new blog needs readers

part of the transition to the wordpress blog, http://sussexaphasia.wordpress.com/

needs readers to sign-up ..... previously, we sent e-mails automatically to members (up to 20) every time we posted anything.....now, readers and SASH members can opt-in...

and let us know what you think about the new blog....and sent us news and ideas to fill our pages.....

2010 seasonal

next time, in 2010, we will in a new blog

NEW LINK for counsellors USA

we have a new link http://www.counselor.org/
which is USA based web-site for counsellors in the USA.
Counselor.org is based in Mahwah, NJ in the United States of America and is part of a network of sites including Physician.com, MedicalSchool.org, Disease.com, Counselor.org, Hospital.com, FluWikie.com, and Pathology.org.

There is a section on Speech Disorders.

More to follow on this....probably after we have moved on to our new wordpress blog....

NEW LINK

GRAHAM’S LITTLE CHRISTMAS QUIZ

speakability Lindsey Coleman, Aphasia Projects Assistant , sent us a quiz..............................

1.How does Santa carry his toys?

A)In a suitcase
B)In a Pickfords’ lorry
C)In a sack
D)In a carrier bag

2.In the carol “On the First Day of Christmas” which is the correct line?

A)Eight ladies dancing..
B)Eight swans a-swimming..
C)Eight maids a-milking..
D)Eight lords a-leaping..

3.What is Frosty the Snowman’s nose made of?

A)A carrot
B)A button
C)A piece of coal
D)A Satsuma

4.Which ocean is Christmas Island in?

A)Indian Ocean
B)Pacific Ocean
C)Arctic Ocean
D)Atlantic Ocean



5.Which is the biggest selling Christmas record of all time?

A)Jingle Bells
B)Silent Night
C)So here it is, Merry Christmas!
D)White Christmas

6.What do French children leave by the fire on Christmas Eve?

A)A stocking
B)A pillow-case
C)Their shoes
D)A basket

7.In “A Christmas Carol”, how many ghosts visited Scrooge?

A) 2
B) 3
C) 4
D) 5

8. In the Ukraine, what does it mean if they find a spider’s web in the
house on Christmas Day?

A)Good Luck
B)They will be rich.
C)Bad Luck
D)The maid didn’t clean the house properly on Christmas Eve.

9 What did Tom Smith invent in 1846?

A)Christmas cards
B)Christmas Tree lights
C)Garden Gnomes
D)Christmas Crackers

10 Add Up:
Snow White’s Dwarves
Babes in the Wood
The Little Pigs attacked by the Big Bad Wolf
The number of sparrows who killed Cock Robin?

How many altogether?
A)13
B)15
C)12 D) 14




11.In the song, “I’m dreaming of a White Christmas”, what are the children listening to hear?

A)The church bells ringing in the snow
B)The robins singing in the snow
C)The sleigh bells in the snow
D)Santa belching in the snow.

12.What were the first artificial Christmas Trees made from?

A)Goose Feathers
B)Plastic
C)Chicken Feathers
D)Tin

13. Victoria and Albert enjoyed Christmas. How many children did they
produce?

A)Six
B)Eight
C)Nine
D)Eleven

14. Which of these companies was the first to use Santa Claus in their
advertisements?

A)Pepsi Cola
B)Ovaltine
C)Coca Cola
D)Tizer

15.Who was kissing Santa Claus under the mistletoe?

A)Granny
B)Mommy
C)Gracie Fields
D)‘The Mummy’ from the British Museum


16.In the old favourite Christmas film, “It’s a Wonderful Life” who played the part of George Bailey?

A)James Stewart
B)Bing Crosby
C)Cary Grant
D)The Three Stooges

17 “O Tidings of Comfort and Joy!” is a line from which Christmas
Carol?

A)Deck the Halls
B)Ding Dong Merrily on High
C)The First Nowell
D)God Rest You Merry Gentlemen!

18What was Brenda Lee doing around the Christmas Tree?

A)Skipping
B)Rocking
C)Dancing
D)Hopping

19As carol singers finish, they sing “We wish you a Merry Christmas”.
What sort of dessert do they ask for?

A)Plum Pudding
B)Christmas Pudding
C)Figgy Pudding
D)Spotted Richard.

20When do the Dutch celebrate Christmas?

A)6th December
B)24th December
C)25th December
D)6th January

“THAT’S ALL FOLKS!”

November's meeting

8 members attended --
Bob and Maria will come to the next meeting on Dec 8th from 12 noon for drinks at the Sussex on Hove sea-front.
Roy will do sectary stuff plus money; he will attend a focus group about the internet and get £20 to do so, to be passed on to SASH; (cue for new web-site, see soon...)
Tea was served by Jean;
Tim and Julia did the mailing; (Card to be sent to Gordon)
Claudia told us of her involvement with the hospital trust;
Jeannette got some funds (£180) (horray!) for us;
The international day for the disabled is on 3rd Dec at the Dome.

========================

last night's TV http://www.bbc.co.uk/iplayer/episode/b00nx7n4/Horizon_20092010_Why_Do_We_Talk/

was good..... esp. 12 mins into the start.....

further on next meeting

SASH REMINDER
Hi ,
Just wanted to let you know about the next SASH meeting:

When: 2pm, Tuesday 10th November

Where: St. Richards Community Centre, Egmont Road, Hove

Why: Because only Jean, Roy, Julia & Tim came to the last meeting and we miss you!

What: Tea, biscuits and a chat.

We are running out of funds so no big Christmas Meal this year but we thought we could perhaps meet up for a self- funded drink at least! What do you think?

If you need a taxi and haven't got the taxi phone and account numbers ring Tim on 276695 or email t1mj0nes@yahoo.co.uk

next meeting NOV 10th

next meeting NOV 10th -- usual place and time
All meetings will start at 2pm and will be held at:
St Richards Community Centre
Egmont Road
Hove
If you need a taxi and haven't got the taxi phone and account numbers ring Jeannette on 413759 or email jeannette@gould28.wanadoo.co.uk

AGENDA
WHERE AND WHEN TO MEET, as we are running out of money

next meeting OCT 13TH

next meeting OCT 13TH -- usual place and time
All meetings will start at 2pm and will be held at:

St Richards Community Centre
Egmont Road
Hove

If you need a taxi and haven't got the taxi phone and account numbers ring Jeannette on 413759 or email jeannette@gould28.wanadoo.co.uk.

aphasia now

THIS WEB SITE IS NICE -- I WILL TRY TO ASPIRE TO THIS

Aphasia in the Gruardian

http://www.guardian.co.uk/lifeandstyle/2009/sep/29/aphasia-kevin-howells

extreme access point

i went to the extreme sport WHITE AIR event today.....no disabled access viewing point near to the stage; instead, an exclusive separate area in the recently rename Max Miller's Walk above the prom -- some would say it as joke...



spot the disabled access meeting point sign

CVS Forum AGM

I went to the CVS Forum AGM last night. I could not vote on any motions because our renewal has not been approved yet (they have quartely trustee meetings....)

next meeting SEPT 8TH

next meeting SEPT 8TH -- usual place and time
All meetings will start at 2pm and will be held at:

St Richards Community Centre
Egmont Road
Hove

If you need a taxi and haven't got the taxi phone and account numbers ring Jeannette on 413759 or email jeannette@gould28.wanadoo.co.uk.

other's comments....

Well done, Bruce. For myself, I'm pretty aware of STR...but a lot of people are not and there's no harm in raising awareness, even though it can be alarming.

In my case, it was a blurring in my right eye that would not go away and then thinking the side of my face was going wobbly... which soon passed. If I had not known and seen stroke victims with that droop on one side of the face, then I'd have just shrugged off this odd feeling. Instead I went into A&E ... by which time all symptoms had gone and I was on the point of being told to go home and take it easy except that the doctor decided to put his stethoscope to my neck and heard a bruit on one side (a rushing noise instead of a smooth pulsing).. this was a classic symptom of a clogged artery. And it's the stuff the arteries get clogged with that can drift off and end up blocking the plumbing in the brain and cause strokes ...from minor "odd feeling" ones to major and fatal insults to the brain.

Think I've said enough. Bulletin 2, if anyone wants it, is an account of the operation to open up the artery. Something tells me there needs to be website called Wikichondria.

STROKE: Remember the 1st Three Letters....S.T.R.

AN E-MAIL COLLEAGUE FROM USA SENT ME THIS TO ME RECENTLY: I SAID I WOULD PASS IT ON TO OTHERS AND ALSO SHARE IT WITH SASH MEMBERS.



My nurse friend sent this and encouraged me to post it and spread the word.

I agree.



If everyone can remember something this simple, we could save some folks.

Seriously...



Please read:



STROKE IDENTIFICATION:



During a BBQ, a friend stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics), she said she had just tripped over a brick because of her new shoes.



They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Ingrid went about enjoying herself the rest of the evening



Ingrid's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 pm Ingrid passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Ingrid would be with us today. Some don't die. they end up in a helpless, hopeless condition instead.



It only takes a minute to read this...



A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke...totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.



RECOGNIZING A STROKE



Remember the '3' steps, STR . Read and Learn!



Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.



Now doctors say a bystander can recognize a stroke by asking three simple questions:



S *Ask the individual to SMILE.



T *Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently)

(i.e. It is sunny out today)



R *Ask him or her to RAISE BOTH ARMS.



If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.



New Sign of a Stroke -------- Stick out Your Tongue



Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.



A cardiologist says if everyone who gets this e-mail sends it to 10 people; you can bet that at least one life will be saved.



I have done my part. Have you?

my farago asking questions

Over 6 weeks ago, I asked a public question to highlight the issues of aphasia. The draft minutes have only just been published. Hot constitutional air was exploded; little about Aphasia per se......
this can run and run (hence keeping it on the agenda ect....) if members want it ....


One public question has been received before publication date:

(i) Mr R Pennington.

Minutes:
5.1 Mr Pennington asked the following question at the Committee meeting:

“I ask this question on behalf of Sussex Aphasia Self-Help, and Speakability, the national charity.

Aphasia is the communication problems which sometimes follow a stroke, head injury, brain tumour or other neurological condition.

We know what we want to say, but we just have trouble finding the right words. We can enjoy social activities just like everyone else if communication tools are available.

What steps can the Council, as a Licensing Authority, take to advise coffee shop and café owners to provide such communication tools, such as illustrated/photo hand-held menus?”

5.2 The Chairman responded with the following answer:

“The Council welcomes its general duty to promote disability equality. It also uses its influence with partners to further diversity principals beyond its own operations.


Unfortunately, as a Licensing Authority, the Council is subject to limitations. It can only regulate licensable activities and cafes are only subject to premises licensing if selling alcohol or providing regulated entertainment or late night refreshment. The Council’s decisions must also be grounded on one or more of the licensing objectives.

