Tag Archives: assistive communications

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Cyborg With ALS (podcast)

New Blog Format!

Folks Logo

Audio Podcast Here (192kbps MP3 for download).

YouTube video version here.

Hello to my readers, and now listeners. Welcome to my new blog format where I will post the same text and web hyperlinks as always, but now there will be an audio podcast version on my Youtube channel in the new Podcast List. My electronic avatar, which I specifically created to look like me, will “read” the podcast and a link to it will precede the corresponding post. My channel also has various videos related to ALS and a few personal videos from my past. I will also have a lower-bitrate sound file available as a download link on each blog post. My hope is that this format will make my blog easier for people to enjoy. Everyone now can listen to my posts and then later check out the text version and follow the embedded links to learn more.

This post is to announce my latest interview with a new lifestyle magazine called “Folks”. It’s a publication by PillPack, a full-service pharmacy which separates medication into individual doses. This is pretty handy for people who regularly take medication and may have difficulty with prescription adherence, and institutions like nursing homes and hospitals. The publication was launched about 9 months ago and features people living with various medical conditions, refusing to be defined by that condition. I guess that would include me.

I had the good fortune to be contacted by Josh Andrew. He is one of the writers for Folks and he had heard my recent interview by Reply All, a podcast by Gimlet Media. Our interview was conducted over email. Unlike the podcast, I did not need to also send sound files. The link to the Folks article is in the text version of this blog post. Josh was kind enough to assist me with this podcast by answering a few questions about Folks and how they found me, and how the interview was done. The questions I asked were:

  1. Please describe what Folks Magazine is and what it’s all about.
  2. Please describe how you found me and why my story was interesting to Folks Magazine.
  3. What was the interview by email like?
  4. Have you ever done this before?

His answers are in the podcast.

Thanks for listening and/or viewing. Please leave a comment on this blog post and let me know what you think of the new format.

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Cyborg Is As Cyborg Does – Reply All Interview

World’s First Fully-Functional Cyborg

Reply All 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.

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Quora Top Writer Of 2017!

WOW! – Quora Top Writer Of 2017!

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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.

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Reddit AMA Guest Appearance

Reddit Tag-Along

reddit-logo

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.

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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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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!

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!

– ENV

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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:

Eyespeak

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.

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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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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.

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!

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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…).

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.

Technology rocks.