an Amyotrophic lateral sclerosis patient's life with using the Assistive aids
At this session, I would like to talk about an introduction of a progressive muscular dystrophy patient's life and an Amyotrophic lateral sclerosis patient's life with using the Assistive aids.
One of the advantages of the computer-based device is its multifunction capability.
About 18 years ago, I made a miniature sized keyboard of a most early word processor in Japan for a C4 level quadriplegic client.
By utilizing this device, the client was able to manipulate the word@processor in a condition that the load to his neck is very few.After five years, I designed the Keyboard and Mouse Emulator for the same client.
This input device, a digitizing pad operated by a mouth stick and a puff & sip switch functions in the same manner as standard mouse operation.
The KB mouse allows him to enjoy drawing just like he used to do as a hobby.His skill of computer graphic had gradually improved and his drawings have been used as covers for a journal.
The same input device enables a young man with progressive muscular dystrophy to communicate with numbers of people through a PC network systems.
After a few months, he became to be bedridden.
And after 1 year, he used an artificial respirator.
Therefore, he lost his voice for a period of time.
A computer network was more and more important for him to communicate to the outside world.According to the progression of his disease, he lay in his back on the bed.
So, he could not manipulate the KB mouse emulator at last.
When he wanted to read some papers, he used to use the over transparent board.
Each time to change the paper, he have to ask to the nurse.We designed for him this reading machine.
The left above shows a computer-based filing system which display was modified so that a laid client could easily see.
This was designed as a mouse operating system. Since my client can not use a mouse due to limited hand function.
I developed a single-switch interface, which can control the system in the same way as mouse operation.I also created a single-switch interface, which can operate the system by changing the combination of number and duration of touching.
This reading aid allows the client to enjoy reading without any assistance.
The only problem of this system is the cost.
It is still quite expensive for a personal use.This figure shows a principle of a single switch mouse emulator, which I designed.
When the client push the switch for a short period, the mouse cursor begin to move to the right direction.
And every time the client pushes the switch for a short period, the direction of the movement of the mouse cursor changes clockwise 90 degrees.
The client is able to push the switch continuously.
When the client push for a long period, the mouse cursor is stopped.The client is also able to manipulate the mouse operation in the combination of a long period and a short period.
As above mentioned, I developed some input methods which is suitable the client' s level of ability or the disease.
In case of the progressive disease, the question is how should we prepare the methods continuously?Next, I would like to introduce a scene of the daily living in the morning of a certain ALS patient.
Mr. Tsushima has been on a respirator for 5 years.
His residual hand function allows him to generate slight movements of his right index finger.
Every morning he wakes up at 6:00.
His wife is still asleep due to the rather previous day's heavy routine required for taking care of him.He turns on the environmental control system by touching the fingertip switch.
Then to watch a 30-minute news program, he turns on the TV and selects the channel by touching the switch several times.When the news is over he turns off the TV and turns to his PC to write a story using a word processor software application.
He keeps working for one hour.
Then he stores the story and turns off the PC.
He turns on the TV again to watch a morning show.
At around 7:30, his wife comes into his room to say "Good morning!"
Some of you might think it would be much easier to ask an attendant to control these appliances, but direct manipulation of these appliances makes Mr. T realize that he can still manage part of his life independently.
This is essential for him to sustain a quality of life. It makes him feel alive and this feeling is the source of his motivation to keep going.
After several months using the word processor, he completed a story about his battle with ALS.Unfortunately his physical function has been declined and he can no longer move his index finger.
So, We provided another input device utilizing his eyebrow movement.
He still keeps his life style by managing some of his daily activities independently.As the client's disease progress more and more, a things to be able to do by oneself become be few.
At the last, the problem is how maintain one's life.
But, as I mentioned till here, by utilizing an appropriate Assistive aids, the client is not impossible to manipulate one's basic life, to play the some recreation and make the creative activity, and participate to the social activities.
In fact, a certain client, he is an ALS patient, he manipulates his camera by puff & sip switch, and he holds a private exhibition of his photo picture.
Many citizens came to his exhibition; he became a member of a society again.That's all.
I would like to close this session.
Thank you very much for your attention.
If you have any questions, please ask me.
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