The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

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Saturday, December 06, 2014

Walk With Me a Bit...Let's Talk.

Until Friday, it wasn't a big deal.

Surgery that is. I knew it was going to happen but until yesterday, I couldn't put my finger on a calendar and show you that date. It was just a fuzzy, non-specific thing. Something that was to be scratched off a to-do list. It wasn't a big deal. I assigned it little relevance...just something I needed to do and move on.

But it is a big deal.

On January 16th, I will be admitted to Seton Medical Center in Austin Texas. On that day, Doctor and ENT Surgeon Peter Scholl will cure my cancer. He will do so by removing my larynx, possibly my thyroid and every lymph node in the general vicinity. We didn't come to this decision lightly. The cancer that seemed to be in remission since February 2012 has now begun a counter-offensive to reclaim that territory.

I'm not going to let that happen. I've come too far, I've made long-term plans to help Reglue reach out to even more kids than previously scheduled. I don't have time to dally around with this cancer and the recovery any longer than necessary. But most importantly, I am Diane's caregiver. I have to be here.

I can put a thin veneer of protectant around that attitude and hold onto it, but the fact remains...

Things will never really be the same. I won't be able to eat like you...not for the first couple of months. I will undergo an extensive rehabilitation therapy. I will have to re-learn how to breathe, eat and talk. Until I can do that, I will receive nutrition via a feeding tube. But the biggest thing...the thing that is most important to me?

How I will communicate with people. I talk to dozens of people a week. Many of
them on the phone. My options here are few. There is one procedure that might let me speak close to the way I talk now. Unfortunately that will not work for me. Other issues with this surgery scratches that from my options list. There are text to speech options that can help and I will rely upon that technology to make it happen. But that other thing?

Yeah, I'm not going to be that guy.

That guy that holds a battery-powered device to his throat to talk. The device that translates the vibrations at the throat into a harsh, robotic voice. When I was 11 years old, I was in a pool hall with my oldest brother and the guy that worked the counter and cash register used one of those and he scared the hell out of me. What I find most disappointing is that the technology used 50 years ago hasn't improved much at all. Not for that device anyway.

I'm not gonna be that guy. Ever. I'd rather walk away from everything to avoid burning that image and sound into a child's head.

I've been working the past two weeks to find a Linux solution that might work for me...a way to translate text to speech. It's been a nightmare. I don't want to insult anyone or damage any feelings, but apps such as Festival just are not ready for prime time.

I'm not going to go into all the issues again. I made these statements on my G+ account. Some of the most techie folks I know admitted they had given up on making Festival and Espeak/Gspeak work. And no...I don't want to wrap an app with a distro that uses it out of the box. Even those apps are shaky at best, at least when it comes to text to speech. Besides, I am going to have to be able to use this speech method on the fly. Having it housed in a complete operating system will just produce way too much overhead.

So will I return to work at Reglue? I most certainly will but I need to get this behind me so I can see what I have left to work with. The one thing I just won't do is worry about money. A full third of what I do is fund raising. It's arduous to say the least and I despise doing it. But as in all endeavours...Reglue skids are greased by cash. As much as I wish that wasn't so, it is. We are in our last week of our annual fund raiser so if you want to go by the site and look at some of the new and reduced-priced perks, I'd appreciate it. We are barely over 50% of our goal with a week to go.

Because after all the smoke clears, it's obvious that without you, we wouldn't exist.

Good friend and old Army buddy Gene Molden mentioned that if my keynote was my last speaking engagement, then I went out on top. It was a lot of fun to give.

And with that, I will leave you. I'm sure I will post here again before I am admitted to the hospital but I want to make sure to tell you to enjoy the holiday season and be good to each other. And one way or the other....

I'll talk to you soon.

All-Righty Then.


Nz17 said...

Helios, have you tried Mary TTS? It is Free, open source text to speech software.

Garry Knight said...

Those things you hold to your throat scared me, too. Maybe you could look into someone making some kind of talkbox similar to the ones musicians use. They sound far, far nicer. I wish you well with the surgery.

Marie Flutterby said...

Awwww geez I wish for a speedy recovery. =0)

Anonymous said...

First of all best wishes that your surgery and recovery go better than planned! I had medical problems that resulted in me spending most of the spring and summer in the local hospital. So I have a small idea of what you have gone through, and will be going through. All surgery is serious. Have you contacted the National Federation of the Blind (NFB)? Blind folks work with text to speech technologies every day, so may have at least an idea for you. You have face your medical problems with courage and dignity. Continue to do so, and you will find the answers that you seek!

Nz17 said...

