Cheshire
01244 376546
paminchester@yahoo.co.uk
0151-350-3327
Mirain Allen (Nurse Specialist) 01352 803593
Flintshire
Rachael Millington (LPA)
Chester & Western Cheshire
0344 225 3658
Sara Owen (LPA)
Flintshire
0344 225 3719
David Mundy
Branch Volunteer Research
Liaison Officer
01829 270090
david.mundy@yahoo.co.uk
Helen Dymond
helendymond1@sky.com
Contact Helen if you have any items to be included in the Parkinson Post
Please contact Pam Adams [01244 376546] for details of and general enquiries about Social Events and the future programme. Where reservations and/or
menu choices are required in advance, please use the booking forms provided.
PARKINSON’S POST
CHESTER & DISTRICT
BRANCH
AUTUMN 2015
You will recently have had the opportunity to vote in the elections for Trustees from England to
fill two vacancies. One of those vacancies was the seat from which I have retired last nine years,
having completed nine years as a Trustee – the maximum time allowed. It has been an amazing
and life changing experience for me. Following a diagnosis of Parkinson’s at a relatively young
age of 54, I was lucky enough to be able to retire and combining my developing understanding
of Parkinson’s with my working experience, I developed what can only be described as a second
career in the voluntary sector, and which has carried me through the last 15 years. I say ‘carried
me through’ deliberately, because whether by good luck or good judgment, it has undoubtedly
been hugely beneficial therapy for me and one of the key factors in keeping my condition manageable.
The work of a Trustee can certainly be demanding – both physically and mentally, but keeping
physically fit and mentally alert are both essential ingredients to a good quality of life. Work as a
Trustee certainly compels you to do both and I am sure that discipline has been an important
part of my life with Parkinson’s. Will I miss it? I will certainly not miss catching the 6.26am train
to London on a dark winter’s morning. On the other hand being a Trustee has taken me all over
the British Isles and beyond. I have trekked in the Sahara, attended the World Parkinson
Congress in Montreal and made friends in Australia. Since my diagnosis, life has been different
from anything I could have imagined – but so far it has not necessarily been worse. The big
learning for me has been the discovery that a diagnosis of Parkinson’s is far from being the end
of the world. Of course, it’s not easy, but if you are determined enough to keep on top of
Parkinson’s rather than allow it to be in control, your quality of life will not suffer.
If being a Trustee is such a good experience, you might ask whether I regret having to stand
down. The rules which limit the length of time that a Trustee can serve are really important in
ensuring the flow of new blood and new ideas to the charity. For the individual too, after a time,
there’s a danger that one’s initial enthusiasm for making a contribution can get blunted and
simply turn into habit. It’s healthy for any organisation that there is a steady turnover of members. That is equally true locally for our local Branch. The health of the branch depends, in the
same way, on people being willing to come forward and take a share in running our activities,
not to mention the work that goes on behind the scenes. We have a great committee, but there
always more to be done and we need to be confident that there will be enough people to carry
our initiatives forward into the future.
Colin Cheesman,
Branch Chair.
Speech and language therapy is often underrated in its significance for people with
Parkinson’s. The loss of tone and volume and the increasing rigidity of the facial
muscles combined with a loss of expression can cause the most severe
communication problems. In very extreme cases it can cause swallowing problems
making eating and swallowing medication very difficult.
The Centre is developing good relationships with the SLT team at the Countess of
Chester Hospital. Jo Prichard and her colleague, Emma Petherham, Speech and
Language Therapists based there, have agreed to give a presentation on the
service, what it can do for people with Parkinson’s and how to access it. Kit Clewley,
Speech and Language Therapist from the Betwsi Cadwaladr Local Health Board is
also going to be there, so we will be able to get a view on the services from across
the Cheshire and Flintshire patch.
The session will be held on Friday 23 October at 3.00pm at the Neuro Therapy
Centre. Refreshments will be available from 3.00pm.
Movers
Shakers
CHOIR NEWS!!