The Council, as a matter of policy, will remind applicants of the requirements of disability discrimination legislation although there are no powers to provide additional communication tools.

Where citizens feel they have been subject to discrimination in the provision of services, it is recommended that they consider seeking independent legal advice.”


5.3 Mr Pennington asked the following supplementary question:

“If this is the case, could I ask that this question be asked at the Full Council meeting or with the Cabinet?”

5.4 The Solicitor to the Committee referred to the Constitution of Brighton & Hove City Council and stated that the Chief Executive may reject a question if it is substantially the same as a question that has been put at a meeting of the Council, the Cabinet, a Cabinet Member Meeting, a Committee Meeting or a Sub-Committee Meeting in the past six months.

5.5 Councillor Hawkes stated that it was unfortunate that the question could not be asked at another Committee meeting if the Licensing Committee (Licensing Act 2003 Functions) could not give a satisfactory answer.

5.6 Councillor Marsh agreed and fully supported the issues that had been raised by Mr Pennington, which she felt were particularly applicable to licensed premises. She did not believe that the question had been answered satisfactorily by the Council, and warranted further investigation. She stated that the Committee should press the issue forward on behalf of Mr Pennington, and was disappointed that there seemed to be no avenue for this within the Constitution.
5.7 Councillor Watkins agreed and did not feel there was a problem with taking the question to another Committee meeting. He asked if it was possible for the Licensing Committee to refer the matter to Full Council under item 8: Items to go forward to Council. The Solicitor to the Committee advised Members that this provision only applied to items where decisions could be made by the Committee under delegated powers, and did not relate to public questions.
5.8 Councillor Mrs Theobald agreed that this was a matter of great interest and felt that the Council should be encouraging café owners to implement the changes suggested by Mr Pennington, and to provide further help to Aphasia sufferers.
5.9 Councillor Simson stated that as Cabinet Member for Community Affairs, Inclusion and Internal Relations, she had listened with great interest to the question from Mr Pennington, and the feelings of Councillors, and wanted to assure the Committee that she would be taking this issue forward under her portfolio.
5.10 Councillor Pidgeon noted that he had worked for many years to promote equalities issues for disabled and blind people and felt strongly that this issue should be brought to the attention of Cabinet.
5.11 Councillor West believed there was a problem with the procedures if it meant that this issue could not be added to the agenda of any other meeting, and Councillor Marsh agreed, highlighting that there were inadequacies in the Constitution if this was the case. Councillor Marsh felt that a member of the public had asked a valid question in good faith, but had been advised wrongly as to where the question should be asked. She added that it was unfair of the Council to reject the question simply because it had been asked at the Licensing Committee (Licensing Act 2003 Functions) first.
5.12 Councillor Kitcat agreed and stated it was fortunate that the relevant Cabinet Member sat on the Committee and was willing to take the issue forward. He felt it would have been a difficult situation to resolve had the relevant Cabinet Member not been present. Councillor Kitcat noted that the twelve-month review of the Constitution was pending and the issue of public questions and their limitations needed to be looked at carefully under this review.
5.13 The Chairman stated that the issue could be carried forward by Members of the Committee regardless of whether a Cabinet Member was present at the meeting or not, and she felt that given the strength of feeling on the issue, this would be the case in any event

5.14 Councillor Simson assured Members that she would take this issue forward, hopefully in time for the next Cabinet meeting. Mr Pennington suggested amending it to “What steps can the Council, as a Licensing Authority or otherwise, take…”.

5.15 The Solicitor to the Committee apologised to Mr Pennington and stated that the procedures were not meant to be obstructive. She hoped he was confident that the issue would be taken forward in the appropriate manner and dealt with to the satisfaction of Members.

STROKE: VOICES

Voices

Voices is the quarterly newsletter for all members of the Campaigners Network. It gives information on some key campaigning activities and if you would like a free subscription please join the Campaigners Network.

Alternatively you can download copies in the link section of this blog

DATES OF SASH MEETINGS

DATES OF SASH MEETINGS

The next meeting is on Tuesday, August 11th at 2pm.

The dates of all future meetings this year are:

September 8th

October 13th

November 10th

December 8th

All meetings will start at 2pm and will be held at:

St Richards Community Centre
Egmont Road
Hove

PLEASE KEEP THESE DATES CAREFULLY AS THIS INFORMATION WILL NOT BEING SENT OUT IN THE FUTURE!

If you need a taxi and haven't got the taxi phone and account numbers ring Jeannette on 413759 or email jeannette@gould28.wanadoo.co.uk.

HOPE TO SEE YOU AT THE NEXT MEETING!

