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

~~*~~

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

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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.

~~*~~

"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.

~~*~~




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.

~~*~~

“Coping With A Chronic Neuropathy”

The image is of a fantastic new book, one of two must haves if you or a loved one suffers from Peripheral Neuropathy. Info is below. The first book you need it the one by Dr. Latov, which is shown to the side of this blog as well as on the Neuropathy Association's Website. Link for that is here on this blog too.

My friend LtCol Eugene B. Richardson is head of the group below. He has agreed to allow me to post his newsletters on my blog. I do that because he is one of the finest advocates for Vets suffering from Peripheral Neuropathy I know. Here then below is his latest newsletter along with a BEAUTIFUL poem by him. Please honor all copyrights though... he has given me permission and if you want permission you need to contact him.

Peace, Kathy

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FLORIDA CHAPTER NEUROPATHY SUPPORT NETWORK
NEWSLETTER
Network Support in Florida, CONUS, International

February 8, 2009

HAPPY VALENTINES DAY!!!

SUPPORT IS OUR HOPE – KNOWLEDGE IS OUR POWER
FOCUS FOR 2009 - 2010

“Coping With A Chronic Neuropathy”
Thursday, February 12, 2009 in Sebring, FL
Monday, March 9, 2009 in Deerfield Beach, FL
The Neuropathy Association, NYC, has jumped in to encourage and help in this lecture series with excitement, encouragement, and words of strong support. Association Board Member and Treasurer, Mr. Michael Sloser who resides in Florida, has joined to help design the lecture transparencies into a Power Point presentation. For this technical and professional assistance we are very grateful.

In speaking with Tina Tockarshewsky the Executive Director of the Association, she shared her excitement over these lectures after reviewing the content. She noted what we all known, that the major focus of all our work is on the neuropathy patient and not on an organization or anything else.

Our Association plays an important and key role and it is critical that we support this larger and powerful united voice of many patients who suffer from the many neuropathies. Yet while needing a strong Association, we must never lose sight of the fact that the neuropathy patient is the beginning and end of what we do. Empowering all neuropathy patients with knowledge and providing every means of support possible are missions of meaning and purpose as we work together to find a cure for this disease.

People like Dr. Scott Berman, M.D. who as a neuropathy patient takes his experience and skill as a doctor and writes a great book. He does this while struggling with the well known effects of the disease, sharing his very heart in his own struggle. But you do not have to be a doctor to help, for you all have a life time of skills that you can use to help. Take a Marguerite Cushing who as a neuropathy patient takes her skill as a professional writer to bring together the ideas of hundreds of neuropathy patients. Patients who were professionals in many fields, highly trained and skilled, who struggle to adjust to the new realities of living with neuropathy, but have thrown themselves into bringing hope to millions. Space does not allow to mention all the Bev Anderson’s or Martha Chandley’s of California, or Robert Williamson of Virginia, Irene Beer of New York, Glenn Rogers of Peterborough, Ontario or Helen Ohlin of Stockholm, Sweden, or Louis Martin of Minnesota, or Richard Bates of Texas, who instead of hiding behind their illness, boldly step forward to help anyone who likewise suffers from any neuropathy. And I know there are so many more of you out there doing your greatest to help and heaven knows I wish I could tell all of you how much what you are doing means.

While we have a long way to go in research and knowledge, hopefully making discoveries which will help with less side effects to treat the symptoms and/or the pain, or even approaches to or cures for the condition, we together share the simple adjustments or things other patients have learned that will help us help ourselves. We in the Association have learned that when you set the neuropathy patient free with knowledge and support, not only do they find help for themselves, but they become encouraged and excited to help others who are suffering. In this way you have started a wave of good that knows no end and can be found only in a sense of affirmation and freedom. All you need is one neuropathy patient who says, “Thank You” or “Great Job” or who goes and freely shares what they have learned with another, or makes a contribution to research, and you have a network of caring people that is beyond the value of the largest Diamond ever found. Our strength is in the one neuropathy patient and our power is our united effort through the Association.

Perhaps you have not joined us, why not? Is it because the Association is not perfect? I suggest you look in the mirror. Is it because in freedom patients, sometimes say or do “not so smart things”. Welcome to the sloppiness of freedom, where given time eventually even doctors and patients get it right. Freedom’s sloppiness is the power of freedom out of which are born the great ideas that stick. Show me a leader who must control or dominate everything and I will show you a leader who has a focus on something other than helping the neuropathy patient. But in the words of my new dog Hailey Wiggles (Boxer age 5), just the excitement of belonging and being a friend, or just caring about each other, following abuse and starvation, the wagging tail says it all. Always listen to a wagging tail, the story will be wonderful and maybe your tail will also wag.


