Showing posts with label Myasthenia Gravis. Show all posts
Showing posts with label Myasthenia Gravis. Show all posts

Saturday, February 9, 2008

Myasthenia Gravis but soldier being sent back to Iraq anyway

A great friend of mine Irish, sent this urgent message. It is something more veterans need to be aware of and so do reporters. Irish has been very active in veterans issues and is fairly well know in many groups. I trust the information she sent me.

WE NEED INTERVENTION FOR THIS SOLDIER... MANY OF YOU KNOW CINDY MILLOY AS BEING A YOUNGER FAMILY FRIEND TO MY SISTERS WITH SERVICE DURING THE VIETNAM ERA IN THE NAVY. WHEN CINDY CALLED ME TONIGHT I TOLD HER TO SEND ME THE FACTS AS TO THE DEPLOYMENT FOR THIS MAN. AS SHE DID NOT HAVE HIS PERMMISSION TO RELEASE HIS NAME. I TOLD HER IT WAS IMPORTANT TO GET THIS OUT TO THE VETERAN COMMUNITY ASAP... WHEN IS THE DOD GOING TO STOP SENDING MILITARY MEMBERS BACK TO THE BATTLE FIELD DISREGARDING OUR SERVICE INCURRED DISABILITIES.

WE USE THE MOTTO NO NEVER AGAIN THEY WILL NEVER BE FORGOTTEN!!!!!!!!
AND EVERY DAY WE WATCH AS MEN AND WOMEN WARRIORS ARE RETURNED TO THE BATLLE FIELD WITH OPEN WOUNDS... AND THEN DOD WONDERS WHY 6,000 VETERANS MORE THAN THE ENTIRE VIETNAM WAR KILLED THEMSELVES LAST YEAR ALONE!!!!!!!!

LETS JOIN TOGETHER OUR RESOURCES AS VETERANS TO ASSIST THIS WARRIOR .... NO ONE LEFT BEHIND. WE TOOK AN OATH REGARDLESS OF WHICH BRANCH OF THE MILITARY WE JOINED..... NOW WE MUST KEEP THAT OATH AND SAVE THIS WARRIOR...

IRISH BRESNAHAN

VVA POST 992 DAV AMERICAN LEGION POST 448 AND UNITED FELMALE VETERANS OF AMERICA LIFETIME MEMBER IN ALL THESE ORAGANIZATIONS

US ARMY 71-77 CAPTAIN SIGC/MI

----- Original Message -----
From:
Sent: Friday, February 08, 2008 11:55 PM
To: jackpot29@msn.com
Subject: Myasthenic being deployed to Iraq

A member of the US Army MP is being deployed to Iraq in the near future. The Army is not recognizing Myasthenia Gravis as a legitimate disease. If you go to www.myasthenia.org you will see what happens to a Myasthenic under normal and stressful situations. Double vision is a very prominent side effect of this disease which he suffers from. Imagine the risk his peers are at when the shooting starts.
Myasthenia Gravis is a rare Neuro Muscular disease which is treated with a variety of medications. Each individual is very unique with their symptoms as is their treatment. The right combination of drugs can take years to figure out. We suffer from extreme fatigue, no advance notice of loss of muscle control, can stop breathing at anytime, speech can become slurred, at times we can suddenly lose our ability to walk.

Here is my story of living with Myasthenia Gravis (MG).

For years, it is unknown how long, I would be accused of sleeping in classes, having "bedroom eyes" as I got older, sleeping in church and so on. I never understood since my eyes seemed wide open. I would trip over absolutely nothing at times and I remember my grandfather telling me from an early age I would trip over a marshmallow. I just thought I was clumsy. I was tired all the time and forced myself to finish a work day then go home and go to bed. I never knew why. In the early 90's I was tested for MS and it was negative.

I moved to GA in 2001 and suffered a heart attack followed by a stroke. Since I was new to GA and didn't have a neurologist I was assigned one. This man sent me to day therapy at one of the local hospitals. This meant intensive PT/Speech/OT for eight hours. By the time I was supposed to do the stationary bike I would collapse. The neuro said I was menopausal and basically crazy. It wasn't much longer that I became completely bedridden. I had an aide come in the morning to bathe me, feed me, get me up for a while, and do my housework. Another aide came in to feed me dinner and get me ready for bed. My quality of life was extremely depressing and I had given up since I had this doctor who was convinced there was nothing wrong with me.