summer newsletter

‘Thank you’ to all Group Treasurers who have kindly returned their financial information to our Accountant
for inclusion in Speakability’s end of year Accounts 2008/2009.
Affiliated Groups that have not sent details of their finances for last financial year should do so as
soon as possible. It is a legal requirement for those Groups who are formally Affiliated to
Speakability. Please do this so that you are not acting illegally.
I have been greatly impressed with the way that Groups, families, friends and speech therapy teams have
added their support to our SPEAK ABOUT APHASIA MONTH Campaign. I have seen a huge variety of
picture menus and some terrific newspaper reports of your activities. We have also received a number of
cheques towards our new Group Development Fund. Well done and thank you very much!
The postcard campaign will continue to run until the end of March next year and I will keep you
informed of our progress. If you have not yet signed our Petition, you can do so on-line by visiting the
Speakability Website at www.speakabilty.org.uk.
Please can I also take this opportunity to encourage all Groups to consider making a contribution towards
our fund to start new Aphasia Self-Help Groups. This is a voluntary donation which is given where
funds permit and in acknowledgement of help that you received when you were getting started.
As a result of the generosity of some of your Groups, we will soon be launching new Speakability
Aphasia Self-Help Groups in Southend, Plymouth, Southwark & Lambeth and Stratford-on-Avon.
There are many Affiliated Groups who have certainly had our help and support over the years but who
have not yet made a donation to help others. Please do consider whether you can help at one of your
future meetings.
I am also very proud to report that Janet Rockliffe has once again successfully completed the Barrow to
Kendal (40 mile) Walk to raise funds for Speakability. Janet has also become a User Representative on
the UK Stroke Forum Committee. The next Stroke Forum will be held in Glasgow from 1st - 3rd December
2009. If you would like more details and how to get cheap tickets, please contact me on 020 7261 9572.
I took part in a walk recently too – only 12 miles though! This was a Dog & Owner walk through the fields
of Kent. About 30 dogs led the way including my English Springer Spaniel called Scamper. We raised
£300 which will be used to start an Aphasia Self-Help Group in Sevenoaks later this year.
I look forward to meeting more of you as I continue my travels around our marvellous national network of
Groups. Do let me know if you are arranging a special event or activity and please continue to
send in your news.
Finally, please let Lindsey have all contributions for the next edition of GROUP TALK by Friday 23rd
October 2009. You can contact her by phone on 020 7261 9572 or by email:
lindsey@speakability.org.uk.
With all good wishes,
Melanie Derbyshire – Chief Executive of Speakability

latest group talk

THE LASTEST GROUP TALK NEWSLETTER FROM SPEAKABILITY is in their web-site....this is a note from Lindsey

I hope you all enjoyed reading the last edition of GROUP TALK. Thank you very much for your news for the summer edition, which I have attached to this email.
The deadline for the Autumn edition of the newsletter is 23rd October, so please email or post your Group news and photos to reach us by then.
Please also feel free to call us at the central office (020 7261 9572) if you have any queries or would like to tell us your news over the phone.
Best wishes,

Lindsey Coleman
Aphasia Projects Assistant

update to word-press

word-press is a blog with separate pages -- i can run parallel blogs for a while until we choose.....
by the way, a few days ago while i was fiddling with blog, i deleted all the links!!
no worries, i will reinstate them in the new word-press blog...

TED talks about stroking: brain-chatter

http://www.ted.com/speakers/jill_bolte_taylor.html

rather nice talk -- i noticed it on the sunday paper observer july 26th -- the experience of struggling to stop shutting-down and/or releasing into a new world is vividly articulated -- i recall, in the hospital bed, trying to force the speech out from my mouth ---
and where can i get a disarticulated model of the brain like what she used to explain the stroke!!

NEXT MEETING is on Tuesday 14th July at 2.00pm

NEXT MEETING is on Tuesday 14th July at 2.00pm. It will be help as normal at St. Richards Community Centre, Egmont Road, Hove.

AGENDA

1. Decisions have to be made about how the group should be organised from now on. Attached is list of things that have to be done - not all by one or two people but by everyone who could help. Jeannette can no longer run the group for personal reasons and hopes that others will take over. She hopes to editor a Newsletter for people who live with aphasia in the area if we can raise the money and she will still stay in SASH and help out when possible.

2. Then: people with aphasia can tell us about your favourite holiday or the country, county, town that you liked the best. Bring a photo or memento.

PLEASE COME TO THE NEXT MEETING!

Please let Jeannette know whether you can attend or not. If you need a taxi please ring her on 413759 or email her on jeannette@gould28.wanadoo.co.uk

pto
-1Jobs to be done to keep SASH going

1. Maintain records of membership - names, addresses, phone numbers, e-mail addresses, mobile numbers.

2. Think of something to do for each monthly meeting - speakers , conversations etc .

3. Write to members by post or by email telling them the date, time and event. Give my phone number or email addresses so that members can ask for taxis to the meeting.

4. Book taxis for members who ask for one to get to the meeting or event.

5. Make sure there is tea, coffee, sugar, biscuits and milk for the meetings.

6. Try to think of events outside.

7. Make sure the meeting room is booked.

8. If the group is out for lunch/afternoon tea etc get a list of members who attending and book at café or wherever and book transport.

9. Try to thinking of a Christmas occasion - dinner or party etc.

10. Visit locations and see if will work and then ask members whether they can attend.

11. Attend and assist social events.

12. Attend monthly meeting.

13. Take minutes of meetings.

14. Welcome guest speakers and new members.

15. Find and attract volunteers (e.g. through other community groups, the Universities, Speakability Head Office, articles in the Argus etc).

16. Keep things going - discussing other Brighton group, Speakability etc for ideas.

17. Send pictures of group and interesting things the group has done to Speakability Head Office for the national newsletter.

18. Raise money to keep the group going.

CAN YOU DO ANY OF THESE OR ANYTHING TO HELP SASH GOING??

