Veteran's Awareness for Lou Gehrig's Disease                                   

Hey, I'm still kicking. Well...not really kicking, but you get the point.

Remember the Code.  I am an American, fighting for my country and our way of life.  I am prepared to give my life in their defense.
You're not done fighting!


24 May 11 -  Our local WAAY31 ABC News story. Jump to Newest Post

Vision

Spread the word about a law, 38CFR Part 3, signed 23 Sep 08, establishing presumption of service connection for ALS and directing the VA to immediately process the claims of veterans diagnosed with ALS. The VA concluded that servicemembers who served in the miltary are at a significantly greater risk to develop this disease, as opposed to civilians. They are also required to make a public announcement, but have yet to do so. This law establishes a presumption of service connection for anyone serving, or who have served in the military, and have been diagnosed.

I have written President Obama and the VA Secretary requesting help, as the VA has continuously made it almost impossible to receive timely processing of claims. The response I received from the President was a kick in the teeth; thanking me for my concern w/out addressing them and pushing nat'l health care.

When I  submitted a claim for a backup power home generator, "We only approve those for patients with respirators."  They have no clue about ALS. The VA wanted to know how close the Fire Dept was; to go to when power is lost during storms/tornadoes. And the govt. will provide healthcare to our entire country?


FOX FOUR is a term used by combat aircrew to indicate we shot down a bandit.  Hence, the drive for shooting down Amyotrophic Lateral Sclerosis (ALS).


My wife Robbin, and Scott (Scoob), a dear friend from when we flew as Gunner's on B-52s, started a drive to get this idea rolling. We have been fighting this disease for 6 yrs this Dec 10; with the love and support of my wife of 17 years, our 7 year old son, family, and friends.


Also known as Lou Gehrig's disease, ALS is a terminal, neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms affect difficulty in speech, swallowing, or walking.

Lou Gehrig first brought national and international attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS. Most commonly, the disease strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time.


Thanks to Scott's racing connections, Team Scoob Off Road Racing is trying to garner fellow racer's and sponsor support for this cause, and will be running the Fox4ALS logo. He's still serving our country as an aircrew member on the E-4B, the National Airborne Operations Center for the President, Secretary of Defense, and the Joint Chiefs of Staff.

I will post here as I come across new information.  Please contact us using the link at the bottom of the page if you have additional info/tips. Help spread the word. If you haven't done so, get in touch with your local ALS Association Chapter. They have many resources, including support groups and agency contacts.


Diagnosed Jul '06   Started showing symptoms Dec '04.   Medically retired late '05.

Claims Process Tips

These are the processes that have/not worked for me when filing various claims. Also visit here for further resources. Remember, these are just recommendations I am making. You are ultimately respnsible for final decisions.

1. I recommend filing your claim through the DAV. They will assist you every step of the way and will track the status of your claim better than you can. They can also be your legal representative.
2. If your claim stalls, and it probabably will, contact your Congressman. Don't mess around. 
3. Use your local news media, if necessary. It took one year to have my adaptive housing claim processed. The VA is so undermanned that even Congressional Inquiry wasn't helping. After I went to the news, my claim was mysteriously processed.
4. Consider filing for Social Security Disability SSD. I was lucky because I filed and was approved the first time. Also, even though I was still in the military when I filed, I was back-payed disability pay for the time I was on medical leave which was about one year. You can submit online. If you receive
disability from the VA, it will help support your Soc Sec claim.
    NOTE: After collecting SSD you become elligible for Medicare. If you have TRICARE and you decline Medicare Part A or Part B, you wilI lose TRICARE. We have Congress to thank for screwing us on this one. I recommend taking Part A and B. Your family will still have TRICARE PRIME, at the family rate of
$230/yr, if enrolled, and you will switch to TRICARE for Life. So, because we fought for our Flag and Freedom and contracted this disease, we are forced to pay an extra $1400/yr for medical insurance vice a healthy vet only pays $
430/yr.

