Issue 9 December 2010 ...by people with aphasia Aphasia News ...for people with aphasia London Inside... “Fingerprints” 2 Your voice counts! Profile of a person with aphasia What services do people Alex Stirling 2 Lucy Maran with aphasia and their Tripes 3 Farm carers need six months Hello, my 4 name is Tony after a stroke? Sharon Baker’s 5 trip to Cornwall The Connect South East London Aphasia Hub gave their views to Edwyn 6 Collins Katie Marsh and Alice Jenner from Gerald Hartup with Benefits 7 the National Health Service (NHS) Sara, a volunteer, at the South East South London Stroke and Cardiac A letter from 8 London Aphasia Ian Brimble Network Hub One question was ‘Is 6 months after a stroke too early We’re on to do the ‘review’?’ The answer, coming from the the web people with aphasia, was “- 6 months is too soon because www.ukconnect.org you are still ‘mourning’. There should be further reviews – and you can hear after 1 year, 2 years, 5 years.“ Katie said the comments us - follow the were invaluable. ‘icon’ - The Hub decided that a ‘focus group’ was the best way to get more views. Aphasia is a communication Helen Noble was voted in as Chair of the difficulty following a South East London Aphasia Hub. She is the stroke or a brain the first Chair of the five Aphasia Hubs injury which will be put in place over the next year. Registered charity no 1081740 www.ukconnect.org Page 2 Page 2 Issue 7 Alex Stirling - London Centre Manager profile of a person with aphasia I started working at Bojana Šljivić Connect in June as the Bojana had a stroke London Centre about a year ago, at Manager. home. She was born in Serbia (former My job is to support the activities that the Yugoslavia). people with aphasia run here. She came to England in 1956. I love the job, and feel privileged to work Some ten years later, she alongside people with aphasia. married Vojin in Paris. He was a family friend in Serbia and he I am constantly learning from them and came to England to work. Before he retired, he was a from their experiences. University lecturer, in London. They live in Harrow. Before coming to Connect, I worked in NHS and University settings as a Speech Bojana, besides raising her & Language Therapist. family, used to run a ballet school in Putney - classical Russian ballet. She played the Lucy Maran - Volunteer piano as well. She also used to do beautiful embroidery and I have been a volunteer sewing. with Connect since 2006. Bojana has two daughters and I am now a qualified two grandchildren. One Speech and Language daughter lives in Greece and Therapist looking for my the other one, in London. first job. Besides coming to Connect Drop-in, they go to My role at the Editorial Speakability in Harrow, and Group meetings for Aphasia News is to City Lit (aphasia group) once a offer communication support to Colin week. Green. As you can see they are very busy but sometimes they go to I also help out at the Tuesday a concert or ballet conversation group. Page 3 Charles at Tripes Farm Charles George had his stroke two years ago. He was in the office, alone, and he had to wait until next day before they found him - that is 26 hours! Charles His home is near Orpington - called Tripes Farm. He converted the farm to a business. Apart from his home, the outbuildings and barns he made to accommodate different businesses - • warehouse of appliances for bedrooms, kitchens and bathrooms, vintage and antique furniture • auction room • gym • fields for car boot sales, twice a month, between March - October. He is a businessman - C. George and Sons. He has two sons, aged 20 and 16. His family have a vintage car - they very lovingly restored a Wolseley. It was in the family from 1926! They don't drive the car, it’s too precious. The Wolseley - restored Charles likes photography. He comes to Drop-in at Connect. A 'Tripes Farm' delivery van in the 1920s Page 4 Hello, my name is Tony ... I have started attending Connect recently. I attend the “Communications” sessions, the “Drop-in” session and also contributing to Aphasia News. I feel very privileged to attend Connect, which is helping with my communication difficulties. Tony Palluotto I feel that, from the knowledge and experience that I have gained to date, as a member of the charities Headway North London and attend ABI (Acquired Brain Injury), I will be able to share my ideas and story with the other members of Connect. I am very keen on Yoga, which is helping me with my physical difficulties and also using Meditation to provide some relaxation techniques. I have also written a book about my life. I am sure that we will be able to help each other through these challenging times. I also want to thank all the employees of Connect for all the very important work they are doing. I am very much looking forward to attending Connect sessions in the future! Aphasia News gets a mention on Facebook (a “social networking” site for people on computers) Carlos Romero said on Facebook - “Received the latest Aphasia News, Issue 8, and just wanted to say how brilliant it looks. The photos look great and the information is so good!! This place has helped so many people, me being one of them. Just wanted to say thanx and keep up the GREAT work you are doing!!” Page 5 Sharon Baker’s Trip to Cornwall We came