Staffordshire
Support Group News
We
have several events planned over the year, to which everyone with a link to MND
is welcome. All the Diary Dates can be found on the back page each newsletter
and on our events webpage. Here is more information on the events happening
this autumn - we look forward to seeing you!
Open Meeting with guest speakers on Complementary
Therapy
Everyone is welcome to join
us on Monday 10 September 6pm – 8pm at St Barnabas Church Hall, Bradwell for our open meeting. We shall hear about
different complementary therapies available and there will be the opportunity
to talk in more depth to the speakers over refreshments. People living with
MND, their carers, Health & Social Care Professionals, past carers,
supporters and anyone with an interest in MND is very welcome to join us!
Funding for transport to the
event is available. Please contact Hannah on 01283 713847 for more details.
Garden Centre Get-Together
We
have been holding our gatherings at Garden Centres very successfully over the
last year. We meet in the restaurant/café and enjoy tea and cakes. People
living with MND, their carers, family members and our supporters are all
welcome to join us.
We
aim to make these very informal get-togethers where we get to know each other,
exchanging experiences, stories, advice and news... (and
carers are welcome to have some ‘time-off’ and look around the garden centre as
we chat). We can also arrange transport to/from the events – please contact
Hannah for details.
Why
not join us on Tuesday 9 October, 2pm -
4pm
Go Free to the Annual AGM
& Conference!
There
is still time (just!) to join us at the MND Association’s conference which is a
must for people with MND and for those who support then on their journey with
the disease.
This
year’s theme is ‘With you all the way’ and will focus on practical help and
support for people on the journey with MND.
Date:
15 – 16 September 2007
Venue: Hilton Birmingham Metropole
Hotel (near the NEC)
The Staffordshire Support Group would
like to encourage as many people as possible to attend this year’s AGM and
Conference, so we are offering to pay the delegate fee and accommodation costs
for a limited number of people with MND and their carers. Please contact our
Association Visitor, Terry Thake on 01543 264654 for more details.
This
two-day event, which includes the AGM, provides an opportunity to:
·
Share ideas for
ensuring life goes on
·
Find out more
about advice and support available
·
Attend the
OSCARR Awards and the Walk to D'Feet* MND prize
giving
·
Enjoy a dinner
and dance
·
Have fun and
make new friends
The
normal cost is £30 (or £25 for early birds who book before 31 July) includes
all refreshments and a Saturday night three-course dinner and dance.
The
hotel is offering special delegate rates of Reduced rate costs are: Standard
single: £66.95 + VAT per room per night, inc
breakfast. Standard double or twin: £113.30 + VAT per room per night, inc breakfast.
Delegates
last year said,
“It is always a stimulating occasion – galvanising
and motivating to eradicate this awful disease.”
“I now have the information to help get
my husband the best treatment possible”.
For
more information or to book, go to www.mndassociation.org/annual conference,
call the Conference Team on 01604 611845 or email
conference@mndassociation.org.
We look forward to seeing you there!
It was lovely to see so many people at
the Free Spirit event this year. Thank you to everyone who helped us raise over £800 by sponsoring a balloon. Photos to be
published soon – watch this space!
Fancy a ‘Cuddle Seat’?
Senior Occupational Therapist, Sarah Lavender, from
She explained, “Holding someone’s hand is not the
same as giving a cuddle, so many people living with MND feel isolated as their
partners and family members are unable to sit next to them and provide physical
contact and affection.
“I wondered about a double riser/recliner which would
provide support when sitting and allow someone to sit next to them as well as
have the facility to assist with transfers.”
Sarah has approached the Tana
Trust, a small charitable trust established 20 years ago to assist in the
development, user evaluation and introduction of equipment for the disabled and
elderly. They are willing to put £10,000 into research and marketing into the
cuddle chair, but need your help!
They would like to establish the numbers of people
living with MND who would benefit from such a chair before they can go to the
Furniture Research Association. Can you please email: staffs@mndassociation.org or let our Association Visitor, Terry Thake know
your comments on this idea by calling 01543 264654. Thank you!
Sow the Word!
As a continuation of the Association’s Life Goes on
campaign, packets of seeds are available to help us spread the word about MND.
We would like as many people as possible to use these seeds
and help us celebrate life during MND Awareness Week (16-24 June).
Here are some ideas of how you can use them...
...if you have MND, you could plant them
in your garden with your family and friends...
...you can plant them in memory of a loved one...
...encourage
the children in your family to take the seeds into school for their class to
plant in pots or school garden (we have supporting leaflets and posters if you
wish to do this)...
...run a competition for the biggest plant amongst your friends , family, colleagues, or class at school....
However you would like to use them, please let us know what
you are doing and send us photographs afterwards! Local newspapers love to hear
about our work and we can make that phone call to get them interested – you may
even get your picture in the local paper or one of the region’s magazines!
To order your seeds and for more information, please contact
Hannah on 01283 713847 or write to: MND Seeds, 59A
Book Raises Money for Association
This article was
written for our Winter 2007 newsletter. Sadly, Pat
ended his journey with MND at Easter. Our thoughts are with his family at this
difficult time and it is with thanks that we are still able to promote Pat’s
book, the proceeds from which have been given to the Staffordshire Support
Group.
MND has given Pat Taft the time to do something he’s
always wanted – to write and publish a book!
Being a Kennel Club ‘A’
Panel Retriever Judge, dog trainer and international retriever championship
competitor, Pat has a wealth of knowledge and love of dogs, which he wanted to
share with other people. After his diagnosis in 2002, an American friend, Cindy
Keeley, encouraged him turn this into reality after
he helped train her
Their resulting partnership
produced, “My Way: Retriever Training Tips”. It is a weather-proof pocket-sized
book full of useful information. Whilst it is based on training a retriever,
its question and answer style will help anyone buying a puppy and teaching
obedience to dogs of all ages and breeds.
Pat admits that whilst the
words came easily, there were often days when he didn’t feel like writing and
needed to push himself. He says it was his friend’s enthusiasm that helped him
to finish it.
The process hasn’t always
been plain sailing either, as they spent a long time trying to find a
publisher. Pat and his wife Gill knew there was a market for it and wanted
to see it in print to raise funds for the Motor Neurone Disease Association.
Their answer came during a
conversation with Pat’s Speech and Language Therapist. She put them in touch
with The Rotary Club Tamworth who helped fund the initial printing costs. The
first print run sold out quickly to friends and dog club contacts and the next
batch is doing just as well.
Pat’s wife, Gill said, “Pat doesn’t want MND to stop him
from doing the things he loves. He still trains dogs and keeps involved in the
various dog clubs via teleconferencing and email. He texts friends and family
and uses a mouse-driven computer.” Pat is currently writing his second book,
based on his life story.
“My Way: Retriever Training
Tips” only costs £10.00, including
To be told
that you have a long term or progressive illness can be devastating for you and
your family. The Post Diagnosis Support Service provides a ‘listening
ear’ – someone you can talk to in confidence to help you come to terms with
your condition or that of a loved on. It can provide information on all aspects
of coping with your condition and how to get the best from your local statutory
and voluntary services.
Lynne Walsh
offers Post Diagnosis Support to people living within the following towns and
their surrounding villages: