Ch-Ch-Ch-Changes...

This is my last blog post at Friends4Eric.

I have decided to change my home domain to EricValor.org and in the process consolidate the blog directly into the website. The new website allows me to bring a much better website experience to you. Over the year, I expect to add more information content, including a calendar of events such as a calendar of select events and other information of high interest.

Thew new website address is www.ericvalor.org and the direct address to the blog is www.ericvalor.org/erics-blog. I believe I was able to bring all the subscribers over automatically but please excuse any errors and/or hiccups. Although my old domain will redirect to the new, this blog address won't, so please update your bookmarks!

Thank you all for your and I look forward to a few more years of service to you all - until we finally have a cure!

- ENV

Eye Caramba!

I would like to urge all of my readers to immediately visit this Kickstarter project. So much better than potato salad, this device is a revolutionary step forward in personal portable Speech Generating Device (SGD) technology. It's wearable and allows eye contact with your conversation partner while using eyegaze.

DIG THE BEAUTY OF THIS DESIGN:

The keyboard and other controls are displayed right before your eyes. The generated voice comes from the glasses so it appears to come from you, creating a more natural conversation experience. You're outside in bright sunlight? No problem! The glasses come with pop-on shades and because the eye-tracking camera is inside, it's shielded from solar infrared glare. And best of all, the control unit is basically an Android-powered smart phone. This means superior portability and an open-source platform for future app development!

The man behind this innovation, Ivo Vieira, has a history of successful optical technology in satellites (his original company, Luso-Space, has a very exciting mission nearing launch to measure gravity waves with orbiting lasers). His father has ALS and is very disappointed with current eyegaze technology. Furthermore, we have met personally and I am very impressed not only with his development, but with his future plans to increase quality while decreasing costs. I am proud to recommend this project to you all. Please support this Kickstarter and help get the Eyespeak into commercial production ASAP.

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!

Residentiality

Last night (at time of writing) I was treated to a personal guided tour of the Steve Saling ALS Residence in Chelsea, MA. My tour guide, via laptop webcam, was my friend Lisa Jones-Wyhlidko, the dynamo who does such excellent volunteer work for ALS Guardian Angels. She dialed me up using Google Hangout (up to 9 people in a group teleconference - a really wonderful free tool!) and said she was going to walk me around and show off the Residence.

Rescuebook

Technology is extraordinary. The level of communication made possible today by technology is unprecedented. This ability is also available for people with extreme disability (I wrote this purely with eye movement to distribute to the world...).

Tobii Or Not Tobii

As many readers may already know, I am really outraged by the pathetically weak computer systems that underlie the Tobii (and some other systems...). For a device costing $20K one would expect more than a low-power 32-bit CPU and 1-2GB of RAM. The computer hardware would fetch around $500 by itself. Is the software and eyegaze device really worth $19K? Having licensed high-end software for corporate development use in my career, I can comfortably say no.

The Fix-Up

To communicate (and do other things like write this blog) I use a computer set up with a special infrared camera and software which allows me to control the computer with my eye. The hardware platform this system runs on is a very nice little tablet PC from TabletKiosk. I chose the ERICA system from ERT specifically because it was based on this tablet which, even 4 years later, is way more powerful than all other competitors I know save one (and the new i500T easily matches that). Being an Information Technology professional I knew that I would be doing quite a bit more than just typing and talking, and would require the computing power and features of the Sahara Slate PC.

After years of heavy, daily, use, the system started having trouble with the sliding power switch. Sometimes the power light would come on but the system would make no noise and the screen would remain blank (it would fail to POST, for my fellow geeks). My assistant would have to hold the power switch for 5 seconds to turn the machine off and then try again. This frequently resulted in a total hang which required pulling the power cable and battery. Because the machine was mounted and had a docking cradle attached, this required some disassembly to get at the battery. Needless to say, as this problem became more frequent I became more worried that each procedure would result in a fried computer.