Choir restarted on Friday September 18th and we are
already rehearsing for our Christmas programme!!
DO come and join us if you can – 1-3pm on Fridays at the
Neuro Therapy Centre
As well as singing at the Christmas lunch, we are joining
the Chester Bach Singers for their Carols by Candlelight
at St. Mary’s without- the -Walls Church in Handbridge!!
What an amazing experience that will be!!
Saturday 19th December – 730pm
Try and come!!
Their chosen charity for the collection at this concert is the
Neuro Therapy Centre!!
HELP US KEEP OUR RECORDS UP TO DATE
– AND SAVE COSTS
Please let us know if circumstances have changed by completing the form
below. Please cut it out and send it to the address below.
No stamp needed.
FREEPOST RTKR-ZYRC-ZUBZ
Parkinson’s UK
C1-C5 Brymau One Trading Estate
River Lane
Saltney
CH4 8RG
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Name: ……………………..........................................................…
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no longer lives at this address
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no longer wishes to receive the Post
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is deceased
would like to receive the Post at the following
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GOING INTO HOSPITAL?
If you know you are going to be admitted to Hospital for elective treatment or are unfortunate to be admitted as an emergency? Please remember to take all your Medication with
you along with a list of all the tablets you are taking for your Parkinson's and any other
medical problems you may have. ( maybe a relative or friend could help you with this)
This will help the Medical and Nursing Team understand your personal requirements on
admission and the need to have your Medication on Time during your stay.
The Branch has a supply of Parkinson's Wash Bags available for People
with Parkinson's going into Hospital. Please ring Pam Adams, Member’s
Liaison, on 01244 376546 or email paminchester@yahoo.co.uk prior to
your admission if you would find a Wash Bag useful.
Telephone Befriending Update
Hello, my name is Mel Stevens and I
have been with Chester Branch Committee since earlier this year. I am the lead
in the development of our forthcoming
new support service
Telephone Befriending.
We recently sent out a leaflet to all our
members asking about your interest in
this service. This is a little reminder to
ask if you haven`t already sent back
your completed survey and wish to do
so, with the opportunity to add
comments, then please can you forward
it in the Freepost envelope provided.
Thank you.
Christmas Cards!
If any of you haven’t bought your cards yet – there are
Parkinson’s cards for sale at the Wesley Centre in St. John’s
Street, Chester from mid-October to mid-December
Monday- Saturday 10am – 4pm
This message comes on behalf of Cards for Good Causes
Research
News
Reviewing Grant Applications
An important part of the work of Parkinson’s UK is to provide grant aid to support
research into the Parkinson’s condition. To ensure that only the best quality research
is funded, every grant application received is subject to a rigorous review process.
Fundamental to this process is the belief that both the ‘lay’ and the ‘peer’ perspectives
are important, so every grant application is reviewed by both scientific ‘peers’ (or
experts in the field) and people affected by Parkinson’s.
‘Lay grant reviewers’ are people with a personal knowledge of Parkinson’s who volunteer to review grant applications. They receive copies of applications, each including a
plain English summary of the proposed project, and give feedback as to which they feel
are of the highest priority for people with Parkinson’s, and therefore which should be
funded. This feedback is based on their personal experience plus a good measure of
common sense and may well highlight issues not identified by their scientific ‘peer’
reviewer colleagues.
Lay reviewers can choose whether to participate in the different rounds of grant
applications and may express a preference for being involved in specific applications.
Different applications require variable time commitments, with grant proposals
generally requiring about 3-4 hours of input, perhaps 40 hours across a year, but this is
flexible and all input is entirely voluntary.
I and Alistair Tranter recently ‘signed up’ to become lay reviewers and spent a very
interesting day of training in Sheffield. If any other local members feel such a role
might suit them, the contact at Parkinson’s UK is Isabelle Abbey-Vital:
iabbey-vital@parkinsons.org.uk
Cell Transplants
Foetal cell treatment aims to replace the cells lost in Parkinson’s with new healthy
developing cells from foetal brains. However this poses both logistical and moral
issues which have plagued this potential route to a new treatment. Now researchers
are working on alternatives such as utilising nerve cells made from stem cells.
