Dennis Needs Help

I have decided to write on my Congressman's Facebook  every day in hopes that someone will hear me.  My Congressman is Darrell Issa in CA. Here below is what I wrote to him today.

First I posted the pic above but it of course is not visible on his site unless you click it.  Here is what I wrote about the pic: THIS is how we treat our finest.  This is the REALITY of it.  My husband Dennis left of the floor at the VA La Jolla to vomit into a towel.  We finally had to leave to go to another ER.  WHY?  Because the VA in LaJolla/SanDiego takes the LOWEST bidder for meds for "our finest".  That is not acceptable for someone with as an acute condition as my husband.  I wrote comments below under the Todd Akin post only because I am sure this will be deleted. Yet again the VA has given him meds that his body will not tolerate.  This is a nightmare.  We cannot continue to live this way.  Please hear me! I asked for help before but nothing has changed.  Vietnam Vets affected by Agent Orange have a saying DENY DELAY DEATH. Please consider them as they fought and continue to die for your voice.

Under Congressman Issa's post about Todd Akin, I posted these remarks.  They are out of context I suppose but what can you do?  I need to be heard and hope that someone will listen and ultimately help us.  Here below are my comments:


I have decided to write to you every day, almost like a blog.  In fact I am going to blog what I write to you as well.  I sent a picture to you and your staff of my husband on the floor, vomiting into a towel at the La Jolla VA about 2 years ago. Nothing has changed in our lives because of you or your staff, in case you ever wondered.  I asked you for help.  You had the VA  investigate "themselves", so no help was given.  DENY DELAY DEATH This morning my husband VOMITED earlier more than usual. WHY? Because the VA continually changes the brand of his meds  as they take the lowest bidder. Nothing like the finest for our finest right? That might be ok for some  but not for someone like my husband whose condition is critical and hypersensitive.  It is a nightmare and one that plays on and off at the VA's will.  He has small nerve fiber neuropathy, among a host of other things, due to Agent Orange that the US Government sprayed on him and put into the Mekong Delta where he bathed. He had arsenic among other things on his skin in a hot humid climate continually for 9 months.  He went into the Army at 220 pounds and came out 140 pounds on his 6'2" frame. 

The other day I saw that the US Government is now closing more doors on claims regarding Peripheral Neuropathy.  Below is what I wrote as comment regarding that.

OK well that is it for today, see you tomorrow.  I will cry all day today because there is  no one to help and I know for a fact that you as my congressman will not either, but I will keep trying because quite honestly there is nothing else I can do. 

LINK I REFERRED TO (more info below regarding: "DISEASE ASSOCIATED WITH THE EXPOSURE TO CERTAIN HERBIDE AGENTS: PERIPHERAL NEUROPAHTY"

OMG.. "CERTAIN HERBICIDE AGENTS?  ARSENIC FOR ONE!!

https://www.federalregister.gov/articles/2012/08/10/2012-19634/disease-associated-with-exposure-to-certain-herbicide-agents-peripheral-neuropathy

MY COMMENT: "How shameful this is! I write this as I listen to my husband VOMIT in the toilet, as he does every other morning, because of all the meds he must take in order to get through the day, due to the ACUTE pain of Small Nerve Fiber Neurooathy and Peripheral Neuropathy. Soldiers returning from Vietnam had symptoms of Peripheral Neuropathy but were pretty darn distracted because of people spitting on them (our finest?) when they returned, and everybody knows it. I read the other comments here and I just feel like crying my eyes out for them, and for me, who has no life as I live each day to care for my husband. SHAME ON THE US GOVERNMENT and VA. Vietnam Vets have a saying and it is eternally true, "DENY, DELAY, DEATH" After they are all gone and their children, who also suffer effects from Agent Orange are dead and gone, a report will come out saying, "Oh yeah ya know what? The poisons of Agent Orange did affect those people.. so sorry, lets build a monument." If anyone truly believed that Agent Orange would not affect a persons nervous systems, lets see that person agree to spraying a can of Raid on their skin, and agree to live in a humid climate. Do that and I will believe whoever decided this ludicrous decision actually believes this is just. Not only is this wrong of the US Government and VA, it also adds to the complete disrespect of all the sufferers of this cruel neurological disease. I take notes each time we go to the VA. I write down my husbands treatment for medical but also for abuse and ill regard of his service and person, giving him that label "not service connected". I shake my head and sigh as I know that this voice I use, this voice that soldiers fight for, die for, and my freedom to use it, is futile."

Disease Associated With Exposure to Certain Herbicide Agents: Peripheral Neuropathy

Action

Proposed Rule.

