Interesting Story I Wanted to Share …

Thanks to the Rocky Mountain ALSA newsletter for this interview.
Advice from the Trenches
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She's the author of "The Butcher's Daughter: The Story of an Army Nurse with ALS," in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader.

Q: Do you have any suggestions about how to enjoy the holidays? I find myself sad that I cannot do things the way I used to and feel a little overwhelmed, but I want to do all I can to enjoy my family and friends and to help them have a good time, too.
A: With the holidays fast approaching, it's a time for family get-togethers, giving thanks and sharing fun times. But with ALS intruding in our life and lifestyle, it's easy to fall into a mindset of believing that this year will never be the same as last year which leads to disappointment and unfulfilled expectations. It's necessary to change this way of thinking from being consumed with the negative to taking a more positive approach. Here are several things to consider and think about as the holidays draw near.

• First, you should acknowledge, accept and adapt to the fact that the holiday will be different. But know that celebrating a holiday in a different way is not necessarily a negative experience; it can be very satisfying, if you approach it with the right attitude.
• Speaking of attitude, ALS may take our strength and movement, but it can never take our approach to things. The way we deal with our limitations and obstacles is unique to each of us. Personally I refuse to allow ALS to define who I am.
• As you prepare for the holidays, incorporate your new lifestyle in a meaningful way into new traditions. That means figuring out how you will transition from your physical role during the holidays to one that involves more planning, coordinating and delegating. For example, you can plan the menu, invite the guests, share recipes, assign food to bring, delegate duties, make someone in charge of games and activities, and much more. There is really no need for you to be physically in the thick of the bustle, your presence is felt in everything everywhere because of your planning.

So, there is really no reason why this holiday season can't be as memorable and enjoyable as any!

ALS Clinical Trials: Cytokinetics, Neuralstem Advance

ALS Clinical Trials Briefs: Cytokinetics, Neuralstem Advance

CK-2017357 is being tested in combination with riluzole, and Neuralstem will test delivery of its stem cells into the cervical region of the spinal cord

Article Highlights:

• Two human clinical trials to test experimental therapies in ALS are moving forward.
• After having tested its experimental therapy CK-2017357 in people with ALS who weren't taking riluzole, biotechnology company Cytokinetics has now begun the second part of its phase 2 trial, in which the two drugs will be tested in combination.
• Biotherapeutics company Neuralstem will begin testing the safety of transplanting its neural stem cells into the cervical (neck) region of people with ALS.

To learn more, read the full ALS News Online article.

Researchers Say They've Found Common Cause of All Types of ALS

• Yahhhh!

SUNDAY, Aug. 21 (HealthDay News) -- The apparent discovery of a common cause of all forms of amyotrophic lateral sclerosis (ALS) could give a boost to efforts to find a treatment for the fatal neurodegenerative disease, a new study contends.

Scientists have long struggled to identify the underlying disease process of ALS (also known as Lou Gehrig's disease) and weren't even sure that a common disease process was associated with all forms of ALS.

In this new study, Northwestern University researchers said they found that the basis of ALS is a malfunctioning protein recycling system in the neurons of the brain and spinal cord. Efficient recycling of the protein building blocks in the neurons are critical for optimal functioning of the neurons. They become severely damaged when they can't repair or maintain themselves.

This problem occurs in all three types of ALS: hereditary, sporadic and ALS that targets the brain, the researchers said.

The discovery, published Aug. 21 in the journal Nature, shows that all forms of ALS share an underlying cause and offers a common target for drug therapy, according to the researchers.

"This opens up a whole new field for finding an effective treatment for ALS," study senior author Dr. Teepu Siddique, of the Davee Department of Neurology and Clinical Neurosciences at Northwestern's Feinberg School of Medicine, said in a university news release. "We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."

This finding about the breakdown of protein recycling in ALS may also prove useful in the study of other neurodegenerative diseases, specifically Alzheimer's and other dementias, the Northwestern researchers said.

ALS afflicts an estimated 350,000 people around the world. About 50 percent of patients die within three years of the first symptoms. They progressively lose muscle strength until they're paralyzed and can't move, speak, swallow and breathe, the researchers said.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about ALS.

Security Now 318 | TWiT.TV

Security Now 318 | TWiT.TV

I watch Security Now... fun, geeky and educational (if u like computers)

Continuing to Work on Disability?