I looked up support on the TabletKiosk site and saw that they had a nice little online Forum for questions and user support. I posted a message and also emailed tech support in the hope they would answer (mind you this system is over 3 years old). After some anonymous queries back to me for more information I was contacted by the Director of CorpComm who helped me set up a process by which they shipped me a loaner identical to my system, I popped my hard disk in the loaner, shipped my system back to them for evaluation and repair, and then the reverse. This way I was able to keep my heavily-customized work environment during the couple of weeks required to complete the process.

The problem was with the motherboard, which was replaced. I have my system back and it's as good as new. These TabletKiosk PCs are nice and solid with a great list of features. I would recommend these to all my friends who want a reliable and powerful tablet computer that is Linux-ready (hint hint). TabletKiosk was extremely courteous and supportive and got me through what could have been a total disaster in my life.

I would like to thank by name John Kwan for his patient support and Lisa Herbert for getting the ball rolling and overseeing the process. It's not often that CorpComm meddles with TechSupport without tactical nukes being deployed... I would also like to thank the entire TabletKiosk team for making this able to happen. I very much appreciate their products and support

Nothing Vented Nothing Gained

I have long been an advocate for PALS going on a vent. Many opt out for various reasons, one of which is, surprisingly, discouragement from medical professionals. Horror stories of cost and the difficulty of home care are common. I beg to differ with that. Cost can indeed be an issue but with creative financing and the possibility of obtaining long-term care insurance before formal diagnosis, cost can be managed. In terms of home care, with a few simple rules adhered to, the risks of complications are minimal. Up until now I had only my own experience to use as proof of my contrarian view. It turns out I was correct all along. In a study of over 100 PALS 78 were recommended for tracheotomy. 38 underwent the procedure. Of those, the one-year survival rate was approximately 80% (the same as lung transplant) and only one died from respiratory causes. As the study noted: "Nowadays, starting [home venting] should no longer necessarily be considered as the beginning of the end for these patients. When the appropriate medical resources are in place and the patients wish to continue living, the old mentality of focusing only on palliative care which is still common in the management of this disease must make way for high technology and compassionate care." Vents today are about the size of a grammar school student's backpack and very quiet. Assisted Communication Computers are covered by insurance and Medicare and are very easily converted to general-use Internet-capable computer systems. Web-based social media platforms give unprecedented communication and social access to today's PALS. I have cheated The Reaper for 4 years now and others have for longer. In my view the old bastard can piss off until I am good and ready to go. My quality of life is what I make of it. Technology is my friend and has been for most of my life. As the esteemed Steve Saling says, "Until medicine arrives, technology is the cure." I believe this and urge all PALS to use technology to win the battle against ALS until medicine provides the final victory.

PEACaboo

Last month I wrote about the Steve Saling ALS Residence. Steve recently posted a video about the technology which is a large part of what makes the Residence so wonderful for PALS. Every PALS should demand a Residence in his/her local community.

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.

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.

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!