2

Licensing Committee Thursday, 25th June, 2009 3.30pm

This is the Agenda for the Licensing Committee (Licensing Act 2003 Functions)on
Thursday, 25th June, 2009 3.30pm
at which our question will be posed:
http://present.brighton-hove.gov.uk/Published/C00000157/M00001907/AI00009153/$Item5WrittenQuestionfromMembersofthePublic.docA.ps.pdf

Stroke clubs and support groups in East Sussex (extract from Stroke Association web site)

Find out about groups in East Sussex that are affiliated to The Stroke Association, and the names and locations of others that are not.

If you are a member or the organiser of a group that is not shown, please contact the Regional Information Officer on 02380 720423 or email info@stroke.org.uk with the details.

For more information on stroke clubs and support groups contact our Helpline on 0845 3033 100 or email info@stroke.org.uk

Brighton Stroke Club
Meets weekly on Monday afternoons from 2-4pm at Courtney King House, Eastern Road, Brighton, BN2 0AP. The club provides recreational and social activities such as games, crafts and outings.

The Four Deans Stroke Club
Meets weekly on Fridays from 11am-3pm at St Patrick's Church Hall, Broad Green, Woodingdean, Brighton, BN2 6TB. The group provides recreational and social activities such as outings, games and guest speakers, plus some Physiotherapy and Occupational Therapy. Transport can be provided.

Friends of Hove and Portslade Stroke Club
Meets weekly on Fridays from 2-4pm at Bishop Hannington Church Centre, Neville Avenue, Hove, BN3 7NB. The group offers recreational and social activities such as games, crafts, printing and exercises, as well as some Speech Therapy and Physiotherapy. Transport is provided.

Hastings Stroke Association Relatives and Helpers (S.A.R.A.H.)
Meets fortnightly on Wednesdays from 6:30-8:30pm at Isabel Blackman Day Centre, Winding Street, Hastings, TN34 3AT. This group offers recreational and social activities such as guest speakers, talks, games and outings. Some transport is available.

Seaford Stroke and Caring Club
This group meets weekly on Mondays from 2-4pm at St James' Centre, Blatchingham Road, Seaford, BN25 2AB. They offer recreational and social activities such as games, outings, music and quizzes, as well as some Occupational Therapy. Some transport can be provided.

Seaford Hard of Hearing Club
This is not specifically a stroke club, although they will accept members whose hearing has been affected by their stroke. They meet once a month on Friday afternoon from 2-4pm at St James' Clubhouse, Blatchingham Road, Seaford, BN25 2AB. The group enjoys recreational and social activities, guest speakers and entertainers, plus some therapy in the form of lip reading.

hand-held menus on the Licensing Committee meeting 25th June 3 pm

There is the tabled question to the Licensing Committee meeting on the 25th June at 3 pm.  The Licensing Committee is the body which reviews the Statement of Licensing Policy and as such makes recommendations to the Council and has the responsibility for licensing matters.
Incidentally, the rules governing questions by a member of the public requires the presence of that member of the public or a proxy in person, otherwise the Chair’s prepared reply falls of the table, so to speak…..and the right to pose a supplementary is also lost, by default.

I am asking this public question  on behalf of Sussex Aphasia Self-Help, and Speakability, the national charity..

Aphasia is the communication problems which sometimes follow a stroke, head injury, brain tumour or other neurological condition.

We know what we want to say; but we just have trouble finding the right words. We can enjoy social activities just like everyone else if communication tools are available.

What steps can the Council, as a Licensing Authority, take to advise coffee shop and café owners to provide such communication tools, such as illustrated / photo hand-held menus?

Petition

Petition summary and background
Speakability offers support to people with Aphasia, who have communication problems following a stroke, head injury, brain tumour or other neurological condition. People with Aphasia know what they want to say; they just have trouble finding the right words. They can enjoy social activities just like everyone else if communication tools, such as illustrated / photo hand-held menus, are provided by coffee shop and café owners.
Action
We, the undersigned, support the Speakability ‘Speak About Aphasia Month’ Campaign (June 2009) calling on café and coffee shop owners to offer illustrated / photo hand-held menus for their customers.
Return address
Speakability, 1 Royal Street, London, SE1 7LL Telephone: 020 7261 9572 Email: speakability@speakability.org.uk Website: speakability@speakability.org.uk

East Sussex stroke services "stretched"

East Sussex stroke services "stretched"

11:00am Wednesday 18th March 2009

By Siobhan Ryan, Health Reporter »

The care given to people with strokes in East Sussex is inconsistent, with services stretched to capacity, a watchdog report claims.

East Sussex health overview and scrutiny committee has published a review into the stroke services provided across the county.

The report outlines what hospital and rehabilitation care is available at the moment and what improvements should be made.

Almost 1,160 people were asked to take part in a survey for the report.

The results found the experience of patients and carers varied across the county and services were under pressure.

Conclusions highlighted the need for the public to be made more aware of the causes of stroke and to recognise the symptoms.

A recent national awareness campaign was welcomed but the report calls for local primary care trusts to complement it by targeting specific areas of the county.

The report also said GPs and other frontline health and social care professionals need to be more effective at recognising stroke and more training should be provided for them.

Better follow up care is also needed to ensure people get the regular health checks and medicine they need to reduce the risk of further strokes.

The report said: “The elderly profile of the East Sussex population demands that stroke care is treated as a priority and that the county should be at the forefront of best practice.”

The committee will discuss the report at its next meeting tomorrow at County Hall, Lewes, at 10am.

Copies of the agenda can be found at www.eastsussexhealth.org.

Stroke facts

Stroke facts for East Sussex

2:52pm Thursday 19th March 2009 ARGUS

NHS East Sussex Downs and Weald and NHS Hastings and Rother welcome the report by the East Sussex Health and Overview Scrutiny Committee on local stroke services. (The Argus, March 18).