Summary

The Department of Veterans Affairs (VA) proposes to amend its adjudication regulation concerning presumptive service connection for acute and sub-acute peripheral neuropathy associated with exposure to certain herbicide agents.Show citation box

This proposed amendment is necessary to implement a decision by the Secretary of Veterans Affairs to clarify and expand the terminology regarding presumption of service connection for peripheral neuropathy associated with exposure to certain herbicide agents.
Peripheral Neuropathy HELP and SUPPORT: http://www.neuropathy.org The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy. ~~*~~
YOU.. YES YOU.. can submit a comment as well!  Here is the link to do that:

1http://www.regulations.gov/#!submitComment;D=VA-2012-VBA-0024-0001

HERE ARE OTHER COMMENTS:

http://www.regulations.gov/#!docketDetail;dct=PS;rpp=100;so=DESC;sb=docId;po=0;D=VA-2012-VBA-0024

THANK YOU FOR READING THIS.. PEACE.

Dr Martin a Song by Dennis Magnusen

Dennis' fist YouTube of a song he wrote long ago in honor of Martin Luther King Jr.



Peripheral Neuropathy HELP and SUPPORT:http://www.neuropathy.orgThe Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.~~*~~

Do Our Congressmen/Women Listen? Agent Orange the Battle Continues

"ONLY THE DEAD HAVE SEEN AN END TO WAR" ~PLATO

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Dennis has submitted his files to his Congressman.

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Peripheral Neuropathy HELP and SUPPORT:http://www.neuropathy.orgThe Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.~~*~~

Dennis Needs Help~ A Vietnam Vets Voice Unheard

"Vietnam Vet" 36x48x2 oil on canvas (a painting of Dennis)

NOTE: As of today I would love to say that this situation has improved but it has not. I for one wonder why we keep fighting wars and leaving our so called heroes on the side of the road, metaphorically speaking.

Denny... not a great meet with the doctor I think. It is involved but basically this doctor does not believe in the validity of a biopsy proving the severity of it. This biopsy as well as the lab that it is sent to, is recommended by the Neuropathy Association, so it is a valid test. They use this biopsy at Walter Reed.. so it's all bullshit. It is disheartening because what this doctor in essence is saying is that he does not believe Dennis suffers pain to the degree that the biopsy states. It is a nightmare but one the VA plays over and over.

And the wheel keeps spinning for Dennis as well as many other Vietnam Vets.

It is like telling someone that your ankle hurts as your foot has been cut off and someone saying back to you, "Prove it, it does not look that bad to me."

Part of what makes it difficult for a patient who is suffering from chronic pain is to not feel validated. When Denny got the book written by Dr. Latov through the Neuropathy Association he was validated by it. Words sprang off of Dr. Latov's pages and healed a thousand and one pieces of sadness.

You cannot help someone if you don't believe them.

I wear thin being an advocate. I think I am too emotional to be able to continue at times and yet who else is there for Denny? No one. I am in the position of being an advocate for a lost cause though. The US Government will never recognize their responsibility in poisoning their own people and creating atrocity over atrocity for the people of Vietnam even today. Remember Bush saying we had to attack Iraq because Saddam Hussein gassed his own people? How is the US any different? I love my country and for this reason I speak out with truth because it is the only way to resolve the fact that sometimes as a country we make disastrous choices.

So the VA doctor said see you in 6 MONTHS... after protest the answer back was that there are a lot of sick Vets out there, you are not the only one.

There is nothing romantic about being a soldier, nothing to glorify. We put yellow ribbon stickers on our cars to honor our hired killers and then turn a blind eye when they return wounded. We "do", don't think for even one single second that we don't. Sometimes it takes awhile, after the parades are over, but eventually we forget them. Our hired killers are expendable and that is the true color of war.

Remember the children in Vietnam:





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Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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Dennis Needs Help, The VA is NEGLIGENT

To whom it may concern,

My name is Dennis G. Magnusen, I used to be a mentor teacher in Hawaiian Gardens, CA. This was a hard place for a kid to grow up, gangs were well established in this area. I taught junior high during the day, home students in the afternoon, and high school "gangsters" in the evening out of a community store front school. I loved my job; I took it very seriously. I became an educator because of my experiences in Vietnam; I did not like what war did to people nor to children, therefore, I taught peaceful resolution to conflicts whenever it seemed necessary. I had to quit teaching in 1990 due to the effects of Agent Orange; I moved to Hawaii.

