PGW Veteran with ALS

• By SheilaT
• Posted July 28, 2006 at 12:33 am

Very well said. I am also glad this is here. It does make you feel more at home knowing others are here. We can all help each other...

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• By debralwewer
• Posted July 28, 2006 at 11:09 am

Hi Jim, God bless. I feel as though this website will be a blessing to so many. My dad Arnold Hodes had ALS and entered heavens gate on May 5. He was in the military during the Korean War and and spent considerable time in Ft. Bliss Texas. I note that friends dad had over the years that were from his arm days and stationed at Ft. Bliss were diagnosed with ALS as well as Parkinsons. The two diseases came on in full speed when those diagnosed were in their 60s or 70s. I somehow wonder if time spent in the military had anything to do with this fate. Never give up Jim. We will find a cure. I am in the pharma industry and see how the medical community and investigators throughout the world are dedicating their lives for this cure. May God bless you and be with you.

Never give up!!!

Debbie Wewer

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• By Jim
• Posted July 28, 2006 at 4:54 pm

Hi Debbie,

It has been shown that there maybe a link between the Military and ALS. There is a strong link to the Gulf War for some reaon. This is and issue that I would love to see addressed and it is being done step by step, but it seems like baby step by baby step to me and a few others that I know. Some day we will get there, I hope. I just want to see my youngest graduate school and he is now in 4th grade this fall. That is my main goal, I do have many others but that is the one that I really want to reach and see. If you know what I mean?

"NEVER GIVE UP"
Squidly Jim

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• By peggy
• Posted July 28, 2006 at 8:08 pm

Hi Everyone,
I'm the new "kid on the block". My husband was a Viet Nam Navy Vet and he had nothing but problems since he got back from the war. He was first diagnosed as having "atypical seizures". I will say that when my husband was diagnosed with ALS the VA was there 100% for us. My husband grew up near Fort Drum (originally Camp Drum) where testing for Agent Orange began in 1959 before it was used in Viet Nam so he probably had a double exposure.
Jim, I am so glad to see that you are actively taking a very helpful role here. It is so needed by so many folks. So little is known about the role of military life and ALS. God Bless.
Peggy

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• By benthedog
• Posted July 29, 2006 at 1:45 pm

Howdy, all! My brother served in the Army at the end of the Viet Nam conflict. He was duagnosed with ALS in July of last year and has dramatically gone downhill over the course of one year. It was suggested that there may be a connection with the mercury fillings in his teeth, provided during his years in the military. Has anyone else found some merit in this? We are just now looking to apply for benefits through the VA.

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• By contkins
• Posted August 3, 2006 at 7:54 pm

I have read a lot about mercury fillings and plan to have mine removed. My brother (who doesn't have ALS) had his done last month after researching it. A friend with MS had his removed several years ago. He said he doesn't think it did much, but he knows he no longer has the toxic metal in his mouth, and who knows what he may have avoided by having them removed.


Check out the DAMS (Dental Amalgam Mercury Syndrom) web site. You can also get a list of dentists near you from them. Other webs--
dentalwellness4u.com
cfs-recovery.org/mercury.html
bioprobe.com

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• By MarkNH
• Posted August 17, 2006 at 8:46 am

Hello, I hope you all read the MDA August Newsletter? VERY revealing! Here's the link to it:
http://www.mda.org/publications/als/als-curr.html#detox This contains the PON gene link with sarin gas exposure, the use of flea collars in the Gulf, etc.
I had my mercury fillings out (many installed in the USMC) last month and have had a doubling of symptoms. Also, don't forget that there is a link between DEET and ALS. Our bug spray in the military was something like 60 or 90% DEET if I remember right. Where would we find this information, does anyone know?
Thanks, Mark Chamberlin

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• By jdwestendorf
• Posted December 10, 2006 at 7:03 pm

I have a very profound interest in this subject as I have what I fear are two strikes against me. Strike One - My father died on February 29, 1988 from ALS. Strike Two - I have now been in the military for almost 20 years and have been deployed to the Gulf War region.

When my father was diagnosed with ALS, the doctors told my mother not to worry, that this disease was not hereditary. In doing some research I find that this is not the case, that there is a link.