It provides valuable feedback which we can use to further improve the services on offer across the county.

Over 1,500 people in East Sussex suffered a stroke or mini-stroke (known as a TIA) in 2007/08.

Strokes can have a massive impact on the lives of people who suffer them, as well as their families and friends.

We want to give local people world-class stroke services which are co-ordinated, consistent across the county and high-quality.

To this end, we have recently launched our new East Sussex Stroke Strategy aimed at helping people to avoid having a stroke, as well as giving them more support and better treatment if they do suffer one.

This three-year plan has been developed after canvassing the views of patients, carers, members of the public and health and social care staff.

The new strategy will be focusing on ten key areas of development, including: l Raising awareness of stroke among the public, as well as health and social care staff l Preventing more strokes and TIAs by spotting the danger signs earlier, via GPs, for example l Rapid assessment and treatment of strokes and TIAs l High quality specialist rehabilitation l Long-term care and support.

By implementing new plans across the ten key areas, NHS East Sussex Downs and Weald and NHS Hastings and Rother will be able to prevent more strokes and TIAs, help people who have had a stroke to make better recoveries and enable people to receive care and support closer to their own homes.

Sarah Valentine, director of commissioning and primary care
NHS East Sussex Downs & Weald and NHS Hastings & Rother

refreshing the blog

we will be upgrading soon -- hopefully without losing data

books about aphasia

The Man Who Lost His Language by Sheila Hale
Allen Lane, New York, 2002. Hard Cover. . From the DJ: The Man WHo Lost His Language is both a love story and the story of a quest for medical and scientific knowledge about a common but little-understood illness that could attack any of us, as it attacked the author's husband, John Hale, one of the world's leading historians. A month after he finished writing the book that turned out to be his master-piece, Hale suffered a stroke which deprived him of the power to speak or to write. This beautifully, often dramatically, written book conveys with raw honesty the extremes of emotion and behaviour - rage and contentment, desperation and dignity - that affect people disabled by stroke and those who love and care for them. It gives an accessible account of what is known about stroke and what imparied speech tells us about the relationship between language and intelligence - and how much we all communicate without words. Shiela Hale convincingly and grippingly brings together the personal and the universal. The result is a small, unclassifiable masterpiece

extracts SPEAKABILITY GROUP TALK Spring 2009 Edition

BRIGHTON AND HOVE GROUP
The Group is looking forward to the May Fair in Patcham, where
they will be holding a fundraising stall selling cakes and bric-a-brac.
They will also display Speakability leaflets and badges to
raise awareness of Aphasia and the work that we do. During
May, the members will also be visiting Bentley Wildfowl and
Motor Museum, set on a beautiful Sussex estate.

SUSSEX GROUP
In April, the members of the SASH Group welcomed Lindsey Coleman, Speakability’s Aphasia
Projects Assistant, to their meeting. The Group discussed the campaign for this year’s ‘Speak
About Aphasia Month’ and the possibility of holding a coffee morning. Members also brought in
some of their favourite objects, which provoked some lively conversation! Next month, the Group will be meeting in their local garden centre. Just a reminder that Roy Pennington, the Group’s Treasurer, has set up a blog at the following Web address:
http://sussexaphasiaself-help.blogspot.com/

Spring edition of Group Talk

Recent contact from HQ:

Dear Group Members,

It has been lovely speaking to many of you over the last few months and hearing about your upcoming trips and planned fundraising events for ‘Speak About Aphasia Month’.

For all those who have returned their completed ‘Speak About Aphasia Month’ forms, we will be sending out the SAAM pack to you within the next fortnight. This will include leaflets, badges, a press release and petition. If your Group hasn’t yet had a chance to discuss ‘Speak About Aphasia Month’ there is still plenty of time. Your support is hugely appreciated and is so important in making this year’s campaign a success.

Please find attached the Spring edition of Group Talk (see later post, when I can extract it from my e-mail bucket: Blog Ed ), together with a copy of a BOARD GAME kindly provided by the Poole Group.

Paper copies of the newsletter will shortly be sent to all Group Chairs, Secretaries or main contacts. Please accept our apologies for the delay in posting this edition of Group Talk – we have been having problems with our franking machine, but hope to have it sorted very soon!

The deadline for the Summer edition of Group Talk is Friday 17^th July.

Sending you all our very best wishes,

Lindsey

Lindsey Coleman
Aphasia Projects Assistant
Speakability Charity No. 295094 Telephone: 020 7261 9572

Address: 1 Royal Street , London , SE1 7LL
Website: www.speakability.org.uk

May meeting Wyevale Garden Centre at 3pm

On Tuesday 12th May, we will meet in the café at the Wyevale Garden Centre at 3pm for a cup of tea and a cake after you’ve looked at the plants and all the things for the garden - and perhaps before you purchase those plants you picked!
PLEASE RING OR EMAIL JEANNETTE BY 6TH MAY AND LET HER KNOW WHETHER YOU CAN COME OR NOT.
ADDRESS AND EMAIL ADDRESS AT THE END OF THIS LETTER.

