Tag Archives: soapbox

/** */

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

/** */

Press Release

This is a press release I created to help us get our story of struggle out to the media. Please cut and paste the text below and put your own contact information in the Contact: line then send to your local media with a cover letter explaining your own struggle and advocacy activities. With enough synchronous distributed local coverage we can generate national interest. If you can’t cut and paste then email me and I will send you a copy.

YOU are the story. But together we can create the change we demand.

——–(cut and paste below)————

People with ALS Changing Their Own World

Contact:

Much like the people in the Middle East, people here at home who are subject to another kind of tyranny are using social media such as Facebook, Twitter and Youtube to organize and spread the word about their condition. These people are known as PALS, or Person(s) with ALS.

ALS, commonly known as Lou Gehrig’s Disease after the famous baseball player who died from it, is a progressive and incurable deterioration of the nerves controlling voluntary muscle movement. This leaves the person totally paralyzed and eventually unable to even breathe. Because the expected lifespan from diagnosis rarely exceeds five years, the population of living PALS is low and those living aren’t able to make themselves into public figures.

Until now.

With the advent of social media, as well as the technology of mobile computers with eye-tracking input systems and text-to-speech synthesis, PALS are able to compete on an even footing in cyberspace with more physically capable people. Many of these PALS are in serious medical conditions such as near total paralysis and some on mechanical ventilation via tracheotomy. As the astrophysicist and PALS Stephen Hawking said, “My body may be crippled but my mind is free.”

Unsatisfied with the level of advocacy and awareness generated by organizations with that as their claimed mission, PALS are doing it themselves and placing pressure on those representative organizations to change old operating procedures. Other organizations representing other medical conditions are very vocal and aggressive in public awareness (the foundation of funding and national priority for research) and this new group of PALS demand commensurate action from the organizations representing them.

Examples of the new paradigm are:

• an emergency Facebook movement to transfer one PALS from an abusive institutional care facility to an entirely new fully automated care facility (which was designed by another PALS who was also the first resident)
http://www.govostes.com/blog/?page_id=172
http://www.youtube.com/results?search_query=saling+als+residence+&aq=f

• the “Often Awesome” serial documentary of a PALS’ life with ALS from diagnosis to current time
http://www.youtube.com/results?search_query=often+awesome+&aq=f

• various Facebook groups including a direct petition to the ALS Association
http://www.facebook.com/pages/Petition-Against-ALSA-National/139603146055424?ref=ts

• a movement to draft a Hollywood star as a spokesman
https://www.facebook.com/alsspokesman

• use of the popular video creation site xtranormal.com to craft and distribute their own Public Service Announcement

Facebook as a corporation is aware of this group of PALS and recently invited a few to its Palo Alto, CA, headquarters to take part in a documentary being aired in March, 2011, on MTV. The documentary will be about how various groups have used Facebook to effect change.

/** */

Apollo 13

“Houston, we have a problem.”

Apparently you can’t believe everything you read. Whether it is a problem of vanishing results, reliance on unrepeatable or outdated information, or the fact that not all publications are created equally, there seems to be a serious problem with relying on medical publications. While research papers provide valuable clues, only after those results are repeatedly verified can they reach the status of fact. And even that could change over time as the sample set grows beyond what is practical for a single study.

It seems that even rigorous science can fall prey to the human failing that people see what they want to see. This results in selective reporting as well as selective publication (rarely do negative results get submitted). And in the pharmaceutical industry there is the ever-present threat of monetary corruption. Note that this should not create a panic of Nihilism, but rather instill healthy skepticism and diminish false hope.

/** */

Medical Tourism

It’s been over a month since my last post. A couple of interesting things have come over the transom but nothing really compelling for me to write about. Also I have been busy in other areas.

Something compelling did show up today. An article on Nature Magazine’s website concerning the controversy around stem cell medical tourism and the difficulty in regulation. While stem cells offer tremendous potential, the science necessary to fully and safely exploit that potential is still in its infancy. However, because of the potential, the desperation of people afflicted with horrible disease, and the ability to conjure and proliferate medical buzzwords over the Internet, the unwary and uninformed are preyed upon by the immoral and unscrupulous.

As can be demonstrated by reading my previous entries, I am a firm believer in stem cell technology. I am anxious to participate in one or more procedures in the hope of regaining function. But the science needs a little more time to develop. Anyone offering or advocating a stem cell “therapy” is either lying or deluded. Several clinical trials are underway or will soon commence (some of which I have previously discussed). But for now, I urge the reader to save your money and preserve your health by not succumbing to the siren song of an exotic “miracle cure”.

/** */

911

I need everyone reading these words to take a few minutes to read these words. This has nothing to do with politics. This is a genuine emergency call for another PALS in desperate need. If anyone is in the area I implore you to consider some volunteer work. Contact me for details if you are able to volunteer.

This is shocking and wrong and should be criminal.

/** */

RoIP

Like VoIP (Voice over IP) for phones, the Internet also carries “Radio” over IP. I will be participating in an online radio show, The Global Voice with Susan Piontek. I will be joining ferocious advocate Michele Dupree of Carnival for PALS, Mike Miller, the founder of ROALS, and Mike Shannon of ALS-TDI. The show will air tomorrow, Wednesday, September 1, at 5pm PDT. This may be “today” for those of you who subscribe to this blog via email.

