“Patty”

It’s been a huge challenge for me from the beginning. When I was in VA, I did the registry there I believe. And I signed up with, I don’t really know what I signed up for. But there’s never been a true establishment of my condition with the Gulf War. It’s always, to be honest it’s always on the Vet to prove connection. And that’s a really hard thing to do. I mean how are we supposed to prove connection to something when it’s still being studied to this day and they're finding connections now. So, no. I filed a claim, it was denied, I filed another appeal, it was denied. So, now I’m on my third or fourth appeal to the board. And before the board right now in my case, present information to the board. So, I’m just waiting for a judgement from that. So, it never really has been any, I mean I think they suspected it maybe when I was in the VA. But again, there’s no direct link. Nobody’s ever said anything that it’s related or not related. I know. I mean I feel in my heart that based on my, how I felt before I went in the timing from when I got back. And all the neurotoxic exposure of I had there, that it’s a logical conclusion that it is likely my immune system was in such a state, during the Gulf that allowed this to happen. That’s my view of it.

I just think the hidden cost of Gulf War Illness that may not be recognized. Like in my case, highly functioning, smart, successful career person. And all of a sudden it was like, what can I do? I think that’s an important part that should be focused on. And I haven’t really read a lot about it. Is what’s happening to Gulf War Vets that have things that are preventing them from normal daily living, right? Think that’s really important. The focus is usually on the physical. Like you have physical problems. What is that? Like yeah, we can see you can’t work 'cuz your leg’s cut off or you can’t work because you have these physical symptoms. But what of the other, the non-visible symptoms that are happening out there. And how many other people are really affected? And what is the real outcome for these people. I think it’s going to be really important as this all moves forward. I think Gulf War Illness is probably an area that’s unique in that way.

I would think like in my case it can be challenging for people that don’t know um, like memory. Like I may repeat myself or I may focus on one thing over and over again. And that’d be annoying to people. So, how do you help caregivers or family members or partners or whomever understand that part of the daily engagement is could be Gulf War related. And how do they- what kind of coping skills can they have to help deal with that? I don't know. I mean I don't know, there should be some focus on helping people help people that have Gulf War Illness, I think, you know? To be cognizant of it and be aware of and have their own total help cope with and deal with these things. That’s really- I don't know what else. I mean I feel they're very supportive, I don't know what else I could say then just great people.

If I exercise a lot, speaking becomes labored. Even though I was just talking a short time, I can feel my tongue thickening. And it gets harder to talk for longer periods of time. And I think that’s one lingering affect that’s really affected me throughout my time and my careers is the ability to communicate effectively has been a challenge for me. In all my jobs since the Gulf, I have to work extra hard to be able to communicate in my jobs. And I’m really conscientious, I don’t really enjoy communicating with people anymore. Like even a friend, I don’t really like to communicate much because I don’t enjoy it. And it’s challenging. So, that’s been a long-term effect, I think. And then the memory piece, I’ve noticed since I’ve got out, it’s- I don’t I have a more challenge remembering short term conversations. And that’s been a huge challenge in my workplace. I mean it would affect how I could engage in the work I do. I mean I continued to climb in my career 'cuz I would work extra hard. Like what I would have to do in X amount of time, would take somebody probably half or one quarter the amount of time. So, I was working excessively long hours, just to basically keep up and to move up. And so, outward it appears okay, I’m doing fine, and I’m rising in positions. I’m at the assistant director level, I’m leading a program. But it was internally it was a huge challenge for me. It was everything else aside just focus on work only. And just a constant focus on trying to keep up and to do things. To do things that would be like it’s almost like doing something over and over again for the first time. So, I can’t have a store of memory to draw on. To be able to do something it’s like, okay I have to start over again, to get to that point to be able to move forward to the next step. So, that’s been a challenging thing throughout my career. And then ultimately in my last big career, like when I was running a program for a membership, a non-profits membership society. That ultimately got me to the point where I just couldn’t take it anymore and I decided to leave. And then I went to another job with less responsibility. So, just no supervisory role, and just doing the work on my own, assigned to do for myself. And ultimately, I was laid off of that job, and I have nothing else. I’m not working right now, that was my last job.