SCHEDULED LECTURES ON COPING WITH A CHRONIC NEUROPATHY

A presentation by Eugene B. Richardson, MS (Counseling Psychology – Long Island University), with over three decades of counseling experience, including teaching the behavioral sciences at the graduate level and forty-one years coping with immune medicated chronic neuropathies. He holds two additional degrees at the Master’s level and is a retired Lt Colonel who served 26 years in the military. Besides he smiles a lot, even when he is falling over from loss of stamina and exhaustion, making you wonder if he knows something you do not know!


Thursday, February 12, 2009 in Sebring, FL: This meeting will be held at Florida Hospital, Sun n Lakes Blvd, conference room 1 from 6:30 to 8 pm, with assistance by Sara Rosenbaum, MS, Florida Hospital Community Education.

Monday, March 9, 2009 in Deerfield Beach, FL: This meeting will be held at the North Broward Medical Center, Class Room 7-8, 301 E. Sample Road from 6:30 to 8 pm.
Saturday, June 13, 2009 in Jacksonville, FL: This meeting will be held at Brooks Family YMCA, 10423 Centurion Parkway North, (elevator to the 2nd floor) 10 am to 11:30 am, sponsored by The Neuropathy Center, Dr. Alan Berger, MD, Director and Nurse Karen S. Perrin, RN, Coordinator.

Saturday, October 24, 2009 in Leesburg, FL – This meeting will be held at Lake Port Square, (Continuing Care Retirement Community), in the Town Hall, Leesburg, FL, sponsored by Association Support Group Leader, Marion Jansson, Resident Services Coordinator, the time to be determined.

We are working on arrangements for possible meetings in West Palm Beach County, Miami, Tampa/Bradenton area, and SW Florida areas.

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Peripheral Neuropathy: A disease of the Peripheral Nervous System. Have you ever wished someone would share ideas on how to cope with a chronic illness like neuropathy? Ideas that other neuropathy patients have discovered? How can I help my doctor help me? How can I stop feeling like I am crazy because of these crazy symptoms? Where do I get some affirmation of my symptoms and disease? Why doesn’t anyone seem to care or understand what I am experiencing? What can I do about my burning feet? Are there any solutions for holding onto things with my hands? If I have digestive problems, what are some things that help? If I have problems walking, what can I do? Or what about leg cramps common to those of us with PN? Why is it I can walk one moment and then not be able to move my legs the next? What do I do? Is exercise always good for you? How do you live with this condition and these symptoms when very little seems to help? What have other patients discovered that might help me? Well your wish has come true for there is finally some good news: We wait with excitement for the new book with ideas for COPING that is soon to be published by Demos Medical in April 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 in the Neuropathies). You can preorder a copy of this book on www.amazon.com or at www.demosmedpub.com.

Mims states in her book that we are “connected by common neuropathy dilemmas: Insufficient awareness, demeaning attitudes, and too little useful advice.” This is why the book contains over 365 ideas – one for every day of the year – ideas from the patients who know best – “for living a better life” – while coping with a chronic neuropathy.



The personal stories written by many patients of neuropathy will inspire and educate you about this often confusing disease and the public attitudes which often do a disservice to these patients. Yet it is a book about overcoming the obstacles and unhelpful attitudes with skills we all have available to us. This book is a must read for patients.


A serendipitous discovery: Don’t you just love that word? Another great book on coping is titled: Coping With Peripheral Neuropathy: How to handle stress, disability, anxiety, fatigue, depression, pain and relationships by Dr. Scott I Berman, M.D. and CIDP patient. All profits from this book are donated to the Good Shepherd Rehabilitation Hospital in Allentown, PA, where they care for many children and adults with neurological illnesses. For more information about them, visit www.goodshepherdrehab.org or call 1-888-447-3422. 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 (www.iuniverse.com).


Dr. Berman is a Psychiatrist who developed untreatable CIDP when he was 40 years old. It turned his life upside down and he writes from a perspective of a patient who has been there using his skill as patient and doctor to provide invaluable insight into the many emotional and relational challenges we face.

Dr. Berman’s training as a medical doctor is in the field of psychiatry, and his extensive experience working with chronically physically ill patients and his experience as a patient with CIDP, produces in an extremely valuable book for every patient of neuropathy.

