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Jenny Dautlich (co founder and chairperson)

This is how aphasia affects me..

Jenny.NewZ.2011


...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!

My Message

Perservere, never-ever give up, have patience !

Never ever give up
  • Try to enjoy - whatever you can do
  • Allow being emotional
  • Have fun! laugh about yourself
  • join a Speakability aphasia support 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!!

Try "my" complementary [aphasia] therapies; hopefully you can find some therapist near you just click the 'pdf' file ..

Life before Aphasia


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. 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. It was an extremely demanding job, especially as I also had to study to pass two major exams, hopefully leading to Consultant in PH. 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.

Oct98.Arlesheim
In September 1998 I took a year off work to prepare for major surgery and to re-evaluate my life and career.

But first I went to Switzerland for a seminar in anthroposophic medicine.

2 weeks later 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 crushing 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 thombolysis I suffer multiple ischaemic strokes 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!!

2 weeks later I start coming out of coma. another 2 weeks .. my first steps. And then my first two words: my brother calls from England .. I hear his voice is 'in my ear'.. he spoke Spanish .. and I replied in English (still with tracheostomy!): "I will"..

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 husband's help, Eurythmy (gentle movement), learning to write again, wood work at Wakefield hospital, where I made 2 small tables and a bird house, using both hands (the right one strapped to the tool!).

My husband covered the kitchen cabinet doors with photos of family and friends and their names. If somebody called, my wonderful mentor Maureen pointed to the relevant picture & name so I would know who was on the phone ..

PrincessRoyal Most of all I enjoyed Pennine Camphill Community, doing Art therapy, Weaving, baking bread, and riding-for-the-disabled.

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

The last ten years ..

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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.

I trained conversation skills, public speaking, and did a 'chairman' workshop; I was also asked to help at Cardiff's first Speakability self-help group.

1.JAD.Befriending

As part of AphasiaNow outreach programme I did some befriending in our local community which I found very fulfilling.

In 2009 I initiated the since annual AphasiaNow fundraising "Swim-4-Words".

Faculty of Public Health Conference (2005)

Jenny.DFPH

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7 years posts stroke .. Professor 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!

National Health and Social Care Award

Outstanding Achiever of the year 2006

Oustanding Award JenNHS.Award

I was one of some 1000 nominees shortlisted to go on to become the Outstanding Achiever of the year 2006.

With Patricia Hewitt, Secretary of State for Health & Jeremy Vine of the BBC.

Scary moment when I gave my thank-you speech to hundreds of guests!!

Ground breaking peer led Aphasia Conference (2007)

A first for the UK

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GroupSmiles

Together with my husband and Phil Nossek, a good friend who has aphasia, and several volunteers, after just 10 months of planning, we launched the UK's first ever user-led Aphasia conference in Cirencester.

What had started out as a local Aphasia network meeting turned into a two day fully blown Aphasia seminar.

Some eighty delegates from every corner of the the UK and Ireland had the opportunity to try their hands [and voices] on Painting, Raku pottery, Aphasia therapy software, Eurythmy, Reflexology, IT and Singing.

Working again 2007

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

"It was very challenging for Jenny going back to work after 8 years away, with no real support from her employer, made worse by insensitive and unhelpful managers and colleagues" (third party comments).

I was very relieved when my contract came to an end.

The 2009 Robin Tavistock Award

2009RobinTavistockAward1

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Henrietta, Duchess of Bedford, presented the award to me at the British Aphasiology Society Biennial International Conference in Sheffield.

"Jenny’s determination and single mindedness has achieved so much in such a short space of time, both personally and for so many. She is an inspiration to many people and so deserved this award".

Chairing weekly support group

2008 - to date

1.Bristol.2015.Grp.Foto

AphasiaNow also runs a weekly support group in Gloucester for people with aphasia which I chair; we engage 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.

We work in partnership with 'Glos-Speak' self-help group which I co-founded in 2001.

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 do enjoy it! As part of my work in the NHS EPP programme I co-tutored small groups of people.
  • I like painting, swimming & snorkelling, gardening, dancing, classical music and salsa, visiting my father in Ecuador, and travelling in general.
  • Sweden appeals to me particularly as people take time time to listen and giving me time to respond, and that includes complete strangers, and they never interrupt!
  • I enjoy chairing and being part of our weekly aphasia group. We help each other, we laugh a lot, and we share!

.click here for more about our annual 'Swim4Words'

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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.

  • 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.

My volunteering

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Gloucester Speakablity 2001 - 2007

I co-founded this self-help group and was a committee member throughout.

AphasiaNow 2008 - ongoing

I chair this weekly support group. More .. here

Connect 2012/2013

I was a Befriender. It took Connect for ever to get me a Befriendee. In the two years I ever only had two, and lots and lots of meetings and paperwork to read. The initial local co-ordinator had little idea what Aphasia meant and even less how to support us, the Befrienders.

Independece Trust 2014/2015

I underwent countless hours of training and hundreds of pages of policies.

It took the trust twelve month to find me my first "client". I was able to introduce her to new opportunities and help, such as Stroud food bank, the library and more. I never had a word of thanks from the trust but was asked to fill yet more, this time feedback, forms. So I resigned.

Age UK 2015 - ongoing

Since the initial short training I have been able to work as a "Home from Hospital" volunteer. So far I have had three clients, every time followed up with an appreciative letter from Age UK.

I feel valued and love working for this organisation!

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