I was originally medically retired at 50% and didn't receive 100% until I was diagnosed 10 months later and rebuted my original claim. Then I filed for further benefits like adaptive housing grant and vehicle grant. Because the VA doesn't come straight out and tell you what you're entitlled to, use the DAV, PVA, or Still Serving Vets. But you should still do a lot of research yourself online. Because of the pace of this disease, I strongly encourage you to consider filing for benefits before it's too late.  I was able to still walk Oct 07 when I filled for adaptive housing. But I knew it wouldn't last long. I was in a wheelchair by Apr 08, still waiting for the adaptive housing grant. This was finally approved Oct 08, after a few Congressional Inquiries.


NOTAMS


24 May 11 -  Here's the story our local ABC News did; thanks to Mallory Hoff for an amazing job. 37 months total of waiting for VA claims. Deplorable. Congress can order MLB players to testify (circus), bring Big Oil, and declare war (used to), and enforce total control on us, but can't hold the VAs feet to the fire? How well do you think Nat'l Health Care will work? Our WAAY31 ABC Story

10 Apr 11 -  Fox4ALS.com is now on Facebook.

16 Oct 10
I was contacted by a fellow Vet (thank you Michael) with ALS whom told me about the VA Vocational Rehabilitation Program. They do alot more than just help you find a job. They also help with independent living. If only the Birmingham VA Rehab informed us about this program earlier. Contact your Regional VA to find out where your VA Voc/Rehab Office is. Call and request an Independent Living Assessment. If eligible, you can receive items to make life easier; lifts, door openers, ramps, special chairs, adjustable beds, bidets, etc.

We had a counselor help us immediately after we contacted the Huntsville VA Voc/Rehab office. The process is easy; so much so, it doesn't even seem like it's the VA. They are really there to help.If only the Birmingham/Montgomery VA was this efficient and professional. 

Thank you Pat. You and your office have really made life easier for us.

Huntsville VA Voc/Rehab
400 Meridian St.
Suite 101
Huntsville, AL 35801
(256) 533-2507-x222


31 Dec 09
6 months ago I submitted a claim for a backup generator. The VA has finally decided to conditionally approve a SMALL home generator, but only after I am on the ventilator. They still don't understand what ALS does! I submit claims proactively because this disease keeps taking away abilities. If you wait, you lose. A small generator = not sufficient to power heating and A/C, powerchair, and voice computer, along with a ventilator. Furthermore, it means an additional 2-4 mnths of waiting to receive the backup power source when I need it the most. Then we're forced to go to the hospital, which means less time with my family. I know this because I am still waiting (going on 3 mnths) for the speech computer that was approved back in Oct '09.

06 Oct 09 - The VA is supposed to contact Veteran's who qualify for adaptive housing grants. Even if you don't have to use all of it, it can reduce your mortgage. This grant is worth $63,000. Another little known fact; you may qualify for reduced property tax. Call your County Tax collector.
You can also apply for $90,000 Mortgage Ins; VMLI Application. Adaptive Housing FAQ


21 Aug 09
-  I sent a letter to the President and Sec VA addressing all of my claims, along with concerns from other veterans. The response I received yesterday from the WH was such a kick in teeth.  The letter thanked me for writing, then immediately proceeded to talk about Nat'l Health Care reform. It never addressed the issues. They can't even take care of us veterans. How does the gov't take care of an entire nation?


About the claim I submitted in May, requesting a home generator, "We only approve those for patients with respirators."  The VA also wanted to know how close the Fire Dept; to go to when power is lost.
They want justification for the respirator. They just don't get it.


If you want to send a message, use the following instructions, fax number, and e-mails.


