Not The Life We Wanted - An Inclusion Body Myositis Documentary

Рет қаралды 5,348

Күн бұрын

Help these veterans by signing this petition here www.gopetition.com/petitions/...
If you would like to contact your representatives directly to let them know this is something you would like changed you can get their information from democracy.io/
IBM, a terminal auto-immune muscular degeneration, is more likely to afflict veterans than the regular population. Yet the VA does not recognize this as a service related condition withholding urgently needed medical care and assistance. Watch as these brave veterans share their stories and fight to have their voice heard.
Directed, Cinematography and Edited by Nate Fleming
Music by Joseph Noah
A Hill and Ponton Production
In Association with The Myositis Association ‪@MyositisAssociation‬
Read more about this disease here www.hillandponton.com/inclusi...
00:00 - 01:01 Introduction
01:02 - 02:43 What Is Inclusion Body Myositis? (IBM) feat. Dr. Lloyd
02:44 - 11:48 Jim and Augie Explain The Problem With Inclusion Body Myositis (IBM)
11:49 - 21:13 Dan and Alicia Lowther's Life With Inclusion Body Myositis (IBM)
21:14 - 28:14 Sudz' Life With Inclusion Body Myositis (IBM)
28:15 - 37:31 Larry Leisher's Life With Inclusion Body Myositis (IBM)
37:32 - 38:57 What's Being Done To Fix This With Attorney Matthew Hill
38:58 - 39:08 The Sponsors Of This Video
#ibm #inclusionbodymyositis #veteransibm

Пікірлер: 27

@jimmathews7069 2 ай бұрын

I have the misfortune of sharing the same disease, however I am fortunate to know all these gentlemen. A couple I know very well. Augie and I overlapped on the TMA Board. Sudz and I went to rival high schools. Doctor Lloyd has been my internationally known neurologist. Thank you all for putting this Documentary together. It is incredibly well produced.

@AliciaLowther-oz8hh 2 ай бұрын

So thankful for Hill & Ponton and the awareness, caring, commitment to veterans with Inclusion Body Myositis. THANK YOU!

@drakkenstein13 2 ай бұрын

I am also a 100% rated veteran with IBM. I was actually told it is a rare form of IBM. Which since IBM itself is so rare made me even luckier I guess. But in 2007 I was already in the Army for 12.5 years.. I had started as a Tank Crewman but resigned after 6x2 to get a job skill that had future income potential. Started working in the Radiology Dept of Hospitals. Xrays/Interventional Radiology/CT.. My disabilities started in 2007-08 and I was permanent profiled with a description of IBM but not an actual naming of it. I was denied extension or changing MOS or anything that would have kept me in the Army or led to a medboard decision and was instead released and hoisted onto the VA system of West Virginia. I spent the years from 2008 to 2019 fighting for VA compensation. It was 10% to 30% to 40% to 70% to unworkable 100% but still 70% rated in 2019. The backpay entirely denied every time for technicality after technicality. Right now Im nearing 3.5 years being in the queue to have my appeal heard by a judge for proper rating and proper backpay. In the meanwhile Im homebound in a different state. My father was shot and paralyzed in 1980 while serving in the Marines and he moved to Michigan while I was in the service still and I moved up to take care of him when he was diagnosed with cancer 10 years ago. Now he is gone and Im all alone in a State 11 hours from the nearest relative, relying on help from a VA hospital 3 hours away that I cant get to unless they come to get me. I quickly went from cane to walker to manual chair to electric chair and the next step is bedridden til death. IBM is NOT easy.

@Paul.C300 2 ай бұрын

The same in the UK, after your medical discharge they don't want to know you, ex British soldier, medical discharge and now spending bouts of time on the streets, ha, I thought I would be looked after!

@martypk7cmi626 2 ай бұрын

Thank you guys very much. We need to increase the awareness of this horrible disease and hopefully this will help us, Thanks Again!!

@user-zb1fg1jy4w 2 ай бұрын

My IBM diagnosed over year now. I was in Army aviation 76-83 . Toxic exposure numerous from ,TCE ,JP4 plus many others

@josephnoah 2 ай бұрын

Incredible work on this Nate. I had never heard of this disease, nor of the issues that people were having, in terms of getting benefits and proper help needed. I'm really glad that you are helping to bring awareness and attention to these matters. Beautiful work.

