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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