Saturday, January 14, 2012

Update on Roger and Our Family: By Julie

Dear Family and Friends,

I thought it would be helpful for me to give you an update on Roger. It has been over 6 years since his diagnosis.

He continues to have a slow progression and we are very grateful for that. However, slow does not mean NO progression unfortunately. The biggest change lately has been his speech. We have for several months been adjusting to this change. We can still understand him, but it is just getting more and more difficult. It is extremely difficult to have to say "what" over and over again in a day to a man you just don't want to make repeat what he said because it is so difficult to talk in the first place. His legs continue to be pretty strong but they are progressing as well. He recently was fitted for leg braces (AFO's) to help give him some lift in his step which will help with any slight drooping he has in his feet. We think this will make him feel more confident when walking any distances. He did just have a check up in November to see how things are going. He had a routine FVC (forced vital capacity) test. This is the total volume of air expired after a full inspiration. A healthy person's measures at 100% or more. Back in July, 2010 it was at 84% and now it is at 70%. This is actually pretty good 15 months later, but is still tough to see it go down. The doctors say that usually when a patient's FVC gets down to 50%, it is usually time for a feeding tube because the swallowing is usually effected by then as well. Needless to say, he is not looking forward to not eating.....neither am I for him.

We are doing our best to all just take this disease one day at a time, but that is not so easy to do. We're told to be proactive which means thinking ahead.

We want to thank all of you who have supported us one way or another over the past 6 years. I know that Mary has been our sort of spokesperson without being asked to be. She has gone above and beyond what I ever imagined or expected. I cannot thank her enough for driving to see us 3 times now. Her and Carli are like Thelma and Louise I call them.....always up for a road trip. I also want to thank Roger's parents again for coming out to take care of the boys while I went to Premier's National Rally back in July. That was huge and I am very grateful for them coming out here to help. I definitely know where Roger gets his do do do personality. His dad was quite busy around here, as was his mom. My Auntie Pat and Gary were also out here to visit. Gary was a huge help to Roger with several projects he was hoping to see done. I also want to thank everyone who have been able to contribute to our Childs' Supplemental Care fund over these years. I hesitate bringing this up because I never want ANYONE to feel badly if they cannot contribute. We are just as grateful if not more grateful for simply keeping in touch with us and praying for us. THANK YOU SO MUCH!

I want to address the fact that I would love to talk with all of you but can't always do so. We really do appreciate hearing from you though and even emailing us and/or leaving us messages is nice. I will do my best to call back or email back, but appreciate your understanding if I don't right away. I really hope no one is upset with me in regards to this. I want to hear about your lives too!

This journey has been and continues to be a daily struggle mostly for Roger of course, but all of our lives have changed drastically and we really are trying to do our best with all that is happening to our family. Being diabetic is also an aspect of our lives that I am trying not to neglect.

I truly hope people don't stay away from us because they think we have enough on our plate or maybe because it is just too painful to hear about what is going on with us. Trust is much more painful on Roger's end. But here is what is most amazing.....ROGER HAS THE GREATEST ATTITUDE 99% OF THE TIME!!!!!!! He absolutely puts me to shame! I am learning how to be a caregiver...not just a caregiver, but a good one. There are times I basically go through the motions. This wonderful man can't help that he needs so much help (not at all his fault he has this) and being the most important word here. Trying so hard to give care with care is something I didn't think would be difficult but actually can be at times. Roger does need me to feed him, shower him, dress him, undress him, brush his teeth, shave him, clip nails and get him what he needs/wants. We love each other and will continue to be here for each other. The boys are strong, but it does break both Roger's and my hearts to see them live through this. It really is so unfair and we can't change it so we do try and see the good that does come from it. They are compassionate boys who certainly know how to persevere through rough times in life. As their mother and father, we just never imagined they would have to persevere through anything like this. None of us did. Please pray for patience on my part and for each of our parts in our family. Connor is 15 now, a freshman in high school and is such a good kid who loves his dad so much, but can get agitated once in awhile. After all he sees his mom get that way sometimes too. Brandon is 11 now, a 5th grader and is also such a good boy who thinks the world of his daddy. He too helps him so much. He needs prayer for his worrying about daddy falling. He has seen this happen several times. It is just part of what happens to people who have ALS.....another aspect we need to keep an eye on and make changes when necessary. They both help me help Roger and I don't know what I would do without their help. I am so grateful to God for their strength. He gave us 2 amazing young men!

