Tag Archives: fun

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TransFatty Lives – a film review

Last Saturday evening I watched TransFatty Lives and was stunned by the unique method of simultaneously telling two stories. The first story is his slow but inevitable descent into total quadriplegia following a diagnosis of ALS and the second is writing a time capsule letter to his son to explain his absence and inability to participate deeply in his son’s life. The film was scattered with amazing images showing POB’s delightful deliberate eccentricity and with scenes both hilarious and disturbing. Some scenes were personally disturbing as I remembered my own experience with that phase of decline. Others were colorful and outrageous in a way only Patrick could make them.

TransFatty Lives is a perfect film for seeing the effects of a fatal diagnosis on a young hedonistic man. As he faces each step of decline he becomes a little more introspective and gains more awareness of the value of the little moments that give life its value. How POB takes the viewer along reveals his genius – you don’t know you have learned something until the next scene begins.

Even more than “The Theory of Everything” or “You’re Not You”, “Transfatty Lives” is the most important film involving ALS. The faithful and honest treatment of both the horror and triumph which is ALS, and the amazingly creative style of POB, makes this a must-see for all PALS and CALS and their families. It should also be widely promoted for all people worldwide. Even for those for whom ALS is just a disease named for some baseball player, this is a wonderful film about human trial, triumph, survival, and love.

This film is amazing to experience. It is much more than a simple documentary. I easily rate this 5 stars, two thumbs up, one poop, etc. Rent or buy this film immediately and have a viewing party.

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Outta Tsai’t!

I would like to give a little blog-love to my [Facebook] friend and a fantastic artist Francis Tsai. I came to know him through the ALS community and very soon became a fan of his art. When I learned he was selling prints online to help finance his care, I purchased a couple.

The first one I purchased was one he did prior to onset called “Trixie”:

This was a gift to a friend who collects pin-ups. My next purchase was a much more recent one called “Horned”, which sports Francis’ motto “Adapt – Survive – Prevail”:

The thing I really enjoy about “Horned” is that it completely (and very literally) illustrates Francis’ motto. Not content with just fading away, he got a computer and some software and created it using only his eyes!

Francis truly exemplifies the willpower of PALS and the clever use of technology to overcome the physical limitations which come with advanced ALS. A person is the result of his/her mind, NOT the physical body. With a little willpower and some appropriate technology, PALS retain purpose and personal productivity and quality of life remains high.

Surf on over to Francis’ DeviantArt and StorEnvy sites (linked in the images above) and check out his art. While you’re there, purchase a couple of prints. The money goes to a worthy cause and they make great gifts!

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Oh, Holy Nerve…

All I Want For Christmas Is My Phrenic Nerve

sung to the tune of:
http://www.youtube.com/watch?v=KyWiiDxbk-A

Everybody pauses and stares at me
My breath is gone as you can see
I don’t know just who to blame for this catastrophe!
But my one wish on Christmas Eve is as plain as it can be!

All I want for Christmas
is my phrenic nerve,
my phrenic nerve,
see my phrenic nerve!

Gee, if I could only
have my phrenic nerve,
then I could wish you
“Merry Christmas.”

It seems so long since I could say,
“Sister Susie sitting on a thistle!”
Gosh oh gee, how happy I’d be,
if I could only whistle (thhhh, thhhh)

All I want for Christmas
is my phrenic nerve,
my phrenic nerve,
see my phrenic nerve.

Gee, if I could only
have my phrenic nerve,
then I could wish you
“Merry Christmas!”

Happy Holidays to PALS around the world!
blue nerve xmas

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Doggone It!

As my readers might know, I have a PEG tube for feeding. I also have a little dog who is more like a 5-year-old in a dog suit. She is quite devious, even having learned how to stomp the foot lever that opens the lid on the trash can.

For the past few months, ever since I stopped using medical formula to correct the diabetic condition it created, I have been giving her a few tablespoons of my meals. Last Friday, I was working on some email while lunch flowed into me. Out of the corner of my eye I noticed some movement and realized it was the rolling stand from which the feeding bag was suspended.

I didn’t feel the earthquake that must be responsible for the stand rocking back and forth and nothing else seemed to be moving (especially my computer which is suspended from the ceiling). A quick mental inventory revealed I wasn’t on any drugs that I was aware of. Motor neuron disease doesn’t involve hallucinations.

I didn’t feel possessed…

Suddenly I felt a tug on the feeding tube and heard the tell-tale clicking of canine toenails on hardwood. That little thieving pooch was chewing the tube trying to get more of the clam chowder I had shared 30 minutes prior! I swear she knew that I couldn’t do anything to stop her. But I also knew that, being 17 years old, she is a little hard of hearing. So rather than ring my call bell which she can hear and knows means trouble for her, I made my computer call in my caregiver on the sly.

