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. 


~~*~~

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

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

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

~~*~~

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.

~~*~~

HELP Fix IVIG Access & Reimbursement

Vietnam War through O'Brien's The Things They Carried
At the bottom of this post is a comment by the creator of the YouTube above.

From LTCOL EUGENE B RICHARDSON, who is fighting the good fight for victims of Peripheral Neuropahty especially those needing IVIG Treatment.

Thank you Eugene!!

~~~~~~~~~~~~~~

PLEASE

SEE THE LEGISLATIVE ALERT BELOW ON NEEDED CHANGES FOR THOSE DEPENDENT UPON GAMMA GLOBULIN ACCESS IVIG FOR THEIR IMMUNE MEDIATED NEUROPATHY. MANY OF US DO NOT MAKE IT WITHOUT THIS CRITICAL THERAPY.

PLEASE HELP AND FOLLOW THE INSTRUCTIONS BELOW FOR CONTACTING YOUR LEGISLATORS SUPPORTING THESE CHANGES TO MEDICARE.

BLESSINGS

LTCOL EUGENE B RICHARDSON USA RETIRED
NEUROPATHY PATIENT WITH CIDP PLUS

Primary Immune Tribune
E-newsletter of the Immune Deficiency Foundation

July 2009

Contents
IDF Needs Your HELP to Fix IVIG Access and Reimbursement
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IDF Needs Your HELP to Fix IVIG Access and Reimbursement
Contact Your Senators and Representative!

After the 4th of July recess, Senate and House Committees will begin to consider the much talked about health care reform legislation, including changes to the Medicare program. And both the House of Representatives and the United States Senate will continue to debate health care reform during the month of July. It is imperative that the language in HR 2002 and S. 701, the Medicare Patient IVIG Access Act be included in any health care reform legislation passed by this Congress. Your voice at this critical time is important for both chambers of Congress to hear!!

The members of the Senate and the House need to know that people care about IVIG and they need to have IVIG access problems addressed in the health care reform bills.

Please act now and ask your families and friends to contact their Senators and Representative by participating in IDF's Action Alert. You make the difference!

Contact Your Representative

In 2005, Congress changed the way Medicare pays for IVIG and, as a result, many doctors no longer provide the treatment - making it harder for patients to get IVIG. Also, current law does not pay for the nursing and IV items needed for IVIG therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare's lead.

To fix this problem, Representatives Israel (NY), Brady (TX) and, Schwartz (PA) introduced HR 2002, the Medicare Patient IVIG Access Act, and Representatives Matsui (CA) and Tanner (TN) introduced HR 1765. Both of these bills are critical to patients who rely on IVIG therapy for their health, as they correct the current problems and respond to government reports that confirmed these problems.

Please contact your Representative's office and urge them to include HR 2002 and HR 1765 in any health care reform legislation passed by this Congress. Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your Representative's office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to your Representative!


Contact Your Senators

In 2005, Congress changed the way Medicare pays for IVIG and, as a result, many doctors no longer provide the treatment - making it harder for patients to get IVIG. Also, current law does not pay for the nursing and IV items needed for IVIG therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare's lead.

To fix this problem, Senators Kerry (MA), Alexander (TN), Wyden (OR), Whitehouse (RI) and Brownback (KS) introduced the Medicare Patient IVIG Access Act, S 701.

Please contact both of your Senators, and urge them to include S. 701 in any health care reform legislation passed by this Congress. Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your Senator's office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to both of your Senators!


IDF E-newsletter
TELL A FRIEND
Primary Immune Tribune is sponsored by an educational grant from Talecris Biotherapeutics

CLICK HERE to add yourself to the letter:

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


~~~~~~~~~
Comment from profile of person who created the YouTube video above. I include it because the comments this post might host bare the same rules:


A video presentation by Weinlein and Dwyer that investigates Tim O'Brien's perspective of the Vietnam War through his work, The Things They Carried. Submitted for Mr. Mody's American Experience class at Burnt Hills HS. Please keep in mind that despite some of the content and parts the lyrics, this site (and all those connected to my account) is intended for use by primarily high school students. This means I will not approve comments with vulgarity or with questionable, derogatory, or inflammatory content. I do understand that this may come off as hypocritical as there is some vulgarity in the song itself.
You are free to comment on whether or not you like/agree with the video and/or the novel it is attempting to summarize. Criticism is fair game in my eyes, as long as it is insightful and in good taste. The old song was "This is War" by Smile Empty Soul, but WMG blocked it so it had to be changed to "Fade Away" by Seether from through YouTube's AudioSwap. It doesn't have anywhere near the same effect.

http://www.youtube.com/watch?v=dP4GaprkAJg&feature=fvw

---------

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.

