3 months out

Well, one thing I have learned is that every new day brings a new set of issues related to my ALS. This week has been a particularly bad week as I have only made it to the office 1 day out of the 4 so far. I am thankful for my PM Libby and our GM Dan who have graciously allowed me to work from home when needed. Previous to this week I think I was averaging 1 day a week working at home. Being that this disease is progressive, I do not see it getting any better as time goes by.

This week started out with a Compensation& Pension exam where a Nurse Practitioner went over the diagnosis, made some strength observations of the arms and legs to verify the established measurements. As expected my strength is declining overall. Tried to open a bottle of champagne to celebrate Valentines day last night and it was all I could do to get the cap off. Anyway the results from Monday's C&P exam were sent directly to the Regional Board in Columbia and it should be a very quick turn around for them being that they have already reviewed the record and were just waiting on exam results.

For some background I though I would share some history of the VA and it's recognition of ALS as service connected...Up until 2008 the best you could hope for is a 30% disability rating for an ALS diagnosis. This was, until a study came out that showed the veterans were twice as likely to be diagnosed with it as the civilian population. Once this realization hit the decision makers it did not take long for them to revamp their process and declare ALS as a presumptive service connected disability with a 100% disability rating.

I urge you to support a group called The Compassionate Care Group. There are state chapters in every state and they advocate for the legalization of medical marijuana which has been proven to help treat so many diseases. I have no desire to put massive amounts of pharma chemicals in my body to control joint and muscle pain and a host of other symptoms that come with ALS. This plant has been used as medicine for thousands of years all over the world until 1937 when the federal government realized they were missing out on tax revenue and placed a tax on it. Did not take long for the sale to move underground to avoid the new tax and in true government fashion, they made it illegal because they couldn't control it.  I applaud the states that have stepped up and passed legislation to legalize it and hope the trend continues. If your state has not moved to do this, contact you representatives and urge them to introduce and/or support existing bills that will do so.

Until next time, stand tall, press on and never ever ever give up.

#ALSSUCKS   #THEBATTLEISJOINED

When the final judgement is handed down

Oh what a wild ride it has been. Grew up in West Texas among the cotton fields and oil wells that make up virtually all of the panhandle. Been through a lot in my life over the years, traveled all over the world, married the girl of my dreams and had two awesome kids that are now parents themselves.

On December 5th, 2017 I went in for an EMG. When everything was said and done the diagnosis was ALS. Onset Bulbar ALS to be exact. Life expectancy for this type ALS is 3-5 years. Best we could tell I was already 18 months into the ticking clock.

While there are several promising trials going on, currently there are only 2 approved drug therapies for treating ALS. Neither will help cure it, they both just prolong your life a few months. They have not prescribed either one for me yet. I have taken the initiative and added CBD oil to my supplements. 

One of the causes I have become involved with is the movement to get the state to approve medical marijuana which has a long term proven record of greatly helping the symptoms of not only ALS but many other systemic diseases.

There has been a lot of bad press about the VA Medical system in the last few years and while I admit it has some issues, the new head of the VA is taking a hard stance against sub standard performance by certain VA medical centers and started firing people that before were just moved around to become someone else's problem. I am cared for at the Ralph H. Johnson VA Medical Center in Charleston, SC. My ALS Clinic team is staffed by Neurologists from the Medical University of South Carolina(MUSC) which is one of the premier teaching hospitals in the country.

This diagnosis carries with it an automatic 100% disability rating by the VA. This was not the case up until 2008. You would be lucky if you could get a 30% rating and then only if you could PROVE it was service connected. In 2008 a study revealed that veterans were twice as likely to be diagnosed with ALS as the general population. This prompted a move to get the diagnosis the recognition it has today which is an automatic assumed service connection  and a 100% disability rating.

The VA has really stepped up to take care of veterans with ALS. Disability claims are fast traced and usually are processed in 30-45 days as opposed to 8-12 months for normal claims. The VA will also give you around 6K dollars for building suitable wheelchair access to your home. They also give you 20K for a vehicle suitable for modification for driving by a handicapped person. They pay for the modification too. Most importantly they give you close to 80K for modifications to your home to make it suitable for maneuvering a powered chair through including widening doors, converting a bathroom to a roll in shower, raised toilet and pedestal sink that you roll a wheel chair up to and do your toiletries.

I have representatives from the Paralyzed Veterans of America, The ALS Association and a wonderful ALS Clinic nurse Aletia that has shown tremendous compassion and support so far.

On Jan 24th I go in for my first ALS Clinic day where I see all the specialists on the ALS Clinic team. This includes Neurologists, Pulmonary specialists, dietitian, Occupational Therapist, Social Worker and even a Psychiatrist to help you through the rough spots.

