Guidelines for Neuropathy Support Groups

 

1. Purpose of a Support Group or Network:

It is very important that the purpose of the group be clear in your mind and in the mind of the group.  Knowing the purpose will help everyone understand that while a group can be therapeutic by its very nature, it is not therapy.    

The purpose of the group is to:

• ·         Provide opportunities for patients to help patients;
• ·         Educate patients with basic information on neuropathy;
• ·         Point patients to reliable resources / answers for their neuropathy;
• ·         Assist patents in discovering practical solutions for patient symptoms;
• ·         Involve patients in community outreach dispensing educational information.
• ·         Dispense patient affirmation that neuropathy is a real disease;
• ·         Teach them how to partner with a neuromuscular neurologist;
• ·         Create an atmosphere of hope and encouragement;
• ·         Empower patients with neuropathy knowledge;
• ·         Enlist patients and groups in fund raising activities to support the NSN mission.
• ·         Help patients find a neuromuscular neurologist in their area.
• ·          

Helping patients find reliable information via the web site Neuropathy Support Network is helpful as is exploring the resources that are available.  Knowledge is POWER.

I do not allow a support group to become the opportunity for a sales person to promote a product, as they will take over your group.  I make good information available via pamphlets after I check them out.  Anyone pamphlet that makes broad unrealistic claims is often not permitted.  To check out a particular resource E mail gene@neuropathysupportnetwork.org and he will ask the professionals and patients.

Keep open to new or novel ideas, but beware of those who claim to have THE answer for ALL neuropathies or claim this is the cure while charging patients a bundle! With over 100 causes and so many types of neuropathy there is no one cure all.  Apply the idea that “if it sounds too good to be true, it is too good to be true”.  If unsure, send E mail to Gene at the NSN.

Help patients understand why PN is often difficult to diagnose.  Diagnosis of Neuropathy is primarily made based on the patient’s symptoms and health history and not one test.  We now have tests to determine if a known cause is present in a patient or to test if and what damage has been done to the peripheral nerves by the neuropathy, but none of these if negative will rule out neuropathy!  The diagnosis of neuropathy is primarily subjective and often based on the patients’ health history and symptom complaints.  Diagnosis is seldom possible if the physician does not take this patient information seriously. While we do not want to dismiss the importance of objective testing, the point is that lawyer types who want only objective data are not helpful for the patient, just the insurance or disability companies.

Videos, links, websites and information we have from internet connections during meetings are often under used in meetings.  A discussion of the contents of these resources or sections of the DVD with small group break out, are ways to add some direction or constructive educational structure to patient dialogue.

Many meeting rooms have internet access and patients who have computers could bring them to the meeting.  Computers can be shared with those who do not have one.  In some meeting places there are projectors available and screens or a TV on which the image can be projected and use these resources in the meetings in place of speakers.

Keeping a balance in groups between, patients sharing and receiving reliable information is important.  Some structured focus is the greatest challenge and is critical to good meetings.

2. Qualifications:  In my opinion almost anyone can lead a support group if they have Peripheral Neuropathy, some teaching skills, group leadership skills, organizational skills and lots of determination to help others.

That being said, if you have a high school diploma, or a college degree that will help, especially with studies in group dynamics, psychology, counseling, social work, nursing, education, or similar as you will find these skills helpful.  But, more important is your own willingness to learn and your experience as a neuropathy patient as these experiences will help you understand neuropathy patients.

Bottom Line:  You must be willing to read and be familiar with the general contents of the Peripheral Neuropathy Resources.  This would include the three books I mention in paragraph 15 and use them at all times.  Become familiar with the general contents of the web site of the Neuropathy Support Network as it is a major resource for everyone.   This information has been reviewed and approved by a Board Certified Neuromuscular Neurologist and affirmation by patient experience from around the world.

You must understand that what you and others do and say in a group is educational and not prescriptive, encouraging everyone to always check things out with their health care professional who is the only one who can prescribe or diagnose as determined by law.

3. Keep it simple.  Keep the organizational structure simple without creating unnecessary tasks and procedures just because that is what groups do.   Do not do something just because that is the way to organize a group.  Every group just like patients is different.  If what you do works, do no more.  You can always add and adjust to the less or more.