I have had some muscle twitches much like Dad's and it has concerned me but remember the doctors saying don't worry about it. Now I read that people in the military are at a higher risk of getting ALS. I have mentioned this during my numerous physicals but none of the doctors seem overly concerned.

My question is - Am I being overly concerned about getting ALS or are the doctors just not educated on this disease and therefore pushing me aside?

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• By Leon
• Posted December 10, 2006 at 7:44 pm

Mr Two Strikes,
I can guide you to a manual you can read online, download to a .pdf file or purchase online. The following link takes you there.

The National Academies Press
http://www.nap.edu/catalog/11757.htmles

Amyotrophic lateral sclerosis (ALS) is a progressive and nearly always fatal disease that affects a person’s
nervous system. It is sometimp:referred to as Lou Gehrig’s disease, after the famous baseball player who died from it. ALS affects 20,000-30,000 men and women in the United States at any given time.

Several recent epidemiologic studies have reported an association between development of ALS and prior service in the US military. Because of the findings of those studies, the Department of Veterans Affairs asked the Institute of Medicine to conduct an independent assessment of the potential relationship between military service and ALS.
Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature reports that there is limited and suggestive evidence of an association between military service and later development of ALS. The committee recommended that more studies on the relationship between military service and ALS be conducted to provide additional evidence of an association. In addition, research is needed to explore what might be causing ALS among veterans — whether it could be chemicals, involvement in traumatic events, intensive physical activity, or other substances or activities that might be encountered during military service.

The Book is available for purchase or a free download to a PDF file.

If you prefer you can read it online.

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• By Jim
• Posted March 31, 2007 at 11:51 am

Wow,here we are on the eve of another Advocacy Days in just over a month away. I hope that all that will be attending are ready to KICK BUTT AND TAKE NAMES? I know that I am ready to give it my best... It has been a while since I last posted anything here. Advocating for ALS and Veteran Issues has been keeping me busy this past year. Well at least it has been keeping me out of trouble and out of the wife's hair. I really would like to know what happened to this past year. Time has been flying by and it needs to slow down. I remember being a kid and wanting to days to hurry up and the years to go fast for my Birthdays to get the gifts. Now being older and a little wiser (not much...that is...) along with having to deal with the "Monster" (ALS) I would love for it all to SLOW DOWN. There are just too many things on the "Honey Do List" that have not been checked yet.

For those that participated in the call yesterday (March 30) VA Issue Team, it was good to hear everyone. There where many good topics that were brought up and disgussed. And to those individuals that volunteered (Had Heilum Hand), I thank you and I am willing to help in anyway that I can. Just contact me and let me know. I am looking forword to meeting you all in DC this May, I sure hope that all will be there. If you can't be there physically I know that you will be there mentally.

All take care and I hope to see ya in May or to hear from you soon.

"NEVER GIVE UP"
Jim T.

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• By msgar1ginny
• Posted April 1, 2007 at 1:04 pm

Cale served in the Korean War. He was stationed in Ft Lenordwood and in Colorado. He drove a tank while in Korea. He was dxed at age 72.with Bulbar onset ALS ay Mayo. He lost his battle 2 weeks ago. When it bacame impossible to continue going to the ALS Clinic--300 miles away from home- we started going to the Veterans Hospital in Iowa City. What wonderful place. He was treated like the King that he was. So much care and respect. They were so good to us. I have a son in the Navy that was a Marine during the Gulf War and I worry that I might have to go thru this agin! We relly need to find a cure for this awful disease. For everyone but most importantly for those who risked their lives for us..I truly loved Cale and taking care of him was an act of love but I really do want to have to do it for my son.

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• By awallac1
• Posted April 1, 2007 at 9:07 pm

Jim-
Welcome to the ALS Assoc. blog site. I am a veteran with ALS and I have had a wonderful experience with the VA. They are increasingly interested in ALS because it has a 50% higher prevalence among military personnel. I have worked with the ALS Assoc. in the DC area to prepare a guide for vets who want assistance from the VA. Email me at awallac1@aol.com and I will send you the guide,which has been approved by the DC VA center. If you are in touch wiht other vets, please pass this message on to them. I am willing to talk by email to any of them who have questions about VA benefits.

Regards,
Tony Wallace

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