After living for 34 years with neuropathic symptoms before diagnosis and now having lived 41 years with CIDP and Peripheral Autonomic Neuropathy, I can tell you I agree with EVERYTHING in this book. Only someone who has walked the walk could write the talk with the insightful down to earth wisdom that is found between the covers.

Dr. Berman received his undergraduate degree in Biomedical Ethics from Brown University; attended medical school at Virginia Commonwealth University and completed his four year psychiatric residency at Hahnemann University Hospital in Philadelphia, PA. He became a Director of an inpatient psychiatric unit and a Day Care Hospital. At the age of 40 he was diagnosed with CIDP and since then he has done extensive teaching and lecturing in psychiatry as well as in psychosocial issues in treating peripheral neuropathy. He lives in Bethlehem, PA and is associated with the Lehigh Valley Peripheral Neuropathy Support Group.

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A PATIENTS SECRET PLACE OF PEACE

In January 2008 I went to the mountains in North Carolina with my wife, grandchildren and family dog to see snow. I love the mountains. It is my secret place of peace and every neuropathy patient should have one. I can go there by car or by dreams. I wrote a poem speaking of simple joys beyond survival of limits and here I share this gift written in the log cabin in a moment from my heart.

Do you have such a place? Go there often!

A POEM

“When is it Enough?”

By LtCol Eugene B. Richardson, USA Retired, February 2008



When you are in the mountains-

And the mountains through pines whisper to the heart-

Speaking in loud silence, hushing, thirty nine years of neuropathy-

Mountains whispering to us, in language of a cool rushing stream-



Snowflakes in a child’s hand, lifting you from body limits-

Fragile flakes, ignoring childhood excitement, silently disappearing-

While sliding down the ramp, beyond handicapped limitations-

“Look Poppie, look at me, a million miles an hour, I slide.”



With smells of life reaching the deepest soul of my tired lungs-

And Bear, my aging canine friend of fourteen years-

Smiling, lifting his head into gentle breezes, ignoring legs that fail to hold-

Yet grasping the primitive joy of life and living: together.



He in his doggie wheelchair, Poppie in his scooter-

Intoxicated by crystal clear laughter of wife, children, family-

For when you are in the mountains that whisper and smell of life-

Then truly, that is enough.




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

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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.

~~*~~

Costs of War-Protest Songs: Can Music Help Solve Political Problems?

What does the above video have to do with War? Protest and the tools we use to enhance those efforts. Agree or not with the protest of prisoners and prison standards, one must admit that protest put to tune, enhances any statement of objection for any cause.

Costs of War-Protest Songs: Can Music Help Solve Political Problems?

The influence of music is enormous. Culture within a generation dictates the rhythm while circumstance dictates the cause projected. Politics are often voiced in song as people try to deliver their point of view. Costs of war,facts about the Vietnam War, facts about the war in Iraq, prison outrage, abortion rights, the list goes on and on of course.

While walking my dog this morning I found myself singing an old song of Joan Baez's, called "Prison Trilogy". The song is about how prisoners were/(are?) treated in the USA. While singing the song I remembered my Dad's response to "Prison Trilogy" and other political songs of my generation. He got angry with me as I protested the war in Vietnam, singing songs of outrage that defined my ideals, as I washed the family dishes in our suburban home. A fledging finding her way, effected directly by the draft of my young classmates, for a war that made no sense to me, I would find my own voice. Yes, it was and is a generational thing, as politics of the day change. We are influenced by peers, the media, and the struggles of others, noted by us as unique individuals. My dad, just like so many of any group regarded collectively, decided years ago about his political stance and that was that!. True for many in any generation and I guess even mine. I admit to it.

Despite all, I do honestly think that protest can be spoken in a song more directly than it can be said in discussion. In song one can get away with voicing their views, on any subject, more poignantly and certainly more aggressively than what might be allowed in normal conversation. (Light bulb moment I think for getting teenagers to tell you what they are thinking! LOL)

Bringing back the song, "Prison Trilogy" as an example of protest that was greeted with mild consequence, for good or bad, the point was received but not fully absorbed. Because of the tune and Joan Baez's glorious voice, I sang that song when I was young without considering the other side of that issue. I never thought once about the fact that people were in prison for a reason. Yet... I think mans inhumanity to man explodes in the scenario, especially now with the hopeful closing of Guantánamo. Every issue is more complex than what is ever sung or voiced but song is a good reference to history; it voices the artistic side of the issue along with the importance felt. The good thing about protest in song is that it causes us to 'think' about the differences. Eventually and hopefully we refine, collect them and decipher their truths and non-truths; our protests, and try to change things for the better.

