This article is how an iBook computer and one-handed trackball helped our family deal with my Dad's stroke and my own 'reef toxin' neurotoxin event. In 1992, I suffered a week in the hospital from 'reef toxin poisoning' that had all the symptoms of a mild stroke but none of the pathology. While attempting to take an antibiotic pill, my throat wouldn't work and I couldn't swallow. Speaking became difficult and I spent a week in the hospital. But it wasn't until my wife brought a 'luggable' PC to the hospital that I could type notes and let folks know what was going on. This inability to talk is called 'aphasia' and is a common side effect from a stroke. Later, Holly let me buy a PowerBook 140, which we still have (and works.)
In February 2006, my Dad suffered a stroke. Thanks to many happy accidents and planning, he was air lifted to the Kansas City Medical Center, a teaching hospital where he had studied and taught pathology. Dad's right-side paralysis and the life support systems made verbal communication nearly impossible. He suffered from severe aphasia.
Initially, Dad was in intensive care. Mom stayed with friends who have Internet access. Within a short period of time, we had two "e-mail" lists: immediate family and extended family and friends.
The immediate family list was my brothers and Mom and we used it to address critical care questions. It was augmented by a weekly conference call between the doctor and ourselves. It's a good idea to shop for this service as it has a per-minute call rate.
The extended family e-mail list keeps relatives and friends informed of developments so they don't have to 'clutter up' the hospital. A key element is having a designated 'editor' who has the good sense to share the news, facts and data of patient progress, while preserving the privacy of the patient and family.
That week, I bought a used, 12" iBook from MacResource and added a wireless card. We had it shipped to Mom, saving sales tax, and she was able to make notes. But connecting to her ISP, Cox, remained a problem since Mom had no experience with wireless networking. Worse, researching wireless hot-spots in Kansas City is no fun from Huntsville.
One USENET poster accused me of 'stealing access' for asking about WiFi services near the hospital. The Kansas City Macintosh User Group had a forum but ignored my request for help. So the next weekend, I drove my Prius to Kansas City to help Mom get online. I don't know the answer but I believe Macintosh User Groups should serve as 'good Samaritans' or at least identify reputable companies who even for a modest fee, can facilitate support for Huntsville visitors.
The KC Medical Center had a well locked down, open, wireless network called "Internet." About all you could do was web access but that was enough for Mom to reach the Web interface for Cox network. I couldn't find the equivalent HiWAAY web interface and outbound 'telnet' and 'ssh' were blocked. But I have a Hotmail, web interface account and we were soon both 'online' in Dad's room:
We did have to ask for an extension cord (plugging into the patient support power systems is a BAD idea.) But at last, Mom could e-mail from Dad's room without having to leave the hospital for a WiFi hot-spot.
Dad was still pretty ill but he recognized Mom and me. But the combination of stroke, feeding tube and oxygen masks made talking all but impossible. His left hand worked but his right side was nearly useless. Worse, Dad never learned to type and with only one good hand, keyboard communications was not an option. He remembered a bit of Morse code but neither of us were skilled enough to use it. But while at a local Microcenter store, I looked for a USB, one-hand operable joy stick and came across a thumb operated, trackball.
Working with Mom's iBook that night, I showed her how to enable "Voice" and use 'stickies' to make a 'click and speak' Macintosh. I had to drive back to Huntsville the next day but Mom showed it to Dad and reported:
". . . but he (Dad) really enjoys playing with that new toy you got him. He was moving the mouse around enough that I had to unplug it so I could play with the computer but he won't give it up yet. It surely keeps him quiet and focused. Thanks. When he gets where he can really use it we will try the notes later."
One of the problems with aphasia is your feelings of helplessness. Your mind is stuck inside a body that isn't working right. Worse, even the most slowly speaking Southerner sounds like a New York Yankee with too much coffee. They think your pauses have ended a sentence while you are just getting the next word . . . doctors in particular often miss this clue. Like dealing with rude people, you get angry. The following is excellent advice from www.aphasia.org (http://www.asha.org/public/speech/disorders/Family-Adjustment-to-Aphasia.htm)
- Involve the person in family decision-making as much as possible.
- Give the person time to talk. Don't speak for him/her.
- Simplify sentence structure, and reduce your own rate of speech.
- Use natural gestures to help the person with aphasia understand you.
- Communicate through touch.
- Acknowledge and verbalize the frustration your loved one feels at not being able to communicate effectively.
- If necessary, make more comments and responses rather than asking questions or making demands.
Computers are perfect for someone with aphasia because they work at patient speed provided there is a usable, human interface. A one-hand operated, trackball and a well designed operating system, the Mac OS, makes this possible. Furthermore, the "Accessibility" panel provides a lot of help including zoom and speaking text.
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