A word about the ALS #IceBucketChallenge
You may or may not be aware of the Ice Bucket Challenge that is currently sweeping the social media sites sponsored by the the ALS Association. I don’t recommend that you dump ice water on your head, but apparently, the thing is raising awareness of Amyotrophic Lateral Sclerosis (ALS), so I appreciate that. Very little is known about the disease, there is no real diagnosis for it – the only way doctors know how to find the disease is to eliminate everything else that could be causing the symptoms – let alone a treatment for ALS.
I’ve known people who lasted only six months after the symptoms began to appear and then there’s Stephen Hawking who has been in a wheelchair and unable to dress or feed himself since 1974. So, that death clock that Daniel A. Bernath has posted on his website predicting my demise next year is purely subjective bullshit. In fact, I’m thinking that it’s a death threat.
Only about 30,000 Americans have the disease at a given time, so it’s not a really well-known disease. But, it seems that Gulf War veterans get the disease at a higher rate than veterans who never went to the Gulf, so it is becoming a veterans’ issue. Traditionally, it’s hereditary, but, as in my own case, it’s beginning to appear in veterans who have no family history of ALS. So much so that, like Agent Orange exposure, ALS is now a “presumptive condition” which gets priority at the VA.
But, to the bucket of ice thing – pouring a bucket of ice over your head has nothing to do with ALS, but the act made by some visible people has drawn some attention to the disease and I guess the ALS Association is realizing a surge in donations. So this is me challenging you to fore go the bucket of ice water and throw a few bucks at the ALSA…or to the Paralyzed Veterans of America which has been instrumental in helping me to navigate the VA system. We, at TAH, have a quarter-million unique visitors every month – so if each of you sent a dollar, we could have a real impact.
And thanks to folks like Maria Molina (the cutest weather girl in the world) for helping to get the word out;
Category: Who knows
Lost a good friend to it – not my choice of ways to go.
I would rarely presume to speak for everyone here, but I think I am safe in saying that our hearts and our admiration go out to anyone who bears up under this disease with class. Not namin’ names.
We love you Jonn. (Since I’m a girl, I get to say things like that in public in front of witnesses 😉 )
I’ll see to it that ALSA goes on my gift list, starting next payday. Thanks for bringing this to our attention.
Brrrrr! So, how much is it worth to NOT get a bucket of ice water poured on my head? Quite a lot, actually!
Anything that brings awareness to what is a debilitating and deadly affliction is (almost) always a good thing. Keeping that awareness, now that’s the hard part.
And yeah, that sure sounds like a death threat to me. Sauce, goose, shit like that.
Jonn…Love you brother. God bless and keep you always.
John, I stopped giving to PVA after I went to a charitable giving rating website. It seemed they were using quite a bit of cash for other than vets. It’s been all DAV since. Maybe I’ll have to give them another chance based on your remarks.
Good luck John.
I have no complaints about the PVA. They acted to process my claim with a power of attorney which was accepted and approved by the VA in 45 days. Every month, the service officer calls me and checks that I’m aware of everything that the VA offers to make me more comfortable. I’m sure DAV does the same, but the PVA specializes in claims like mine, so that’s the extent of my experience.
Have a friend that was mis-diagnosed with ALS only to find out later it was Lyme disease. What a roller coaster ride that was…from healthy to dead man walking, to take two and call me in the morning. A local legend and my HS football coach had ALS for 30 yrs (Wedemeyer), so knowing what was in the cards 1st hand made it very macabre with the initial diagnosis. Alzheimer’s and ALS are a wretched way to go.
I’m an Army Vet and I was diagnosed with ALS in May of 2013. The VA was convinced I had stenosis at my L4-L5 area. After an 8-hour back surgery, I recovered and got back to Harley-ing, bicycling, weight training and all the regular man shit that men do. I kept losing strength and coordination and finally got the diagnosis I suspected.
ALS isn’t very painful but it is cruel. I feel like any minute I could run a 10k or swim a mile…then I try to stand up.
I’ve met a lot of straight and stalwart PALS who inspire me to face ALS with the dignity and class they routinely display. To my fellow PALS I offer a heartfelt salute and add a loud and thunderous “AIRBORNE”.
