People with Aphasia helping each other to become independent, communicate with other Aphasic people and overcome Aphasia together

Jenny Dautlich

This is how stroke affected me..

Jenny Dautlich
...I know what I want to say but find it difficult to formulate sentences, most of all in writing!

I start writing.. the brain cells are firing..

...my thoughts are clear, but I can't find the 'accelerator' to continue thinking at the same speed.

I need time... to make the connections in the brain.

It is a never ending recovery when you are aphasic. Some of my important recovery only got going 3 years after my stroke and I continue improving to this day, more than ten years on!

My Message

Perservere, don't give up, have patience !


  • Enjoy whatever you can do
  • Allow being emotional
  • Have fun! laugh about yourself
  • join an aphasia group near you
  • try dancing and singing!
  • Have a "stroke" card on you, it helps others to have more time for you
  • walk barefoot on grass, for energy from the earth!!

    • My Life before Aphasia struck

    Oct98.Arlesheim
    Before Aphasia, in daily life I took decisions, actions, energy, fun! After 8 years at university and 2 years working in hospitals in my home country Ecuador, I got a grant from the British Council to do a postgraduate course in England. In the end I did three MSc. My dream then was to work at the WHO (world health organisation). I also wanted to have a family. My prayers were heard and I got married within 3 months to a wonderful husband.

    In 1994 I started 5 years training in public health medicine. It was an extremely demanding job, especially as I also had to study to pass two major exams, hopefully leading to Consultant in PHM. It was extra hard as English is my second language.

    I was posted in beautiful York, 200 miles from 'home'. Most weekends I commuted to London to be with my husband. My only 'distractions' during those years were swimming, and dancing to latin music.


    In September 1998 I took a year off work to prepare for major surgery and to re-evaluate my life and my career.

    But first I went to Dornach, Switzerland for six weeks to meet with Doctors from all over the world for a seminar in anthroposophical medicine.

    In December 1998 Aphasia struck ..

    December 1998 - New York

    3 weeks holiday turn into nightmare


    24 hours after arriving in New York my sister takes me by taxi to Montefiore hospital. I know I am seriously ill. The nurse in ER shouts at me to stop fussing, while I suffer a blinding headache and severest chest pain. When she finally takes my blood pressure I have doctors all over me .. Diagnosis: massive myocardial infarct, and I am only 41.. during catherisation (thombolysis) I suffer an ischaemic stroke and I become unresponsive, I am in Coma. Later I am found globally aphasic, right sided paralysed and with visual field defect.

    But, there is always hope!!

    10 days later I start coming out of coma. 2 weeks on: my first two steps. Another one week my first two words: my brother phones .. I hear his voice is 'in my ear'.. he speaks Spanish .. and I reply in English (still with tracheostomy!): “I will”..

    My first 2 years post stroke

    Many different things helped me ..


    I had a diary, an Action Plan - Monday to Friday: OT, going to the garden centre was real fun, speech therapy, singing accompanied by piano, cooking with Maureen, swimming in the rehab pool with my husbands help, Eurythmy (gentle movement), learning to write again, wood work at Wakefield hospital, where I made 2 tables using both hands!

    The kitchen unit doors had photos of family and friends and their names everywhere. If somebody called, my wonderful mentor Maureen pointed to the relevant picture so I would know who was on the phone ..

    PrincessRoyal
    Most of all I enjoyed Pennine Camphill Community: Art therapy, Weaving, Baking bread, and horse-back riding.

    There I met Princes Anne: we had a 'chat', she told me how much she liked my home country, Ecuador, and I suddenly found the words and said You must go again!

    Day-to-Day living with Aphasia


    In the early years I did various courses at our local adult educ. college. I also chaired 'Glos-Speak' aphasia self-help group from 2004-2006.

    At Connect and Speakability I trained 'Conversation Skills'. 'Public Speaking', also did a 'Chairman' workshop, and helped in the initial stages of Cardiff's first self-help group. For some time I provided 1-2-1 aphasia support in our local community which I found very fulfilling.

    Faculty of Public Health Medicine 2005 Conference, Glasgow

    Jenny.DFPH -

    Finally, 7 years post stroke, Prof Rod Griffiths, President of the FPH, congratulating me on being made 'Diplomate Member of the Faculty'. My sincere thanks to Dr Jenny Lisle for encouraging me in my quest!






