The low down
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
damn. fight well brother.
I know you didn’t ask but you certainly have my prayers Jonn….This blog is the one I’ve stuck with the longest because I feel like so many here are my frieds.
…friends….
Damn, I figured you’d lead when we next danced. Can’t feel my feet either, BTW.
What a couple we will make!
Definitely thoughts and prayers.
I’m a C5-C6 quadriplegic and I’ll tell you from my standpoint … fight it EVERY day. Do not let it wear you down, and do not give up. Once you give up it’s all over with. I’ve literally seen people with less affected paralysis than me give up and die within weeks. I’ve been going strong for years, and intend to see my grandchildren (which I don’t have yet) make me a great grandfather.
It’s literally all in the attitude/mindset.
Best wishes,
Gravel
Jonn, you have my prayers, not only for your fight with ALS, but also your fight with the VA. It’s going to be a long one.
I feel my feet, they just don’t communicate with my brain.
You are and always be a sexy beast. PERIOD.
Love you to the moon and back.
I hadda give up tap dancing.
Also a warning of no small note: When all appears bleak I will be there.
Oh yeah… yer still cute!
Sorry to have read this post, but I do wish you well Jonn.
Shit diagnosis Brother, and you have my thoughts and prayers the doctors are wrong…and if not that, you are able to keep on with the good fight for years to come. I have been following your words of wisdom and good deeds since P.NET… plan on following you for a good bit longer.
Don’t worry. no sympathy as we all know where to find that in the dictionary.
AATW!
Jonn
It is an honor and a privilege to read and be a part of your creation here at TAH.
Luck in Battle
Right up there with Stephen Hawking, you are, Jonn.
Jonn,
All the best to you and your’s Jonn. Let us know if there’s anything you need done, even if the diagnosis is non-ALS. God Bless.
I don’t know you personally, but I’ve admired your attitude and writing for a couple of years now, as I’ve followed your blog (mostly in lurk mode).
Best of luck in your battle. I think you’ve got a great mental attitude and if anyone can kick this thing’s ass, you can. I’ll be thinking of you and sending you my best wishes.
“How far?” “All the way, Sergeant!”
Not the best news Jonn, but all the best to you. I have been following your writing for a long time and really appreciate what you have to say. I see you did not ask but you will have my prayers.
God bless you Jonn.
I’m a relative newcomer to this blog, but I still follow it closely, and wholeheartedly agree with most of what you have to say. Best of luck, and if there is anything at all we can do for you, do not hesitate to ask. Stay strong, and drive on.
I know you’ll keep up the fight Jonn. “Quit” is in the vocabularly but not in the character.
And keep up the good work.
Damn. Why is it that the good people get stuff like this?
#5 Gravel: I salute you. Hope that I could be so focused if stuff hit me.
I gotta have a Scotch on this development. Good people get hammered. Assholes live on and on with no care.
I am one of those usually lurk, but so enjoy your posts. God give you and your family strength. I look forward to “lurking” for a long time to come!
Here’s to hoping your the 20+year patient,there is still alot of work yet to be done.
Never give up.
Me and Jonn just might jump out of a perfectly good aircraft this summer. IF he is willing?
Tandem jumps involved mind you.
Bless you Jonn, I feel that I know you well even though we have never met. Watching you straighten out the MSM and reading your posts. I helped my sister in law’s uncle who was a Vietnam vet get VA comp for ALS. He is drawing 100% plus the VA bought him a power chair and a van! Hang in there, he was diagnosed over 3 years ago and is still fighting the fight. He says the medical MJ helps, but that is an individual call. We are praying for you man!
Yeah, fuck a bunch of ALS. You live as long as you are able to do what you want to do. If that means taking a Rascal Scooter to the park and chasing the grandkids, so be it. Live large, brother.
Nec Aspera Terrent
I’ve heard the same thing about the link between ALS and Gulf War Syndrome. WTF.
That said.. it sounds like you’re in a good place with a doctor who is all over this shit.
God Bless. You’re a damn good man Mr. Lilyea.
I love this blog. Prayers out.
I’m so sorry to hear that Jonn. I read everything you post every day and am eternally grateful for your help with our own personal Stolen Valor situation.
All my best and here’s hoping that the most you have to deal with are feet that don’t talk to your brain. May you be with us for another 50 years.
GOD Bless. I’m still a “Newbie” here, but I’ve enjoyed every minute of this site since I found it, I hope this site and you will be around for MANY years to come, and I hope the Docs are wrong about it being ALS!
Drive on Brother. All the way and then some.
I know I just jump in every once in a while but I wish you well and hope that the good fight goes on for many more years.
George
CTIC(SG) (Ret)
Hold on past the point of reason and then hold on some more. Show it what you’re made of.
Good attitude, friend. We’ve got your back, so to speak.
Nec Aspera Terrent
Another Wolfhound in the house, huh?
Jonn, you’ll get prayers, like it or not. And if there’s anything more I can do, just let me know.
This dickweed is still going to say a prayer for you tonight, my friend.
Fight well brother. If you need anything in DC at all… reach out. My prayers are with you.
Lurking dickweed here. Treat ’em rough brother.
You and this place helped this civilian learn and grow in understanding and respect of our military, Jonn. You helped me to become a good supporter and a better person. I thank you for that. Many positive and healing thoughts headed your way (and lots of prayers, too.)
I happen to know Someone who performs miracles. I’ll be mentioning you to Him …
So, here’s to decades of raising Cain and busting posers!
AATW!
Fine, next time I’m driving through Flintstone I’ll stop through for that cup of coffee. You didn’t have to take it this far to get people to stop in my friend.
I wish you well. You are in my prayers.
Kindest Regards
HMA
Best wishes with this, and hope they’re wrong….and if not then that you set the longest doctor treatment record. And more best wishes on a speedy and successful VA claim process.
Goddamn it.
Shoot me an email with your address and what brand you drink, Jonn, and I’ll have it shipped. After all, we gotta get that booze in you before they put some bullshit liver-killing meds in your system.
Very proud to be called a dickweed from you; I’ll follow you to the gates of hell with a gas can in each hand.
Take care, Brother!
Jonn, this is the only blog I check even once a day, and I probably check it an average of 3 or 4 times. You and the other writers on this site are the first, best source of opinions I like to hear from about the news that interests me.
I respect and thank you for your military career and what you have decided to do since. You are honest and straightforward everytime and I couldn’t ask for more from the people that bring me news.
Good luck and enjoy as many cigars and as much range time as your heart desires.
This mostly lurking member of your 7000 dickweed band is certainly sending positive thoughts and prayers tonight and throughout your fight. Thanks for all you do and will continue to do.
According to the Agent Orange Review (Vol 26, No1, Winter 2012, page 4) ALS diagnosed in a Veteran from any era is presumed related to military service as long as they served on active duty for at least 90 continuous days. No mention of the disability rating.
Good luck dealing with the VA.
My thoughts and prayers, Jonn.
I can only hope that in the same situation I would react with such dignity and poise.