A trial is being conducted by a team including Professor Roger Barker, a Parkinson’s
UK funded researcher from Cambridge University, and has been funded by a 12 Million
Euro grant from the European Commission. 150 people have been recruited from
across Europe. 40 randomly selected from this group will be offered the chance to
have a cell transplant involving foetal cells being injected into the brain. 20 will receive
a transplant and brain scans; 20 will be a non-transplant comparison who will also have
brain scans.
It appears from other studies that brain cells can take some time to ‘bed in’ and the
team hope to have results by 2018. It is hoped that the trial will finally provide a
definitive answer on the use of foetal cells in Parkinson’s. If it is successful it could be
a vital stepping stone towards making cell transplants a reality, using other tissue
sources, including stem cells created from patients’ skin.
BioResource Initiative
A research team from King’s College London have extended an invitation to
Parkinson’s UK to join their BioResource Initiative which is funded by the National
Institute for Health Research. This is part of a national project aiming to build up a
central library of information about people’s health, helping us to better understand
why different conditions such as Parkinson’s happen and how we can develop better
treatments for them. People with Parkinson’s who join the project will be asked to
provide a saliva sample by post, for genetic analysis. If the individual is happy, the
sample will be linked to their clinical records via their GP.
The data will be available on a strictly anonymous basis to scientists working on
ethically approved projects. It could also be used, again with the individual’s
consent, as a basis for making contact with people who could potentially take part in
research studies which are looking for participants in for example, trials of new
drugs.
For further information, you can visit: http://bit.ly/1SjjUhE
or contact the research team directly: Dr Byron Creese, Research Lead, King’s
College, London: Byron.Creese@kcl.ac.uk or 0207 848 8194.
Research Opportunities
Finally, two more opportunities to get involved in new research projects. Sheffield
Hallam University have been commissioned to calculate the economic and social
costs for people with Parkinson’s and their families across the UK. The aim is to
assemble evidence that can be used to persuade Government how to target resources in these fields. Volunteers of all stages, ages, locations etc. are needed –
find out more on: http://bit.ly/1SMoAwJ
A research team at Northumbria Healthcare NHS Foundation Trust are looking at
ways of improving the end of life experience of people with Parkinson’s, by gathering
the views of carers or relatives who have lost a loved one who had Parkinson’s.
The team have developed a private internet forum where views can be shared and
discussed, accessible on http://bit.ly/1MxdKw0
David Mundy
Branch Volunteer Research Liaison Officer
Open Monday, Tuesday, Wednesday,
Thursday 9-4pm and Friday 10-2pm.
We are particularly keen to work with
people who are newly diagnosed and
provide therapies that are appropriate
to them.
If you would like to be involved or just want to find out more about the Centre
and what it can do for you, please call 01244 678619 or visit our website at
www.neurotherapycentre.org
PARKINSON’S SPECIALIST NURSES
Sue Woods - 0151-350-3327 Western Cheshire
Mirain Allen - 01352-803593 Flintshire
Don’t forget that Malcolm Johnson has
information on transport.
He can be contacted on 07761 794824
Parkinson’s UK Helpline
Call FREE on 0808 800 0303
Changes in the Information & Support Worker Service
Parkinson's UK has made some changes in the organisation of the ISW Service. It will,
in future, be called the Parkinson's Local Adviser Service. Our Local ISWs, Rachael
Millington and Sara Owen have both been appointed Parkinson's Local Advisers for
their existing areas, although their telephone numbers will change.
See the Parkinson Post Extra for details.
