Foot switches, Track balls and bears, oh my! ALS Communications

Things May Have To Move to the Feet…

BLOG UPDATE:  And we’re moving to the feet now to test devices early….

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I've been getting’ by okay by using Dragon Naturally Speaking version 11 Pro along with a very carefully chosen Logitech mouse with the right click button adjusted to not click so easily (a little slip of highly calibrated :-) paper under the button) and the left click button modified with some rubber pad bumps to stop my forefinger from sliding backward.

For many years I used the 3M pistol grip mouse as seen in this picture.

I have recently talked to the local ALSA to discuss options for controlling the computer with my feet. My hands will still work for short periods of time or where I need the most accuracy, but if hundreds of clicks are necessary, my finger and hand will get very tired. I still do a lot of video editing, producing and encoding along with gaming and computer drawing/art. I figure if I can use two hands to move the mouse around, then I could use a foot pedal to control left, right and custom buttons with my feet.

The following is an assortment of devices that we are ordering and that I have either already tried or will be testing for review. "I'm the high-tech, handicapped beta tester" :-)

You can search on the web and very quickly find all sorts of solutions. A few that stood out to me are the Savant Elite foot pedals which can be used for Mac or Windows and also can have buttons with custom programmable features such as single click = double-click or a button that opens your inbox with one click, etc. Eventually, even controlling the cursor movements will have to move to the feet. http://www.kinesis-ergo.com/foot.htm

Later of course, all these functions will move to eye or head tracking devices as progression continues. The following links are for the the foot pedals and large trackball that I will be testing.                      http://www.fentek-ind.com/Bigtrack.htm

Some organizations have done extensive work to offer free solutions for handicap people. One such piece of software can be found at http://www.cameramouse.org/. It uses your own web cam to tack your face!  A free download. I'm actually so amazed that it works almost as well as the $1200 Head Mouse Extreme by origin instruments http://orin.com/access/headmouse/index.htm. I used this device for a number of months and found it to be very difficult to control and with poor software which was also very outdated (antient, in the high-tech world). It seems to be optimized for very basic computer use and when increasing its sensitivity to cover my 24 inch monitors, it then became too difficult to hold your head still in order to hover over a letter or icon. Even after playing with sensitivity and acceleration settings. Virtually impossible to use for any work that requires accuracy. Yes, I am somewhat of a computer nerd and hobbyist with nine systems.

Check out Augie Nieto’s SETUP

current w/ TypeRight (c)

initially starting

If anyone would like to write me about computer operation or input devices, I would be more than happy to help any patients or caregivers with as much assistance as I can. I'm happy to donate all of my time and knowledge regarding getting-by day-to-day with ALS issues freely at any time.

I also offer remote, full computer support services. Write me!

NASA’s Mars Rover

Opportunistic Déjà Vu
http://hirise.lpl.arizona.edu/
http://marsrover.nasa.gov/gallery/press/opportunity/20110120a.html
NASA’s Mars Rover, Opportunity, had another Photo Op perched on the edge of another crater. While Opportunity sat at the edge of Santa Maria Crater on Mars the HiRISE camera aboard the Mars Reconnaissance Orbiter (MRO) satellite orbited overhead and snapped the image below. This is the second time that HiRISE has been able to record a picture of Opportunity resting at the edge of a Mars crater. The last opportunity was October 3, 2006 when HiRISE imaged Victoria Crater with Opportunity perched at the crater’s edge moments before the rover carefully rolled down into the crater to explore the crater’s morphology.

Below is a expanded view of the Santa Maria Crater without annotations. Opportunity’s tracks are clearly visible running off the left of the image.

Below is an image of Santa Maria Crater taken by Opportunity from its perch shown above. The rock outcropping to the left below can be seen above at the bottom of the crater.

Opportunity took the image above by rotating and tipping up and down the Ball built mast residing atop the rover and taking smaller high resolution photos that were combined to form the mosaic above. The notches at the bottom give you an idea of an individual picture size.