@user-zb1fg1jy4w 2 ай бұрын

Enjoying these IBM videos, hoping that Kerry can help me

@williamgarrett4007 2 ай бұрын

It all started in my knees. Running pt every morning than having to load ower howitzers in the motor pool. Carrying everything you needed to go to the field. Your not only Carrying that, but try Carrying a 50cal on top of your rucksack. Now the pains in my spine going up my neck. It hurts so bad. It's causing my frontside to get worse. The pain I have. I can't explain by words. Itss like a knife in my bladder area. I want you to know know this. I got PTSD and I have to prove that to get a ratting from VA. I am still waiting to hear something from the appeals board. Now I have to put this claim in for my back pains and Parkinson disease disease. I need help before I die of old age.

@howardpink8600 2 ай бұрын

A wonderful video for helping educate the public, doctors, the medical community and our care givers. Help spread the word to our politicians, your politicians, to enable legislation to get faster results once we have been diagnosed, so that we can get the help and medical benefits we deserve, without out so much delay. Thanks for watching the video and sharing it. 39:12

@kathyraley1559 Ай бұрын

My brother has just been denied benefits. He asked me to help him prepare for a VA board review on June 23rd.

@user-ss4km3br6b 17 күн бұрын

I am showing signs of this disease. I used to be a fairly serious runner. All branches of the military run. Perhaps that is part of the cause. I was a very serious runner. In the past few years I became very sedentary. Becoming sedentary with a history of previous regular activity might be the cause.

@williamgarrett4007 2 ай бұрын

I got Parkinson, I'm on medication right now to control my trimmers in my right hand. Now it's starting in the left .I can feel my head shaking at times.

@restlesman 2 ай бұрын

Wow....keep fighing bro

@funhouse4715 2 ай бұрын

I hope my suggestion will get to the secretary, Mr. McDonough. It would be nice if veterans could go to a; Patience First, Urgent Care, Community Care or a Doctor that he/ she chooses. It seems like the deck is stacked against veterans walking through the door. I think this way would save time and money. The Disability Benefits Questionnaire (DBQ) could run though a database and tell the rater within minutes whether a veteran claims are denied or granted and it would be coming from a neutral party. Optum Serve/LHI gets paid from the VA and then they subcontract to a Nurse Practitioner, who then gets paid. I have one more thing to add, how much is a C&P exam? I’m curious as to how much money is being spent weekly, monthly and yearly, because someone is getting rich off C&P exams whether it’s Optum Serve/LHI or Nurse Practitioner or both. Sincerely yours,

@joeramsfan8017 Ай бұрын

I have IBM. Didn't serve, but worked in a factory with asbestos in the 70's. Any potential link?

@jessewilliamson8553 2 ай бұрын

Wow I have been complaining about the same symptoms since 1994. And had a muscle biopsy in my 20s but they still saying my stuff is inclusive.

@rickierexroade9734 2 ай бұрын

If I may suggest that you consider adjusting your free evaluation questionnaire, it might aid your firm to stop losing potential clients. I base this on my own experience with your clerk. Thanks for your time in any case.

@HillAndPonton 2 ай бұрын

May we ask exactly what the problem you ran into was?

@rickierexroade9734 2 ай бұрын

Certainly, at the beginning of the conversation it was kind of hard to get use to the accent, I was asked my service dates, 15 July 1976 - 31 January 1995, and then asked if I served from 1955 through 1975, I stated no I just told you 1976-1995. The next thing that was very confusing was some term, acronym I didn’t understand, and her explanation was again confusing, I told her her numerous times I was determined disabled by the Social Security administration in 2006, and have not been able to work since 2006. She seem unable to understand that, and again started with the TDUI term or something to along that line, again I got frustrated. I guess I should mention I suffer from a lot of problems, one of which is an in service TBI, some mental disorders, and others including Parkinson’s disease. I did get very frustrated with her when she kept going back to that TDIU thing. I told her that I just thought you guys would be able to help, I believe that I was exposed to toxic chemicals at Edwards AFB, TCE causing a lot of my issues like the Parkinson’s, heart disease, kidney disease, hypertension, chronic pancreatitis, diabetes, headaches, sleep disorders, basically everything that SSA determined and gave me disability for. She just again went back to her question checklist. It caused me a lot of stress and anxiety. Anyway just wanted to give a suggestion to you maybe adjust your questionnaire and maybe place some mental health questions first, and maybe put those in another person who can adjust the interview style to help a veteran who may need to have more personal help in answering those questions. I hope that helps you, good luck.

@rickierexroade9734 2 ай бұрын

I am 65, not too good with computer verbiage and stuff

@rickierexroade9734 2 ай бұрын

Anyway good luck and it was just a suggestion

@HillAndPonton 4 күн бұрын

@@rickierexroade9734 We absolutely understand. We have members of our team available to take phone calls from 9am - 6pm Eastern Time for anyone who doesn't want to use the online form. The number to call is (888) 211-2541