an update on cliffordu, and an appeal to the great du braintrust.
for those who missed previous posts, oldtimer cliffordu was diagnosed earlier this year w als.
he has gone from a strong and vital man to basically a quadriplegic in a few short months. the docs are stunned at the swift decline. the usual course for als is approx 5 years.
the current guess is that he has 3-6 months, tho they have been saying that for 6 months already. nobody really knows.
anyway, i recently visited him for 4 days.
he is in better spirits now that he is out of the va hospital, and into an apartment.
he can talk pretty well, tho he is on mechanical respiratory support that gets in the way. he has an adaptive communications gizmo that allows him to surf the net and type. this took ridiculously long to show up, imho, but he has it now and is feeling much less cut off.
he does still have a lot of muscle mass, unlike other folks that i have seen who are in the final stages of this horror.
being a staunchly honest and self aware person, he is trying to adjust to the idea of letting go of hope. i cant imagine a harder thing for a human to do. even when it is clear that that is the reality.
he has a lot of support from his old friends, many of whom he has gone to great lengths to help through their life struggles. his caregivers are very sweet.
please chime in here w your thoughts and remembrances. he will be reading this.
now for the braintrust thing-
because cliff is a veteran, he is getting va care. it is a presumptive service related disability, even tho he is a viet nam vet and long separated from the service.
this presumption covers all vets, regardless of when and where they served.
according to cliff, 60% of all new cases of als are in vets. their decline is generally much more swift than other victims of this cruel fucking disease.
there are possible explanations for this floating around out there, including that the intense physical activity of service is somehow a trigger. since cliff was quite the buff dude before he became ill, perhaps there is something to this. but studies that i looked at trying to find other populations w similar possible triggers are not conclusive.
here is where the mystery starts making you go hmmmm.
neither cliff nor i have been able to figure out just how the military decided to step up on this.
against a backdrop of the still ongoing fight to cover agent orange disabilities, this seems to have arisen out of the ether.
no lawsuits, no real debate, they just rolled over.
why? how? and what do they know?
as far as i can tell, if they know something, they are not sharing it w the researchers who are racing the clock to find a cure.
tho the va is involved in some drug trials, i have yet to find any research based on any specific knowledge.
if they are sitting on evidence here, that should be a damn crime.
this is a link to the announcement about this. i have found a couple other sources that pretty much just parrot this.
https://fas.org/sgp/crs/misc/R41405.pdf
so, dear, amazing du braintrust, please chime in w any info you may have that bears on this.
anything. any little thing.
i will be writing to my senator, the great tammy duckworth, and also john tester.
when i get this written i will post it here so you can share w your electeds, or anyone else that might have info.
and just a word about me, for no real reason.
i have been a hospice volunteer for the last 3 years. i never thought that the things i have learned in this would have such a personal focus, but then we all do or will know someone who is in need of this sort of care.
also, i am inordinately fond of cliff. tho i remember him from his old days here, i did not really interact that much w him. could be cuz i was a mod and he was a good natured lounge troll. lol.
but i found him on fb about a year and a half ago, and have gotten close to him.
as w most of my charges, i find it a privilege to be trusted and allowed into people's lives in these hard circumstances.
i am far away, but will continue to do what i can to support him.
= new reply since forum marked as read
I wish I had info to add. If I see anything, I'll contribute. I just wanted to add my message of support for cliffordu 
Possible culprits included long term exposure to pesticides and lead, as well as the harsh physical demands on the body. Even trauma.
Not everyone in the military who developed ALS served during a time of war.
We were told they have yet to pinpoint a single cause but are still looking.
Miss you, cliffordu.
Thank you, mopinko. You're a gem.
to both.
with little doubt that both Vietnam Veterans and WWII veterans were at increased risk for ALS compared to those who did not serve. The increase risk is even higher among WWII veterans, but of course there has been much longer follow up in this larger cohort prior to the "die off" among the aging WWII cohort we see now. It is speculated that with longer follow-up that an increased risk may show up among other veterans as well.
My speculation? I think the evidence is pretty overwhelming, even if a causal association has not been shown. Perhaps the military learned from the Agent Orange experience wherein they determinedly decided to fight the lawsuits under the guise of "waiting for more conclusive answers" even after the large long term study results were published. Decades of fighting the association--as the numbers affected piled up-- was a pretty self-defeating approach. What else is going on behind the scenes? Difficult to say. I'd have to say with an all volunteer military force that as evidence of potential harm--beyond what one accepts as risk from combat may be having its impact on recruitment--or perhaps they expect it will.
Here's a link to one of the better studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604116/
Marc G. Weisskopf,corresponding authora,b Merit E. Cudkowicz,c and Norman Johnsond
Author information Article notes Copyright and License information Disclaimer
Military service has been suggested to be associated with an increased risk of amyotrophic lateral sclerosis (ALS), but only one prospective study—of a volunteer cohort—has examined this question.
May I extend my warm thoughts to cliffordu, my sadness that this has happened to him, but my pride in his acceptance and courageous approach to his illness. I am thankful that technology may offer him improved quality of life and the ability to remain engaged with others--including his DU family. I will think of him regularly and hope that my warm wishes might bring a slow down to his progression of symptoms or far better, a halt. Thanks mopinko for letting us know about cliffordu and the opportunity to reach out.
