Communicating in advanced stage

Status
Not open for further replies.
Joined
Mar 16, 2006
Messages
24
Currently Dad is close to advanced stage. He can't use his right hand whatsoever. His left hand is barely functional. Currently he just communicates by moving his fingers on the side of the bed to write one alphabet at a time. But he fear soon that may not be possible either. Needless to say, his speech has been non-existent for quite some time. My question is, what does one do when both hands stop working and no speech? Are there any advanced communication devices available ?
This is really scary and depressing. I can't imagine the helplessness one would feel. It's worse than being in vegitative stage if you can feel everything but cannot express anything. Many times he is in pain (for a plethora of reasons) and all we can see is the grimace in his face. If his hands stop working completely I fear we may not even know if he is in pain. Really, there is no worse disease than this.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
The eyes have it

Somebody else will need to give you details - but most advanced stage people communicate with their eyes.

On a super simple level - you can get a piece of cardboard and write "yes" on the right side and "no" on the left

So by asking him questions and watching where his eyes go (right for yes - left for no) - you can communicate.

I've seen people communicate using such boards split up into more sections.

There are also computer devices that recognize eye movements - and people can type and use speech synthesizers using these devices.

Stephen Hawking has not had the use of his limbs for years - but he puts out papers, gives lectures, writes books...

Good luck.
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
There are also many devices called head pointers. If he still has decent head movement, these are easier to use. I don't know where you live, but if possible, you should see a Speech Therapist. They will be familiar with the many devices, and hopefully, also be familiar with the various funding programs.

Mike
 

TRACY22

Active member
Joined
Jun 5, 2006
Messages
82
Reason
PALS
Country
US
State
WA
City
FEDERAL WAY
Dynavox can help but

Dynavox products can help, but thru Virginia Mason in Seattle, it takes months to go thru the hoops to get one. Medicare will pay up to 80%. I started with trying to get an appointment last july to today the order/billing is messed up. if i can get it, at least i can pass it on to someone with no insurance.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Augmented Communication

Hi,

There are a variety of tools that can be used for individuals to communicate through technology. Both low tech and high tech tools are available. Here is one website that may help.

http://www.asha.org/public/speech/disorders/Augmentative-and-Alternative.htm

This one was at the top of the list when I did a search for the Augmentative Communication Association. Assistive Technology is an advanced field within special education but special education law serves individuals by Federal Law until the age of 21. Michigan law serves individuals until the age of 26 depending on the circumstances. In each case Assistive Technology is prescribed on an individual basis and many things have to be taken into account. Without knowing your circumstances it is difficult to set you up with the best tools. But you can start with some free or low cost material. Everything done for students can be used by adults too, but the resources are less easy to come by. Contact your local education or Intemediate School District or Regional Education System - go to their web pages and see what you can find to be of use to you. Call them. They are not obligated to help adults but there are some great people who can help you or send you to the right resources. I will do some research on this but please do your own searches starting with key words or sites.

Augmentive Communication
Alternative Communication
Special Education
Michigan Rehabilitation
Autism Association
Kurzweil Educational Resources
Readplease.com
Inspiration.com (for pictures to point to) This is a great program for graphic organizers but over 1500 pictures are available to make pictures maps to communicate with- it costs less than $75)

The suggestion for the sign of yes and no is an excellent start. Get a big key ring and put cards with a hole punched on the ring. The cards can have pictures of loved ones, bathroom, favorite foods, etc etc. Several rings could hold categories of cards and your loved one can first pick the categorty like dinner and then food choices. Feelings and other words too. It works very well for kids with autism or severe cognitive impairments who can point but cannot talk. So the eyes have it, but give lots of choices. There is hope for you and others to continue to commumicate for as long as possible.

I am going to use Kurzweil (which is expensive though) and/or readplease, which is free, (see above list) to record my own thoughts that can be read by computer. Also if anyone used Dragon NaturallySpeaking Preferred and has lots of hard drive memory you can set it up so your own voice and written thougts are recorded. (Standard new/3year old computer with the $200 dollar or less program and you can do this before your voice is lost. God Bless you.
 

mlb

Distinguished member
Joined
Jan 3, 2007
Messages
132
Reason
Other
Country
AU
State
Victoria
City
Melbourne
My brother is completely paralysed and can only communicate with his eyes. Therefore to communicate with him, a simple system was devised so that all that care for him are able to use it.

On a thick board, the alphabet is divided into three lines :

1) A B C D E F G H I

2) J K L M N O P Q R

3) S T U V W X Y Z


The person holds the board and asks - looking at George - and points 1st line? 2nd line? third line? He blinks for instance 1st line. You begin to read the alphabet on the 1st line and he blinks at B. You write "B" on a whitebboard and you continue this way until you have the full sentence.

It seems fastedious but it really isn't because pretty soon both George and his carers learn the positioning of the letters by heart and from the first two letters people guess what he wants i.e. SC = scratch FR = fruit, etc...

George is doing well ... he is SMILING for the first time in two years!

Take Care
Anna
 

Citlalli

Member
Joined
May 25, 2007
Messages
26
Reason
CALS
Country
Mexico
State
Morelos
City
Tepoztlan
My husband Andres designed a system he has been using for the last 3 years. He points on a board with a laser stuck on a baseball cap to an alphabet board that has letters and syllables (if someone is interested write and I'll explain further) with some practice he was able to talk incredibly fast with me, we had long wonderful conversations after we thought we would never be able to do so again. Now he only uses it for important things as he is losing ability in his neck but we have set up a wide arrray of signals so he can communicate his needs. 2 blinks is yes and he signals no by moving his head, you have to ask the questions, but we have signs for itch, pain, masssage, lift me up in my chair, move my hands, pee etc etc.

If he has to say something and he is in bed where he can't use his cap we use the board with the same system as mlb's brother using our board.

I have to say Andres has a computer just like stephen Hawkings which we made a huge fundraiser to get, but the board and cap have been much, much more efficient. There are many options you just have to be creative.

A suggestion is to try not to panic when you can't understand your dad and he is not in aposition too use any of the methods mentioned before, (especially if he has pain itch or discomfort) I find it blocks communication, instead try to calm down and connect with him and ask specific yes or no questions and to locate the place in his body where the problem is divide it in sectors like head, torso, legs, and then close in on it. Don't worry about him being incommunicated you will find the best way and also don't be surprised iff you suddenly find yourselves communicating telepathicaly!
 
Status
Not open for further replies.
Top