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!

A Cruisin' to a Bruisin'

The Cruisin'
Wow, what a week. Make that three weeks actually. We were so excited to leave on our Eastern Caribbean cruise and we did all the preparation to get ready and pack. Everything was uneventful getting there and we were amazed at how large our suite was with 150 ft.² of our own balcony space, our own butler, breakfast, lunch or drinks in the room and a special VIP only restaurant to attend. The cruise itself when it really well. First we stopped in the DR and then went on to the US Virgin Islands/St. Thomas and then on to the British Virgin Islands/Tortola. (Only about 10 miles apart) of course on a cruise line, we went at around 5 kn all night cruising as far south as 17° latitude before heading back north to Tortola. The weather was beautiful and we really enjoyed the Virgin Islands. We did not get off the boat at Samana and that the reports were not that great. We spent Thursday at sea and on Friday morning the ocean was too choppy and the swells too large to allow for tendering service to Great Stirrup Cay. We slowly headed back for Miami at about 7 kn the entire way. We didn't have that far to go in the made for extremely smooth sailing. Overall, a great trip. Aside from a three-hour delay in Miami and the ground crew forgetting to load luggage on the plane, we finally got home at around 1 AM Saturday night.

The Bruisin'
as they say, "if you play, you pay!". Julie started to not feel well in the airport and it became much worse on Sunday and by Monday she was diagnosed with bronchitis. That then travel to me and I have been sick much of the entire week. We were able to get much done and did a lot of sleeping while the kids were in school. Luckily they had a good week at Dennis and Becky's house and none of them took ill. So, we're just starting to get better win yesterday morning I slipped on the ice and slammed the back of my head in to our concrete step. Reluctantly, four stitches later... I still have a headache and suspect it will last a number of days more. Stitches will be removed on March 31, 2010. I definitely thought it was a fitting title-cruising to a bruising!

a pleasure helping others

Julie and I have been sent so many messages of inspiration, encouragement and hope from all over the nation. We worked very hard to get back to most everyone and Julie has even had conversations with a few of the families. We have heard from Michigan, Florida, Pennsylvania, California and so many other ALSA chapters as well as families. We are so grateful to have these connections and to be able to help people who have recently found out that they have ALS, PLS or other similar MND's. Some feedback has come to us which has been less than positive regarding the show and the focus of it. Honestly though, this has been less than 10 letters out of close to 1200. A very small percent indeed, but it was interesting to us that those few writers came from the ALS patients groups that we are in touch with through newsgroups or forums. And, of the people writing from that group, it was sad to notice that they were progressing quickly. I thank God every day for a slower than normal progression, but it's not fair to anyone living with ALS and certainly is much worse when things are going quickly. It has so much to do with attitude and outlook. Some people in those situations are very bitter, mad at the world and quite frankly in shock about why something so awful would happen to them. It appears that the first year or two is spent dumbfounded in the shock and not knowing what to do. It then appears that after two years or more, people become a little bit more either comfortable or understanding of their situation and attitudes seem to change. Either people become more at ease with their own mortality or caught up in an attitude of making the most of the time that they have left. This is all very hard to put into words, and I'm not exactly sure why I felt like writing about it... I suppose it just helps me to put these things into writing and possibly my thoughts may be shared with others. I'm open to any criticism or feedback on this post. In fact, I am interested to find out what others think with regard to post diagnosis the motions and the various phases that patients go through when dealing with ALS.

continuing exchanges after the show

Julie and I are still continuing to go through the thousand or more e-mails, thank you notes and donations after the show. This is not a chore, but a pleasure, albeit a time-consuming one. We are also receiving countless recommendations with regard to different supplement regimens, lying disease or other conditions that people are telling us about. I came across an interesting article, here http://tvnz.co.nz/view/page/411317/2192910?cfb=3 and there are countless others. We have also been made aware of many new websites and also new ALS resources or family stories.

Floods Have Hit

As a flood of support and outpouring comes toward our family prior to the airing of "live for the moment", unfortunately, we've also had a flood and outpouring of water from our upstairs bathroom down into the ceiling of our family room.
In so many ways God tests us each day, and yet, here again, is another one of those tests. Julie and I were mad, blamefull and overall very unpleasant during the whole ordeal. It could have been a lot worse if I had been trying to explain to Julie or anyone else with able hands where the water valve was. As it happened, I was able to get to it and have my nine-year-old help me pull the panel off. Now, the carpet has been pulled back, the pad has been cut away and two of the drywall sheets have been pulled off the ceiling. In the end, the worst thing may be some cuping of the wood floor upstairs. What seems so bad at first, may not be that bad with the proper perspective.

Today I am doing phone interviews with www.Zap2It.com, www.RealityNewsOnline.com, www.TVGuide.com

Just Some of My Thoughts to Criticism

a response to potential criticism on our intentions...
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I have been a part of this forum for years now and consider it extremely important. Personnel at ALSA and ALS TDI have previewed the show and say that it is one of the best that they have seen. People in these organizations would certainly know how we all feel. "Live for the Moment" was shot almost one year ago and we're extremely grateful for the opportunity. We've received the opportunity to travel and make memories with our family, but most of all, to achieve our number one goal of raising awareness, interesting volunteers to help ALS families and hopefully additional funding to find a cure.

The show is ultimately about living for the moment even in the face of adversity or after a life-changing event whatever it may be. I thank God every day for a slower than normal progression, but since the show was shot, my arms and hands have become significantly more atrophied. My wife now helps me shower, dress and while I can start feeding myself, I usually tire fairly quickly and she finishes feeding me. No one understands better than us PALS the realities of ALS, but this story reaches a larger audience and encourages living each day to the fullest and as if it were your last no matter what your situation may be. Too many people wait until it's too late and may lose focus on what's most important in life (family) or on their dreams.

I am an enthusiastic and optimistic guy. I'm not saying that ALS is easy, but I certainly feel strongly that it cannot be dealt with when a negative attitude is present. I have done my best to bring awareness and resources toward a cure for us all. I'll await the full airing of the show to comment further and hope you will find it inspirational. In a TV world that is showing crap like "Beavis and Butt-Head" Or "Jersey Shore", etc. I for one support any show that brings hope, inspiration, focus and family to the forefront...

The Excitement Is Building

Well, I haven't written down my thoughts in a while, but a quick update is that we are fast approaching the premier of Live for the Moment LFTM on CBS.Jeff_Probst is now on twitter now and we have been having fun promoting the show. We just watched the short LFTM web promo and a longer 2 1/2 minute TV commercial online, they both came out great. The whole process is so exciting! Of course, keeping our eye on the ball, the entire show was done in order to promote and team national awareness for ALS. We were paid nothing aside from the opportunity to travel with our family. I guess you could say we were paid with memories of some incredible events and experiences. Being the first family for this show, over 400 hours of film was collected in which our family traveled and had so many experiences that are even shown in the final cut. I'll write more about these experiences and even post some of the pictures after the show airs. Until then, "must abide by the contract"... :-)

This was dictated with Dragon Naturally Speaking ver. 10 Pro speech software. Please excuse any "Speakos" I may have made. :-)