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
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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.
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Saturday, May 16, 2009
Sunday, May 3, 2009
Immune Globulin (IVIG) Challenge
Art by Kathy Ostman-MagnusenNews 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.
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Periphearl Neuropathy News- Books to Help
Art by Kathy Ostman-MagnusenPeripheral 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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