Ask Me Anything about Living with ALS this Tuesday

Share this

The National ALS Association (ALSA) has invited me to speak at an online event at Reddit's Ask Me Anything (AMA). Join me in honor of the ALS awareness month this Tuesday, May 13, from 2-3 PM Eastern time, to learn what it's like to live with ALS. Bring your questions, or lurk around to read the Q&A of others. Stay tuned for more details as the date approaches!

Comments

Anonymous's picture

hi!

Thanks so much for doing the AMA. I will be donating to your organization now!

JeffKang's picture

I have a motor disability, so

I have a motor disability, so I try to track any upcoming assistive programs.

A program called Gazespeaker was released just recently. It’s an open source accessibility program for controlling the computer with an eye tracker.

http://www.gazespeaker.org/

Some of the functionalities that are listed on its website include:

“display communication grids
integrated grid visual editor
write a text with an auto-adaptative predictive keyboard
read web pages on the internet
read ebooks (in html format)
read scanned books or commic strips”

It may not have all the features of more established programs, but it is open source and free.

Also, an open source, eye-tracking, predictive-typing software program by Team Gleason took 1st place in the Washington State University EECS Senior Design Poster Contest – Uses: Android, Windows-8, The Eye Tribe, The Pupil.

I don’t know when that one will be released.

Lastly, there is an open source application that is called bkb by MastaLomaster to control a computer. It can be found here: https://github.com/MastaLomaster/bkb

It looks like bkb functions similarly to GazeMouse, and the PCEye software (although, it appears to work more comparably to the PCEye software since there is a virtual keyboard and scroll widget, and you keep going back to an icon in the vertical menu for each action).

http://www.reddit.com/r/EyeTracking
TalkingEyes: Eye-tracking and ALS Google+ Community: https://plus.google.com/u/0/communities/103103072435695270907

I’m just beginning, but I’ll do what I can to help the development of assistive technology. They can keep you connected until there is a cure.

Thanks for doing the AMA.

Tracy's picture

I have ALS. I'm 49 years old,

I have ALS. I'm 49 years old, was diagnosed March 2011. Tge doctors tell me its a slow progression. I feel like I'm on a rollercoaster ride. They say live your life, do things you enjoy etc. With no financial means etc. That's pretty hard to do. I'm scared. I'm angry. I'm sad. Emotionally, I am a wreck.. I need advice on how to handle all these feelings and fears. Thank You and may God Bless You.

Robert Baker's picture

Living with ALS

Here is one my posts on facebook. I too have ALS and know what you are going thru.
Strength beyond measure.

As many of you know, I have been battling ALS / Lou Gehrig’s Disease for 11 years now. Three of those years before I knew what it was. It started in my right hand sometime in 2003. I went thru a baker’s dozen diagnoses in the early days. They ranged from carpal tunnel to pinched nerves in my neck. Along the way things progressed and got worse. By summer of 2006 I started having problems in my left hand and with my speech. It came to a head one Sunday in November of 2006. I was on duty and my hands would not quit shaking. For some time now, when I would work at something involving physical labor, my hands would shake afterwards. Usually this would last the remainder of the day or into the next. This time it was different. Saturday came and went with no let up. Sunday was the beginning of my work week and they were still shaking. I went into to work as usual but by around noon I knew I was in trouble. I would be a liability if a hot call came across the radio. I called my supervisor, Lt. Chris Henson and advised him of the problem. A short time later I met with Chris and the patrol sergeant at the SO. I informed them of the situation and they decided as I had that it was not a good idea to be on duty. My Lt. was understanding and knew I would not be having this discussion if it were not true. It would not be the first time Chris would go to bat for me. Though we didn’t always see eye to eye on things, I have a great deal of respect for him. The sergeant on the other hand, well that is a different story. He said “well you can always go to work for road and bridge.” You know that definition of stress? The one where your mind overrides your body’s basic desire to choke the s#!t out of someone….. Yes that was one of those moments!

This was the beginning of our journey, Denise and I, you would say. My neurologist sent me to UT Southwest in Dallas. There they took what felt like two quarts of blood and other things and began running tests. The tests ranged everywhere from heavy metal poisoning to exotic diseases from around the world. The worst was the spinal tap. Afterwards it was a waiting game for the results. That was one of the best and worst times of my life. You see in that month, my wife Denise Smith-Baker, informed she was pregnant with our daughter. A week later the doctors told me theirs findings. ALS, I had heard of it before and knew I was in trouble. I just didn’t know how much.

