Wednesday, May 26, 2010

What Can You Say

To someone who is newly diagnosed, what can you say? How can you make them feel as though the entire world hasn't just crumbled before them?
This is one of the most difficult things that I have been presented with over the past going on five years. We found the other PALS (People with ALS) in the first few weeks after being diagnosed. This was incredibly important in order to have someone to listen to you who knew exactly where you are coming from, and for me, had a wife that could listen to Julie and to understand what her concerns, fears and questions were.

I have surmised this: God has a plan for each of us and I believe he only puts trials in our life that he knows we can handle. Also, it takes an extremely strong individual to go through ALS with a good attitude and optimism to help others and to be a strong soul for those that we love around us.

Put those two things together, and that means that God thinks you are just such a person. Newly diagnosed patients are, of course, new to this reality and this news. Although it never stops shocking you each day that you're dealing with this, it does however, get easier to live with and to accept. What are you going to do, crawl into a hole and be depressed all day, no fun to be around? No, you must continue living and taking each day one at a time to slowly adjust to your new reality. You can do this pissed off, or you can slowly come to peace with it. It is all a decision that you may! (and of course, don't shy away from antidepressant help) This is not a weakness or a lack of faith in God, it just readjusts the chemicals back to the point at which they were before you found out this news and drove them to depletion.

My thought was to keep working at my job, but then it became apparent to me that I should be spending the most capable and energetic years with my family and kids. I quit work approximately 2 years ago and feel so much better that I have spent more quality time with my family than I probably would have spent over the next 10 years.

The newly diagnosed ALS patient will become stronger and they will find something that gets them up every morning and find something that they are passionate about to give them that drive. It is crucial that you discover this and it took me over two years. I kept asking why me? Why would a young guy with two children be afflicted with a terminal disease? What good could come of it and if God has a plan, I would like to know what it is. That is certainly not to say that you will be in a terrible situation in the near future, it is just to encourage you that this shock will subside. For sure, whether in two months from now or one year from now, you will find peace with this situation and a place from which to make a difference in the world. It is not for you to be strong for yourself, but for you to show others how life is to be lived no matter what life has thrown at you.

1. Don't overwhelm yourself with Internet searches and research just yet. Focus on life and fun! Intensely love those around you!

2. Don't talk about ALS and your future after 6 PM each evening. Rest, relax and don't let this topic take over all the conversations with your wife or other family. It does no good to help you fall asleep in the evening.

Friday, May 14, 2010

What is going on? Update...

Well, here is a little bit of a disjointed entry... The kids are excited to be out of school soon and are now counting down the school days 13, 12,... even though summer is approaching, you wouldn't know it by the weather here in Colorado. We got up to about 80° and two days later it was 31° and 4 inches of snow. A day later it's sunny and warm and the next day it rained all night. I actually really enjoy this weather and still am happy to live in it as compared to sunny and 70 every day in California. Sorry to all my old buddies back there in SoCal.

We are excited to do a little bit of traveling this summer and possibly a couple camping trips. The drive to Mount Rushmore, Michigan and then flights to Texas for national rally and flying back home. Friends of ours have volunteered to help our family camp through helping set up tents, and carrying all of the assorted gear. Of course, the boys know how to do all this, but a father generally take care of the majority, at least in my camping experience. Julie enjoys camping (somewhat), but definitely could do without all of the set up and tear down work. Steamboat Lake and a nice campsite in Rocky Mountain National Park are our favorites. We would like to also visit Yellowstone and camp near Old Faithful geyser.
Doing all of this is definitely getting harder with the continued progression and weakening of my arms. Now, my neck muscles are getting into the act (act of not working very well), and this is contributing to weakness and fatigue quite often during the day.

Recently we went to a ALS fundraiser, and walking through the tables for the silent auction items, with my head looking down, turned out to be a very difficult task. I find myself either wearing my neck brace or trying to balance my head in a very neutral, straight up position.

Experimenting with usage of different mice, the mouse head tracking unit called "Headmouse Extreme" and also trying to stay on top of training my speech software as my voice changes. I still very much enjoy being on the computer, updating all my social networking sites and staying attuned to all the latest technology.

Tuesday, May 04, 2010

Survivor Host, Jeff Probst, on Live With Regis and Kelly

A Quick Thought about Speech Software Options

currently I use nuance, Dragon NaturallySpeaking 10.1 professional because my voice is still usable. After that, options become much more expensive and it depends on which muscles have stopped working. You could use a head mouse extreme to communicate with the computer and type words for it to speak or you can go all the way up to the Dynavox. I also started doing something called "voice banking" in order to have words and phrases in my own voice available for when I lose it. has software to do this.

Our Latest Excursion to the Shooting Range

Connor and I had a date at the firing range. Connor shot a 45 caliber and 30,06-270 hunting rifle as well as our 22I just supervised and instructed the operation.. Fingers can't pull triggers anymore him him

The boys are getting so much older

Here are the latest school portraits for both of the boys. Brandon is nine and will be 10 this August. Connor is 13 and will be 14 this August as well. They are "all boys", with interests in science, mechanical projects, PS3/computers and active in soccer. Mom and I couldn't be more fortunate and are very thankful for both of our precious sons.

Another entry with some good news and bad...

Today is my wife's birthday! She is 41 years old and more beautiful to me than ever before. She means everything to me and has been (and is) a rocksolid pillar of support in my life. The love and best friend of my life.

We lost a dear friend to ALS on April 30, 2010, Joe Eades. Joe had ALS for approximately 2.5 years and his progression was fairly quick in the last six months. As I visited him, I realized that the progression was quicker than he and his family could keep up with as far as making the proper adaptation arrangements for the bathroom, wheelchair and speech tools. It affected me very much so, as Joe was the first close friend that I had known to pass away from ALS. we will all miss Joe very much, but have solace in the fact that he is now free from the muscle atrophy and the deteriorating body.

Things with me have been going fairly well with a little bit more progression in shoulders and wrist muscles. I notice my speech being affected a little bit more, but only late in the day or after I have been talking for a long time. I never realized how much the tongue is used in chewing food. A little bit of atrophy can make it extremely difficult to move food around and then talking is even more difficult when the tongue is worn out. However, I am still using my speech software successfully even to write this blog post. Dragon naturally speaking version 10.1 Pro from nuance has been working excellent for me. I tried to speech recognition tool that comes default with Windows 7, but it is nowhere as accurate even after a considerable amount of time training it.I know that I should be working on my voice archiving for use with speech computer tools in the future, but as of yet, I have only recorded approximately 25 to 30 different sounds, words or phrases.

May is ALS awareness month, so get out there and do anything you can to support ALS awareness and fundraising!