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.
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