I continue to work my business with Premier and am super grateful for all it has done for me and our family. Because of Premier, I do get to stay home and take care of Roger during the day and not try and figure out how to do that while going to a regular day job. The boys do help here when I go to my shows. Again, looking ahead, there will need to be help to come in at some point as the care for Roger increases....but back to one day at a time.

We are looking forward to all going on a cruise I earned with Premier this coming March. We are excited to bring the boys this time. What a total blessing!

I once told Roger that I really didn't think he would be able to handle this disease very well (who could honestly?.....not many) because of how he is such a doer and likes to keep busy and moving. I then said that he has just been so strong through it all. His reply to me was that it wasn't him at all, but it must be because of God. That was huge to hear! Thank you God! He certainly does work miracles. We all just have to open our eyes and our hearts to recognize them when they happen. Who knows.......maybe we will get a miracle and Roger will be cured (along with the thousands of others living with this heinous disease). If that does happen, get ready for the biggest celebration on a sunny beach that you have ever been to!!!!!!

If you could please forward this out to others you think might want to get an update on Roger and our family, I would very much appreciate it.



Friday, January 06, 2012

Stephen Hawking Turns 70 This Month, Baffles Lou Gehrig Researchers

Stephen Hawking

Stephen Hawking will turn 70-years-old on Sunday and while that milestone occurs for millions of people around the world the achievement is something of a miracle for Hawking.
Diagnosed with Lou Gehrig’s disease when he was only 21-years-old and a student at Cambridge it was believed he would only live several years before succumbing to the disease that quickly cripples and then kills those who suffer from it.
Realizing he only had a few years left to live Hawking quickly began examining the universe and all it has to offer, become one of the most well known and respected astrophysicists the world has ever known.
The director of the Motor Neurone Disease Care and Research Centre in London recent told the Associated Press:
“I don’t know of anyone who’s survived this long.” while calling his progression ”extraordinary.”
With his disease in tow Hawking has never really slowed down, his book A Brief History Of Time was released in 1988 and has went on to sell more than 10 million copies worldwide. Despite being paralyzed in a wheelchair Hawking used a computer and twitching with his right cheek to communicate, he even went on to become the Lucasian Professor of Mathematics at Cambridge University, a position he just recently retired from.
One thing Hawking has never been able to master in our universe? Women, the one entity he still calls a complete mystery.
As a personal hero of mine I have to say that it’s quite fitting that a man who has fought with parts of the universe that baffle most people have himself baffled the very people studying him and his debilitating disease.
Are you a fan of Stephen Hawking? Share your favorite subject matter he has covered.
In the meantime enjoy the full screening of Hawking’s “Curiosity” video:‘

Tuesday, January 03, 2012

Why I think buying music the new digital way is dangerous…

Once again, a topic I raised on Jan 3, 2012 is back in the blogasphere...
Apple and Amazon refused to comment.
Be sure to put your user name and password in your will. Now this extends to your book library too!

Greetings! This is another one of my tech reminders, this time to convert any/all DRM music files you may have bought NOW to avoid losing any of your music. I want to make sure you can continue to enjoy all your music for as long as you please.
DRM stands for digital rights management (basically copy protection).
Here are a few examples of how things change if your not prepared:
  1. On November 7th, 2011 Rhapsody/Real Networks quit supporting DRM music files you purchased before July 2008. These songs will NOT continue to play after November 7th, 2011.
  2. Prior to 2009, Apple's iTunes Store utilized the FairPlay DRM system for music at $0.99. Apple did not license its DRM to other companies, so only Apple devices could play iTunes music. Currently the iTunes store does NOT have any DRM, but many songs can cost $1.29 each. (presumably to cover piracy lost profits)
  3. Napster offers a subscription-based approach to DRM alongside permanent purchases. Users of the subscription service can download and stream an unlimited amount of music transcoded to WMA while subscribed to the service. But when the subscription period lapses, all of the downloaded music is unplayable until the user renews his or her subscription.
  4. Wal-Mart Music Downloads charges $0.94 per track for all non-sale downloads. All Wal-Mart, Music Downloads are able to be played on any Windows PlaysForSure marked product but they rarely play on other players, like SanDisk’s Sansa player.
We used to buy our records, tapes and CD’s, now you never know what will happen with your music collection. Its no longer hand-me-down, inheritable or even something to garage sale. The industry has got the best deal over us. Unless you have made non DRM CD burns of all your music, (not just a .mp3 or .aac copies on CD), you may be out of luck. I strongly recommend you back up these tracks to both formats to ensure you can continue to enjoy your music. Each generation has to repurchase their MUSIC COLLECTIONS if we’re not careful…
Or, just buy the CD! Smile