by Kathy Ostman-Magnusen
copyright 2009

PRISON TRILOGY (BILLY ROSE) LYRICS
by Joan Baez

Billy Rose was a low rider, Billy Rose was a night fighter
Billy Rose knew trouble like the sound of his own name
Busted on a drunken charge driving someone else's car
The local midnight sheriffs claim to fame

In an Arizona jail there are some who tell the tale how
Billy fought the sergeant for some milk that he demanded
Knowing they'd remain the boss, knowing he would pay the cost
They saw he was severely reprimanded

In the blackest cell on "A" Block
He hanged himself at dawn
With a note stuck to the bunk head
Don't mess with me, just take me home

Come lay, help us lay
Young Billy down

Luna was a Mexican the law called an alien
For coming across the border with a baby and a wife
Though the clothes upon his back were wet still he thought
That he could get some money and things to start a life

It hadn't been to very long when it seemed like everything went wrong
They didn't even have the time to find themselves a home
This foreigner, a brown-skin male thrown into a Texas jail
It left the wife and baby quite alone

He eased the pain inside him
With a needle in his arm
But the dope just crucified him
He died to no one's great alarm

Come lay, help us lay young Luna down
Were gonna raze, raze the prisons to the ground

Kilowatt was an aging con of 65 who stood a chance to stay alive
And leave the joint and walk the streets again
As the time he was to leave drew near he suffered all the joy and fear
Of living 35 years in the pen

And on the day of his release he was approached by the police
Who took him to the warden walking slowly by his side
The warden said "You won't remain here but it seems a state retainer
claims another 10 years of your life"

He stepped out in the Texas sunlight
The cops all stood around
Old Kilowatt ran 50 yards
Then threw himself on the ground

They may as well just laid the old man down
And we're gonna raze, raze the prisons to the ground
Help us raze the prisons to the ground

~~*~~
A group to help you if your body is in the 'prison' of pain in the form of Peripheral Neuropathy here is some

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.

~~*~~

"Mr. Magnusen" On Exhibit at the Shaefer Portrait Challenge- Maui Cultural Center, Hawaii

"Mr. Magnusen" 36x48x2 oil on canvas by Kathy Ostman-Magnusen

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.

by Kathy Ostman-Magnusen
copyright 2009





Schaefer Portrait Challenge Press

This is the link:
http://www.mauinews.com/page/content.detail/id/513548.html?nav=12


...and below is the article for your convenience. I have have highlighted the part where Mr. Orwig talks about my painting, "Mr. Magnusen"

Kathy

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Mauai News
ARTISTS FACE OFF
Portrait challenge uncovers the islands’ identity

POSTED: January 11, 2009

Faces. You see them every day - brushing your teeth in the morning, passing neighbors on the street, doing business with a coworker. But the face is taking on a unique look thanks to the Schaefer Portrait Challenge 2009, a new exhibit at the Maui Arts & Cultural Center.

"What we have is something that is very common in a relatively uncommon place," says Schaefer International Gallery Director Darrell Orwig.

The still eyes beaming back at you look so familiar. It may be tough to connect the faces with the names, but you swear you've seen these people before. It's that tiny hula dancer prepping for Merrie Monarch, the respected Filipino elder flashing her infectious smile, a child unleashing his art with a stick of chalk and the community "uncle" jamming on his ukulele.

"It's a good way for us to sort of reflect back to the community what it looks like," Orwig says of the portrait challenge. "To see it though the eyes of a variety of artists in so many different ways, I think, makes us better people. It makes us better human beings because that's what the portraiture tends to be in a general sense - is that deep sense of humanity."

First held in 2003, this triennial exhibition was inspired by the acclaimed Archibald Prize portrait competition held in Australia. But like many things that make their way to the islands, this adaptation has taken on a unique local flavor, and is exclusive to local artists who must depict subjects living in Hawaii. The statewide juried competition includes 56 pieces by 53 Hawaii artists, representing Maui, Oahu, Big Island, Kauai, Molokai and Lanai. The artists range from established figures in the art community to promising college-aged participants, all vying for one of the biggest art competition payouts in Hawaii, including the $15,000 Jurors' Choice Award. Another prize, the $5,000 People's Choice Award, will be selected by gallery visitors who cast their ballots by Feb. 13.

For the first time in its history, portions of the exhibit will travel beyond Maui shores, showing at The Contemporary Museum at First Hawaiian Center in Honolulu from May 29 to Sept. 8.