to Cornwall to get ideas from Connect Connect Cornwall. It was exciting because the main aim of the Cornish staff trip was to have experience we could take back to Connect in London. Myself and my daughter were warmly welcomed with hot tea and biscuits by • Helen (administrator) • Steve (Cornwall co-ordinator) • Joy (who runs the Befriending scheme) Helen - who provided us with a wealth of information. I am very keen to utilize these ideas in my hometown of Canterbury and to spread the definition of aphasia where I live. The day was rain-swept, but Joy kindly drove us back to the train Steve station, giving points of reference about Redruth. We spent another afternoon viewing Truro Cathedral and the interesting museum. The next day we took the bus to visit the Eden Project, to roam the giant two Biomes - conservatories -ecosystem. Joy Onward to St. Ives to experience the “Mediterranean port” and the beautiful resort. We took a train to Falmouth, as the tourists normally do and caught a boat back to Truro. We had a wonderful experience and a lovely, fact-filled time in Cornwall! Page 6 Edwyn Collins by Ken Cording On a Friday evening in late summer, I was lucky to be invited with my friend Stan Spinks (also a person with aphasia) to attend an evening of Music and Reading at the University College London in Bloomsbury. It was concerning the life and times of Edwyn Collins, his stroke, and how he copes with aphasia. He was the lead singer and songwriter with Orange Juice. The evening started with a reading by Edwyn’s partner, Grace. She explained the stages of Edwyn’s stroke and re- habilitation, the good times and bad! She also told us how Connect was the best help in Edwyn’s recovery. The second part of the evening was a short concert featuring Edwyn. He performed 3 songs of “new” and “old” tunes. After the concert, Edwyn attending a book signing for his book “Falling and Laughing: The Restoration of Edwyn Collins” Edwyn and Grace I invited Edwyn to come for a coffee at the “Drop In” at Connect, which he accepted at a time when he was not too busy. Photographs ... Here are three members of the Photography Group - Alan, Hans, and Bri- an. This is a pub on the north side of the River Thames - but what is the gallows Page 7 Benefits by Basia Grzybowska Many people with aphasia, of working age, can't work. If you're very lucky you have a pension from your employer for health reasons. If not, you have to sign on to get the benefits. That is a big form to fill. Basically they put you in the lowest grade (£65) for 13 weeks. Then they decide that you can work or you can't work at all (high grade £90). The decision is made after the Medical Assessment. The assessment has no relationship to aphasia. The assessment is points based. If you can't speak at all that's all right (15 pts), if they can't understand you when you speak that's all right too (15 pts). This is based on speech as a difficulty with vocal chords and muscles. It has nothing to do with Aphasia. There is no question, or assessment of, for example, • Do you understand when people speak to you? • Talking too fast • Complicated sentences • Can you read, can you write? There is no question or no assessment of, for example, you can't use the phone because communication, for you means, one to one, live. You can't do manual work because your arm and/or leg are both affected, and office work and shop work rely communication skill – talk, read, write and IT. If you have appointment to do the Medical Assessment, make sure that a trained person (volunteer), or maybe speech and language therapist comes with you. I am going to write to Chris Grayling, Minister of State in the Department of Work and Pensions. I hear that he is going to do a review of his Medical Assessment. I am going to say that - • Aphasia doesn’t feature in the Assessment. Aphasia is not motor disability and is not mental disability Chris Grayling • any work requires understanding, talking, reading, writing, and phone/IT • a person with Aphasia needs a speech and language therapist in the room. N Page 8 Aphasia News A letter from Ian Brimble Editorial Group Connect I am a 62-year-old man, who has 16-18 Marshalsea Road London experienced a stroke and aphasia in SE1 1HL December 2005. Phone: 020 7367 0845 Fax: 020 7367 0841 email@example.com Visiting Connect and Different Strokes, I have become concerned about the number of people who have had a stroke and aphasia thinking that they will be all right when the time comes for them to be re-assessed for Incapacity Benefit and Disability Living Allowance. I do not believe that many of us will be 'all right' and that our benefits will be slashed. Basia Am I the only person to fear this outcome, or do other people share my concerns? Colin firstname.lastname@example.org Obituaries Catriona Grant Julie Green Tony 1957-2010 1953-2010 Catriona Grant was a Connect stalwart. Sharon Catriona gave a terrific speech at The October Club at a fund-raising Henrietta dinner at the Savoy for Connect. , the wife of , died of a brain She always said that haemorrhage three “Connect was a lifeline for Ken me!.” She also ran months ago. , with Ken Cording. Julie for She will be sadly missed. She Connect. leaves a partner and two She sadly leaves Colin sons. and four daughters.