A Day In The Life. . .

Our life is definitely different these days. It seems like there is either a “fight” as I like to call them or just something we need to think about or do to prepare for the what Alpha Lima Sierra will do to our family.

The “fight” is the push to have things done that you would hope would be easy. One item which really was not a fight at all, but a matter of getting all the necessary paperwork was getting the big he approved by the VA for 100% disability. Now, while it was not a fight for us, I know previous veterans did have to fight for the rating, so Thank You to those that paved the way for us. Another one, and an ongoing one, is getting the big he retired. I should be more specific, getting him retired correctly so he receives the maximum pension he is allowed/owed/deserves!

Other things we have going on is getting quotes for the home modifications we will need and looking at proposals, the big he is looking into making our home “smart” and looking for a new vehicle that can be modified later for wheelchair accessibility.

It is a lot for us, but I know it is small potatoes compared to others. There are so many folks whose journey is much farther down the road then ours.  There are so many that may not have the support system we have or the perseverance that the big he and I have. We have had to survive other things and we have learned that sometimes you just have to keep the train moving despite the big, blown-up bridge that spans a ginormous gorge!  You never know, maybe we will get up to 88 miles per hour and miss the crash off the tracks. [Did you catch the reference from my youth?]

The thing I know that keeps me going is my faith. I listen to Family Talk on XM 131 to and from work. I drive about 45 minutes plus or minus a few depending on traffic. So I usually get to hear two talk shows or portions of them M-F. The other day one of the pastors said something along the lines that being a Christian is not a guarantee that life here on Earth will be easy. How true is that! Being a Christian means knowing God loves me and will be there for me during the most difficult times as He is in the good times. Being a Christian means knowing that there is an eternal life where Alpha Lima Sierra does not exist gives me the perseverance I need, that the big he and little he needs to stay focused on us as a family and to stay focused on our faith. That is what will get us to our 88 miles per hour and deliver us safely to the other side of that scary blown-up bridge.

His update: So far things seem to be the same as last update. His hands continue to atrophy and get weak (left and right) and his legs get tired more easily with walking. He continues to really enjoy his nightly massages. It’s now a little like Pavlov’s Dogs. The clock hits 7:45 pm and he is ready for his massage turning off lights, the TV, letting the dog out to go potty…He is on the new massage table by 8:00!

I just Love, Love, Love that man!!!

Love to you all!

The She

 

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The Yellow Rose of Texas

 This weekend our family went to our very first Air Show. The purpose was for the big he and the little he to ride in a B25 Bomber-The Yellow Rose which is maintained by the Commerative Air Force in San Marcus, TX. What a beautiful plane! The boys have talked about doing this for several years. Those two are huge military history nerds. We just never found time, always something else to do  like run errands or clean the house. This Alpha Lima Sierra has caused us to re-evaluate our lives and do those things, you know the memory makers, and not just say we want to do them. So, flying in a WWII bomber was placed on the family bucket list and we can now cross it off!  Trey Tom & Yellow RoseWe were able to ride the Yellow Rose at the Corsicana Air Show. It worked out great for us that it was in Corsicana as we not only got to do this but visit with my parents that live in the area.

The boys had the biggest smiles when they climbed down from the plane after their ride.  We would not have done this if it were not for my very good friend and mentor here in Austin. We also traveled this weekend with family and that made our memories even more special. We stayed with my parents and got to visit, do some fishing and just relax at the lake. So to everyone that made this weekend special for us…Thank you, Thank you, Thank you. We are making memories that I know will get all of us though some difficult times.

The one thing that this disease has taught us is that you can’t  get stuck in a rut and think there is plenty of time to take care of things, travel, see family or friends and most importantly let someone know you love them and appreciate them. I look back over this past year and regret the time wasted. I mean the arguments that solved nothing, the wasted energy in being mad or anxious, and putting things off b/c I just did not feel like getting out. In my family, two of my siblings lost their spouses suddenly. They did not get to say the things that needed to be said. I am not going to let that be us. And you should not let it be you. It is so true that tomorrow is not guaranteed. In our case it was a diagnosis of Alpha Lima Sierra that reminded us our time is limited. We are not going to waste it on staying mad over petty issues or trying to prove the other is in the wrong. We no longer have time or energy to waste on the BS we make up in our minds or blow out of proportion. So to all of our family and friends, know we love you dearly.

