Thoughts of a husband who's wife has aphasia

Society will bring about change for disabled people only when humanity enters into the conscience.

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".. the barrier making life difficult for people who have aphasia is in the lack of awareness in society..

".. I am always deeply moved by the struggle, frustration and isolation these barriers cause people living with aphasia..

".. absence of conscience has to be overcome: the way in which we see the aphasic person is all-important.."

" .. one alone does not help, but rather he who unites with others at the right time (Wolfgang v Goethe)."

Wilfried Dautlich

Aphasia and I

WW

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My wife, has been aphasic since 1998 through multiple strokes. It was at that point I decided to 'change career' for the opportunity to care for Jenny, learn about aphasia and speech and language therapy (SLT), and thus become the guiding hand in her recovery, and subsequently use my skills to help others.

  • In 2000 I gave the impulse to create Glos-Speak aphasia self-help group. website ..
  • In an effort to help Jenny with her language goals, I sat in on many SLT sessions, initially in New York, and later back home in the UK.
  • My old man was globally aphasic through stroke, as was my nephew Peter through a hit-and-run accident.
  • In 2005 we launched AphasiaNow website with the help of The Tavistock Trust for Aphasia.
  • In 2007 Jenny and I organised the UKs first ever conference by and for people living with aphasia. more ..
  • In 2008 we started AphasiaNow weekly support group in Gloucestershire
  • During 2010/11 we 'embraced' Facebook, Twitter, a Blog and the 'AphasiaNow Forum' in an effort to raise aphasia awareness
  • All this adds up to 5000+ days of 24/7 hands-on aphasia experience

Do I know what it feels like to have aphasia?

Kind of ..

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The nearest I ever get to know 'how it feels to have aphasia' is when communicating in a foreign language (my mother tongue is German, and I speak English & Swedish, and I stutter along in Spanish).

My struggle with trying to understanding Spanish is probably how it feels to have receptive aphasia, and my desperate search for words is somewhat like that of expressive aphasia, I imagine.

The effort to find the words and make myself understood and the intense concentration to comprehend [what is being said] can be very tiring and frustrating, quite often ending in 'who cares', thus being the easy way out.

Of course, I never laugh about [spanish] jokes since I never get them.

Whenever Jenny talks with her family in her mother tongue (Spanish), I try to follow for a while and then .. I just switch off..

Aphasia Barriers -

Can we overcome them?

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I come across aphasia barriers on a regular basis and I am always deeply moved by the struggle, frustration and isolation these barriers cause people living with aphasia.

What barriers? Not enough intensive speech therapy? Lack of emotional support? Health care professionals struggling with the concept of dignity and respect? Lack of access to employment? Or is it we can't afford concern for a fellow human being? 

It is more likely, the actual barrier that makes life exceedingly difficult for people with aphasia, is in the lack of awareness in society

"Absence of conscience" has to be overcome: the way in which we see the aphasic person is all-important

Society's reaction to disabled people in general, is the real reflection of the state it is in: in a society of justice and equality the concern for thy neighbour is paramount, thus allowing that person to be himself / herself. 

However, as long as discussions centre on aphasic people needing state benefits, thus drawing on NHS resources, and aphasic people "giving little in return", the barriers will remain

In a society obsessed with instant communication and measuring everything in performance terms, down grading of people with disabilities is the obvious result

This leads to exclusion, and leaves the person with aphasia fit only for charitable support, and at the mercy of the voluntary sector

I have been very fortunate

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Throughout the years of my aphasia experience I have had help from many people.

Their friendship, sensitivity and empathy was like a shining light in the darkness.

To mention just a few from the early days -

Guido & Gunilla Robert from Toronto, best friends from years ago when we first met in Sweden.

Malcolm, at Wakefield Hospital OT department for outpatients.

Michael Barnell, the anthroposophical art therapist from Shrewsbury, and all the helpful folks at Pennine Camphill Community (read Jenny' story for more..)

Maureen, a spanish teacher from Liverpool, who became Jenny's mentor and tutor during our first difficult year post stroke in Yorkshire. A truly wonderful person!

Sue Gossedge, Pianist from Ackworth, who helped Jenny "find her voice" again through singing. Thank you Sue!

The Dysphasia support group in Leeds

Swiss born Ursula Browning, the curative anthroposophical Eurythmist, who took Jenny under her gentle wings,

Sarah Carter and Jean Lloyd, Jenny's very skillful volunteer tutors.

And then there was the health care staff at Park Attwood Clinic, who proved that humanity, dignity, respect and empathy can and do exist in patient care, and the importance of these qualities in the healing process.

Jenny Merdith, an NHS SaLT of exceptional skill and empathy.

Jenny's patience with me in general, and my poor conversational skills in particular, her gentleness, perseverance and her unwavering faith have helped us both find new life in the face of aphasia.

Through AphasiaNow we want to bring hope and opportunity to people afflicted by aphasia.

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