APHASIADISIAC event festival

yes, I got to the event last night and discovered it was for tomorrow (i.e. now) -- the body clock gets upset by fake Bank Holidays -- at least it was not the day before --
anyway, it was what is said on the tin: modern ballet with knobs-no, or rather with rubber bricks (two lovers get walled in and out)..........
I was looking forward to seeing how the fractured speech patterns that is aphasia would be symbolised in dance, given that the bit of the brain what gets mashed up effects both speech and mobility: would that be reflected in the dance?
a little bit -- there were occasional references to "no-yes" and other wrong words experiences (the coat put on backwards...) -- otherwise, it traded on the word "aphasia" rather than exploring the reality which is aphasia....

Traffic Penalty Tribunals and Ballet

Ballet, Theatre and Traffic Penalty Tribunals:

I went to the Traffic Penalty Tribunal a few days ago at Brighton Race Course to remind me how disabled-friendly it was (very good, though the wheel-chair loo as a long way away) and the kind of cases they deal with (on one case, the Adjudicator reminded the Council that they have discretion to cancel if mitigating circumstances warrant it -- they agreed to drop it.....) and it was free.
And tonight, I am going to the Ballet about Aphasia (see previously blogged) and it costs £10.
A lot of council and NGO meetings I get to are a bit like theatre and they are free, too.

See
http://www.trafficpenaltytribunal.gov.uk/site/scripts/documents_info.php?categoryID=4126&documentID=132

try sports therapy

Frances tells us of a Sports therapy masseur who is well worth visiting:


mr thomasz nowak
sports therapy/ masseur
16 malvern street
hove bn3 3yr
mobile: 07765698214
tomasz.nowy@hotmail.com
www.physiopointcentre.com

A boards and obstructions on the highway

It will be interesting if the council bite the bullet and outlaw "A" boards and obstructions on the highway in a proper way, such that the disabled do not have to wend their way through chicanes in the pavements in Brighton and Hove......
Improvements to Access on Public Highways Pavements
Licensing Committee (Non Licensing Act 2003 Functions)Friday, 24th April, 2009 3.00pm
BRIGHTON TOWN HALL

Sheila McKechnie Awards

Please find attached information about the 2009 Sheila McKechnie AwardsProgramme and the Social Inclusion Award specifically. The award provides bespoke support to new or emerging campaigners who want to become more effective. The application period is now open until Tuesday 30th June 2009. Application forms and further details about the Social Inclusion award areavailable on our website: http://www.sheilamckechnie.org.uk/showSubSub.php?id=91&page=3&last=117
As you will see from the attached press release, the Social Inclusion award is for campaigners aged 18 and over who are campaigning in this field. We would be grateful if you could help us to spread the word about the award amongst your various networks. Please also find attached a flyer promoting the awards. If you would like hardcopies of the flyer for distribution then please just let us know how many and we will send them on.

Talking About Favorites

Good meeting this week, Talking About Favorites:

a photo taken by Mum of a beach beauty; a bird-lure from Afganistan; a biography-in-progress of Dad.

next meeting APRIL 14th at 2.30pm

SASH April 2009
Please read the dates and the happenings in the next SASH meetings or outings!
1. Next meeting
The next meeting is on 14th April, 2.30pm, at St Richards Community Centre, Egmont Road, Hove.
Bring along an usual, interesting or favourite object and tell us what it means to you. There are often interesting stories behind our favourite things - a family heirloom, a piece of jewellery, a special present etc. Lindsay, from Speakability Head Office, will lead this session.
Lindsay will also tell us about ‘Speak About Aphasia Month’ Campaign 2009 - a campaign to encourage coffee shops to provide handheld picture-based menus. Hear about this and see if SASH can join in.
2. Meeting in May
On Tuesday 12th May, we will meet in the café at the Wyevale Garden Centre at 3pm for a cup of tea and a cake after you’ve looked at the plants and all the things for the garden - and perhaps before you purchase those plants you picked!
PLEASE RING OR EMAIL JEANNETTE BY 6TH MAY AND LET HER KNOW WHETHER YOU CAN COME OR NOT. ADDRESS AND EMAIL ADDRESS AT THE END OF THIS LETTER.
3. Meeting in June
Roy is looking at the possibility of having the afternoon at the Bingo Hall in Kemp Town on Tuesday June 9th. Keep this date in your diary and we’ll let you know as soon as possible!
4 Decisions taken at the AGM
The last SASH meeting in March was the AGM. Jeannette, the chair of the group, and Liz, the volunteer and secretary, stood down. However, there where no takers to take on any positions so Jeannette is still doing some of the work for a while to keep SASH together and Liz is staying on as a ‘social secretary’. Is anyone able to help out, offering any of the jobs that have to be done - like taking over organising the tea and biscuits etc?
Melanie, the Speakability Chief Executive, attended the meeting and told us about the work Speakability is doing. She offered to find a new volunteer for SASH and will help SASH going.
5. If you need a taxi for the meeting in April and/or May please contact Jeannette by ringing 413759 or emailing jeannette@gould28.wanadoo.co.uk.

AGM

REMEMBER TODAY 2.30pm agm etc.

APHASIADISIAC event festival

les ballets C de la B
Aphasiadisiac
corn exchange MAY 6th /7th 8pm
Choreographed by Ted Stoffer
Aphasia - the inability to express or understand thought in spoken or written words.Aphrodisiac - arousing the mood of sexual excitement. - the tongue-tied inarticulacy of love.

