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5. Make a life book
Conversations are so much easier when people know who
you really are and what you are interested in. Making a
life book can be a great way of working on communication
skills like writing and talking. It can help you to talk
about yourself and your past - to make relationships with
new people and talk about past experiences with old
friends. Even close friends and family can find it hard to
have and develop conversations, so a book about your life
and important events, people and achievements can be a
starting point for conversations and sharing stories.
Lots of people talked about having but not using com-
munication books they had worked on with the speech
and language therapist. Some people with aphasia and
their relatives described them as boring, childish and
not very helpful in talking about real, everyday topics
and issues. So its important to choose carefully what
you want to put in and what you really like to talk
about with different people.
Beyond Aphasia has a chapter on developing and using
communication books and a chapter on identity and
developing personal portfolios - see Pound, C., Parr, S.,
Lindsay, J. & Woolf, C. (2000) Bicester: Speechmark ISBN
086388 347 9.
MY TOP RESOURCES
1. Put on the brakes
Typically people talk too fast and too much. Everyone
always seems in a rush. This is particularly the case on
hospital wards and in nursing home settings but also
with friends and family. People who remember to slow
down and give you time to think, time to join in and
time to reply are a very, very valuable resource.
Although this seems quite straightforward, many people
find slowing down exceptionally difficult. Tell them how
much slowing down helps and what a difference it
makes - and remind them when they forget.
2. Demand respect
The does he take sugar? syndrome is still alive and
kicking. Being treated as if you were stupid or just plain
ignored is still an everyday experience for people living
with aphasia. You have opinions, interests, ideas and
the ability to be involved. You dont have to put up
with people who shout, who finish your sentences, or
who pretend to understand you.
Treating you as a person and remembering to listen to
you is all it takes to make a huge difference. Silence
really can be golden!
3. Spread the word
Aphasia is hidden and aphasia is complex. People dont
know what it is and they dont know how to react, so
you have to teach them.
There are lots of sources of information to help. The Aphasia
Handbook has information in an easy to use style and there is
a new website along similar lines at www.aphasiahelp.org.
The Stroke Association and Speakability also produce useful
information to tell others what aphasia is.
The Aphasia Handbook by Susie Parr, Carole Pound,
Sally Byng and Bridget Long is published by Connect
Press, ISBN 0953604209. Available for 12.75 inc. p+p
from Ecodistribution, tel/fax 01239 891431.
www.stroke.org.uk www.speakability.org
4. Understand about good days and bad days
Nearly everyone with aphasia has good days and bad
days. People talked about how confusing and frustrating
this can be.
People with aphasia have different ways of dealing with
this - not pushing yourself, leaving the tough jobs and
going shopping, telling people you are having a bad
day, asking for a bit more help than usual, going to
bed. Another important tip is recognising and
remembering when the good days are getting more
frequent and the bad days getting less.
10. Be positive
People with aphasia talked about remembering to cele-
brate your successes no matter how big or small, about
relaxing and having a laugh, about doing things with
friends that you both enjoy. Things may be hard but
remember to go for it! Another side of a positive attitude
is to forgive others and dont hold on to your angry
feelings. Try to forget it and move on - though dont be
afraid to show your feelings either.
And finally, remember there is always room for
improvement. Change doesnt just happen in the first
six months, it can go on for many, many years. Time
and again people gave examples of life and conversation
improving years and years after their stroke - like one
woman who has just got married and found love, happiness
and better conversations 10 years after her stroke.
6. Make aphasia visible
Communication disability is very often invisible. If people
cant see or dont know you have communication
difficulties they wont cut you any slack. When other
people do realise theres something unusual about your
speech, their own embarrassment or fear of getting
stuck may immediately become a further barrier to
good, two-way conversation. So take the initiative and
tell people about your difficulties and what helps you.
Lots of people use credit card size explanations that
they have had a stroke and have aphasia. Some people
rarely get them out but just having them in their wallet
or purse is a way of feeling more secure about explaining
if they do get stuck. Not everyone feels comfortable
about saying they have had a stroke or head injury
because they might then be labelled. But for some, a
Stroke Association or customised card (or set of cards)
about why they have aphasia and what helps them is a
handy way of making the invisible more visible.
7. Be prepared
Dates, times and places are some of the hardest things
to remember and use. Always having a calendar, diary
and maps to hand can help you feel confident that
arrangements have been understood by both parties.
Whats more they are part of every day life for all people,
not something different and unusual or stigmatising.
8. Pick up the phone
Many people with aphasia talked of their difficulties
with and tendency to avoid using the phone. This can
be yet another source of feeling excluded and cut off.
One ingenious solution for people who dont feel confident
enough to talk but who want to be involved is to listen
in on an extension or speakerphone. Other people
talked about using voice activated messages on mobile
phones as a useful alarm system for emergencies -
speaking a single familiar word into the phone will
automatically dial your emergency person. And for others,
using a fax rather than a phone lets them see the number
to dial and to send and receive messages - they keep in
touch without the fluster associated with voice-only calls.
9. Put pen to paper
When other people write things down it can be so
much easier to follow and remember conversations.
People dont naturally do this so you have to tell them
to write it and what exactly is helpful to you - for example
just the key words rather than long sentences. Always
having a pen and pad to hand means that writing just
becomes a natural part of the conversation rather than
a big inconvenience.