Hugs to you! You’re a great DUer and I hope you get good information from the qualified DUers here.
and this too
Your byline is one I always looked for as part of the DU conversation. We will -- continue the battle for our country's soul, or as one of my early childhood heroes put it: for truth, justice, and the American way.
This is stunning news, and my morning dose of caffeine isn't helping. I'm so sorry to be out of words.
What a terrible thing to happen right after such a good event.
My thoughts go out to Clifford.
Can't have that happen again.
Mopinko, thank you for the update on our dear friend. I don't know much about the VA or ALS, but if I come across anything I'll let ya know.
Clifford, you are loved and thank you for your service to our country and to our DU home. Catch you in the next life. Peace brother.
but I remember you. Wish I had some very wise and comforting words for you right now, but alas ...
This will have to suffice
Dylan Thomas wrote, "Do not go gentle into that good night," but for you, I wish you to go most gently, friend, go gently.
Jackie
We all served in the Navy in the 1980s and early 1990s. They were in their late 50s when diagnosed and they went very fast, between 6 months and a year. Before that, they were very healthy and stayed in shape. 
Best wishes to you, cliffordu. I'm sure that the knowledgable and caring people here will give you valuable information and support.
Alcoholism. A family member. I have understanding. Especially that of a veteran.
Truly, I am remembering him in my prayerful intercession. 🕯
Thank you for the posting.
It seems that events in the 1991 Gulf War are the key to their ''stepping up on this''
The recent study builds on research published in 2003 that showed there was a two-fold increased risk of ALS among 1991 Gulf War veterans.To gather this information, researchers screened medical files at Veteran Affairs and Department of Defense hospitals nationwide in search of patients with ALS or other motor neuron diseases. They also advertised a toll-free telephone number for Gulf War veterans to call if they had been diagnosed with ALS.
Now, researchers at Duke, Durham Veterans Affairs Medical Center and UC are taking it a step further and are conducting studies to find possible exposures these veterans had while deployed to the Persian Gulf area that may be the cause of the outbreak.
"We want to find out if there are specific areas where the soldiers moved through," Horner says. In addition, he says researchers are looking at the contributions of specific incidents--for example, the demolition of the munitions dump at Khamisiyah, Iraq, that released a low level of nerve agent, and smoke from the oil well fires--to the heightened risk of the disease in soldiers.
"With this information, we may be able to discover what caused the ALS outbreak and hopefully prevent similar instances from occurring in the future," Horner says.
The study is being published in the July issue of Neuroepidemiology.
Other researchers involved in the study include Steven Grambow, PhD, Cynthia Coffman, PhD, Jennifer Lindquist, Eugene Oddone, MD, and Kelli Allen, PhD, all from the Durham VA Medical Center and Duke University Medical Center, and Edward Kasarskis, MD, PhD, from the Lexington VA Medical Center and University of Kentucky, Lexington.
This study was funded in part by the U.S. Department of Veteran Affairs and the Department of Defense.
https://www.sciencedaily.com/releases/2008/06/080606084113.htm
http://web.alsa.org/site/PageServer?pagename=ALSA_Veterans_Risk
Best wishes to cliff
I saw a cliffordu post! You made a enduring and endearing impression.
You're a fellow President Obama supporter!
Love you So Sorry you're having to go through this, Cliff
Thank Goodness you have such Good Friends to help.
your update on cliffordu. So glad you were able to go and see him in person to be there for him
not posting misleading rumors; maybe just consider it as a possibility??
it was in responses to an article:
https://www.care2.com/causes/why-is-lou-gehrigs-disease-closely-related-to-veterans.html
Stewart S.4 years ago
Guys,
It's the Pulsed Doppler Microwave Radars used by the military causing neurological damage and oxidative stress. Same reason the natives around the Guam radar/missile base have 50-100 times the rate of ALS/Motor Neuron disease. The pulsed microwave doppler radars are damaging all biology. Each pulse is up to 3,000,000 watts of microwave radiation. We have chronic wasting disease and prion disease around Cape Canaveral radar/missile base/indian river lagoon as well as White Sands Missile Bases. Miltary Radars, Weather Radars and FAA radars. The government is now pulsing >600,000,000 watts of microwave radiation over our heads and reflecting thru our bodies 24/7. The 2.0 - 6.0 GHz Frequency range from these radars now has over 20 studies showing that it is bad for biology. Research @ darkmattersalot
SEND
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best wishes for Clifford and hugs to both of you
much love to both of you
Caring DU community.
maybe it could be helpful. Here’s one study that just came out a couple days ago, using the most commonly used pharmaceutical preparation 
in case you aren’t in a state where cannabis is legal: https://www.medpagetoday.com/neurology/generalneurology/76938
I’m often immersed in reviewing natural medicine research, and am continually struck by how cannabis helps with so many issues... it feeds our bodies’ endogenous homeostasis system (“endocannabinoid system”) as well as helping through other mechanisms. A friend with MS finds it extremely helpful for spasticity and generally feeling better.
Here’s a favorite quick med research update website with ALS plugged in: https://www.sciencedaily.com/news/health_medicine/amyotrophic_lateral_sclerosis/
I remember you here and will be holding you in my thoughts and wishing you peace, ease and comfort.