Busted doggie!

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Chatterbug

Since I lost the ability to travel and talk, I use Instant Messaging to keep in touch with family and friends all over the world. Everybody seems to have their favorite client, be it MSN, Yahoo, AIM, or Google. Rather than try to force everyone to switch to a client program of my choosing, I installed all of the various programs and created accounts (I did force some to stop using Facebook chat because it doesn’t play nicely with my system). This was fine and dandy, but now my boot load time was obnoxiously long and my computer’s RAM was getting low, leading to performance issues. Luckily I had bumped my system up to 4GB in anticipation of my higher-than-normal demands.

This led me to search for an alternative, where I could combine most or all of my clients into one (“One client to rule them all, one client to find them…”). Prior to disease, most all my computer systems in the house ran Linux. On my personal laptop I used a program called Pidgin which talked to all the major IM services. The Windows port I found a little lacking and probably not a great fit for most users. A friend then suggested Trillian. I installed it, ran through the setup to fill in the login information for my various IM accounts, and launched the application. I was impressed with the sleek interface. All chat sessions are in one tabbed window. The settings are easy to use and customize. And my RAM usage dropped by about half a GB!

Trillian doesn’t support all of the functionality of the native clients such as video/audio chat and sometimes the file transfer isn’t available, but for regular text chat (including the overly-cute emoticons) it works great. If I need the other functions I just pop up the native client and close it when I’m done. To save boot time and RAM I disabled the natives from loading at boot. It also supports a Facebook connection but I found the newsfeed to be annoying; I prefer to leave Facebook on the web browser where it belongs. I would also caution about security: Your IM logins and conversations are not encrypted or secure and possibly subject to inspection by 3rd parties (also quite possible on the natives), so be aware that transmitting sensitive information over this is not advised.

If you are a chatterbug like me, I recommend using Trillian on your AAC computer. I would even recommend it for non-disabled people.

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G-Whiz

Holy dancing cow! Today I was playing with my Google account and finally set up a G-Mail account. I then noticed a “Call Phone” link that connected me to Google Voice. While this isn’t new by any means, since it was free for USA domestic and Canada, I decided to install the web browser add-on. Within a few minutes I was placing phone calls to friends.

Imagine their surprise…

The default setup comes across as “CLIENT_ONLY” which might be ignored by people with Caller-ID (most of my calls went to voicemail at first). So a few more minutes later I had “upgraded” my Google Voice account with a brand new mobile phone number in my desired area-code and linked it to my house land-line so people can call me if I am offline. Calls to my Google Voice number which go to voicemail are placed in an inbox I can access via my Google Voice or email.

The voice quality on both ends was reported to be quite good. Calls were very easy for me to make. I cued up my opening lines so that as soon as the remote end answered I could hit “Speak” on my assisted communication device and identify myself. I had originally intended to use this in emergencies if I couldn’t otherwise alert a caregiver (note that this is NOT suitable for dialing 9-1-1) but after my test calls went so well I decided that I have a “new” communication method for talking to my more patient friends. I had used Skype in the past, but Skype is only free for computer-to-computer calls, not to regular cell or land-line phones.

I was able to do all of this with my eye-tracking system with relative ease. If you have control over your eye-tracking assisted communication device and can install software, I recommend trying this out to see if it works for you.

UPDATE: Configuration instructions are in the Comments section.

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Nerd Factor Five

As an Information Technology professional I tend to accumulate equipment. I have a couple of old laptops lying around (some dating back to 1998). One of the slightly newer ones I connected to my TV via the external SVGA port (with an associated stereo sound cable connected to the headphone jack). Now I can stream Netflix and other online content to my big flatscreen TV while not using up the resources on my communication system. For independence I installed VNC which gives me full control over the remote machine. All I need is someone to power on the laptop and I am up and running.

Currently I am watching live surfing being streamed from Bells Beach, Australia. Think I’ll crack a Foster’s and enjoy!

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Build A Cell

Ever wanted to build your own pet cell piece by piece, feed it and defend it from hazards both external and internal? Well now you can! This engaging little game (built using Flash) entertains and educates simultaneously. While you are building your cell, each component’s function is explained and demonstrated with practical applications. As your cell becomes increasingly more complex, so do the hazards come faster and more dangerous. Keep it fed, keep it producing energy and raw materials for growth and regeneration, and watch out for viruses!

The game teaches you cell biology and mechanics while you play. There is a bit about transpermia as the goal is to build the cell, train it up, and send it to another planet to ensure the survival of a species of rather clever and industrious platypuses…

Note that I have not made it through the end of the game because the action becomes too frenetic for my optical control system to control. My cell gets killed by virus attack. I try not to take it as an omen…