The image above is a closer look at the rock outcropping displaying the impressive resolution of the camera. The diameter of the crater is about the length of a football field. On the horizon and off in the distance to the right is the crater Endurance which Opportunity visited earlier. Opportunity’s image of the Santa Maria Crater was sent back to Earth to celebrate the seventh anniversary of its landing on the planet. Not bad for a rover whose design life was thought to be 90 days!
Below are photos of Opportunity’s last Photo Op at the edge of Victoria Crater…


Below we are looking across “Duck Bay” on the rim of Victoria Crater. Opportunity has been superimposed at the edge of Cape Verde to give you a scale of the size of Victoria Crater. The rover is approximately the height of a 10 year old boy (5 ft.). Victoria Crater is roughly one mile in diameter.

I'm very proud of my Company 

MDA Awards $2 Million to ALS TDI

MDA Awards $2 Million to ALS TDI
Through MDA's Augie's Quest program, the ALS Therapy Development Institute has been awarded an additional $2 million for drug development research

• MDA has awarded $2 million to the ALS Therapy Development Institute to support the Institute's ongoing drug development research.
• This latest award will support preclinical testing of several different potential therapeutic agents in the SOD1 research mouse model of ALS, and will help expand ALS TDI's research program to include the TDP43 mouse model of the disease.
• The new funding comes via MDA's Augie's Quest, an ALS research fundraising initiative, and brings the total amount MDA has awarded this nonprofit biotech company to more than $23.4 million since 2007.

To learn more, read the full ALS News Online article. Reactivated Virus May Contribute to ALS
Normally dormant viral DNA could be causing damage in brains affected by amyotrophic lateral sclerosis

• Autopsy samples have shown a viral protein called HERV-K reverse transcriptase is much more prevalent in ALS brain samples than in brain samples from people who died from other causes.
• HERV-K is a "human endogenous retrovirus," a type of virus that often inserts itself into the human genome but is usually dormant.
• There is evidence that the HERV-K virus is abnormally activated in the ALS samples studied.
• If the HERV-K virus is activated and producing one or more proteins, blocking its activity or its proteins could be beneficial in ALS.

To learn more, read the full ALS News Online article. www.als-mda.org
Scott Wiebe
National Director - Outreach Services & ALS Division

World Leader in ALS Research and Services

Amazing Meetings

The number of patients in the world with ALS is very small as compared with other diseases. ALS patients are told they have 2-5 years to live and so the number of patients that pass in less than 5 years, based statistically, is close to 80%. In other words, there aren't many of us around long enough to make a difference. In almost every case I have witnessed, patients who exceed these life expectations have made significant impacts in their community or in the lives of others. It seems as though, if you have more time, you come to grips with your own fate and allow yourself to reach out to others.

Being blessed with a slow progression and the associated extended years is one thing, but PALS who reach out and are able to make significant impacts within the first year or two are truly amazing. Imagine that your disease is progressing at a rate that is making it difficult for you to do just about everything and on top of that, you add all of the responsibilities of coordinating fundraisers, attending support groups, being the chairman on multiple boards and taking the time to chat with other patients; while all the while, planning for your own progression on a daily basis.

A few days ago, I had the opportunity to meet one of these PALS, AUGIE NIETO. Augie and his wife Lynn went through some very tough times in the first six months after he was diagnosed in March 2005 including Augie attempting to take his own life through an overdose of pills. At the time of Augie's diagnosis they had 15 and 18 year old son's. They have persevered and have now raised close to $30 million and have contributed almost as much time and money personally.

My sister was able to get us in to an exclusive event being held annually by the YPO (Young Presidents Organization). Luckily, this year it was in Denver. This is an event where George Bush was scheduled to speak, Julian Assange spoke and many other very successful business leaders (Julian omitted). Augie Nieto of course, being one of those successful business leaders with his success inventing the Life Cycle and subsequently the Life Fitness empire.Augie has come from a dark, desperate, fear that many ALS patients and their families have known in the beginning, to one of being a hero, a role model and one of the foremost fundraisers for ALS in the past five years. ( including MDA ALS site - Augie's Quest & ALS TDI )