On the way home that day, I began reading the mountain of literature the doctors had given me. I got to part in the first paragraph, the part about the life expectancy being only 2 to 5 years from diagnosis. I threw the book the book to the back seat and never picked it up again. To say that this journey has been a roller coaster ride would be an understatement. I would soon go from mountain peaks to the valley of the shadow of death, my hell on Earth.

Denise and I received a great deal of support from family, friends, coworkers and the community. This included Limestone County Sheriff's Office and our church family at Lake Limestone Baptist Church. Many of our friends stepped up along the way. Longtime friends like Dave and Kim Barber, Terry Jones Sculptor , Walt McKeever, Robbie Pettigrew and many more. New friends like Paul and Sherri Brummett and the list goes on. Paul and I were diagnosed just a month apart and met at the clinic. We lost him to ALS in 2012.

In 2008 I ended up in the hospital. This involved surgery for a staph infection and a round of antibiotics. This led to another chain of events. About two months afterwards my speech problems ended. Doubts came up about my ALS diagnosis. A story from my brother in law, Jim Culp, about a man he knew led to another doctor. He in turn sent us to New York and a doctor who specializes in Lyme’s Disease. This led to being treated for Lyme’s disease for two years. I had a good deal of improvement during this time. It would not last.

It was during this time that Denise and I decided to move closer to family. Neither of us wanted to move back to Lubbock. Western Oklahoma where my sister and mother, Melody Baker Culp and Novadell Owens Baker, lived was out due to housing and the job market. That left NE Oklahoma and Denise’s family. Her family promised to help out so in May of 2010 we moved Haskell, OK. To make a long story shorter, it didn’t turn out that way.

Long about late 2010 I began noticing some of the problems popping up again. Things like frequent headaches, sleeplessness, weakness and a host of other problems. This along with being disabled, isolated and not knowing anyone here made matters worse. You add on top of that being Mr. Mom, a job I clearly wasn’t designed for or good at, and you have a lot of stress. Things became progressively worse. I had begun that decent into the valley, my hell on earth.

Things got really bad. We had gotten away from church partly due to the move from Texas but mainly due to my building anger and resentment toward God. The worse I got physically, the worse my anger got. The worst time was in 2012. The death of two friends, Paul Brummett and Vaughn Overson , and the near violent encounter with Denise's brother in law and his dad on how to raise my kids had taken its toll. This along with angry words from Denise in the same encounter had pushed me to edge. I began telling God to just get it over with and if he didn’t, taking the matter into my own hands. Things had taken its toll on my marriage too. I had hit rock bottom. My love for my children and something my brother, David Baker, said to me years ago was all that stood between me and calling it quits. He too had rough spot and thought of taking matters into his own hands. He said “Bert, I wasn’t going to give the mother @#$%!&* the satisfaction of knowing they got the best of me and I couldn’t take it.” This began the slow ascent out of the valley.

I ended up back at an ALS doctor. The constant headaches were from poor respiration at night due to weakened muscles in my chest. This led to carbon dioxide build up in my blood and a host of other things. I now have respirator I use at night. The best thing to come out of this new doctor was an ALS support group that met in Tulsa. We were introduced to what we now call “Our ALS family”,people like Barbra Graff and Larry Seacat. They in turn introduced us to our new church family at FBC Haskell. Family members like Brother Gary Eakins, Tom Criner and Jamie Jackson as well as many more. In April of 2013 I went with Brother Gary, Tom and several other men to the “Rewired” mens conference at Falls Creek. I like to say that it was the point when “I got my head screwed back on straight.” I had nowhere else to go or look but up. God and the Lord Jesus were still there as they had been the whole time.

Since that time, I have pulled out my “Armor of God” and put it back on. It has its battle scars like me. Also our church family has grown and helped us immensely. Our ALS family has helped and grown too. Brothers and Sisters like Steve Cox, Sara Cox, Debbie Meredith, Alexander Coriell, Marissa Sharpe Coriell, Todd Hicks, MikeMoleta King, Wilma Holt McDaniel and many more. We have lost some to ALS too along the way, Gary Hawkins, Michelle Paige Cox, Moleta King and Timothy James Wilson. Thru it all we all rely on each other and the Lord. I can speak only for myself in that it has been tough as hell but I keep fighting. Even at my weakest, God shows his love with strength beyond measure.

If you have read this short novel to this point, I thank you. There are so many I wish thank for their help, love and support but I tried to not to make this out to be a “War and peace” size book. Please do not feel left out. Most of all I especially want to thank my wife and children. They have been right there with me on the front line. I am finally feeling at peace but don’t get me wrong I am still in the fight! Don’t tell God how big your problem is. Tell your problem how big your God is.

Robert Baker at denobert2000@yahoo.com
Contact me any time.

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.