Bottom line here is I have been in many battles in my life from my 17 years in the Navy to my battle with cancer back in 2005. I survived them all. This one might be a little tougher to beat but just because the judge has sounded the gavel and pronounced his sentence, I have never given up and I am not about to now. With faith in my Almighty God and the support of friends, co-workers and family, I will fight until the last breath I draw.

Til next time. #ALSSUCKS #THEBATTLEISJOINED

No I did not die

I know, I know I said I had a lot to say nearly 2 years ago. Truth is my computer crashed shortly after I posted that and I lost all my bookmarks and just was able to find the site again. Sorry excuse I know but it is what it is. Will crank it back up here shortly as soon as I get the itch to blow some steam again. See ya soon.

80 pounds and counting

A little over a year in the Take Shape for Life program and I have dropped 80 pounds. Cannot begin to tell you how much of a difference it makes in how I feel. From my energy level to how well I sleep.

I am working on a major writeup for this blog concerning the happenings of this time. Stay tuned in the coming days as I hope to wake a few sleeping sheep up from the willful bliss.

50 pounds down and still counting

Well this adventure started on March 27th. Now on August 5th I am right at 50 pounds down from the starting weight. But that is not the only change I have been experiencing. There is so much more to getting healthy than just taking off pounds. If you are tired of being tired I highly recommend you contact a dynamo young coach that has help me along my way, Hannah Richardson. Contact her at hannahrichardson24@gmail.com. You deserve good health too ya know.

14 Weeks and 35 pounds later

Some of you are aware that this past March I had my semi-annual checkup with my doctor where she told me that I was borderline diabetic and put me on meds. Well she has been telling me I needed to get some of this 300 pounds of weight off of me for awhile. You know how every once in awhile you have something that makes you say enough is enough? Well this was it for me.

Shortly afterward I was introduced to a plan called "Transition for Life". It focuses on a total change of lifestyle, from what and how much you eat to attitude, activity level and everything in between. I was introduced to a young dynamo name Hannah who would become my "Coach". Thank God I found her, she is a very special young lady. Well as the title suggests I have had some wonderful success with this program. Demoting myself from 3x to 2x and most of my pants are falling off of me too.

15 more pounds and I will go into a period of maintenance for a few weeks and then it is back to work and headed for 220.

Bottom line is if you have tried and tried to take off unhealthy weight and failed time after time give my coach a shout and see what she can do to help you get healthy again. She can be reached @ hannahrichardson24@gmail.com. 

Letter from Dimitrios

TO: Whom It May Concern FROM: Dimitrios Karras, CEO Ares Armor SUBJ: Memorial Day DATE: May 26, 2014

Today, we take time to honor those who have paid the ultimate sacrifice in defense of our once great country. An ungrateful land filled with recitals and incantations that have long lost their meaning. A land where those very same heroes who fight in her defense are labeled as domestic terrorists. Today, take time to really think about the sacrifices that were made. Take time to imagine what it's like to be covered in the blood of one of your brothers. Imagine picking up the torn pieces and entrails of his body, one by one, and stuffing them into a sleeping bag so that at least his body can make it home to be buried by his wife and two daughters. To pick up the small bible that he carried in his pocket for luck and not be able to turn a single page because his blood has drenched and stuck them together. Take time to really ponder what it is like to dream every night of the blood dripping off your hands into the sand as you watch a young boy, barely in his teens, die in his father's arms. Take time to wonder at what it feels like to come home and explain to a friend's mother the events surrounding her son's death, to look her in the face and watch her tears as she hears your story. Take time to really think about wiping a friend's brain matter from your shirt. Feel helpless, as you learn of your friends committing suicide one by one till the deaths of those who have taken their own lives after the war overtakes the number of those who died in the war. Take time! Really take time to think. What was it all for? Our brothers, our sons, our friends and our loved ones, their corpses even now rot in the land of ungrateful wretches such as us. We have allowed their sacrifice to be mooted by an overbearing tyrannical government that has enslaved us. What hubris is it on our part to thank a veteran for their service while we sit by and watch the very thing that they fought for be trampled and trivialized? The very word freedom has become a meaningless cliché used by politicians to further their own political agenda! How dare we. How dare we. Mourn your dead land of the free! Mourn your dead! These sacrifices are not trivial. These men did not die in a pleasant romantic way. For what? For our own people to give away the very thing that could possibly justify their sacrifice? How selfish and self-righteous are we to recite the pledge of allegiance as if it is merely words without meaning? How many of us have taken an oath to uphold and defend The Constitution yet we sit back and do nothing as our Constitution is ripped asunder?

To my friends in the Federal Government: You have sworn an oath to The Constitution of The United States of America. Perhaps, you should do some real soul searching on who your master is and what your actions really are. If you are ordered to do something that is unconstitutional, it is your duty to refuse. To those I saw die in combat: I promise you, I will not forget you. I will do my best to honor your sacrifice. I will remember my oath, I will remember. Dimitrios Karras CEO Ares Armor