The low down

| February 28, 2013

I’ve been thinking about writing this post for a while. I want you to know that this is not a gambit to secure some sympathy or to beg for prayers or anything of that sort. It’s just that I have about 7,000 friends who visit this blog everyday and this is the best way to tell you all. You may remember that I spent a week with the wonderful doctors at Walter Reed last summer to figure out why my feet quit paying attention to me. It’s been going on for about three years now. They ran every test on every malady they could think of and they arrived at the same conclusion I’d guessed.

I have amyotrophic lateral sclerosis (ALS) more commonly known as Lou Gehrig’s Disease. It is a neurodegenerative disease of unknown cause that breaks down tissues in the nervous system and affects the nerves responsible for movement. Well, I say I “have” the disease, but there’s no real test to prove that’s what it is – the doctors have to eliminate everything else in order to arrive at that diagnosis.

The good news is that I’m still around – many people die from it in less than two years after the symptoms start appearing. So far, it’s only affected my feet and lower legs. Today, the doctors at the West Virginia ALS clinic tested my ability to breath (how most people die when the respiratory system doesn’t talk to the brain) is higher than they expected. The doctor said she’s going to put the test results on her fridge.

Luckily, my real job doesn’t require more than sitting at a computer, like this one, so as long as my hands work, I’m good. My hands show no signs of not working. I do have a problem doing math in my head and my vocabulary is slowly contracting, but there are computers for that I hear.

A few years back, the VA determined that ALS occurs in an abnormally high number of Gulf War veterans, but they don’t know why. I’m still in touch with many of my troops and they don’t show symptoms and I have no family history of the disease. Regardless, I’ve applied to the VA for disability through the Paralyzed Veterans of America and they seem to think that it’s an automatic 100% disability rating. So I guess I’m going to become an expert on the claims-filing process at the VA.

Like I said, I didn’t write this for any special treatment or to beg you for your prayers. I wrote it just because I think of you dickweeds as my friends (all of you lurkers I don’t know, too) and this blog is one of the few successful things I ever done. So, thank you for sticking by me with all of my trips to the doctors and for the shortfalls in the blogging in recent months.

By the way, mentally, I’m fine with this. There’s no one to blame, not even myself or the Army or Saddam Hussein or anyone else. It’s just stuff that happens.

I have a great family that sticks by me, great doctors who do everything they can, and you, my great friends. To borrow from Lou Gehrig in his good bye to the Yankees fans “I consider myself the luckiest man on the face of the earth”, and I’m not going anywhere until God decides otherwise.

ADDED: By the way, my doctor has a patient who she’s been treating for 15 years. He takes his wheelchair out to his tractor, farms all day and then wheels himself back to the house. So you phony soldiers aren’t going to be getting rid of me anytime soon.

Category: Pointless blather

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Civilwarrior

I have been an eager reader of this blog since I first discovered it several years ago. I am a great admirer of your insights both military and political, and send you all of my best wishes.

Jessie

The PVA is one of the strongest representatives you can get. They know their shit. There is a 7 year presumptive period after you are discharged. ALS and MS fall into that category. If symptoms occur during that time you are considered Service Connected. If you don’t fit into that category, by virtue of having served during war time there are Non-Service connected benefits available that don’t suck.

Eagle II

Same/same as with AO Vets.. When the Docs ran out of what to call the “I don’t know WTF this is” they resorted to Lou Gehrig and Peripheral Neuropathy. Often autoimmune diseases are caused by chemical exposure.. and latency should be taken into account when applying for VA bennies. The part they will want you to prove is that it was in fact caused by something that occurred during your time in… and letter5s from Doc’s outside the VA will be quite helpful if they can state – at least as likely as not – caused by …

Don’t give up hope.. definitely in prayers

Doc McC

A better man than me said it best…”Retreat, Hell!” NEVER GIVE UP, get as much exercise as you can, eat well and keep the faith. Semper Fi

lee

with an attitude to life like your, you have lived a full and rich one. i think that might qualify you as an honourary ‘hoser’ eh!

Anonymous

I read this blog not because I served, but because my family has & I desire a deeper connection and understanding of military life. Many prayers sent to you sir & your family. Fight on & know you have strangers like me out in this world rooting for you!

ZeeRashan

Fight on comrade.

Sherri

Are you registered with the Gulf War Register? I have read a lot about this and it showing up in our Gulf Vets. I will keep you in my prayers. Anything is possible as long as you believe. Taking some time off and enjoy life. God Bless you and your family. Sherri

Occurrence of amyotrophic lateral sclerosis among Gulf War veterans

http://www.neurology.org/content/61/6/742.short

CWO-ACB

I love where you say “By the way, mentally, I’m fine with this. There’s no one to blame, not even myself or the Army or Saddam Hussein or anyone else. It’s just stuff that happens.”
Great attitude!!! After 4 combat deployments and 15+ years of service, I was diagnosed with an autoimmune disease (thyroid) – no cure. I struggle with this daily but I appreciate your outlook. It really is the best way to look at it. Hang in there and take care.

-Another brother (from another mother) in arms.

Jorge Quintana

Bro there I was there in D/S & D/S with you. Retired a little over a year later. Your outlook on live and the values you express here tell me all I need to know about you. My prayers are with you and know that I’ll do what I can to help. I haven’t shown any signs of ALS but the ticker stopped on me once and I now have 3 stents, high blood pressure etc. but it hasn’t slowed me down much. It’s the nerve damage in my lower back and legs that has me stove up. Anyway onward and upward. Semper Fi

George
MSgt USMC Retired

Blackhorse

John,
I have been a fan of your writings as well as your desire to right the wrong….or bring light to the roaches and watch them scatter. Often times we will receive words from Doctors and think well they went to school for this so they must know what they are talking about. Remember always my friend that they only PRACTICE medicine and 90% of the time they are only guessing. Praying for you and the fight I know you will give…….

SPEC/SEC

John,
I pretty much know exactly how you feel and you’d likely rather be dead if it weren’t for family and friends to keep you motivated and happy in life.. Fraud Hunting occupies your time as well and makes you feel likeyou are actually contributing to something of importance for awhile. Keep up the great job! If you ever want to join forces on a case I work with the POW Naetwork an reside in N. Carolina.
Thank you and stake care,
Mr. Jaimie A. Brehler

jhstuart

You might want to check out Dr. Robert Young (pH Miracle: http://www.phmiracleliving.com/)from the Lajolla, CA area. I met him in 1998 and discovered that degenerative diseases can be reversed through a nutrition program. Results can be clearly observed through the microscopic observation of the blood. I will tell you it works (don’t let the commercial appearance of his website detract from the message about alkalinity).

BTW I enjoy your site and am a VN vet (1969-1970.

John of Argghhh!

No mercy.

I’m going to continue to f*ck with you and will pee on your grave.

After drinking a bottle of tequila.

So you won’t mind.

Just like today I called Lex a sorry bastard for running off on us.

Steve Kolb

We’re fighting it, too. My wife has ALS. I’m working with some NEALS doctors on a fundraising project for a treatment currently being developed. I’m glad you have a slower form. Treatments are coming.

You’ve got lots of warriors out there fighting along with you. Family and friends make all the difference.

Peace,
Steve Kolb