One of the WH staff will make sure the letter gets into the appropriate pile for response. Given the huge amount of mail/e-mail the President is receiving, it still may take some time for a response, but this route will at least take out a number of steps.
Include the following:  Don't forget to e-mail the VA Sec.
 
eric.shinseki@verizon.net    jacqueline.colli@va.gov    robertk.smith@va.gov
 
FAX a short letter to Student Mail/Adult Mail VA Concern at 202.456.2461

STATUS: CRITICAL

Dear President and Mrs. Obama,
 
I am a Gulf War Vet, husband, and father of a 7 year old. I have combat-related ALS. My fellow veterans with ALS could benefit immensely from the following VA actions:
 
1. Flag and immediately process claims of those diagnosed; IAW 38CFR Part 3. Stop the run-around.
2. Send letters to all veterans; what to do if diagnosed, and what the symptoms are. List all benefits.
3. Raise awareness for claims approval. Being diagnosed with motor neuronopathy is a form of ALS. Also, giving someone 70% disability means they have to re-apply for 100%. ALS is progressive.

4. Allow life insurance through OSGLI if past the OSGLI enrollment.

5. Automatically make ALS veterans eligible for Traumatic OSGLI.

6. Increase the Vehicle Grant amount; currently $11,000.

7. Increase the Mortgage Insurance associated with the Adaptive Housing Grant; currently $90,000.

Add military/VA problems background info here.
 

Please give these critical issues your immediate attention.  My fellow veterans with ALS and I are wasting precious time with the VA when we could be spending it with our families. ALS is a progressive disease, and our time is short.



19 May 09 - The VA provides an additional $25,000 entitlement towards our handicap van. This is great. The big screw-up with this is after being awarded full SMC, SHA, and the vehicle grant, I have to now prove I am worthy of the $25,000 entitlement. It seems my neurologist's notes on my being paralyzed and the fact I'm in a powerchair isn't substantial proof for a lowered floor van. To get this entitlement you have to make an appointment w/ Rehab (a 4 hr roundtrip for us) to verify. Hopefully they will do a phone appointment.

28 Apr 09 - I sent letters to the President and VA Secretary last week. I was contacted by the VA Regional Office advising me of the approval. The VA made SMC retroactive to Oct 07. Contact me for letter details to the Pres., e-mail addresses, and fax numbers if you want to do this too.

15 Apr 09
- I am so fed (no pun) up w/ how "our gov't" is dragging their feet on this. I just recvd word yesterday that the VA wrongfully approved my SAH/SHA and Vehicle Grants. For the last 4 mnths, I have been waiting for the VA to approve my SMC. Come to find out, you need approval for SMC before getting approval for the grants. The PVA told this to the VA in Jan. The VA just responded in kind. This just goes to prove how they don't care. They seem to be immune to even Federal law, which directs the  immediate processing of ALS claims. This goat rope is FUBAR! This should have been approved back in Oct 07, with the grants.

I have contacted my Senator.

13 Apr 09 - Vehicle Grant correction:  The $11,000 is a 1 time payment toward the purchase of a vehicle.  It can not be credited towards a vehicle you already own.  The VA pays for ALL of the adaptions necessary to a car or a wheelchair accessible van.  They will only cover the full cost of NEW adaptions and conversions.  You may use the $11,000 toward the cost of a chassis, but the conversion should be new to reap all the benefits.  See Mobility Freedom.

Contact your congressman and ask to increase the $11,000 grant; if awarded 100% disability, 100% of the vehicle should be covered.

26 Mar 09 - Open for Question. I just heard about this and I think this is an excellent program. Ask the Whitehouse questions and vote on submitted questions.  The first round is today at 1130a ET. There's a section for Veterans.


3 Feb 09 - If you are diagnosed after leaving/discharged from military service and didn't continue SGLI  to VGLI, you are not eligible to enroll.  There should be a provision allowing a veteran in this situation, to obtain a 250K/400K policy, since this disease is presumptive. This should be in addition to the
SGLI disability extension, automatic Service-Disabled Veterans Insurance, and Mortgage Insurance offered through the SAH grant.

Furthermore, a veteran diagnosed should qualify for Traumatic Injury Protection under SGLI (TSGLI); a 100K payment. Being diagnosed with a terminal, untreatable disease, caused by military service, is traumatic. I addressed both issues with my Huntsville ALS Chapter. You should contact your chapter, the DAV, and PVA.


