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Fortune

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My name is Fortune. I was recently diagnosed with Bulbar ALS after more than a year of changes in my speech and swallowing. I feel unhappy about the difficulty I experience communicating with people particularly on the phone. I hear, "Youv'e got the wrong number."; "Are you drunk?"; "I didn't get that."; or silence. I also discovered that by dialing 711; I get a service called "Speech to Speech" The operator restates what I say to the person I call. It's cumbersome, but it helps.

Eating and drinking have become quite a problem. Since my throat muscles don't coordinate, I can't take my heart failure pills three times a day with water because I start to choke. I use apple sauce or pudding instead. The speech therapist suggested I use Thick-It to make water the consistency of nectar. It works. Nontheless I've lost 22 lbs since Aug.

I retired from teaching in '99 after working with special needs elementary students for most of 35 years. I was able to continue doing tutoring work with at risk secondary students until Sep. when my speech was no longer understandable. Quitting was a blow to my self esteem. My health has become my new career.
 

liz

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Welcome

Hi Fortune.

I'm newly diagnosed too so can understand your stress. It all seems a bit unreal. This site is very helpful - everything from moral support to practical advice. You can definitely talk about whatever concerns you have. I think you'll be glad you logged in. It's a huge help just knowing we're not alone.

Liz
 

Fortune

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Liz

Thanks for your message, It IS good to know there are others. I read recently that there may be a link between ALS and serving in the military. I wonder what that's about.
 

MtPockets

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Welcome to the forum Fortune.

I'm glad you found us, but sorry for the reason you had to look to begin with. Feel free to jump right in and join the rest of us as we fight this together.

You might get some use also from the search link above.

God Bless
Capt. AL
 

Al

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Hi Fortune. Welcome to the forum. They are finding Gulf War Vets are having a higher incidence of ALS than the general population. They are just now starting to set up a registry at the VA for vets with ALS. AL.
 
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Al

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November 14, 2006
Service Veterans and ALS.

Roberta Friedman, Ph.D., Research Department Information Coordinator
Pat Wildman, Director Communications and Public Policy

[Quick Summary: A new report from experts convened by the Institute of Medicine agrees with prior conclusions that U.S. military veterans appear to have increased risk of developing ALS. The report recommends additional research to further assess the relationship between ALS and military service and determine what factors of military service may cause the disease.]

The Institute of Medicine (IOM) has issued a new report from experts supporting an association between military service and later development of ALS. Published reports reviewed by the experts show up to a two fold increased risk of developing amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) among veterans deployed in the Persian Gulf War of 1991. Veterans from other eras, dating from World War II to post Vietnam, also appear to be at greater risk of developing ALS.

“A diverse panel of experts was able to conclude that existing evidence supports the increased risk for veterans,” said Lucie Bruijn, Ph.D., science director and vice president of The ALS Association. “We intend to continue our efforts to help veterans and to continue to search for the cause and effective treatment of ALS.”

The ALS Association has worked with Congress and the Administration to increase funding for ALS research, including research seeking to determine why veterans are at greater risk of the disease. When the first studies were published that found a link between ALS and service in the 1991 Persian Gulf War, The Association strongly supported former Secretary Anthony Principi’s policy to aid Gulf War veterans with ALS. Under that policy, ALS is considered a service-connected disease for those veterans who served in the Gulf War between August 2, 1990 and July 31, 1991.

However, ALS is not presumed to be a service-connected disease for the thousands of other veterans diagnosed with ALS even though research has demonstrated elevated rates of ALS in all veterans, regardless of whether they served in the 1991 Gulf War.

“The IOM’s conclusions help to validate what the ALS community knows all too well – that if you served in the military, you are more likely to die from ALS,” said Steve Gibson, vice president of Government Relations and Public Affairs for The ALS Association. “We strongly support calls for expanding ALS research at both the Department of Veterans Affairs and the Department of Defense. We also believe that ALS should be considered a service connected disease regardless of when a veteran served in the military. And we hope that the Members of the newly elected 110th Congress will join our fight in support of all veterans with ALS.”