The subject will, of course, be ALS and I will be providing my view of things from the perspective of a PALS. This show will actually be Part 2 of last week’s show which ran out of time as the subject has so many facets. That show is archived online at this link. Because I am on a vent and can’t speak, I have prepared responses to some questions which were provided in advance. My wife, Claire, will read them live and I will edit this post on Thursday to include them (as well as a direct link to the archive). Listen live and either call in with questions or type into the simultaneous web chat. Maybe you’ll hear me do my Stephen Hawking impersonation!

[edit]

The archived version of Part Two can now be found here.

My Q&A transcript follows below:

Q: Tell us about yourself and how ALS has changed your life?
A: At the time of diagnosis I was 36 years old, had a wonderful career in Information Technology and had just taken a position to manage the computer network infrastructure of the US research and development program for an automobile manufacturer. I had a little house on the shore where my wife and I could walk down the hill to celebrate our wedding anniversary by surfing together (also our first dating activity). I had everything I wanted and was extremely happy in my life. Then all of that was removed piece by piece. I am now quadriplegic, we are about to move to my parents’ house, and I require a machine just to breathe. Fortunately the Internet is a great physical equalizer so I can continue my online life somewhat unchanged. Unfortunately, I now have plenty of time for Facebook.

Q: What would you like people to know about ALS; the disease, the current research, the expense?
A:Words will never be able to adequately express the pure horror that is ALS. You can feel pain but not move to avoid it. You can feel hunger and thirst but never consume to slake. Dignity is utterly destroyed. There is no other condition with the same combination of helplessness and misery. There is no risk factor or behavior which brings this curse, and not nearly enough is being done to end it. There are many fine people working to solve this but their work isn’t supported enough and there aren’t enough of them. PALS don’t have time to wait. The technology is recently available to adequately study the problem so the only thing needed is money. As Dr. Stan Appel testified before Congress, “ALS isn’t incurable, it’s underfunded.” The research is beginning to zero in on things that can make truly effective therapies and a few promising clinical trials are just starting or will soon. For the meantime, medicine has gotten quite good at dealing with the symptoms of ALS and Medicare pays for it. However, on the most crucial aspect only half measures are available. While ventilators and supplies are paid for, the people necessary to maintain the equipment, handle alarms, and assist with personal issues are not. Family members, when they exist, are destroyed from the combined physical and emotional strain. The cost for attendants is high and has bankrupted me. PALS can be productive in society with proper support and I am living proof. In addition to other activities I have begun to lobby ALSA to be more aggressive in public education and to persuade Congress to amend Medicare to pay for in-home vent care.

Q: What can people do to help?
A: The easiest way to help is to support an organization like TDI. But that is too passive. Our society likes to write a check, push a button, take a pill, then forget about the initial problem. That level of commitment doesn’t cut it. In _addition_ to a financial contribution, more people need to follow the lead of the 3 Ms and agitate. Write a letter to ALSA demanding national television PSAs with a current A-list celebrity. Write a letter to your Congresscritter demanding changes to Medicare so PALS don’t opt for death in the face of daunting costs (I have a year-long debate going with a friend who is facing ventilation). If you know of someone with ALS, keep that person’s name in the local press. Write to the TV news networks demanding more coverage of this silent crisis. The more people who are aware of ALS, the more demand for a solution results in more action, more funding, and more participation from the industry. And use social media to reach out and coordinate activities. 10 voices are easy to ignore. 10,000 not so much. I and a group of PALS use social media every day to connect and coordinate. The services are free, very easy to set up, and have global reach. I have my blog and a Facebook page to recruit an A-list celebrity. If I can do this, someone with functional hands certainly can.

/** */

Because Someone Has To

A few years ago a report came out claiming some fantastic results involving Lithium’s efficacy in ALS. The paper was published in a respectable journal. However, reaction was surprisingly cool. Because Lithium has been used for years in much higher doses for maintenance of bipolar disorder and was cheap and easy to get, many PALS started their own off-label “trial” which collected valuable data (unfortunately to the contrary of the results of the original study). This first in history patient-driven trial forced multiple professional clinics to stage real, placebo controlled, clinical trials (with results which matched the patient-driven trial).

Recently there has been interest in a natural bile acid which has anti-apoptotic effects, specifically in the mitochondria. There are two companies already in clinical trials with proprietary substances intended for mitochondrial support. Ursodeoxycholic Acid (UDCA) is found to be anti-apoptotic, easily crosses the blood-brain barrier, has an excellent safety profile, and is inexpensive and easy to obtain. A Phase 1 trial was already done which showed excellent safety for ALS patients. A few scattered PALS have been safely using UDCA and some anecdotal reports from S. Korea (using a version with a starch binder) have indicated efficacy. Unfortunately no clinic is interested in performing the trials necessary to fully investigate UDCA.

So I have created the second patient-driven clinical trial intended to provide some good data on the efficacy of UDCA as a treatment for ALS. While not a true clinical trial it should be a decent indicator.

I did this because the risk is low and the potential benefit high. I did this because doing nothing gets you nothing. I did this because someone has to.

/** */

Paradigm Shift

I support ALSA because of their patient services programs. My life would be more difficult without them. But I strongly support ALSTDI because they take an engineering approach to finding a cure. Throughout my life I have learned that the engineering approach is the _only_ way to properly solve a complex technical problem. I encourage you to walk for ALSA but if you want to do more than bandaid a fatal disease, strongly support ALSTDI.

TDI is a paradigm shift in thinking not just about ALS but in addressing the translational research gap for orphan diseases altogether.