Aphasiadisiac..
Devised by choreographer and brilliant former Rambert dancer Ted Stoffer, les ballets C de la B's second Festival performance lifts the lid on the politics and private languages of love. Its impetus is our inability to express its complex and contradictory emotions. Using words, movement, music and physical props Stoffer's quintet of dancers and performers explores this universal experience to a live soundscape composed and performed by the cast itself. In a series of compelling vignettes, they encounter love's less exalted tropes - the illusions, the misconceptions, the denials, the disappointments - yet also the jubilation of true romance.Aphasiadisiac is the slap in the face of love - the stupid, ironic, dangerous things that make it an unfathomable fairytale for grown-ups.

Bad Science with Ben Goldacre

Bad Science with Ben Goldacre
I went to this on Saturday 28th Feb -- very good
Ben Goldacre is a writer, broadcaster and medical doctor from the UK who writes the hard hitting 'Bad Science' column for The Guardian newspaper. This talk exposed the claims of scaremongering journalists, highlight quack health products, get behind the facade of pseudoscientific cosmetics adverts, and laid bare the evil of multinational pharmaceutical corporations, as well as focusing on wider themes such as the medicalisation of everyday life and the psychology of irrational beliefs.
It also promoted his book -- when I got it to sign it, he wrote "pass this on someone who really needs it" or , in fact, "give this book to someone who disagrees with you."

AGM Tues March 10th @ 2.30pm

The next meeting is the Annual General Meeting.
It is held on Tuesday March 10th at 2.30pm and it will meet at St Richards Community Centre, Egmont Road, Hove.
AGENDA
1. Reports: Chair
Secretary
Treasurer
2. Election of committee.
BREAK FOR TEA
3. Future ideas and offers to help the group grow and make more interesting.


Please come to this very important meeting.
If you needs transport please ring Jeannette on 01273 413759 and she will book you a taxi. ALSO, please let her know if you are unable to attend this meeting

Recognise stroke F.A.S.T. advert

Here is the recent advert. mentioned on national news and daily Meridian local TV news.
http://www.nhs.uk/actfast/Pages/recognise.aspx

I just wish I had known these symptoms when I went to my GP about a general un-wellness and right arm numbness. She looked a bit tired to me so I agreed with her to "come back in two week's time" --- a few days later, I was driving at 8am on Sunday morning to a car boot sale in Lewes when I had the stroke. Fortunately I pulled it to a petrol station and sought help.
I was never given a brain scan when I eventually got to the hospital.
People with a suspected stroke should have a brain scan as soon as possible to determine:
If the stroke was caused by a blocked artery or a burst blood vessel. In my case, it was ischaemic, blocked artery in the neck.

Brighton Science -- aphasia and speaking in tongues

http://www.brightonscience.com/
http://www.brightonscience.com/programme/cafe.html
The Frog who Croaked Blue: Synesthesia and the Mixing of the Senses” - with Jamie Ward (University of Sussex) Tuesday 24th Feb- Café Scientifique (7.30pm)

Hanover Community Centre, Southover Street, Brighton BN2 9UD Free. No booking necessary.

I have no idea what this talk will be like nor if aphasia, speaking in tongues and mixed-up senses are linked................
i do know that when i try to add-up loose change I get confused like a rabbit with a hint of garlic...

today's meeting

if you need a cab, we have an a/c with Radio Cabs 204060 -- please phone me 689318 or jennette for the a/c number when booking --

who has seen the recent NHS public information adverts about strokes? I have googled some stuff but i saw news reports yesterday ...

http://www.nhs.uk/Livewell/stroke/Pages/Strokesymptoms.aspx

I watched the Diving Bell last week ...

http://www.youtube.com/watch?v=G69Zh7YIg8c

meeting 10th Feb

SASH
JUST A NOTE:
The next SASH meeting is on Tuesday 10th February, 2.30pm, at St Richards Community Centre, Egmont Road, Hove.
Hope you can come. If you need a taxi ring Jeannette on 01273 413759.


MEETING IN MARCH
The SASH AGM will be held on Tuesday 10th March, 2.30pm at the some premises. We have reports from the officers, to agree on who is to be the officers for the next year, and other business. The agenda will be sent to you before the meeting. PLEASE PUT THAT DATE IN YOUR DIARY!

calendar of meetings 2009

The first SASH meeting in 2009 was on TUESDAY 13TH JANUARY at 2.30pm at ST RICHARDS COMMUNITY CENTRE, EGMONT ROAD, HOVE.
We talked about our festive season and any New Year resolutions, our ideas for meetings to have, speakers to invite, days out, and ways to raise money.
These are the dates for SASH meetings this year 2009:
February 10th
March 10th
April 14th
May 12th - day out?
June 9th - day out?
July 14th
August 11th
September 8th
October 13th
November 10th
December 8th - Christmas celebration?

If you need a taxi to get to the meeting please ring Jeannette 413759 and she will book one for you.

Ink Fish donation

March 26th 2008 approx: the cheque presentation

lobbying the minister

One of our members, Claudia, met Minister Alan Johnson recently and spoke to him about her stroke: she e-mailed me the following message: " I told him I had already have written to the Director Sussex Medical University to set up a course for Speech Therapy in Brighton. I got the response - he will talk to the Vice Chancellor and the Sussex Hospital Director - The meeting was arranged by Nancy Platts, (next MP-in-waiting, Pavilion)"

The photo was taken in April 2007 when I met him in the local election campaign.

try for a grant?

HAPPY YEAR 2009 NEW
===================================================================== I get the Stroke Association mag. They have a £500 grant
available for the individual or
group that produces the best
plan for a local stroke campaign.

The closing date for entry
is 16 January 2009.