Another Victory

This is why we do it. Olya in the Ukraine needed a biPAP which she couldn't possibly afford. She contacted ALS Guardian Angels. I chat with the ALSGA coordinator quite frequently, heard the story, and donated my old biPAP. ALSGA shipped it to Poland and Olya's friends got it to her from there. Another PALS given more time alive by cooperation and action within the global PALS family. Although I appear in this story, it is not about me: It is about how we as PALS can change our own lives and the lives of each other. Without the new communications technologies now available (and the ability to use them) this could not have happened. The following is an email trail following receipt of the biPAP and a technical issue resolved. Some of the discussions took place over real-time chat and so aren't shown here. Total time from request to receipt and use was less than a month. -------------------------------------------------------------------------- From: Olya@.ru To: @.com Subject: I want to say thank you Date: Thu, 31 Mar 2011 00:19:27 +0400 Hello, Lisa! I can't wait to share my happiness with you. Today I've used the bipap for an hour or so for the first time and I felt excellent. Much better than without it. I learned how to do settings. I find my mask to be comfortable too. I feel deep relief now. I'm not scared any more not being able to breath normally and sleepless nights are the past. I've attached a picture of me while bipap therapy. Now I'm thinking back and understand that is would not be possible without ALS GuardianAngels, Stu and your priceless help. There were obstacles to ship the bipap and receive it, but you were so patient and sympathetic to me and to all this process. I sometimes can't believe it's true. When I tell people, that an American organisation helped me with the bipap and tell them this story,they say: "It's something unbeliveble, it's really hard to believe that miracles do happen". You can't imagine how much your help means for me and my family. I'm writing this and understand that I can't find right words to express how grateful I am.I also want to tell Eric (the donar) that his donation means '"surviving" for one more PALS (for me). That this is more than a gift! That I will always be grateful to him and never forget it. I want to cry out THANK YOU FOR EVERYTHING YOU ARE DOING FOR PALS! IT'S PRICELESS! Happy Olya 29.03.2011, 17:18, "ALS GuardianAngels" <@.com>:YAY, I am so relieved! Here is the companies contact information: Respironics Inc - 6 reviews - Place page www.respironics.com - 1001 Murry Ridge Drive, Murrysville, PA - (724) 387-5200 From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 15:09:30 +0400 Hello Lisa, It was voltage issue (the user guide info was right). My husband bought another adapter and the bipap works with the new one. Actually, at first we used an adapter too (an American one, as we have American product and it does with the device), but the bipap didn't work with it, but Ukrainian adapter is good.Thank you, Lisa, for your help, anyway. I was really worried. But I still need the contact of a provider in case something goes wrong in future.Model ð 1003986PCA1SN:3074661My phone number +38 095 700-68-67 29.03.2011, 02:25, "ALS GuardianAngels" <@.com>;:Also, please send me the model number and serial number...any other information would be great. A detailed reply about what is happening will also be helpful. Send me your phone number again as well. From: @.com To: olya@.ru Subject: RE: Olya: Mission accomplished! Date: Mon, 28 Mar 2011 18:23:01 -0400 For now, bring it in to your doctor at your appointment...they may have some advice. I'm hoping it's not a voltage issue between US and Ukraine products...we looked into that and we were certain it wouldn't be an issue. I can look for contact info, I already called them to see where the device was originally made (needed that for Customs). I will call them tomorrow as they are closed already today. From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 01:59:47 +0400 Picture is attached. This is what I see on the screen, when trying start the bipap. 29.03.2011, 01:07, "ALS GuardianAngels" <@.com>;:Olya, here is the user guide: http://global.respironics.com/UserGuides/UserGuideBiPAPSynchrony.pdf Let me know if this helps or not. Otherwise, I can definitely ask the Donor if he has any suggestions. From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 00:51:09 +0400 Hello Lisa, We have just tried to start the bipap and failed. It does turn on, but in several seconds long alarm sound and red solid and yewllow solid turn on while system self test. I think we should adress the provider, but we don't have one. Could you advice what to do? 28.03.2011, 17:58, "ALS GuardianAngels" <@.com>;:I just received this wonderful update form Olya! Also, since Olya wished to thank the donor I included him on this message. Olya, his name is Eric Valor...and he's a wonderful man and PALS from Santa Cruz, California. Thank you all, and Olya I look forward to more updates on how you are doing! - LisaFrom: olya@.ru To: @.com Subject: Re: Need help to live with ALS Date: Mon, 28 Mar 2011 16:53:01 +0400 Hello, Lisa! I have news. I've just received the bipap and the mask. I didn't try it yet. I'm going to see a doctor tomorrow and she should do all the settings. But I'm very excited I have the bipap. I will do my best to get accustomed to it. There is a nice surprise. When I opened the box, I found a humidifier there.I can't express how grateful I am to you and Stu and the donor and to all the people who helped me to get it and of course to God, who arranged my meeting ALS GuardianAngels. I'd love to thank the donor who agreed to donate it to me. I hope you can deliver my thanks to him. I am really very very excited. I can't believe everything is done.I will write you how I am doing with the bipap. Olya