Hey, here's an idea: instead of cobbling together a full-sized computer, or using a laptop computer, or using some purpose-built hardware, why not use an Android phone or tablet and the software Type and Speak? You can find it both through the F-Droid repository and through the Google Play store. It is Free, open-source software, and you can use it on already existing portable form factors such as tablets and phones. No working about KDE dependencies and such like in regular old Linux land. And Type and Speak has lots of usability features such as utilizing the Share button feature in apps to be able to read aloud e-mail, Web pages, etc., so you could prepare some messages ahead of time so you don't have to type them to get them read out loud later. And, you are even supposed to be able to save the vocalized output as audio files for reuse however you want, and that could be very handy.

Jose_X said...

Hope everything goes well, but (I have to repeat) please look into vitamin d. It's natural. I have taken loads of it much higher than the government RDA in order to overcome some non-trivial breathing, chest/abdomen/gut pain, sleeping (eg, avoid sharp pains that might even lead to stroke), and even heart issues. I specifically also noticed issues around my chest when I spoke a lot and had low levels of d. (I think lots of talking consumes it). You seem to speak more than I do. Have you noticed heart rhythm issues, breathing difficulty in sleep, headaches? Pain relievers hide pain. Vitamin d fixes many of these problems (esp if you have or to avoid Multiple Sclerosis). The gov and most doctors are lagging the science and current research and the science is lagging the anecdotal.

This may help:

Note that I averaged around 30,000 IU over the course of about a year and because of that I was much better. (The RDA is 600 IU !!!) I also see the symptoms in older folks (and my mother before she passed away at 56). I am not making this up, and cancer threat is much more serious than "overdose" on vitamin D. Start taking 10,000 IU pill (non-prescription), and if you feel a benefit increase above that (especially to treat cancer) and possibly get your levels tested soon thereafter. I am not pulling your leg or being anything less than very serious about this. Vitamin D, please see if it helps. [Also, I eat lots of vegetables, so I get minerals and the like that are also needed to help vitamin d work and in general to help the body heal and function.]

One note of caution, you may experience weird sensation to even pain for a short while (minutes) if you are very low in vitamin d. My guess is that it's the nerves in the body reacting to an imbalance of d in the blood right after you consume a pill(s), it gets absorbed and processed in the liver and then begins to circulate. [Take the golden gel pills rather than white dry tablets since vitamin needs fat to be absorbed into body... and eat some cheese if you can]

Vitamin D may play a strong role in holding together matrix tissue that holds cells to tissue (prob why high vitamin d3 levels correlate so well with low cancer rates .. see top link). It also in general helps the immune system, which is important to eliminating cancer cells. It also may directly signal cancer cells to keep them in check.

I don't take calcium supplements and instead eat parsly, onion, etc, almost daily to keep an alkaline (low) blood pH. Calcium pills actually may raise the pH (not good). This will avoid a source of pain if you take calcium supplements instead of getting it from food. Also, importantly, you can eat cheddar/american cheese (or better gouda cheese) to make sure you are getting vitamin K2 so that calcium goes into bones and not into soft tissue. Yes, I am talking about calcium because it is needed for vitamin d3 to work well. So eat sources of calcium. If you take lots of vitamin d, you probably want to makes sure you are eating cheese/K2.

You may also want to look up (for healthy eating and for serious cancer rate reduction research) Dr Joel Fuhrman. Eat mushrooms, onions, berries, beans, greens, and seeds.

Vitamindcouncil website has lots of current research on illnesses and vitamin d.


Again, luck but please don't leave everything to doctors. They are the last resort after you have done your part.

Jose_X said...

>> to keep an alkaline (low) blood pH. Calcium pills actually may raise the pH (not good).

My bad. Alkaline/basic is the higher number. Low is acidic and what I believe you want to avoid.

Jose_X said...

Among the research are scattered studies that suggest no connection between vit d and cancer, but checking the dosages used will usually reveal 2000 or even less than 1000 per day (RDA is about 600). This is very little when dealing with sickness. And note that the sun itself (near equator during mid day Summer) can give even 20,000 in a span of just minutes (for light skinned individuals). [Don't stay too long under strong sun, and (vit d producing) UVB does not go through windows.. indoor workers are 3 times *more* likely to get melanoma than outdoor workers.]

Sleep problems and/or headaches/mental issues:

Jose_X said...

This video (made by an expert/researcher) may be useful to show your doctor or anyone to get an idea of fairly new additions to cancer models/theories about how vit d plays a key role in managing cell growth and/or preventing cancer. The video may be useful to your general audience. "How Vitamin D Reduces Incidence of Cancer: DINOMIT Model"