When unexpected medical retirement comes your way, what should you do? Something you love of course! Continuing to work for my aerospace employer for more than two years after ALS diagnosis was a great choice. I loved my job very much. When it became more difficult to drive to work, carry my laptop to meetings, get a fresh cup of coffee or even keep my energy up throughout a full workday, I had to make a decision. Stay at work and use the time still available while my muscles are working at their best to be in the office or to spend more time with family traveling or playing games around the house with the kids. It did not make sense to continue working until I could no longer function and "then" go home to be with family and not be able to do much.
It soon became clear that my progression would be slower than normal. I did not know this of course, when I was making the decision to quit work and be home. Even though I loved my job, in hindsight, I would still recommend quitting work ASAP when given a diagnosis of ALS. Some may disagree and have significant reasons to continue working, this is just my opinion. (Some significant reasons to continue going to the office would be financial, insurance coverage or it may be best if you do not have family around and would only be sitting at home becoming more depressed.)
After a few years, primarily spent promoting ALS awareness and fund raising, I wanted to continue doing things that I enjoyed. I continued with many of my hobbies, but almost all of them became impossible except for computers. Spending most of the day on my many computers as well as answering so many tech questions for neighbors, friends and family, I thought, why not make some money while doing this?
Not being able to speak very well and performing computer tasks at a slower pace, I knew that my advertisement and pricing structure would have to be customized. Much lower prices and word-of-mouth would be the only way to acquire customers. Only remote support would work, as even if I could get to a customers house, I wouldn't be able to perform hard drive upgrades or memory increases without help.
Then, the question became whether I could earn a small amount of money on disability. Were there any legal or tax implications? The answer is simply, yes, you can do it! I would encourage anyone in similar situations to go for it and use their free time to continue hobbies that they can still do. Even if I didn't make money, helping people out doing something that I love adds joy to my every day activities.
So, I started Roger’s Computer Tech Support at www.rogerchilds.com
Get to it PALS, live!

ALS and Keeping Active: Geo-caching

I thought that I would post a quick note about geo-caching and how much fun Connor, Brandon, and even Julie and I have been having doing this with the boys. Connor has even added a simple geo-caching page to his website HERE
Geo caching is a global treasure hunt with term aim and finding difficulties rated on a scale from 1 to 5. A rating 1/1 could theoretically be found by someone in a wheelchair having both accessibility of reach and terrain suitable for a wheelchair. On the other hand, a 4/4 may require extreme climbing, difficult puzzle solving, a long hike, underwater searching or possibly a few hours or overnight stay. A 5/5 includes difficulties at the top of mountain peaks, scuba diving, technical mountaineering and the like. I'd say that the majority of our findings are approximately 2/2 as is the case with most of the tens of thousands of geo-cachers.

Caching intro Video

It has also been fun to purchase travel bugs or geo-coins in order to keep tabs on where our collectables have been or are going. Some examples of collectibles or tracking bugs are shown below.
These trackables can log thousands of miles and hop from cache to cache for years to come .
Geo-cache hides can range from a simple microcapsules to a large 5 gallon Bucket. They can be disguised to blend in with their environment. One geo-cache we found required flashlights in a cave. Another required us to lift rocks and search near a river. Another was a very dangerous climb to the top of a tree and yet another was not a geo-cache at all, but a trash removal event called "Cache in, Trash out" CITO.


Of course, I watch my boys perform all of the aforementioned tasks. It's just fun to be out there with them and sometimes I help suggest hiding locations for them to look or help in solving the coordinate puzzles. Mom drives…
There is always something to learn when geo-caching. For instance, some geo-caches are called "Earth Caches". They may require you to observe a certain geological formation or other natural phenomena.

Here are pictures of NCAR in Boulder near the Flat Irons and also formations in granite that you need to identify while geo-caching. This is a xenolith. A xenolith is a rock fragment embedded in, and distinct in texture and composition from, a surrounding mass of igneous rock.
______________________________________________________
I am frustrated by my progression and some days feel as though my life is heading toward days of computer and Netflix all day. But I urge myself and you to get out there and find something that keeps you busy and most importantly, keeps you having fun with your family and friends.
Please check out this sport/hobby for ages 2 through 100 at www.geocaching.com. Accounts are free and you can even download a free app on your iPhone or android device. Connor purchased a geo-caching GPS made by Magellan with his own money, but it is not necessary.
If you join, send us a note @ user Agressor7. We have found over 150 geo-caches and have hidden 11 geo-caches five of which are very custom designed or puzzles. We even have a trackable on our car, so if you see such an emblem like the one shown left, be sure to log it on your account. Ours is 813K1Q
We have even used geo-caching to promote ALS awareness.  See our trackable below.

Have fun PALS !


.

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….

________________________________________________

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!!!

.