Social Media

In the past few months a group of ALS patients (PALS) and caregivers (CALS) have banded together via social media to support each other, spread awareness, educate themselves, and effect real change in their lives. This is more than blog posts and Facebook status updates but rather a concerted and united effort to fill some of the void in the research and treatment of their disease. Using email and messaging, individual projects have combined as a force-multiplier and are already beginning to see results. The ease of using and linking various social media technologies have allowed the infirm to reach out to and engage a global audience in a way and with an impact never before possible. They can do this because they are young, angry, and embrace technology to support and replace lost physical abilities. This movement represents a potential paradigm shift in the way ALS is perceived and dealt with. The list of projects includes (but is certainly not limited to) my project to draft Hugh Laurie to be an ALS spokesman, Thomas Ohlson's Petition to ALSA National, the remarkable and unprecedented ongoing serial documentary following Timothy Lafollette from diagnosis to current time, and the recent various and coordinated efforts to rescue a quadriplegic PALS from an abusive nursing home situation (in which this blog also participated). There are many other projects with various strategies, but all with the goal of increasing awareness, research funding, and support efforts. Where in the past these efforts would be singular, isolated, and have very limited impact, with the use of social media (Facebook, Twitter, blogs, online forums, email and messaging/chat systems) they are now being coordinated and their message distributed all over North America. As the number and scope of projects increase, there can only be a positive effect. If you have or know of a project to increase ALS awareness, please hook up with us via social media!

Wordsmith

Since I am on a vent (tube stuck through neck into trachea, below vocal cords) and can no longer talk, I must throw my voice to another object. I therefore create a new word describing this amazing feat: "Venterloquism" This makes me and other similarly entubed PALS (along with our brothers and sisters in high cervical injury) Venterloquists. This is not to be confused with Ventriloquism which involves the creepy practice of people with Dissociative Identity Disorder manually sodomizing puppets for the purpose of entertainment. Venterloquism involves any of several methods of overcoming a cruel obstacle to communication. Methods include the rudimentary Eyebrow Arch (induce your meatpuppet to say "yes" or "no"), The Ouiji (make your proxy point out letters and phrases on a board), and my personal favorite, The Hawking (making your words emanate from a nearby computer). Advanced and prepared Venterloquists can even use The Hawking to produce their actual voice for certain phrases! Venterloquism is a growing skill set among a diverse population of participants. Please support your local Venterloquist!

Kindle for PC

Back in November of 2009, Amazon released its Kindle for PC software. The program is free and available for Windows 7, XP, and Vista. A future version for Mac is promised. While I have never used a physical Kindle (holding anything but my breath is no longer an option for me), the software appears to recapitulate most of the function of the device. The most important part for me (and for all advanced-stage PALS) is that it behaves very well with my optically-controlled assisted communication system. I use the ERICA from ERT. ERT was recently purchased by Dynavox but the K4PC should still work on that platform as well as the Tobii. Downloading and installing is very simple. Once installed you need to register the "device" to your Amazon account (like the physical Kindle each registered software counts as one of the 5 devices on which you are allowed to share your purchases). If you don't have an Amazon account you will need to set one up (I recommend letting an assistant do the data entry here although I was able to do this myself). For those who already have a Kindle, you should see your previous purchases sync to the software. If this is your only device, new purchases from Amazon will appear within 30 seconds of purchase. Each page has large, easy to read type and the size and spacing can be adjusted for comfort. To either side of the page are white arrows to turn the page. They only appear on mouse-over, and if you click even near them you will hit the target. They are spaced far enough away from the text that accidental page turn is almost impossible. If you close the application with a book open your place is saved automagically. Other bookmarks are easily set. The software is considered beta at the time of writing this post but works very well for me. Updates are automatic but can be set to manual. For software not expressly written for handicapped users it satisfies some important requirements. I am very happy to be reading books again!