A great time was had by all on the
4th September at Chows in Parkgate
FUNDRAISING
We are really fortunate in the financial support we receive from a whole range of
different sources. Whilst we have our regular fundraising events, there is always
something unexpected or unsolicited. Here are some of our recent receipts:
The Grosvenor Arms, at Pulford on 12th August
We rounded off 12 months as the
Charity of the Year at the Sainsbury’s
Local Store in Hoole with the
presentation of a cheque for £650. The
store raised over £2,000 for the Branch
during the year.
The lunch was preceded by a lovely invitation from David Hodgett and the Pulford Painters at
the Community Hall. We were invited to meet the Painters and view some of the beautiful art
work they were working on that morning. It was a real pleasure to meet such a talented group
of people who made us so welcome. If you enjoy painting and are interested in joining this
small group ring Colin for details.
The Branch Open Day at the
McCarthy’s house and garden in
Blacon raised over £600 despite a
damp start. Thanks to John and Ann
for throwing their house and garden
open.
DATES FOR YOUR DIARY…….
Next Parkinson's lunch is to be held on
Tuesday 10th November at The Red Lion, Doddleston, Chester CH4 9NG.
Please ring Pam Adams to book in.
There is a repeat of the popular Crabtree and Evelyn
evening event at the shop at 6, Bridge St, Chester
on Thursday 12th November 6-8pm.
Great opportunity to browse for Christmas gifts, Raffle and Goodie Bag.
Please note that the Christmas Lunch returns this year to Vicars Cross Golf Club,
Tarvin Road , Chester, CH3 7HN. Booking essential, to enjoy good food, great
company and music and song from the Movers Shakers Choir.
Contact David Stoddart on 01244 316534 to book.
Our regular supporters, the Tudor Rose Pub have raised more than
£500 for Parkinson’s this year.
FUNDRAISING
CONTINUED
Pat and Bob Muirhead donated
£100 raised at a party.
Young Darcy Smyth, the
Chair’s granddaughter raised
over £5 at her school fete
by selling braids
YOGA
AQUA-MOBILITY
Tuesdays at the Neuro Therapy
Centre, Saltney:
9.45 for 10am start.
Thursdays at the Oddfellows Hall,
Saltney: 2 – 4pm
at Total Fitness
continues at
10am on Fridays
GROUP PHYSIOTHERAPY AT THE
NEURO THERAPY CENTRE
On Tuesday afternoons at the Neuro Therapy Centre there is an opportunity
for people with Parkinson’s to attend a Group Physiotherapy session.
The session is run by Kavitha and concentrates on sitting exercises rather
than mat work which is difficult for some.
The session cost is £5
For more information why not ring the centre
on 01244 678619
We collected at two stores for the first time – Morrison’s in Saltney and at
ASDA in the Chester Greyhound Park which together raised over £500.
GET CONNECTED
Feel you are missing something? Not technically minded? Nervous about computers?
These regular store collections is a basic income stream for us. We need to mount
collections as often as we can. Helping with collections is not onerous – you only need to
find a spare hour on the day – and many people really enjoy it. Judy has now taken on
the role of orgsing the rotas for collectors. She is gradually working though our records
and updating the list of helpers. Would you be prepared to go on the list?
When a collection is due she sends an email to all on the volunteer collectors list, asking
for offers of help. She then tries to make the best fit. There is no obligation to respond.
Going on the list simply indicates that you would not object to being asked. The wider
the field, the less onerous for each individual.
To go on the list please email judy@cheeseco.net or phone [01244] 678866
HELP IS AT HAND
New technology can help to improve the quality of life for
everyone, but there are huge benefits for those who may be less mobile or who may become so.
These may include:
keeping in touch with friends and family, shopping at home, getting up to date information,
contacting your healthcare team, asking for help and advice, sharing problems with others,
avoiding feelings of isolation
WHY NOT GET STARTED?
Malcolm Johnson can offer free introductory tuition for beginners, advice on equipment and
setting up – all you need to get yourself launched.
Tuesdays 13:00 till 15:00
Phone Malcolm and make an appointment on
Tel: 01928 723383 or 07761 794824
jmalj2000@yahoo.co.uk