Augie and Lynn's story was very close to our heart of course, but it was good to see an entire room exposed to “A day in the life” of an advanced ALS patient for the very first time. A room of people that has the financial backing to make a difference one day. Lynn did most of the speaking and Augie used his computer to give us his funny "Top 10 reasons it's good to have ALS" in the Dave Letterman style. They both were very adamant that the use of humor to get through each day was crucial to them. And dark humor at that - and we couldn't agree more. At the end of the talk, Julie, my sister and I found ourselves to be the last people in the room still chatting with Augie and getting a tour of his highly customized Dynavox daily operations software. (After all, he is on the board of Dynavox as well)

#10 - The fatter you are, the longer you live (B.O.B.)
#9 - You can give advice to you kids and they might even listen.
#8 - You get to take medical marijuana.
#7 - You can go to a strip club, have a lap dance, and not violate the "no hands" policy.
#6 - You never have to buy new shoes.
#5 - You can have bondage sex without straps… You just lay there.
#4 - You can hire out as a carpool dummy.
#3 - You can ask a woman to unzip your fly.
#2 - You can take a shower with other women and your wife won't complain.

And the #1 reason that it is good to have ALS is:

#1 - You get to experience the love and generosity of your family and friends-every day!

Again, thank you very much to Augie and Lynn for their time and a wonderful talk. I feel fortunate to have seen Augie, because Lynn mentioned that it may be the last time they fly. They came with so much equipment, caregivers and bags upon bags of tools/supplies that it may not be feasible again.

1955th Day

It's been 1955 days since we heard the bad news. September 22, 2005, yet I continue to defy all odds by still being able to walk and still being able to dictate via speech software. (Albeit, somewhat slurred at times) It's been 4 1/2 years since I've been able to water ski (this was me on the SDSU ski team in San Diego). But, I was able to snow ski as recently as last March 2010. Both were some of my favorite things to do. I considered skiing last month, but I'm afraid that the weakness in my legs may cause me to fall. Being injured at this point, I doubt my body would ever recover or be able to rebuild any muscle loss after a cast came off. It's just not worth it. I started skiing at age 3, so I got a good 40 years in and never missed a season. Plus, if I were to even tip over, I would need people to help me even stand back up with all that gear.

Sports are one thing… However, not being able to play the drums for the past five years has been one of the hardest challenges. I enjoyed it so much. Not only was it good cardio exercise when I would practice for hours at a time, it was an escape and a time to enjoy playing along with my favorite music. I have enjoyed watching my older son become very good at playing. It has allowed me to still play vicariously in my mind Through him.
Luckily, I was never Someone who lacked hobbies or things to do. Being "bored" was a 5 letter word in Our house. Lately, I keep myself busy by working on the computer, which is a hobby of mine. I have all the tools necessary to help others through remote support and am looking for people to contact me who need help setting up parental controls, network monitoring for kids, antivirus/malware software installation, program training or fixing any general problems people may have on Windows or Macintosh.

My other favorite thing to do was Amateur astronomy & astrophotography with all of my Telescope gear…

ALSO, driving my Porsche up in the mountains which I’ve since had to sell and stop driving all together..

LIFE IS SO AWESOME WITH ALL THE THINGS GOD LETS US HAVE, LIKE MY FAMILY!!!

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Why Can't They Just All Get along?

For years now. I have not been able to understand why ALSA, MDA, ALS TDI and a handful of other support/research groups have not been able to get along and coordinate their support and "primarily" research. They each collect their own money, have their own fundraisers create their own research centers and, while this seems fine, at least you would expect them all to share information. This is not the case. Recently I found out that ALS TDI one of the leading research centers for specifically ALS in the world has not received one penny from ALSA. Being that ALSA is one of the #1 fund raiser in the United States, if not second with MDA, I find it hard to believe that none of their resources are directed toward ALS TDI.

As a patient. I find this extremely frustrating and using examples from other diseases, I don't really understand the reasoning or politics behind it. Cancer research centers cross communicate, Parkinson's, Alzheimer's and multiple sclerosis groups seem to share at least basic knowledge of trials and drug candidates. I also became aware of a Facebook group which has the sole mission of boycotting ALSA, National due to its inability to use funds for "significant" research. Don't get me wrong, ALSA on the local level is extremely helpful and useful when it comes to patient and caregiver support, but of course they're not involved with research. Our family receives tremendous support from our local Rocky Mountains Chapter.

