8 Responses

1. iPads for communication

    Have you looked at using technology to help him communicate? More and more people with speech difficulties are using iPads as a form of communication. There are apps that could act just like the flash cards that you are mentioning. The most popular one (though not cheap) is Proloque2Go but there are lots of other cheaper ones out there too. Happy to send you some links if you want. Some may be too childish but there must be some that are appropriate for his age. 

    

   Hope that helps. 

    

   Mel Findlater Gowland

   http://www.melfindlater.wordpress.com

2. Helping with Communication

   May I recommend reading John Dominic Bauby’s wonderful book "The Diving Bell and the Butterfly".  In it, he describes his experience of ‘locked in’ syndrome, which meant he was able only to move his left eyelid.  The speech therapist at the hospital worked out a way of reciting the alphabet out loud to him, and he would blink when she reached the right letter.  He wrote the whole book in this way, and I found it incredibly inspiring.

   I would also suggest that those of us around a person who is having difficulty expressing themselves in words, need to learn enhanced listening skills.  We need to learn to listen with our eyes, hearts, minds and bodies, as well as with our ears.  We do this by practice and making mistakes. Give deep attention to all the ways that your brother communicates through sounds, eyes, movement, posture, and general tone.  I appreciate that while you are anxious for his recovery this might be difficult, but try to help each other stay delighted in your efforts, and hopeful that communication will become easier.

   Best wishes,

   Jeannie

3. Technology

   Mel,

    

   thats a great idea and could be really useful when he’s more mobile.  Sorry, i hadn’t fully explained the extent of his injuries – he’s broken most of his upper body bones, excluding his spine.  This means he can’t use his hands and won’t be able to for another 10-12 weeks.

   I think the software is a brilliant idea and will certainly look into this in more depth.

   Thank you for taking the time to respond, i really appreciate it.

   Many thanks

   Sarah McIlwaine

    

4. Mouthstick with ipad

   Hi Sarah,

   I’m not sure how much he can move his head…but what about a mouthstick to use with an ipad for communication? Example is shown here: http://ramblingmanofals.com/2010/12/20/stylus-socks-mouthstick-for-ipad-2/

   I hope you find a solution that is right for him. If you do use the ipad route, I’d love to hear about it.

   Mel

5. An idea for who to contact.

    Sarah,

   I’m sorry to hear about your brother.

   Whilst no way the same situation but hopefully of some help to you might be one idea I’ve had. Matt Hampson who suffered a devasting  injury playing rugby and now has a tracheotomy, has launched a foundation, primarily aimed at those with spinal injuries, but given the nature of your brother’s current restrictions could it be worth contacting them for help. http://www.matthampsonfoundation.org/

   By the way Matt is an amazingly inspiring person, I’ve met him a couple of times and he is just wonderful.

   Sending you all best wishes for the road to recovery,

   Claire

6. Answer from ENT Consultant

   I’ve passed this on to my husband, who is a specialist in these things…

    I picked up on "…can’t read or write currently". Is this because of physical limitations following the accident, or is it more due to expressive or receptive dysphasia (an inability to understand or communicate verbally following brain injury)? If it’s the dyspahsia thing, then the best chance of good communication is via a speech therapist, who would work alongside the neurological impairment team.

   If the problem is because of physical limitations e.g. arms in plaster casts etc. and failure to vocalise (produce sounds from the voice box) due to the tracheostomy then there are a number of things to ask the nursing staff:

   1. Is the tracheostomy tube cuffed, and if so is the cuff inflated or deflated. A deflated cuff allows air to escape around the tube and exit through the voice box, whereas an inflated cuff prevents this but does allow ventillation support.
   2. If the cuff is deflated, does he wear a speaking valve on the end of the tracheostomy tube? If not why not, as this would increase the amount of air passing through the voice box.
   3. Does he need a cuffed tube at all, would a fenestrated tube be possible. This type of tube permits the maximum amount of air flow through the voice box.
   4. When is the trachestomy tube likely to be removed as it’s almost certainly temporary.

    

   With regard to the flash cards, they are commonly used on stroke wards so should be freely available without you needing to make one specially.

    

   Good luck.

7. other thoughts about communication

   Hello Sarah,

   Please wish your brother a speedy recovery.

   I wonder whether other areas that might possibly help with his frustration could be to get him communicating socially again with his friends – if he can manage the technology, through whatever means, would he be able to get back in touch with friends outside of the hospital via facebook, twitter etc.  There is less expectation to write much and no time constraints on how long it takes to type a tweet.  Again he may find other people out there who are going through similar challenges.

   and can he listen to ‘reading books’ if he can’t read (if his comprehension is unaffected).

   Good luck to all of you.

    

8. Thank you and update

   Hello, i wanted to thank everyone who has replied to this thread.  Your thoughts and ideas have been amazing and very much appreciated.

   As an update my brother has had the trach removed and is now in rehab, he has been told that he will be able to leave to go home in 16 weeks and will have a furthwer 12-18 months of outptient care to get him through to his full recovery.

   Your proactive advice and ideas were really insirational and useful, ibn fact we bought him an iPad to assist with his speech (it’s still very slurred).

   Wishing you all the best for 2012,

    

   Sarah McIlwaine