World’s First Fully-Functional Cyborg
I am the world’s first fully-functional cyborg! Need proof? My part in this Reply All podcast starts at 16:35.
This interview took place over about 3 weeks including one live telephone call and approximately 40 questions over email to which I replied both with text and individual MP3 files of the audio of my computer speaking each answer. It was a rather interesting experience and one that would certainly come in handy for any future interviews. Sruthi Pinnamaneni and Rick Kwan did a great job of stitching all of the questions and answers together to make a single coherent interview.
My desire was to demonstrate that life goes on after diagnosis and that there is still PLENTY that someone can still do despite full paralysis and being dependent on a ventilator. Hopefully other more newly-diagnosed PALS listening to the podcast can take a little inspiration to keep living and contributing your individual wonderful gifts to the world. Together, our voices are amplified and we can create the change we want to happen in the world.
WOW! – Quora Top Writer Of 2017!
I just received an email today notifying me that I have been named a Quora Top Writer Of 2017! My contributions are tightly focused in the topic of Amyotrophic Lateral Sclerosis (which I created on Quora) with some attention in the broader topic of Neurodegenerative Diseases, along with a few answers in the topics Science, Physicists, and Stephen Hawking (to give a long-term patient’s perspective on some questions asked about the Professor, including one asking how he fathered children where my answer has 1.4 million views and over 20,000 up-votes – the Quora equivalent of a Like). I have to thank my friend Laura Copeland for introducing me to and getting me involved at Quora. Laura and I met in 2011 when she interviewed me for a story in my local newspaper. She and I remained friends ever since.
Quora is probably the best place to go for answers to questions about anything from science to global social issues and politics to personal hobby interest (maybe I should start a Surfing topic..?). It’s a highly erudite place, especially for a social media site and has astonishingly remained so for many years. Quora is a place where trolls are not tolerated and from which is almost totally free.
I am quite flattered to receive this distinction and am happy that my contributions have been deemed useful for the many people who have read my answers and those who have engaged in enlightening discussions after. It’s been a wonderful experience so far, where I have been able to definitely expand global public awareness of ALS/MND is a positive and engaging way. I am thankful for the opportunity and for the response. I look forward to many more years of engagement and enlightenment.
On Friday, November 18, 2016, I participated in a Reddit AMA as a co-guest in support of my friend, Jef Akst. Earlier this year she published a book titled Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands (available on amazon.com in both Kindle and paperback) about the Oral Sodium Chlorite Project I created along with Rob Tison and Ben Harris, and our journey through the DIY drug experience. Reddit asked her to do an AMA about the book and she asked me to tag along for the session to give the ALS patient perspective and as one of the subjects of the book.
It was my first time ever doing this and it was exhilarating. For two hours, Jef and I were furiously typing away trying to keep up with the deluge of questions. In fact, I am still going back and answering late questions right now. At first I was a little nervous about facing a bunch of trolls and kooks, as the Internet appears full of these days. But the questions were all quality and reflected a desire to actually learn something about the subject.
I am grateful to Jef for writing the book, telling the story of patients driven to find their own solutions to untreatable diseases. And I am extremely grateful to Reddit for giving us this opportunity to share a taste of the experience with others who may have never previously heard of ALS before today. And thank you again, Jef, for inviting me to help her tell the story.
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!
If you are reading this on www.ericvalor.org you are all good…
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!
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.
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!
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.
I was amazed right off the line. The attention to detail giving the place the feel of a regular residential condominium was exquisite. Except for someone coming down the hall in a wheelchair you would never suspect this wasn’t a condo full of young professionals. The common area was the first hint of difference with tables built high enough to roll wheelchairs under. The professional kitchen made me drool. Tucked into the soft and comfortable construction were cleverly concealed safety features such as fire doors which seal off the kitchen in case of accident.
Next up was the first floor with the kosher New York style deli (complete with molded tin ceiling) and bakery. The bakery had a nice outdoor patio for use in the fair seasons. Around here I was introduced to some staff who were a little surprised to be talking to a head in a chat window at 3:30 in the morning. They were absolutely pleasant and friendly and further surprised I was on the West Coast. I love technology.
Next was the hair/nail salon and spa with jacuzzi style tub. You read that right – hair/nail salon with jacuzzi tub! PALS have a right to a hair-fluff and mani-pedi just like everybody else! The salon was pretty standard except perhaps for shampoo bowls being a little higher. The spa had vertical overhead track lifts and the tub tilted up to ease the PALS in, with contours for head and neck support.
This entire tour was done without break with a laptop using standard WiFi connection. The entire building is saturated with WiFi connection, even the outside patios and lawns (which have substructure below the sod to ensure a wheelchair doesn’t get stuck in a bog). Going up and down in elevators was seamless. This is so PALS in power chairs can call elevators and open doors for maximum independence. The PEAC system integrated into the network allows doors and other utilities to be operated by a PALS with an eyegaze system.
Simply put, this place is awesome! Readers who know me know that I despise the over-use of that word in contemporary vernacular, so you know I really mean it. Steve Saling had magnificent vision, and the Chelsea Jewish Foundation was bold and progressive in working with Steve to realize his vision in building the Steve Saling ALS Residence into the Leonard Florence Center for Living. I am proud to support the ALS Residence Initiative and hope to see at least one in every state in the country. Thank you Steve for having vision and the skill and determination to see it realized!
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…).
Part of the explosion of communication technology is the invention of social media. This especially has allowed people like myself who were previously called “shut-ins” to virtually travel around the world and socialize. The benefit has already helped PALS.
Tonight the social media giant Facebook helped save the life of another PALS. I was watching TV with my caretaker when a PALS messaged me on Facebook saying her caretaker wasn’t answering her alarm and asking me to call her house phone to alert the caretaker. I could have called using my web-based Google Phone but asked my caretaker to use my house phone to call. We were one of a few others calling, but in the end the caretaker was alerted and the PALS’ needs were met.
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.
I was recently helping a friend investigate adding more RAM to his Tobii AAC system. It turned out that the system only had one slot for RAM (most others have two, allowing for 2 x 2GB = 4GB maximum in 32-bit computers). This was very disappointing to say the least.
When my friend put it all back together, the Tobii wouldn’t boot. He had to send it back to Tobii for repair. Today he was told a new RAM card would cost $300!
The original part cost less than $50 brand new, and is so old it appears to be no longer manufactured. Suitable replacement parts run an average of $35. $300 is outrageous for installing a 2GB memory board. Essentially, after 100% product mark-up, Tobii is charging over $200/hour for service work with a one hour minimum (the installation procedure is 20 minutes maximum). Geek Squad could do this for $100 with parts included. And you wouldn’t have to ship your unit to Europe.
It’s ridiculous that systems meant to be a person’s sole method of communication in 2012 are produced using technology that belongs in 1999. We have 64-bit computers costing less than $1000 and purely 32-bit operating systems are end of life (meaning that platform is abandoned for development and support). Why are the severely disabled treated as second-class electronic citizens?
Fortunately alternatives exist to Tobii and the other systems using underpowered hardware. I am severely behind in publishing my review of a good one. However, even these alternatives are in the 5-figure price range.
Because of this combination of high price and poor performance, certain groups have taken to developing systems that are not based on a single computer system and which are within the individual purchasing ability of almost every PALS. In the future I will be talking more about these so stay tuned.