My loves update: His hands are still getting weak and his legs are still getting tired. We are trying multiple supplements with most of them having neuro-protective properties. We are looking at changing our eating style. Removing as much MSG as we can. The one drug that is given for this disease is a glutamate inhibitor and well what does the G stand for in MSG…Glutamate.  We were also given the book Grain Brain (thank you OCG) which has given us food for thought. Along with all this, we are looking at reducing the stress in our lives. Kinda hard when you are facing the S*@! we are but we are trying. It means trying to laugh more and just letting go of the small stuff (as much as we can anyway and with a little help from our friend xanex).

We also continue to place our needs in the Lord’s hands. We continue to ask for healing of the body. We ask that a cure or management for this horrific disease is found. We know He has us and ultimately that is what will see us through.

Now off to give my love his nightly massage.

Love to you all!

 

 

National ALS Advocacy Day

Today is National ALS Advocacy Day. I encourage everyone to email your US Congressman just like I did. Let him/her know that funding and research is much needed. Here is my letter if you would like to use it as a template to your representative. If you are in Texas you can Google “who represents me” and find your representative.  Love to you all.

The Honorable John Carter

I am emailing you to support the National ALS Advocacy day which is today, May 10, 2016. I write as a wife of a person with ALS. I write to you because this disease is taking my husband and my son’s father. This disease is taking me along with it. My future will no longer be with my husband of 26 years. I no longer get to wonder how we will be when we become grandparents; there will no longer be we. That is because ALS is 100% fatal. It is an UNDERFUNDED disease and THAT is UNACCEPTABLE! Barriers to funding, research and assistance need to be removed. This disease has only ONE drug approved and it will only extend life by one to two month. UNACCEPTABLE!

I am asking you to support all legislation that will allow for increased funding for ALS research. I know that you voted against the 21st Century Cures Act, which is why I want to stress the importance that your position with regard to drug research and develop needs to shift. You represent me. You represent my husband. You represent many people in Texas that are for increased funding and accelerated development of drugs for this horrific disease. We are doing EVERYTHING we can but there will be no stopping ALS unless a cure or management of the disease is discovered.

Please be aware and support with your vote the following:

  1. Appropriation of $10 million to continue the National ALS Registry at the CDC and Prevention- enactment of P.L.110-373 Funding for FY2017 to continue the registry, fund-related ALS research and help people with ALS enroll in the registry;
  2. My husband’s diagnosis of ALS was most likely due to his service in United States Air Force. Please know and remember NOT ALL CASULATIES OF WAR COME FROM BATTLE, THEY CAN HAPPEN YEARS LATER! Appropriation of $10 million to continue the ALS Research Program at the DOD The current level of funding leaves more than 95% of submitted projects unfunded with opportunities to discover and deliver a treatment to veterans will be lost leaving them with no effective treatment;
  3. Senate Health Innovation Package/Enact the Dormant Therapies Act. Remove the regulatory barriers and limited incentives to pursue innovated new treatments. Please support the Dormant Therapies Act;
  4. Preserve Access to complex rehab technologies and work to have it implemented without any more delay; and
  5. Waive the five month waiting period for social security. ALS patients do not have 5 months to waste waiting on SSI benefits to be paid because this disease moves quickly and does not wait to ravage a person with ALS or his/her family.

You may contact me at anytime to discuss how this disease “that happens to other people” has impacted my family. We are now “other people”.

 

 

Hope

Let me introduce myself.  I am Stephanie.  I have known Tom and Lara since our days in Guam together.  Lara has given me the honor of helping her with this blog and up till now, I have just helped out with some formatting stuff and basic blogging tips.  Today I am posting.  Scary!

So, in honor of Tom and this incredible family, I have started a fundraising page for ALS.  This is not a fundraiser for the family, but a fundraiser for research and advocacy for ALS.  The best way to honor the family is to give on their behalf to find a cure.

Please join me in doing that.  You can click below to give.  No amount is too small.  Thanks in advance for helping me to honor Tom and Lara and Trey!