Four studies have found evidence of the increased risk of ALS in military veterans, both those who served in the Gulf War and those with any history of military service, the IOM committee reported. The risk is as much as twice that in the general population.

Of particular importance, the IOM reviewed a study conducted by researchers from Harvard University ’s School of Public Health that found that veterans who served in the military, whether World War II, Korea or Vietnam, are at greater risk of ALS. According to the IOM report, “[T]he implication is that military service in general – not confined to exposures specific to the Gulf War – is related to the development of ALS. The findings, if validated in other studies, suggest that exposures during military service, even among those with no wartime service, might be responsible.”

The committee called for new, high quality studies to further investigate the connection between ALS and military service and to examine those aspects of military service that may cause the disease.

Factors that might feed into the increased risk of ALS in veterans include exposure to lead, pesticides or other environmental contacts, use of tobacco or alcohol or extreme physical exertion.The ALS Association has recognized the need for larger population based studies and is working with Congress to pass the ALS Registry Act (HR 4033/S. 1353), legislation that would establish a national ALS registry at the Centers for Disease Control and Prevention. The registry would collect data about ALS that could provide vital clues into the causes of the disease, including why veterans may be at greater risk.

Experts who served on the committee for the report were Richard T. Johnson, M.D. (chair), Johns Hopkins University, Baltimore, Walter Bradley, D.M., University of Miami, Florida, Beate Ritz, M.D., Ph.D., M.P.H., University of California, Los Angeles, Walter A. Rocca, M.D., M.P.H., Mayo Clinic, Rochester, Minn., Jeremy Shefner, M.D., Ph.D., State University of New York at Syracuse, and Christina Wolfson, Ph.D., McGill University, Montreal.

A report issued by the IOM in September was unable to find evidence that supports the idea of a Gulf War Syndrome but did agree that existing evidence shows increased risk of ALS among Gulf War veterans (the report is available at http://www.iom.edu/CMS/3793/24597/36955.aspx).

Copies of the latest IOM report, “Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature,” are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=11757.

See The ALS Association’s web site under the research tab for further information about environmental factors in ALS. Copies of The ALS Association report: “ALS in the Military: the Unexpected Consequences of Military Service” also is available at http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf. For additional information about The Association’s advocacy efforts to support military veterans, contact The Association’s Capital office at 202-638-6997.

The ALS Association The ALS Association, National Office
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
Phone: (818) 880-9007
Fax: (818) 880-9006
November is National Family Caregivers Month. The ALS Association salutes family and friends who serve as caregivers for PALS. For more information about care giving, visit www.alsa.org/patient.
Unauthorized distribution or commercial use of this e-mail is strictly prohibited. Subscribers are granted permission to forward this newsletter, so long as the newsletter is forwarded in its entirety, without charge, and The ALS Association is given credit as the author.
 
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Fortune

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MtPockets

Dear Capt Al, Thanks for the " God Bless". Sometimes I forget that I am blessed no matter what happens in my life. How did you got the moniker, MtPockets? No one who offers blessings is empty. Fortune
 

Fortune

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Al

I was in the Air Force '57 to '61. Do you think it's worth my while registering with the VA? I appreciate your welcome. Fortune
 

Al

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They probably have an 800 number so it won't cost anything to ask them. AL.
 

MtPockets

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I came up with the MtPockets as a joke for my 4 children and 14 grandchildren. Just to remind them gramps isn't a bottomless pit. I also used to play Texas Hold-em poker online, the free games, and thought that would fit in nicely.:-D

Thanks for the reminder that I am not empty. God does bless my life every day, sometimes I'm too busy to notice.

God Bless
Capt. AL
 

GinaD

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Greetings Fortune. I'm new to the site too and it's already helped me vent, and ramble. lol My dad was diagnosed with bulbar onset ALS in Sept '05 so I understand your difficulties. Today, I'm thanking you for being a teacher! I'm sure you have touched so many young people and God will surely bless you extra special for that. I have a nephew with Down's Syndrome so I give any teacher that chooses special needs an extra pat on the back! Hope you have a good day today and a restful, peaceful night.

Gina
 
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