~~*~~

"Justice for Victims of Agent Orange" Petition~ Please Sign

Agent Orange NEWS From Bruce McPhie:

Dear Friends,

I have just read and signed the new online petition:

"Justice for Victims of Agent Orange"

hosted on the web by PetitionOnline.com, the free online petition service, at:

http://www.PetitionOnline.com/Monsanto/

If you can spare a moment, please take a look,and consider signing yourself.


I personally agree with what this petition says, and I think you might agree, too.


Please also inform your friends and colleagues about the petition,and invite them to sign it as well.

This new online petition has been organized by:

Len Aldis, Secretary of the Britain-Vietnam Friendship Society.
Website: http://www.lenaldis.co.uk

Background information on Agent Orange can also be found on at this blog:

Check under “Links to recommended websites”, plus these two recent postings:

http://lemonjuicebruce.blogspot.com/2009/05/international-peoples-tribunal-to-hold.html

http://lemonjuicebruce.blogspot.com/2009/04/agent-orange-case-inspires-lawyers-11.html

*
International People’s Tribunal to hold hearing on Agent Orange


The long-drawn out struggle for justice waged by Agent Orange victims continues despite the many setbacks posed by indefensible actions of the courts and successive US administrations.


The international tribunal on Agent Orange -

Paris, May 15 and 16.

Best wishes,
from Bruce McPhie


Check out his web log:

http://lemonjuicebruce.blogspot.com

"In times of war, the first casualty is truth."


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.

~~*~~

Immune Globulin (IVIG) Challenge

Art by Kathy Ostman-Magnusen

News from Florida Support Group and LtCol Eugene B. Richardson:

ANOTHER IMMUNE GLOBULIN (IVIG) CHALLENGE:

On Wednesday, April 22nd, I will fly to Washington DC with the help of The Neuropathy Association to testify before a Congressional Committee and to present our story before national news media.

In March 2005 I was left without IVIg for 14 days past my scheduled infusion. I ended up with life threatening issues (could not breath and symptoms from the dark side returned) in the emergency room of Imperial Point Medical Center where they came to the rescue and provided the required treatment.

Like so many other patients who live a life of uncertainty, we live never knowing when the product would or not be available in Florida.

Then on March 11th 2009 I was told by the Florida Hospital Cancer Institute in Sebring, Florida where I get my IVIg, that they would no longer provide the product and then at that visit I learned that I had been switched to a powder product without permission from my Neurologist or letting me know. The result was significant medical issues and problems for the next 21 days. Now all I have to do is travel three and a half hours every 21 days to get my infusion!
According to a past issue of The Neuropathy News, IVIg is reimbursed according to the formula called ‘ASP’ or Average Sales Price. For hospitals the ASP formula was reduced from ASP +6% to ASP +5% beginning January 1, 2008 and was further reduced to ASP +3% on January 1, 2009.
At the same time Medicare reduces the reimbursement rate, the manufacturers implemented their yearly price increase adjustment. Then just to be helpful, Medicare which implemented a hospital pre-administration fee back I think in 2006 to help resolve the problem, reduced this fee from $75 per infusion to $37 per infusion in 2009. Now you do not have to be a brain surgeon in finance to figure out the impact on hospitals and patients who suffer the consequences as they are caught in the middle.

From IG LIVING APRIL-MAY 2009 ISSUE

Are you on immune globulin for an autoimmune neuropathy? Have you gone to http://www.IGLiving.com and signed up for your free subscription to IG Living Magazine? Why not, it is free and full of great information for patients using immune globulin!

Dr Scott Carlson, MD Neurologist at the Rockwood Clinic in Spokane, Washington was asked in the current issue of IG Living about the risk of systemic thrombosis when using an infusion port for IVIg administration for autoimmune neuropathies. Here is his answer:

Dr. Carlson: “The risk of systemic thrombosis should not be any different using an infusion port versus usual intravenous (IV) infusion. The risk of thrombosis in general is very low but still an important side effect to know about. A review article by Brannagan et al in Neurology (1996: 47:674-677) suggested that only one patient in 88 receiving IVIg over time had a venous thrombosis, and that patient was bedridden. The recently published ICE trial for CIDP did not contain any thrombotic cases in 117 patients randomized in the trial. The risk of stroke is very low, but published incidence is hard to find. There might be a small risk that the infusion port itself could clot, and good port flushing and management are important.”

Scared of needles? IG Living current issue has a great article on this problem and some great suggestions for overcoming it on pages 11 to 15. Also this article has a great section on dealing with children who are unable to comprehend the issues and some trade secrets on helping children deal with the fear.

