ALS and Veterans

[DanD]

Mike Company, 3rd Battalion, 5th Marine Division, USMC veteran…… For over a year the doctors back at the VA in Palestine, Texas gave me one missed diagnosis after another. I became very angry and frustrated. I nearly stopped breathing. I lost strength and weight (50+ pounds). I gave my Texas ranch away in January 2016, my piece of heaven on earth that I had worked so hard for and I could not stop crying. Then I drifted out west and had been running a sleepless run, searching for the answer but losing my exits one by one.

After multiple emergency room visits it took one doctor about 10 minutes to figure out why I had been suffering (ALS). The VA say they will now pay 100% of my medical bills going forward but not the $48,000+ in bills I accumulated trying to get an answer to why I was getting weak.

This illness has not been fair! I’ve lost everything, my pet cows and my piece of heaven on earth my Bulah, Texas ranch. Now I am sitting here waiting, crying and trying to “Find My Way Back Home”. I pushed many of my close Texas friends away and did not share with them that I’d been living with this shadow overhead. I had been sleeping with a dark cloud above my bed. I suspended all my hopes and put all my dreams away, just in case I can restore them to life again someday.

I could use some direction and I’m open to all your suggestions. I’ve been watching but the stars refuse to shine. I’ve been searching but I just don’t see the signs. I’ve been looking for someone to shed some light not just somebody to get me through the night. I know the answer it’s out there. There’s got to be something or someone to fix me somewhere. All I want to do is find a way back home. I can’t make it much longer without knowing my way back.

There are moments when I don’t know if it’s real, or if anybody feels the way I feel. I need your inspiration. I need a solution and not just another doctor’s conciliation. I’ve been waiting so long. All I want to do is find my way back home. I can’t make it through without a way back to what I love. And if I open my heart again I guess I’m hoping an answer will be there before the end.

I’m sitting here waiting……  remembering those beautiful golden sunrises, shinin’ across my back pasture, shinin’ above my black angus herd that I miss so much. Those ranch memories help me make it thru the night and help to get me feelin’ free as can be, like the breeze off this warm Arizona Sonoran Desert sand.

[Dave Williams]

My experience with the Milwaukee VA has been extraordinary. I was referred to the neurologist in October 2015. I thought I had a TIA because i was having problems speaking. The last thing i wanted was a needle nerve conduction test but that’s what I got. Along with a battery of other tests and the neurologist had an ominous expression on his face, and said I had ALS and that I would likely die in 3 to 5 years.

Not knowing what ALS was except, for all the ice bucket stuff, I began researching ALS and was frightened by what I discovered.

After being discharged from the marines in 1974, I used my benefits to obtain a degree in functional medicine. The marines not only taught me how to exercise, but ingrained exercise into my very being and continue to engage in daily exercise today. But I digress.

I was immediately enrolled in the ALS quarterly multidisciplinary clinic which has provided untold benefits. The doctors and clinicians at the VA bend over backwards to make sure I have everything i need. The facilities are state of the art and beyond a doubt, is the best healthcare I have ever experienced. I am amazed with the excellent care I’m receiving compared to the private sector .

I don’t know if my experience is the exception or the rule. I just know that i can’t praise the VA enough for how i have been treated.

 

[Dagmar]

Dan — I thank you for your service to our country! And, am sorry that you had such a hard road through the medical system to finally arrive at your diagnosis. We share your anger, sadness and feelings of loss… we all (like you) are surprised and shocked we have ALS.

This forum, this little community is here to offer friendship, support and share information. I hope you feel welcomed and are willing to join our conversations about life with ALS.

Your poetry is impressive! I can almost hear the country-western tune to accompany it 🙂 I think the Sonoran desert is helping to inspire you. As a fellow Arizonian, I too am inspired by the colors, scenery and weather – – it lifts my spirits and I hope it does the same for you.

May I ask, what are your symptoms now? What function do you have? I need to picture what you are dealing with in order to respond with ideas or helpful suggestions. I’m sure this will help others as well who may want to offer their support to you.

Thank you for sharing your ALS story. You are among friends!

 

[Steven Plotner]

I am a Veteran. I go to a VA ALS Clinic. They take good care of me.  I was not diagnosed by the military or VA. I came into contact with my current Neurologist when I saw him at his commercial practice to get a 2nd opinion of my ALS diagnosis. He confirmed it and told me that he volunteers at the VA Hospital and that he’d see me there. Treatments he has me on are Riluzole and Radicava. At my Clinics, I meet with 8 Specialties. They are: Social Worker,  Physical Therapist, Occupational Therapist, Speech-Language Pathologist, Nurse Practitioner, Registered Dietician, Pulmonary Doctor, Neurologist. Assistive medical devices are provided by the VA.

[Deleted User]

I am a veteran of the Vietnam War but was not deployed there.  I spent most of my time in Taichung and Taipei, with side trips to Hong Kong, Cambodia and Bangkok.  The VA has been great in helping me with what I need.  My final diagnosis was in Milwaukee, but I use Lovell and Hines for care.  Hines as well as Milwaukee have strong ALS clinics.

Although I don’t get around like I used to, I  am thankful for what I have.  I keep busy and my mind is not primarily occupied with ALS stuff.  I occupy myself and my mind with other things.  ‘ Mind over matter’.  And I am very Spiritual.

Once again, the VA has helped and continues to help me a lot, for which I am very grateful.