30 Jan 09 - Whatever portion of the SAH Grant is not used is automatically applied to the backend/principle on your mortgage. ie. You use
$30K of the $70K SAH Grant for home mods. $40K is deposited into your Mortgage, reducing it by $40K.

16 Jan 09 - You can include the following items in medical deductions when filing taxes
: electricity required to charge powerchairs/lifts, home mods, and Medicare insurance premiums.

8 Jan 09
- Special Monthly Compensation - This is an additional entitlement awarded for loss of use of your extremeties and can range b/w $3500 - $8000. Usually awarded in combination with SAH/SHA/Vehicle Grants. In my case, I was not awarded when I received the SAH/SHA Grants. 


13 Dec 08 - DAV Update on Gulf War Illness. Congress has agreed to fund research and admits service member exposure to neurotoxins and numerous disease occurences.

21 Nov 08 -  Life Insurance - Aside from making sure your medical is taken care of, this is the most important. I highly recommed converting your SGLI to VGLI; unless you were able to get Life Insurance through a company like ASMBA before you were separated or retired. There are multiple insurance programs through the VA: VGLI, SGLI disability extension, Service-Disabled Veterans Insurance, Mortgage Insurance (SAH grant).


18 Nov 08 - Vehicle Grant - This grant is used to apply $11,000 toward modifying a current vehicle or it can be applied toward  the purchase of a handicap accessible vehicle. 

I filed in Jan 08 and was not approved until Oct 08. This one fell through the cracks too.
After advising the VA that I would be going to the media, I still did not get a response for 3 weeks. The day my interview aired on TV I was miraculously approved.

 17 Nov 08 SHA and SAH Grants  - These are adaptive housing grants worth a combined $72,000. They are for making modifications to your home, ie replacing carpet, widening doorways, handicapped accessible showers, etc.

I filed in Oct 07 and was not approved until Oct 08. I called the VA in Jan 08 and was told it was still being
processed. I contacted my Congressman after being told the same thing again in Mar. The congressional inquiry started things rolling, but later stalled again. The VA then contacted me in May telling me I had to go To Birmingham for a medical appointment to prove my condition; after being diagnosed by the VA. In my condition, a 4 hour roundtrip would not be easy and asked if I could have my Dr provide the info they needed. They told me no. I contacted my congressman, and later that day the VA allowed me to use my own Dr.  Then to top it all off, I was told in Sep that my application was lost. I later found out this meant my application was buried at the bottom of someone's desk. After advising the VA that I would be going to the media,I still did not get a response for 3 weeks. The day my interview aired on TV I was miraculously approved.

A little known fact - Once you're approved for SAH you're eligible for Mortgage Insurance through the VA.This will pay off $90,000 on your mortgage. Call the VA 800-827-1000.

15 Nov 08 - If you haven't already submitted a new claim after being diagnosed, do so immediately through the DAV. You are entitled to 30-100% disability because of the new law.




My Background


                                                                                                                                            Like father like son.         

I met my wife at my first assignment.  She (then girlfriend) stuck by me when I was deployed during the war. I proposed shortly after returning. She is the most loving, caring, and beautiful woman. We have been fighting this disease for 4 yrs this Dec 08, with the love and support of my wife of 17 years, our 7 year old son, family, and friends. I was medically retired from the USAF after 18 years, in 2005, due to undiagnosed neurological problems and was later diagnosed with Lower Motor Neuron Disease, a form of ALS, in Jul 06.

My military background:
My Ops experiences consisted of 6 yrs flying on the B-52G as a Defensive Aerial Gunner and Combat Flight Instructor, and as a Flight Engineer on the MH-53J.  I participated in Desert Storm, with 154 combat hrs.  Highest decoration: by Act of Congress, is the Distinguished Flying Cross.

My Space Operations experiences consisted of 12 yrs with Missile Warning/satellite detection and tracking using the Phased Array RADAR, and flying (command and control) the Defense Support Program Satellite Constellation and Space Based Infrared System.


It's very important to keep yourself/mind energized and active. I started a new hobby of weather reporting and spotting, since I can't really use my hands anymore. 










  
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