IG Living also has:

An interview with a patient diagnosed with CIDP and their experience;
A great article on an unblended study on the option of Subcutaneous Immunoglobulin infusion for CIDP with the cost and other benefits discussed;
A great article on Chronic Conditions and Employment Law.

NEUROLOGY NOW is a magazine published several times a year. Slowly but surely we keep knocking at the door of the editors to get more articles on the Peripheral Neuropathies, beyond a poem or two. In the current issue they do have an article on Mystery Pain and if you read it, you will find many common themes that some of you with neuropathic pain will identify with quickly. The Neuropathy Association has a neat add on page 9 “Quick Tips – Managing Neuropathy” and on page 37 a page on our two great books on Peripheral Neuropathy. You can order a FREE subscription as a patient, family member, or care giver by going to www.neurologynow.com or call 800-879-1960 or look for a copy with subscription cards in you Neurologists office.
"COPING WITH A CHRONIC NEUROPATHY"


LECTURE and DISCUSSION

SATURDAY - JUNE 13TH - 10:00-11:30 AM


Shands Jacksonville Medical Center

580 West Eighth Street

Tower 1, 2nd Floor
Charter Theater



(Take Exit 353D (W. 8th Street) Eastward off I-95. Going East, see Shands Towers after approximately 3 blocks on Right; turn Right into driveway to park in front of Towers. Upon entering facility, sign-in and then take elevator on your right to the 2nd floor. Directional signs will be posted)


Welcome and Opening Remarks

Alan R. Berger, M.D.

Professor and Chairman / Dept. of Neurology
Assistant Dean for Research
University of Florida / Jacksonville
Director, Neuroscience Institute and Neuropathy Center
Shands Jacksonville



Featured Guest Speaker
Eugene B Richardson, MDiv, EDM, MS (Counseling)
Lt Colonel, USA (Retired)
Neuropathy patient for 41 years


Also Featuring

Mims Cushing, Jacksonville Author of

“YOU CAN COPE WITH PERIPHERAL NEUROPATHY”
&
“IF YOU'RE HAVING A CRUMMY DAY, BRUSH OFF THE CRUMBS"


Sponsors:

University of Florida and Shands Jacksonville Neuropathy Center

904-244-9922

The Neuropathy Association NYC

212-692-0662



RESERVATIONS RSVP 904-244-9304 For Information: 904-244-9719

COST IS FREE (Lecture Materials available for a fee)*****DRAWING for free copies of new neuropathy book


JUST FOR FUN:

When things in your life seem almost too much to handle, when 24 hours in a day are not enough or if in pain or exhausted from your illness, perhaps too much, or your legs and arms feel strange with neuropathy, or other body parts don’t work just quite right anymore, remember the mayonnaise jar and the 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was full.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was full.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “YES”.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

“Now,” said the professor as the laughter subsided, “I want you to recognize that this jar represents your life with a chronic illness. The golf balls are the important things – God, your family, your children, your pet, and your friends. The golf balls are your ability to adapt to limitations or changes and the determination to find new meaning in life as your life is changed by illness. They are all the little free things like fresh cool area or the birds singing, waterfalls trickling into streams, majestic mountains or the sounds of the sea surf, as well as your favorite passions or new dreams – and if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car. But, if you still have the golf balls, you can still survive losing even a pebble or two or three.

The sand is everything else – the small stuff. If you put the sand into the jar FIRST,” he continued, “there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. And by the way, there are healthy people who are unhappy and there are sick people who are happy. The difference is what they learn to do with the golf balls. So adapt your life to your limitations and do what you can do, ANYWAY. Play with your children. Spend time with your parents. Take a trip. Visit with grandparents. Take time to get medical help. Help someone else. Take your spouse out to dinner. Discover new meaning for your life. Perhaps, play another 18. Go to the mountains or visit the sea. There will always be time to clean the house and fix the disposal. Take care of the golf balls first – the things that really matter. Set your priorities. The rest is just sand.”

Then one of the students raised her hand and inquired what the coffee represented. The professor smiled, “I’m glad you asked.

The coffee just goes to show you that no matter how full your life may seem, there’s always room for a couple of cups of coffee with a friend or your spouse.”


Yours with a Smile,

/s/ Eugene

LtCol Eugene B. Richardson, USA Retired
BA, MDiv, EdM, MS, Graduate of the US Army War College

Patient with Chronic Polyneuropathies

Volunteer Leader, Writer, Educator, Advocate,

Florida Chapter, Neuropathy Support Network

The Neuropathy Association, NYC


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.