I’ve got my letters telling me that I wasn’t exposed….I ‘may’ have been exposed and a 3rd telling me I need to go register with the VA. Screw that. I’ll be damned if I’ll let them check anything other than a stool sample I leave on their desk. I’ve got a newspaper clipping that says I have an increased risk of ALS, but have tried to ignore it as much as possible. I may not be able to ignore it much longer, but I’ll be damned if I’ll let the VA go looking for it..
James, you don’t have to go to the VA. If you have symptoms, you should go to your doctor. The Neurology Department at Walter Reed diagnosed me and sent me to the ALS clinic at the WVU hospital – the civilian doctor there filled out the VA’s questionnaire. There’s no treatment for ALS, but the sooner you get in the system, the better. I still go to the WVU clinic for evaluation waiting for my condition to get to the point where I can get in trials for treatment.
I always hate those “have you tried” suggestions from strangers, but having come across ALS in the literature I’ve been reading, I thought I would share. I started a ketogenic diet about 11 months ago, primarily to lose weight. It has worked better than I could have ever imagined. I’ve lost over 60 lbs, have plenty of energy for all kinds of activities, my cardio system is healthy, and my biomarkers (blood pressure, etc) are excellent. I’m a 52-year-old female so all of that is really great compared to a lot of women at my stage of life. All that from a diet that includes lots of fat, steak, cheese, burgers, and chocolate. Yes, you can still have dessert, sugar and grain-free. I’ve developed an interest in the biochemistry behind the lifestyle and follow some of the better known proponents as well as many food bloggers from whom I get delicious recipes that make this such an easy way to be healthy. I’ve since learned of all of the other health benefits besides weight loss. The other day, I read an article about a neurosurgeon whose husband was diagnosed with Alzheimer’s. She found that daily consumption of coconut oil helped him significantly. In closing, she mentioned many other conditions that may also benefit from coconut oil or its main component, MCT oil. ALS Untangled did some research on coconut oil, here are their results: http://informahealthcare.com/doi/pdf/10.3109/17482968.2012.671629 Coconut oil is one of the main components of my diet, I use it regularly in place of or in addition to other healthy fats. I cook and bake with it as well as other coconut products. I also take an MCT oil supplement daily. I know that adopting a keto lifestyle can help prevent conditions like diabetes, metabolic syndrome, cancer, and maybe Alzheimer’s, as well as a number of auto-immune diseases. Can it help ALS? I don’t know, but it’s not harmful and contributes to making your food taste just that much better. There’s an interesting book by a neurosurgeon called The Brain Trust Program that explains how the brain, metabolism, cells, etc. all… Read more »
Jonn,
My feelings on his death clock are the same as yours. But we have had that conversation.
A couple of months ago I got to spend an afternoon at the TAH world HQ. Jonn and I drank a couple of imported beers and solved the worlds problems. I know a hell of allot of people but call very few my friend, I consider Jonn my friend.
On Bernaths best day he doesn’t even come close to being the Man that Jonn is.
I know nothing about ALS other than the little I have read and what I have observed.
My closest observation was that of Jonn during the scandal filled summit Jonn and I conducted at the TAH World HQ some months ago.
Jonn literally carried himself around with a level of dignity, absence of pity and grace not common in most men who are faced with such an uncertain future.
Bernath apparently knows nothing about moral character, dignity, pity or grace. He has demonstrated that in his actions and words. On his best day, he is not even worth a moment of contemplation …
Oh … And he seemingly knows little about karma, proper application of law and subsequent justice.
Goodness, my death clock moved back a whole year today. I guess the hitman was getting antsy.
Oh my, someone is getting really butthurt!
He’s more likely to die of sheer stupidity way ahead of you, JL.
I’ve been presenting symptoms of this disease for the past two years. Still no diagnosis. I just live day to day.
Well, I’m gonna try that Coconut Oil with the MIL who has Alzheimer’s. Donated to ALS. And a little something for TAH. I had two uncles who died from it…both WW2, not related. Coincidence, I think. And no ice bucket for me, either.