The collection is more than a bunch of pretty faces - each work displays the essence of a person captured in a single expression. Those subtle moments can be seen in the confident glare of a young skateboarder in Kelly Bandalos' "Julian at the Legal Wall," the strength of character in a husband's stare in Anita Bisquera's "William" or the fearless defiance of a friend battling cancer in John Woodruff's "Doc."

Organizers were thrilled to see several artists pushing the boundaries of traditional portraiture by creating stylized images or utilizing untraditional materials like ceramic, a wooden surfboard, silk and other mixed-media.

"Conceptually and technically this show has more variety in terms of what form portraiture might take," Orwig says.

Exhibit Programs Manager Neida Bangerter agrees.

"I think the stretch that some of the artists took, that's really going beyond what we know portraiture to be, and that's where the word 'challenge' comes in," she says.

Criteria for the previous portrait challenges said that the subject must be a prominent figure the community. But organizers opted for a change this year, hoping to encourage a more personal relationship between the artist and subject. Both participants were also required to have at least one live sitting.

"With that change there was an opportunity for people to really delve into a subject that they know well," Orwig explains.

Turns out, that's exactly what happened.

"The stories behind these pieces are much more engaging than they have been in the past," he continues. "That's not to say there haven't been some great stories, but this year we see much more personal accounts with more emotion."

Orwig pauses before mentioning Kathy Ostman-Magnusen's portrait of her husband titled "Mr. Magnusen."

"I can't even talk about that one without choking up," he whispers.

The power of this image lies beyond the weary eyes of Dennis Magnusen - a Vietnam veteran who was inspired to become a teacher after seeing children affected by war, only to be forced to abandon his calling because of poor health caused by Agent Orange exposure.

"There's almost a book there, there's so much substance to it," Orwig says.

"And you can see the story was so well portrayed in the sadness of his face and the colors used and the textures of the brush strokes," adds Bangerter. "It's an emotional piece to look at - it's heart-wrenching. When a piece is really done from the heart, you can sense that.

Maui artist Kirk Kurokawa chose to portray his dad, Reggie, because like his painting, he is larger-than-life. The 65-by-36-inch oil painting towers over the viewer, like a watchful parent observing his kid's every move.

"My dad kind of comes across as a gruff guy with this tough-guy image, but he's really just one of the softest, most kindhearted people I know," explains Kurokawa. "So the idea behind it was to have that kind of attitude where he's starting down at you, but he also has a dog that's all soft and cuddly."

"And that's actually his dog," he adds with a laugh.

Kurokawa, 34, is a veteran when it comes to the Schaefer Portrait Challenge. His work has been accepted into all three shows, and his "The Real McCoy" portrait of Tadashi Sato earned him the $15,000 Jurors' Choice Award in 2006.

"This show is a great because it really brings a different look to what Hawaii is all about," says Kurokawa. "And over the past few years it has definitely grown and a lot of artists are really stepping up to the plate, so it's been exciting to watch."

This year's coveted Jurors' Choice Award went to another Maui artist, Rich Hevner, 46, for his "Marriage on Paper, Looking For A Sonnet" portrait of himself and his wife, Lauren.

"Marriage is a pretty dynamic sort of institution and it plays a big role in my life," explains Hevner. "So when I'm in the studio, my relationship is always attached to me, even creatively."

While other artists chose to focus on a single subject, Hevner's piece dives into the multifaceted bond of marriage, and is the only portrait in this year's show that depicts the relationship between two people.

"She's had a huge influence on me, both as a person and as an artist," Hevner says of his wife of 10 years, Lauren. "This was an opportunity for me to really explore that relationship."

For Noble Richardson, 24, life's ugly moments sparked his stunning self-portrait. Finding inspiration in the ugly reality of drugs and corruption that pervades Maui's idyllic vistas, Richardson's piece exposes the dark shadows that form just behind the swaying palm trees.

"It becomes a portrait of hope for victims of hard times, and justice that turns its cheek to the frost that blights the valley of Wailuku known as 'Happy.' " he writes in his artist's statement.

"I felt like a lot of the art around here is all happy stuff. You go to Lahaina and see dolphins, nice sunsets and still lifes of fruits and flowers, but people need to see the other side of Hawaii," Richardson says. "In any place there's two worlds - the good and the bad - and I think people should be aware of that."

Whether the subject was a friend, family member, prominent figure or even the artists themselves, there's a story behind each face. Now it's up to the viewer to pick up that dialogue where the artist left off.

"It's an opportunity to see not just a picture on a wall, a label with a name on it and a description of the medium," says Orwig. "It's a chance to find out something about the person and the story behind it."

Lehia Apana can be reached at lehia@mauinews.com.



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.

~~*~~