Update for Aug 5th update for Sept Gulf War Veterans Events in DC
Guillain-Barre syndrome is an uncommon inflammatory disorder in which your body's immune system attacks your nerves, typically causing severe weakness and numbness that usually starts in your extremities and quickly worsens. Eventually your whole body can become paralyzed, even the muscles used for breathing.
The exact cause of Guillain-Barre syndrome is unknown, but it sometimes is triggered by a respiratory infection or the stomach flu. Luckily, this potentially deadly disorder is relatively rare, occurring worldwide in only one or two people per 100,000. All age groups can be affected, but it occurs most often in young adults and the elderly.
In its most severe form, Guillain-Barre syndrome is a medical emergency requiring hospitalization. About 30 percent of the people who have the disorder will temporarily need the help of a machine to breathe.
There is no cure for the disorder, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover completely from even the most severe cases of Guillain-Barre syndrome.
I did some medical research for this issue and will be talking to this family more and getting them to connect with our US REP staff here to get him assistance. They were lucky and have insurance so they had to push ahead with his care and needs.
I also did about 2 days of phone calling to help Mr Binns the chairman of the research advisory committee to compile a list of email contacts on the hill for him to use with communicating to senators and representatives on funding of gulf war illness. Trying to get direct communications to the actual members is a challenge at times. But I finished that task for now.
I also was somewhat stopped in my efforts when I got an email in reply to my last update July 26th from VMW. I was not upset but just confronted with an issue I had tried to avoid.
I have been speaking to all as WE meaning Gulf War Veterans not as any particular organization. Although I like many of you have membership and different levels of interactions and participation with many organized veterans groups and other groups.
I saw an overwhelming NEED ---Urgent Action Needed to get Gulf War Veterans to get active again and feel that the time is now to support this new Veterans Affair's Advisory Committee on Gulf War Veterans and to push for the changes that all gulf war veterans have spoken of for these many years. I also wanted to continue the support to the VA Research Advisory Committee. That is what I was doing and getting you all out of your bunkers to lead this effort. EACH OF YOU ARE LEADERS AND CAN AFFECT CHANGES WE NEED. As Congressman Shays, Mr Binns and so many other elected representatives and staffers and contacts in DC have told me....That EACH veteran that comes forward and tells what they have gone through, it has a TRUE AND DEEP IMPACT that not only speaks to their individual struggle but what is happening to all the other gulf war veterans. Each veteran that testified to Congressman Shays committee told their story and impacted what was done for other gulf war veterans. An Example is Major Michael Donnelly and Randy Hebert....they and so many others thru 3 yrs of the hearings spoke as VETERANS. As did the General with ALS General Mike last year at the House Hearing and he has definitely spoke up and is making a difference too. A great number of the veterans that have testified and done public comment did it as Gulf War Veterans not representing any particular organization etc. and their voices represent tens of thousands that have not been heard! That is the power of each of us.
Yes it is also highly desirable to have organizations that have power to help! I spoke up as a gulf war veteran and nurse officer from the gulf with passion and dedication through the years.
Yes I also have been a member of VSO and various groups in title positions at times. But always I am a veteran like each of you and as a gulf war veteran nurse officer that served 20 years trying my best to do what is right and to effect change that will help ALL.
I am desperately trying to have all of us involved and I will not give that up! I will also not let my energy be diverted from having a direction that counts to get things rolling that will help all gulf war veterans. I will not have my gulf war illness affected energy level be zapped by being diverted.
I asked and begged for all organizations to help and get veterans to get involved. I welcomed and welcome their assistance they could offer to each gulf war veteran and groups of us willing to put ourselves on the line to not just represent ourselves but all gulf war veterans. Many of us are ill and struggling and see our other veteran brothers and sisters suffering. We can help each other and have an impact!!!!! Whether as individuals, unaffilated and/or affilated with whichever or whatever veteran or civilian group we can be successful.
I dealt with facts on my last update and apparently some over reacted and like a red flag in front of a bull, they reacted. I did not do anything deliberately, neither did I try to do anything but deal with facts and let all be informed. I know of the background fairly well of events that have occurred in the past in relation to organizations. I understand and appreciate those concerns and I truly did not intend on their reaction or try to trigger it. I was trying to deal with factual information. I dealt with it because the issue was there. It was a point of information and not a call for people to take sides or join one group over another. I frankly am tired of the divisions and history and I know others are too.
I also in that update said what we all needed to keep in focus and that is supporting each gulf war veteran being able to have their voice heard and in doing so represents hundred of thousands of other gulf war veterans in the same situation! I have taken a bit of time pondering the response I got and I discussed it with maybe 2-3 people. I wanted to let time work and also wanted to take the high road and to stay true to the mission and not get side tracked.
I hope that the individuals(representing groups) will rethink their reaction and reach out in the correct spirit to support gulf war veterans working to come forward to DC in support of the VA Advisory Committee on Gulf War Veterans and the VA Research Advisory Committee on Gulf War Illness Research. WE can not be divided when we are trying to get a mission done! It would not work at war and will not work in this war to improve VA Care, Benefits, and Research for Gulf War VETERANS.
So onward!!! To Sept 15-16th VA RAC GWI meeting and the priority for gulf war veterans: The New VA Gulf War Veterans Advisory committee SEPT 24-25 in DC!
Now I will encourage each of you to contact your local veteran organizations be it DAV, VFW, Legion, VVA, and other veteran organizations or civilian organization. Call them at the local post find out when their meeting is and arrange to meet their elected officers prior to the meeting to discuss your needs and ask them to be present to the membership to explain need in person. This is the best way to get their support. I also encourage you to make a commitment to their organization to become involved. We all need each other!
I will put out another update shortly. And I am sure I will be talking to those that have already signed up of wanting to go and to do this as a group effort over the phone and by email.
WE still need other gulf war veterans, veterans of other wars that want to assist, family members of veterans, veterans that have had exposure and illness related to vaccines, etc, and civilian advocates, to sign up to come or to assist. http://gulfwarcouncil.com/gulf_war_rac_meetings_and_travel.htm
Sincerely,
Denise
DSNurse1@yahoo.com