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.