HERE IS THE PROBLEM: My VA doctor of 18 years (Dr. George W. Ross, Chief of Neurology for the state of Hawaii) finally admitted that he knows nothing about my medical condition. He always told me that "I should not be in so much pain" and that "it is not going to kill me". As it turns out, he could not be more wrong.

In early 2008 I was diagnosed with severe small fiber neuropathy from a biopsy that was sent to Therapath Lab,NY. This is a very painful disease that controls the autonomic nervous system; this has never been addressed by the VA. The only thing the VA has done is to load me up on drugs, that yes I have asked for to help the pain but there is another option. Most doctors are amazed that I can even get out of bed with this many medications. I need treatment (i.e. IVIG), not more meds.

In 2008 Dr. Ross recommended that I see Dr. Mandaville (at Univ. Calif. at San Diego and also with the VA in LaJolla). On January 15, 2008, I was to meet with the VA's neurologist who was going to turn me over to Dr. Mandeville. Instead, the VA's neurologist (Dr. Vivan) said that they were going to "re-test" me. It has been a year since that meeting and nothing has changed, they schedule me 4-6 months after each test to see a neurologist, and then order another test.

I need help. In December of 2009, I had to go to the ER twice. The first time I went to a local hospital, I was convulsing and could not breathe ( I was throwing-up continuously and therefore could not keep my meds down), the pain was severe. The next day it happened again. This time I went to the VA in LaJolla, a 25 mile drive. I had to wait in ER for 5 hours before being seen. Once again in severe pain. I was admitted for 3 days before being stabilized. I can't help but to think this wouldn't happen if I was not on so many meds.

In the VA's Patient Right's, it states: "You will be treated with dignity, compassion, and respect as an individual. You will receive care in a safe environment." I've never felt like I was a recipient of this kind of care, it's more like DENY, DELAY and DEATH.

So far I've been diagnosed with peripheral neuropathy, avascular necrosis ( left hip has had a full replacement, the right hip is still deteriorating), cardiomyopathy, COPD, chronic pain, chest pain, PTSD, persistent insomnia, acute sinusitis, acute tonsillitis, malaise and fatigue, cough, pyronies disease, gastrointestinal motility, and small fiber neuropathy, as well as a few others.

I need help. All I want is a doctor who can help me. There are still things in this world that I want to accomplish. I want the VA to treat me with dignity, compassion, and respect as an individual, and give me that care in a safe environment.

Dennis Magnusen


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The image is of my (Kathy Ostman-Magnusen) painting of Dennis.

Artist's Statement:

"Mr. Magnusen", 30x40x2 oil on canvas, by Kathy Ostman-Magnusen

Artist's Statement:

Mr. Magnusen, the subject of my painting, shares many of my same memories. We grew up not far from one another In S. California and later attended the same high school.  It was in high school that I fell in love with Dennis G Magnusen. That love story was put on hold for some 30 years.

In 1967 Dennis was drafted by the US Army, and subsequently went to  Vietnam in 1968. Circumstances and follies of youth would cause us to follow separate paths.  

While in Vietnam Dennis was strongly affected by the children he saw there. "Children were never meant to experience war", he told me years later.  He decided that he wanted to do his part to change the world.  "Real  change in any society begins with the children," was Dennis' mantra, so he became a teacher.  He worked with gang zone high school kids in the evenings and intermediate students in the afternoon.  Grades of  F's and D's were bought up to A's and B's.  Mr. Magnusen reached beyond his own expectations, leading kids to an understanding of their own worth, thus opening doors to their potential futures. He created a surf club and got the community to help. He was often featured on  local TV and newspapers as someone who was making a difference in children's lives.  Dennis also became a Mentor teacher, lending help to other educators.  Being somewhat of a rebel he advised fellow teaches of  ideas that reached  beyond standard textbook techniques.  

Sadly the ghost of Vietnam took away Mr. Magnusen's strength in the form of Peripheral Neuropathy, caused by Agent Orange.  By 1990 he was too ill to continue his beloved teaching career. It broke his heart.   Seeking rest, relief from stress, needing a special place to deal with the physical pain that comes with Small Nerve Fiber Neuropathy, he relocated to Hawaii.  Hawaii has been his solace and a cool breeze when memories of who he once was for kids becomes faint.

About three months ago "Mr. Magnusen"  was contacted by a former student.  Amy had been looking for him for eighteen years.  She had heard he had died from Agent Orange complications, but still hoped that  she would find him.  You see, Amy became a teacher and she wanted to find Mr. Magnusen to tell him how much he had affected her life. While working on her Masters in Literature, Amy wrote a paper describing the most influential person in her life.  That person was Mr. Magnusen.  Amy called to tell Mr. Magnusen that she wanted to make a difference in this world too. For a teacher there can be no greater reward.  

