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
Just a place where this old Texas boy can come and vent, pontificate and otherwise let the world know what is on my mind AND allow you a place to interact with me if you so desire.
Thursday, February 15, 2018
Thursday, January 18, 2018
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
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
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