Even though I was just talking a short time, I can feel my tongue thickening. And it gets harder to talk for longer periods of time. And I think that’s one lingering affect that’s really affected me throughout my time and my careers is the ability to communicate effectively has been a challenge for me. In all my jobs since the Gulf, I have to work extra hard to be able to communicate in my jobs. And I’m really conscientious, I don’t really enjoy communicating with people anymore. Like even a friend, I don’t really like to communicate much because I don’t enjoy it. And it’s challenging. So, that’s been a long-term effect, I think. And then the memory piece, I’ve noticed since I’ve got out, it’s- I don’t I have a more challenge remembering short term conversations. And just I think I tend to gravitate more towards casual encounters instead of in-depth encounters of people, friends. Because it’s just easier that way. Like neighbors, I’ll chit chat with neighbors, that’s great. I can talk to my neighbors that’s fine. But I don’t want to engage any deep relationship things, because it’s challenging, and you don’t want to do that. I just think like I said, I wasn’t told- I don’t really read books a lot in part because I can’t really- I lose tense, I don’t really focus on it well enough and remember what I read. For me it’s just finding things you enjoy like nature, exercise, being outside. And just relying on those things to keep you active and engaged in things. Yeah. And hang out with people who are talkers, so they do all the talking. And you can be- I’m a great listener. And I gravitate towards listening engagements.

And that’s when I started to have my symptoms. It started with tingling in my extremities. And then slurred speech. And then I had like a bell's palsy incident, so I sought care at a German facility. Or actually at the German military, at the military facility in Germany. And they thought maybe bell's palsy they weren’t quite sure. And so, they suggested I see German providers. And so, I went, and I saw a German providers. And they took scans and they saw that I had brain lesions. And so, they were very concerned. And they suggested I go back to the U.S. and seek medical care in the U.S., otherwise it would be way too expensive in Germany. So, that’s what I did. I left Germany and I went back to the US. Transferred to the VA in [city name redacted], a medical center there. And I ended up spending about a month in the VA in [city name redacted]. And they did all series of tests. 'Cuz at this point, I had the slurred speech, but then it progressed that I had total paralysis in my left hand, I could not use my left hand at all. And my speech was very slurred, very thick. So, they did all like I said, all kinds of tests. They tested for everything from Guillain-Barre, to Bell’s, I mean to MS to- I mean all like for everything. All kind of like I said all kinds a tests they did through all things. And they also did a brain biopsy while I was in there. And then the x-ray came back, and they said, yes, that I had some type of vasculitis. So, the treatment I had was hydro steroids. And that helped alleviate the symptoms. And occupational therapy while I was there. And the care at the VA was phenomenal. I mean it’s a teaching facility, and so I had a rotation of different physicians, students, and I really thought I received excellent care there. I can’t say enough about that. And then so after that, I did all that, I got my hydro steroids that helped with the inflammation and then the occupational therapy to help with to get regain my motor skills. So, after that I left the VA and I stayed in [state name redacted] for a short time and then I went back to Germany, to live there again. And I didn't really have, lingering symptoms I had, the slurred speech. Even to this day if I talk for a while my tongue gets thick and I have trouble thinking and talking at the same time, basically. That’s part of my problem. But so, I just continued to have that. I’ve since that time I would seek out, I would see neurologists on maybe every two years just to follow-up to make sure things, to see what’s happening. And I don't know, there’s not really like treatment for what my condition is. It’s really like they're just following up to assess how I’m doing and to see if there’s any change or anything. There’s no real treatment for what I had or have. I did have migraines. There’s migraines in my medical records, which I don't remember from when I was in the Gulf War, I mean in the service. But I must have had treatment at one point for migraines when I was in the service. But then I did have migraines after that, for quite a bit of time. They come maybe couple times a month, really bad. I’d get the whole, no aura, but I would get really sick. And I’d vomit and be off like a day or so, just really bad. Light sensitive. And I basically just waited it out or treat it with Excedrin migraine. At one point I did have a neurologist suggest that I should try magnesium. And that has really, I think helped alleviate or keep them more at bay. I still get them occasionally, but not like I used to get them. So, I think the magnesium has made a huge difference with that. Again, the neurologists don’t really do anything for you. They just hear you, they sent you, they pick a scan. They don’t really give me, and it’s like I think I’ve seen six or seven neurologists over my time. And they really don’t know anything about the Gulf War Illness.