On a good day when I tried to venture out of my wheelchair while the aides were gone I would fall. I would try to pick up a plain piece of paper and it would feel as though it weighed a hundred pounds and I would go down. The worst part was I didn't have the use of my arms to protect either my face or head from the fall. I have suffered from a fractured hip, broken fingers, broken toes, slipped discs in my neck and my lower back and yet I was just crazy. I have fallen picking up my toothbrush. I always needed someone around to help me.

Finally, one day in the emergency room I asked for a different neurologist. I was very blessed because she was on call and in the ER. Within four days she had me diagnosed with MG. This is only the beginning of my journey. I was admitted to the hospital countless number of times as I exasperated. By that I mean I lost the ability to swallow, breathing was almost impossible (lungs are a muscle), I was unable to walk or talk Many combinations were tried and finally I was treated with five days of IVIg (Intravenous Immuno Globlulin) infusions every month this was my liquid gold, miracle drug. I was able to walk on my own. Shower on my own. Brush my own teeth, hair, and dress myself.

This didn't last long though as after a few months I coded due to an allergic reaction to the infusion. That meant back to square one. You can't imagine what that was like. In fact, it was October 2005 and I began getting extremely weak again and placed on Mestinon and Prednisone which are the common first round of drugs.

By Thanksgiving I wasn't able to eat any food therefore my body was losing all nutrition besides I could not take any medications. Your mouth depends on muscles to swallow. Early December a feeding tube was placed in my stomach. Now I am a female with this tube sticking out of my stomach I remember the first feeding the nurse did to show me how to use it. I cried and begged them to take it out. It was horrible. I was to young for any of this.

I survived the ordeal but what no one thought of was the weakness in my hands. I wasn't able to operate the tube feedings, crush the meds, or even flush the tube since I had no strength. A pump was ordered to deliver the nutrition and once again nurses and aides were taking over my apartment. I refused to be spend Christmas in the hospital so I just kept saying I could do this on my own. I couldn't by January 1, 2006 I was barely breathing on my own. I had fallen out of bed and was on the floor for over three hours before anyone found me.

When the police arrived he put me in my wheelchair since I was not getting back into bed and figured I was better off in my power chair. I was in that chair for over 15 hours before finally being admitted to the hospital. It was a Monday and I remember it well. Once again I was total care only this time there was not one muscle in my body which could move on its own. I spent one month in the hospital that January. New drugs were tried before they found one which was still in the experimental stage for MG. The only problem all paperwork stated it would take 9 to 12 months before it took effect.

Presently, I take Mestinon 60 mg four times a day, Mestinon 180 mg Timespan at bedtime, and 60 mg. of Prednisone to manage my MG. I also have several other Auto Immune diseases which I have been told that once you get one you will get more. I take approximately 23 prescription drugs a day. You see with an MGer we have to take meds throughout the day. My Mestinon is used for muscle strength. For me it works maybe two hours before it wears off. That means I have a lapse of two hours before the next dosage. Now my vision is so bad I can no longer driver. I see double and at times have to wear a patch over my right eye to do even simple tasks.

Now, I don't know how the US Army can send someone with this disease over to Iraq. This soldier suffers from severe double vision and other symptoms. The stress he will be placed under will only exasperate his symptoms. I would think this would not only put him at risk but his fellow soldiers Our meds don't stay in your system for long periods of time so what happens when he misses a dose or two. Is our government really willing to sacrifice a soldiers life?

When I heard this mans story about his deployment it outraged me. I had just watched the interview of the soldier who died of cancer senselessly. Is this going to continue? Is there a reason for such disconcert of a soldier? Surely, our homeland could utilize him here.

I felt compelled to share this story however, at this time I cannot share his name since I do not have permission. Please we are losing enough men why take the chance of losing one senselessly.

Thank you for taking time to read this.
Sincerely,
Cynthia A Milloy
US Navy 74-81




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