    September 2007

    User-led 'AphasiaNow' conference
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    Together with my husband and Phil Nossek, a good friend who has aphasia, after just ten months of planning, we launched this ground breaking user-led event, taking place over two days in Cirencester.

    What started in our minds as a local network meeting turned into a fully blown conference, after receiving inquiries from all over the british isles, with near one hundred delegates from every corner of the the UK and Dublin.

    GroupSmiles
    go to the conference ..

    National Health and Social Care Award 2007

    To my great surprise I was one of more than 1000 nominees, from which I was shortlisted to go on to become the Outstanding Achiever of the year 2006.

    Pictured with health minister Patricia Hewitt and Jeremy Vine of the BBC. Scary moment when I had to give my thank-you speech to hundreds of guests.

    Oustanding Award Jen

    NHS article
    NHS award website

    April 2007 - Sept 2008

    Working for ther NHS again.. this time as trainee tutor & assistant co-ordianator in the 'Expert Patient Programme', designed to help people with chronic health conditions.

    It was very challenging going back to work after 8 years away, with no designated support, made worse by insensitive and unhelpful colleagues.

    I was very relieved when my contract came to an end 18 months later!

    Sept 2008 - to date

    AphasiaNow also runs a weekly support group in Gloucester for people with aphasia which I lead; the county has an estimated aphasic population of 3000, with 500 new cases each year.

    Our group works in partnership with 'Glos-Speak' which I co-founded in 2001. We engage fully qualified therapists, volunteers and artists to support the group.

    Members practice everyday communication skills through specific language tasks and various therapeutic activities, such as eurythmy, music, singing and painting, all aimed at stimulating communication.

    September 2009

    RobinTavistockAward2

    I was the happy recipient of the '2009 Robin Tavistock' award! Pictured with Henrietta, The Duchess of Bedford.

    Jenny Dautlich gana premio ..

    full story ..

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    MY LIMITATIONS

  • Reading - remains a slow process, but it's easier with medical stuff, such as the BMJ. Every morning I read the Bible, first Spanish, then English.
  • Writing - remains a great challenge.. I stay clear of it as much as I can..
  • Numeracy. Basic maths is OK and I love Sudoku, it helps!
  • Speaking [in public] & comprehension; much better and stressfree in my mother tongue Spanish. English 1-2-1 is ok. Meetings and group discussions I find very demanding, and I need to fully concentrate. Since our conference in 2007, when I spoke in front of a large audience, I have had various public speaking engagements. I prefer to speak without a script, and although I am always nervous I strangly enjoy it! As part of my work in the NHS EPP programme I co-tutored small groups of people.
  • I like..
  • ..painting, swimming [I always participate in our annual fundraising swim] & snorkelling [in the red sea!], gardening (summer only!), dancing, classical music and salsa! My home country Ecuador, the Stockholm archipelago, Salzburg, Southern France, Basel and Venice [in winter!] are some of the places I love visiting. Sweden appeals to me particularly as people seem to have more time to listen and giving me time to respond, and that includes complete strangers, and they never seem to interrupt! I enjoy chairing and being part of our weekly aphasia group. We help each other, we laugh a lot, and we share!

    • My Tips

    Comprehension, Reading + Numbers


  • Listen to 'SoS' = Ship or Sheep tapes (click Link at bottom of page).

  • Record the radio news or weather report as a listenign exercise.

  • Ask you speech therapist to record difficult words on tape. Listen + repeat at home.

  • If you struggle with numbers ask people to say them one-by-one. Example: instead of saying 2,359 say 2-3-5-9.
    Write down 2 digit numbers: "it costs 20p", "there are 12 months" in a year, "£1.10", £2.20" etc.

  • Reading: read "aloud"! Start with early reading books, gardening, animals etc. Highlight difficult words, then try to remember them and go back regularely if necessary to repeat them.

  • Making meetings less "painful". Ask for the agenda well before the meeting. Take breaks. Drink water regularly, it gives you energy. Always have pen and paper, and clip board if you are single handed. Or a tape recorder. Ask people to look at you when they speak and to avoid jargon.


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