I have taken speech therapy more than once, and I think they gave me some tools to help. And I think they help if I remember to use them, which is a challenge. So, that’s one thing I do. Is this I think having tools could help. Writing things down, I have a lot of notes, I rely on notes a lot. And just I think I tend to gravitate more towards casual encounters instead of in-depth encounters of people, friends. Because it’s just easier that way. Like neighbors, I’ll chit chat with neighbors, that’s great. I can talk to my neighbors that’s fine. But I don’t want to engage any deep relationship things, because it’s challenging, and you don’t want to do that. I just think like I said, I wasn’t told- I don’t really read books a lot in part because I can’t really- I lose tense, I don’t really focus on it well enough and remember what I read. For me it’s just finding things you enjoy like nature, exercise, being outside. And just relying on those things to keep you active and engaged in things. Yeah. And hang out with people who are talkers, so they do all the talking. And you can be- I’m a great listener. And I gravitate towards listening engagements.

Again, the neurologists don’t really do anything for you. They just hear you, they sent you, they pick a scan. They don’t really give me, and it’s like I think I’ve seen six or seven neurologists over my time. And they really don’t know anything about the Gulf War Illness. Any like "could be related", "not related", they don’t know. They don’t really look anything up that’s maybe related to it. They just focus on their discipline. So, I think that’s a pretty narrow focus. And it’s maybe one area that could help is to give more information about Gulf War Illness and the spectrum of things that go along with that to those types of providers, maybe. I don't know.

There’s no real treatment for what I had or have. I did have migraines. There’s migraines in my medical records, which I don't remember from when I was in the Gulf War, I mean in the service. But I must have had treatment at one point for migraines when I was in the service. But then I did have migraines after that, for quite a bit of time. They come maybe couple times a month, really bad. I’d get the whole, no aura, but I would get really sick. And I’d vomit and be off like a day or so, just really bad. Light sensitive. And I basically just waited it out or treat it with Excedrin migraine. At one point I did have a neurologist suggest that I should try magnesium. And that has really, I think helped alleviate or keep them more at bay. I still get them occasionally, but not like I used to get them. So, I think the magnesium has made a huge difference with that. Again, the neurologists don’t really do anything for you. They just hear you, they sent you, they pick a scan. They don’t really give me, and it’s like I think I’ve seen six or seven neurologists over my time. And they really don’t know anything about the Gulf War Illness.

And again, I mean one of the frustrating part too is that I think I’ve been to maybe, nine, let's see one, two, three, maybe six- maybe eight or nine different neurologists. And I didn't really get anything out instead of seeing eight different neurologists, every time you’ve got to start over with your case and your symptoms and go through story every single time. And it’s like, that’s frustrating part of the process too. You have this fragmented healthcare system that doesn’t communicate well toward your provider, so that makes it challenging. I also saw a neuropsychiatrist or psychologist in 20- sometime, in 2010. To help with my claim appeal. And they give you a bunch of tests, and they look at you now, but they don’t really know what you were like before. So, that’s another challenge. I mean here I am- like I think I was a very high performing academic thinking smart, person that could really do things effectively. And after this point, I’m this different person. So, I think that makes some of the analysis kinda hard too. And then I’ve been to two different speech pathologists, speech therapists. That’s really all the type of care I sought throughout this whole time.