As for me? I found Dennis once again after 30 years, through a miracle of circumstance, but that I guess is another story. 


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How can you help Dennis? Speak out for Vietnam Vets. And the next time you pass someone who is homeless and you think they were probably a Vietnam Vet? Give them a dollar or two.

Also SUPPORT THE NEUROPATHY ASSOCIATION:



Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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IVIG Treatment for Victims of Peripheral Neuropathy

Dear Senators,

Please support and co-sponsor S 701, the Medicare Patient IVIG Access Act,
introduced by Senators, Kerry, Alexander, Wyden, Whitehouse and Brownback.
Also please urge the Senate Committee on Finance to include IVIG
provisions in health care reform. ). I also ask that the language of these
bills be included in any health care reform legislation that moves forward
in the Senate. For Medicare primary immunodeficient patients (PIDD),
passage of this bill can mean the difference between life and death.

In the United States, there are approximately 250,000 people diagnosed
with primary immunodeficiency diseases. Thousands more go undetected.
Primary immunodeficiency diseases (PIDD) occur in patients born with an
immune system that either is absent or poorly functioning. There are over
150 different types of PIDD, all caused by hereditary or genetic defects.
People with PIDD live their entire lives more susceptible to
infections—enduring recurrent health problems and often developing serious
and debilitating illnesses and even death. Currently, approximately 10,000
Medicare PIDD patients in the US who are antibody deficient receive
intravenous immunoglobulin (IVIG) therapy every 3-4 weeks to replace the
antibodies that their bodies do not produce naturally.

Medicare beneficiaries with primary immunodeficiency diseases (PIDD) first
experienced access and reimbursement issues in January 2005 as an
unintended consequence of the Medicare Modernization Act, when payment for
IVIG and other drugs changed.

Government-sponsored studies have demonstrated the difficulty Medicare
patients have in locating providers willing to provide IVIG infusions. In
April 2007, the U.S. Department of Health and Human Services (HHS) Office
of the Inspector General (OIG) reported that Medicare reimbursement for
IVIG was inadequate to cover the cost many providers must pay for the
product. In fact, the OIG found that 44 percent of hospitals and 41
percent of physicians were unable to purchase IVIG at the Medicare
reimbursement rate during the 3rd quarter of 2006. The previous quarter
had been even worse -- 77.2% of hospitals and 96.5% of physicians were
unable to purchase IVIG at the Medicare reimbursement rate.

The Medicare Patient IVIG Access Act, assists all Medicare patients in
need of IVIG therapy by providing the Secretary of Health and Human
Services authority to review data related to the cost of furnishing IVIG
and provides, if appropriate, an additional payment for up to 2 years. The
bill makes Medicare IVIG reimbursement more transparent and improves
accountability based on data. In addition, the bill asks the Medicare
Payment Advisory Commission (MedPAC) to review payment of IVIG and make
recommendations to Congress to improve access to IVIG for Medicare
beneficiaries.

Last Congress, the Assistant Secretary for Planning and Evaluation (ASPE)
reported that "home infusion services generally do not accept new primary
immune deficiency patients with only Medicare coverage
because healthcare
providers are not reimbursed for the infusion service." S. 701 also makes
"whole" the current law Part B home infusion benefit specific to Medicare
beneficiaries with a PIDD diagnosis. Specifically, the bill allows
coverage for items and services related to the administration of IVIG in
the home.

I hope you agree to cosponsor the S. 701 Medicare Patient IVIG Access Act
and urge the Senate Finance and HELP Committees to include the provisions
of S. 701 in health care reform legislation this year.

Sincerely,

Dennis Magnusen
Kathy Ostman-Magnusen

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PLEASE ADD YOURSELF TO THIS LETTER AND SEND IT TO "YOUR" SENATOR!

http://capwiz.com/immune/issues/alert/?alertid=13666696

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Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

~~*~~

Remember the Children of War

Sometimes language is not needed... as is the case with the video above.

http://www.youtube.com/watch?v=9GQLAQFCZ_c&feature=related

Significant too is this video:

Speech by Martin Luther King, Jr. against the Vietnam War. Audio.



http://www.youtube.com/watch?v=b80Bsw0UG-U&feature=related

Below is Bob Dylan's "Master of War" to images of Vietnam.



http://www.youtube.com/watch?v=TFtdjFoeNic&feature=related

So long ago now.. I know, but oh! Still so close.

Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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