Co-Leaders: At a minimum one should have at least one CO-leader in the group to lead from time to time or take over if you become unable to do so.  You will have natural leaders rise up from the group.  Develop them and utilize them as they are great resources to empower for the benefit of the group.  This takes a bit of skill as these wonderful people will often challenge your leadership, but this is normal.  Find ways to involve them and provide opportunities for them to use their skill.  Avoid getting into what one could call a ‘urinating contest’ as some neuropathy organizations are unfortunately involved in such with those they feel are not controllable and fail to see these leaders as resources to be empowered and employed!

4. Quarterly Meetings: Recommend you consider quarterly meetings if monthly meetings become difficult as otherwise it might become more burdensome with the symptoms of your own PN or your limited time …you may burn out quickly.  But if more often is for you, go for it, you can always adjust and do less. 
5. Support Network:  Think of your activity as a SUPPORT NETWORK and not only a support group that meets or helps only in one place or time!  Encourage questions and communication between structured fixed meetings.  

If you have someone E mail you with a question, or call you and you talk to them and help them, you have just had a support group meeting! 

Patients can send any Question on Peripheral Neuropathy from Neuropathy Support Network website and we will respond with answers.  These answers can then be shared back with the group with discussion.

Principle: How a patient thinks about something, determines or influences feelings, which drives behavior!  In a group you and the group are helping patients think in more constructive ways with reliable information. Thinking is difficult when you are hurting physically or emotionally, thus group or individual support is essential for the patient to find ways to think more constructively.

The internet can be an excellent and cost effective way to point patients to resources and information.  The difficult part is sorting out the snake oil from the reliable facts.  Some reliable resources would include:

Neuropathy Support Network:  

Foundation for Peripheral Neuropathy click here:

Neuropathy Action Foundation at click here:

Hereditary Neuropathy Foundation at click here:  

Western Neuropathy Association newsletter by sending E mail to: nccna98@colfaxnet.com   

*GBS/CIDP Foundation click here:  

*The only unfortunately warning I would share is that some of these groups think as if the whole goal is about THEM rather than the neuropathy patient.  They demand absolute control and domination of patients for their organization.  Resources from other groups are dismissed or not permitted or even worse you may be ‘punished’ for using them!  This is sad but true as I have been there and been the subject of such attacks.  Use these resources but understand the control issues some of these groups have in limiting help for patients.

The Neuropathy Support Network values first and foremost the neuropathy patient and their needs regardless of the source of the reliable information.  We are working hard to influence the thinking of those who do not value the patient, but rather place their own organization and themselves before the needs of the patient.

What makes the Neuropathy Support Network different is that it is a mission driven by patients for patients with a solid foundation from advisors and reviewers who are medical professionals, resources that are medically approved and affirmation from patients experience from around the world.  This is why it reaches patients, for the NSN goes where the patient lives rather than to just the academic world of the medical professional, which while very important, does not necessarily address the patients ‘burning’ questions.

Most patients want information and often will attend a meeting and get the answers and not return.  Do not take this personal as it is supporting information that many of them want. 

I recommend the Prayer for Neuropathy Support Group Leaders.     

Remember if you have a meeting and only 1 person shows up, you now have 2 (you and the other person) at a meeting and you are able to help them.  Or if someone calls because you put out information, you now have had a meeting with 2 people!  If no one shows up you will be glad you do not have a nationally known speaker or refreshments for 50!   When no one showed up at my meeting, I spent the time reading and learning or talking to the staff in the building about neuropathy.  That is the goal, reaching and changing people one at a time.  Think network, NOT numbers at a structured fixed meeting, will keep you motivated and encouraged.  Otherwise you will work hard, have one person show up and you crash thinking I have failed when you have actually succeeded!

6. Focus:  Helping patients or attendance?  Focus on patients helping patients and not on attendance numbers.   Otherwise if only one or two show up you will become discouraged.  Think – if one shows up, wow, I get to help one person!  If 10 or 20 show up, okay, but I will tell you that 20 to 30 is the maximum as more dialogue happens in smaller groups if for no other reason than ‘time’.   Actually more dialogue happens even with 3 or 4 than with large crowds and some of these meetings have been the most beneficial.   It is very important that you set your MENTAL attitude toward helping patients and not on large groups as a measure of your success.   If you help ONE person, you are a success!!

