Why We Need the Neuropathy Support Network!

Neuropathy Support Network

A day does not go by during which we receive many neuropathy questions from patients.

Helping patients fully understand what is happening to them given their neuropathy takes time, energy, understanding, and respect for patients.  The patient responses we provide and the information on our website as well as the DVD are educational and information, not diagnostic or prescriptive.

Other organizations fill other roles and do not have the staff to daily respond to patients in the manner of the NSN. We provide not only the DVD giving hope and encouragement (as expressed below by Pat in England), but provide them with resources, information from medical professionals (see What is Neuropathy) by Dr. Waden Emery III MD FAAN and his six other articles on neuropathy.   We include articles from patients (see The Neuropathy Journal) who walk the walk and other resources to lead them to practical possible solutions. Yet, the most important thing we do is to give patients hope and encouragement and hope for patients begins and ends with respect for them and listening and really hearing the patient.

At a recent neuropathy conference a neurologist was answering questions from patients. Now patients can be brutal, which is understandable if you really know from where patients are coming and it usually is from angry frustration involving pain or loss of control of muscles, besides the emotional and financial toll on them and their families.

While this neurologist was well meaning, his response made humorous light of the patients comment or question. Doctors tend to speak at conferences from a medical point of view and perspective. Patients speak from the real world of the neuropathy patient.  Simply stated, that is the difference and we must hear from both the patient and the doctor if we are to understand each other and the fight against neuropathy.

Point: Patients need to hear from patients who have walked the walk and understand the anger and frustration many of them feel.  While humor can be very healing, there is nothing humorous about having and struggling with peripheral neuropathy from the patients point of view. Hope for patients begins and ends with respect for the patient and by listening and hearing the patient.  Thanks heavens most doctors understand this and the patients feelings.

Dr. Sue Schwartz holding a PhD in Family Counseling of Silver Springs, MD in June 2014 shares this comment after viewing the DVD “Coping with Chronic Neuropathy“:  “I saw your DVD at a PN meeting last week.  I brought two people with PN to the meeting.  The DVD is so powerful and so applicable to difficult (clinical) diagnoses in many areas of medicine.  If possible, I would like to have four of your DVD’s to give others who have PN and one for a medical group that needs to hear your message.” We sent her the DVD’s along with posters for doctors to use to reach out to patients!

Another patient writes “I had the honor of receiving a timely response from Col Richardson when I sent him a muffled but desperate cry for an explanation for why Neurologists were telling me to commit myself to a psychiatric institution or that my diagnosed sensory axonal polyneuropathy was untreated Parkinson’s Disease. The Colonel and the NSN website are a light in the darkness.

Professor Emeritus, Richard H. Deane, PhD, PE, PMP, Department of Managerial Sciences, Georgia State University writes: ‘Thanks.  I have not yet received the DVD, but I already made a donation.  The web site is fantastic.  Thanks for all that you do. I am about to start IVIG.”

So that brings me to a comment received this morning from a patient in England and I will let her comment speak for itself for those who challenge our right to do what the NSN does and those who have even attacked and dismissed us over the years.

From Pat in England:

“Dear Gene, today I received your DVD which I watched immediately. It moved me to tears…it was such a relief to hear someone talk about neuropathy who understands exactly how I feel. I have yet to meet anyone in this Country who is suffering in the same way.

The day the DVD arrived I was slumped on the sofa, unable to walk because of the pain. It was like being tortured and has been for many years now. Dark thoughts filled my head. My doctor is not really interested, so today I am going to ring the Consultant Neurologist myself to see how much longer I have to wait to see him.

I did see a pain Consultant who told me I would probably get worse, there was nothing he could do if I wouldn’t take morphine ( I have tried it previously and it didn’t suit me). He gave me an embarrassing smile as he told me this. I asked him if “the bag was now empty” for me now. His reply was ‘yes I suppose so’!

The DVD has restored my strength to carry on and fight for help to manage. I am eternally grateful. I intend to treat myself to a book a month that is mentioned on the DVD. I have sent a cheque as a donation and will continue to donate when funds permit. My heartfelt thanks…God Bless…Pat”

Update from Pat the next day:

“I have just telephoned my doctor to check if he had made a referral to the Neurologist (which he promised to do a month ago) only to be told that he has not had time!! I am unable to see a neurologist without a referral from my doctor- wish I lived in America. At least I have the support from your network which without I would call it a day. God Bless you all. Pat”

Her words and those of many others around the world speak for themselves!  Click on the link to see other patient and professionals comments on the Neuropathy Support Network.

NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: gene@neuropathysupportnetwork.org

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

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