This all became very apparent to me in the preceding months before our CBS special, Live for the Moment (LF TM), which aired on January 28, 2010. In order to make the most out of the show and its slot on primetime Thursday night CBS television, I began working very hard to make ALS TDI, ALSA and MDA aware of it. I was very successful in getting buy-in from ALS TDI and their full support to put the show's logo on their website. ALSA national also was very eager to promote the show and had a write up and logo on their front page as well. It was a little bit more difficult with MDA due to the way it was handled between their representative and the CBS. (A long story). In the many writeups and comments from the ALS community that followed, ALSA was criticized for not buying airtime just after the show as a public awareness opportunity and a chance to point people to websites where they could donate time and money.

I'm not quite sure what can be done in order to encourage the primary groups to engage one another more frequently and at a greater depth. The willingness also doesn't go both ways equally. What I mean is, ALS TDI is extremely willing to work with ALSA and MDA, and in the case of MDA, they have the Augie's Quest initiative, which does donate considerable funds to ALS TDI in Boston, Massachusetts. However, ALSA seems to be an organization that is closed and operating primarily within its own boundaries. If this is not the case, I have failed to find evidence of it on their prep site.

Some groups focus on caregiver assistance and equipment for patients along with the fundraisers and awareness events to raise money for the use activities. Other groups focus solely on therapeutics such as the Therapy Development Institute. MDA and ALSA are organizations that try to do both and it would be far more effective to funnel all funding into, one highly capable organization. Maybe the funding would reach such a level that the government would take notice and match or contribute additional funds. There are multiple facets to this philosophy such as, if multiple centers are doing the research, then you have multiple approaches and different thought processes going on. But no one seems to have enough money to make headway on their own. Anyway, maybe if all of the research groups were to be housed under one roof and pooled all of the money, then the multiple philosophies and drug approaches would be combined with uninhibited communication between the groups.

Yeah, like that would ever happen in my lifetime…
I would love to hear your comments and read any thoughts you have on this topic.

Thoughts on Lyme disease “or” ALS

I wanted to put my thoughts on this matter on the record.  Before you read too far, let me be clear that I do not believe there are the links that we are led to believe by so many postings on the Internet. I recently posted a video of leg fasciculations on YouTube here.  I received multiple feedbacks as well as many comments about whether or not it could be Lyme disease and not ALS.  In fact, there is an entire movement out there that is convinced that many ALS cases are in fact untreated Lyme or "chronic Lyme".  I have read about people taking large dose intravenous antibiotics (ceftriaxone as talked about in the videos below) in order to combat this. I have first hand knowledge on this (more on that later).  There is also a move to have people believe that various unproven health and "antiaging/nuerological" health supplements sold by many MLM outfits will have you cured and your symptoms reversed lickety-split. Be very wary people.

The majority of contacts I have received always seem to include a segment on how inaccurate and incapable blood tests are at detecting Lyme disease. While it may be true that standard blood tests are inadequate, my interest wanes quickly as I discover that they want me to take a certain supplement, call a certain Dr. or begin some miracle therapy.  I myself, had my blood work done by the premier lab just for this type of test. After also being pulled into this "Lyme" lie/scam/false belief... etc., I had heard of David Martz, MD through a friend and had watched his videos online.  A close friend of mine, also with ALS, was contacted by someone in Texas who had worked with Dr. Martz and his staff out of Creek Trail Medical Clinic in Colorado Springs.  Dr. Martz has since retired and Dr. William Harvey has taken over, at least as of 1 1/2 years ago.

About Lyme

Part 1 - Theory that ALS and other motor neuron diseases are linked to Lyme disease

Part 2 - ALS, Multiple Sclerosis, Alzheimer's and theorized links with Lyme disease

Their theory was also that some bacteria or disease that could be treated with powerful, high dose antibiotics delivered intravenously.  Before treatment, however, both my friend and I had blood drawn and sent off to IGeneX, Inc.  By the way, I also had blood tested at the Houston Medical Center as well as the University of Colorado Medical Center.  Which were also both negative for Lyme. Watch the videos in this post to form your opinion.
With regard to high dose antibiotics delivered intravenously;
…….tbf