~~*~~

Periphearl Neuropathy News- Books to Help

Art by Kathy Ostman-Magnusen

Peripheral Neuropathy Support and info ~NEWS from Col Eugene who heads up a support network in Florida.

FLORIDA CHAPTER NEUROPATHY SUPPORT NETWORK
NEWSLETTER

Many of us PN’ers remember our struggle and being told we were crazy in the 70’s, 80’s and 90’s. Then years later after being told nothing was wrong, only to hear that we had idiopathic peripheral neuropathy then told “there is nothing you can do” and we were dismissed. To too many of us, this became known as peripheral “what” and idiopathic sounded like “idiot” when it meant “of unknown cause”, while insurance companies read into it “no objective cause” and denied our claim. Then with our crazy symptoms we went home not able to argue figuring we must be crazy. There were NO books, NO information, and NO support, none, like in “nada”. Insulted and demeaned by too many doctors, supported by few in science, few tests to determine what was going on, so who could blame some friends and family who may have walked away from us? Information was scattered all over the place, was often unhelpful, and the simple act of affirmation and encouragement was absent for most neuropathy patients. Who could believe that only a few years ago, there were very few resources to help us in our ground breaking pioneer journey into the world which Dr. Norman Latov once called a journey of “torture” for far too many.

But so many brave patients and thank heavens a few determined physicians and supportive families and friends, they did not take the situation lying down. Because of the few, we are just now beginning to see the development of tools for diagnosis BEFORE severe disability happens, as it does for some.

On the horizon are new medications for pain that may not have the often undesirable side effects that are associated with some of the current limited choices including one that increases the release of our bodies own “drug” to help reduce pain. Progress is being made in finding solutions to the inherited genetic neuropathies as reported in the January 08 issue of the Neuropathy News by Dr. Brannagan III, our new medical advisor.

Gene therapy treatment is being investigated at Tufts University School of Medicine. So much is being done and so much is yet to be done. If you want to help by supporting research might I suggest a gift to the Mary Anne Donovan Research Fund via The Neuropathy Association!
Now, we the patient and doctors benefit from the pioneer work of so many (patients and doctors), often at great sacrifice to themselves, making so much helpful information available for only a few dollars. If you do not avail yourselves of this information, you are making a big mistake in your journey toward better living with neuropathy. Can we claim the information is complete or final? NO. But it is a long way from where we have been in the dark ages of unhelpful attitudes about neuropathy! But we can only get better. Meanwhile, for the patients out there with no knowledge or refusing to spend a few dollars to learn, it is something like leading a horse to water and not being able to make them drink, that applies here.

SO THE NEWEST ADDITION TO A GROWING RESOURCE LIBRARY IS HERE:

Published 2009 - You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Better Life, written by Marguerite (Mims) Cushing, nationally known writer and neuropathy patient and Dr. Norman Latov, MD, PhD of Weill Medical College of Cornell University (Internationally known expert on the Neuropathies). You can order a copy of this very helpful book at www.amazon.com or at http://www.demosmedpub.com.

In 2007, Dr. Norman Latov, MD, PhD, Weill Medical College, Cornell University, published his book PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won’t Stop, which provides a great overview of the illness, diagnostic issues, causes, some treatments, and lots of affirmation that we were lacking for too many years. You can order a copy of this important book at http://www.neuropathy.org for around $12 plus S/H.

In 2008 Dr. Scott I Berman, M.D. and CIDP patient published his insightful book titled, Coping With Peripheral Neuropathy: How to handle stress, disability, anxiety, fatigue, depression, pain and relationships This book provides a great foundation for applying many of the 365 ideas found in Cushing’s book. It is again a must read for patients. This book may be ordered from (http://www.iuniverse.com) for around $15.


UPDATE ON TAKING THE LECTURE ON THE ROAD or “Coping with a Chronic Neuropathy”.

The Neuropathy Association, NYC, continued its significant support by putting the lecture into a very professional Power Point Presentation. Then our journey was published in the April issue of the Neuropathy E-News. Now the Association has offered to help us with publicity wherever we go and is working with us in this regard. Since then many of you have E-mailed me and asked when are you coming to my area? Just know that we are working on the schedule and all I ask is that you understand that one of my greatest challenges of my neuropathy is loss of stamina and total exhaustion from time to time, so I must pace myself as I adapt to this challenge.

We are busy setting up the lecture schedule for 2009 – 2010 and we will get the word out as meetings are arranged with the help of contacts out in the field. Would you like to work with us in coming to your area? Please let us know at prcgene@aol.com. The schedule is filling up quickly so get your request in and worry about the details later.

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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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