Tag Archives: celebrity

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Cyborg With ALS (podcast)

New Blog Format!

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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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Reply All – ALS Reversals

Reply All Podcast – The Reversal

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As many of you may know, Dr. Richard Bedlack has been investigating a very rare phenomenon known as “ALS Reversal” where the normally inevitably fatal disease can stop progressing and even where the patient recovers slightly or nearly fully. Over the past few months Dr. Bedlack has been interviewed for a podcast called “Reply All” (I know the timing because I was also being interviewed for supporting material). The podcast is worth a listen, and you can get read the transcript at the Reply All website.

This is more good exposure for ALS awareness. Thanks to Dr. Bedlack and to Reply All for a great story.

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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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Top 10 Quora Writer

Top 10 Most Viewed Writer On Quora

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Wow! I just stumbled across my full Writer Rankings on Quora (http://www.quora.com). Based on number of views in the last 30 days, I am a “Top 10 Most Viewed Writer” in the following Categories:

  1. Stephen Hawking – #1 with 96,450, #2 has 4,764;
  2. Amyotrophic Lateral Sclerosis – #1 with 86,333, #2 has 194;
  3. Scientists – #2 with 83,523, #1 has 104,262;
  4. Physicists – #2 with 83,290, #1 has 359,824;
  5. Neurological Diseases and Disorders – #3 with 444, #1 has 1,222;
  6. Science – #10 with 83,114, #1 has 234,073.

Also:

  • Neurodegenerative Diseases – #23;
  • Neurology – #31;
  • Charities – #39.

This is very humbling. It’s also quite gratifying to find out that my attempts to share what little knowledge I have gained over the years are deemed useful by others. That’s all I want to do by providing answers on Quora.

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Reddit AMA Guest Appearance

Reddit Tag-Along

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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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A Boost For Joost

“There are two things people take for granted every day: Time and health. When you lose those, then you wake up.”
— Joost van der Westhuizen

In 1994, Nelson Mandela became the first black President of South Africa. That same year, South Africa also hosted the Rugby World Cup. In that tournament, the home team, the Springboks, overcame considerably unfavorable odds and decades of international isolation (due to the government’s policy of apartheid) to win the Rugby World Cup. This is widely considered one of the greatest moments of South African sporting history and was the basis for the 2009 film Invictus. On that team was a young scrum-half named Joost van der Westhuizen.

In 2003 Joost retired from rugby. By then he was a superstar of South African rugby, having more caps than any other South African player. In 2011 the rugby world suffered a blow with the news that Joost had been diagnosed with ALS. Rather than retreat from the world, Joost decided to make a difference in the lives of people also coping with this dread diagnosis. He formed the J9 Foundation to educate the general public and medical practitioners about ALS, grow ALS research in South Africa, and to aid other South African PALS.

Joost’s story has been made into a documentary called “Glory Game“. In addition to the trailer, you can read about the movie here. The film has done well in South Africa and is now going to be shown first in Vancouver, British Columbia, on April 10, 2016 and in Los Angeles, California, on April 15, 2016. I urge all my friends in those areas to go see it. I have seen it and it’s simultaneously hilarious, upsetting, and uplifting. It shows the courage and determination which made Joost van der Westhuizen such a force on the rugby pitch. I am proud to call him and the Director of the film, Odette Schwegler, my friends.

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IceBucket The Blue Sky

The #ALSIceBucketChallenge has been nothing short of a miracle for patients and researchers. Internet memes are rather capricious, having a nearly random hit/miss ratio. That this became so huge is a stroke of incredible luck. The awareness, and resulting increase in donations, has been a huge windfall. This surge couldn’t have come at a better time as researchers now have exquisite investigational tools not available even 5 years ago.

There is then the begged question, “Why did it take a patient and a tractor trailer full of luck to bring awareness to the public?” For decades there have been organizations claiming to represent ALS patients. Yet never has there been a sustained national awareness project executed. Patients were left largely on their own to create awareness. This is a question to which we as patients should demand an answer.

Nevertheless, the windfall is upon us. I believe that this boost in funding should be used to create a critical mass of awareness and outreach. As stated, Internet memes are capricious and subject to fading from the public memory with all the speed and ferocity with which it entered. This is the perfect time to keep the message sustained in the public view. Certainly the money to do so is now available.

Another question the ALS patient community should be asking is how much of the massively increased donations are going to be actually used for research, and in what programs. Some donations are going directly to research facilities but the bulk of them are not. Is that bulk to be hoarded and doled out in tiny slices and without focus to a wide variety of basic research projects, never giving any sufficient amounts to fully complete the work? Or will a significant effort be launched which will fund focused work on high-value pathways, including helping fund clinical trials in humans (there are a few promising treatments languishing for lack of funding to pay clinics to conduct Phase 2-3 trials).

This is the time for organizations representing the ALS patient community to step up. The shelf-life of popular public awareness is notoriously short. We need to take this opportunity to create a program of sustained awareness and lobbying for research funding, along with a focused research effort encompassing basic research through to human trials. It is also the time for all research and advocacy organizations to come together as a united front in order to make ALS nothing more than an unpleasant memory.

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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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PSAwesome

On Monday of last week, this excellent PSA was released by Team Gleason. It was shown on the big screens inside the Superdome but needs to be shown repeatedly on major network television (ie ABC/CBS/NBC). Please watch, share with friends, and send to your local network television stations. This is the kind of message that needs to get in front of the eyeballs of America. This is the celebrity action we have been asking for. Now let’s do our part in getting it out there.

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Advocate

Autism, Breast Cancer, Parkinson’s, etc. all have internationally-recognized A-List celebrities advocating for them. As a consequence they have high public profiles with commensurate research funding levels. It is time that ALS joined the club.

Hugh Laurie (Dr. House, among many other roles) would be a perfect spokesman for ALS because he has personal knowledge of its effects. If Betty White can be “drafted” to host Saturday Night Live by a Facebook page, perhaps Hugh Laurie can be drafted to be a spokesman for ALS.