7. Time of Meeting:  A meeting on Saturday morning for those who cannot drive at night or work during the week or at night if driving at night is not an issue is some of the considerations.  Yet, you must set the time that works for you and DO NOT try and please everyone as to time or location.  That is impossible.  I have had folks who will come if the meeting is next door and at a time they will attend!   

8. Refreshments:  I avoided refreshments.  If you do have such, keep it at a minimum and put someone in charge of taking care of this task.  Some facilities are willing to provide these at no expense and if so fine, but if you have refreshments prepared for 30 and 5 show up, I found it is very embarrassing.  

9. Speakers:  I keep speakers to a minimum and the best speakers are often skilled patients who are professionals with practical information and who have walked the walk and so talk the talk.  There are some good speakers, but just be very selective and do not over do it.  You may worry about what is going to happen at the meeting and feel a need to structure it to reduce your own anxiety.  Yet I can tell you that once the conversation gets going within a relaxed climate, guiding it will be the biggest challenge and it just flows.  You or others can help be a resource for answers to their questions.  Guide folks to ask questions and seek answers and you now have three great books mentioned below, the websites and DVD as resources!

10. Marketing Professionals:  I avoid marketing professionals who want to turn your meeting into a sales meeting event for their product.  Beware of snake oil people for they will take over your group as they have their sales purpose in mind, not the group’s needs. If in doubt send a question about the resource to the NSN to receive an objective evaluation about the product or claims.  gene@neuropathysupportnetwork.org   

11. People who know it all:  I avoid speakers who HAVE ALL THE ANSWERS for all neuropathies.  Neuropathy is a disease of the Peripheral Nervous System and there are over 100 causes and many types of neuropathy.  No one cure will work for all neuropathies!

12. Helpful speakers:  A podiatrist speaking to the group on care of the feet for diabetic neuropathy is a valuable resource.  Another good speaker would be someone familiar with neuropathic illnesses and who knows how to address exercises or physical therapy for the neuropathies.  Here is the Neuropathy Support Network’s article on Exercise and Physical Therapy and how to order the DVD on Exercise for Neuropathy by Dr. Hansen, DPT.  

Another would be a pain management specialist or pharmacist who understands the medications for neuropathic pain. The Neuropathy Support Network has an article on What is Neuropathic Pain, and on How is Neuropathic Pain Treated.

Another might be someone who has special insights into how to work with your doctor when you have a neuropathic illness. The Neuropathy Support Network has an article on Doctor Patient Relationships, which every neuropathy patient should read.   

There are articles on many of these subjects on the NSN website. 

Caution:  Do not think you always need to have speakers, as this can undo the benefit of patient dialogue in helping each other.  Not having a speaker may produce more anxiety (which is normal) or fear of what if nothing happens (all normal feelings and thoughts).  You will learn over time to allow the “silence” or “freedom” of a group do its job in encouraging each other.  Having questions and breaking out into small groups for discussion with a sharing time with the entire group after a presentation can be an effect way to manage a larger group.

13. Medical Advisors for a support group:  Ask a Board Certified Neuromuscular Neurologist’s if they would be the medical advisor to the group in case something comes up that no one can answer!  You may want to ask them to speak to the group and then do a Q/A session.  Have the group give these medical professionals a copy of the three books, the DVD, and the poster on the NSN as a resource for patients.  The Medical Advisor to the Neuropathy Support Network is Dr. Waden Emery III MD FAAN and here is his take on What is Neuropathy and his other follow up articles.

14. Toxic People:  They exist as Mims Cushing states in her book.  People whose purpose is to challenge your leadership, discourage you, discount your work, or need control of everything or negative people who destroy hope or ideas of others.  Walk away from them if you can, as it is very unlike you will change them.  Confront them directly as they seldom will take an indirect hint.  If it is really destructive, to the group, call them aside and simply ask them to leave.  This does not happen often but it does happen.  In hundreds of meetings over the years, behavior like this has happened for me only three times.

“Isn’t it awful and there is nothing that can be done type people!” Avoid allowing the group session become only a complaining session of bad news for one dominating individual.   I remember one patient who after a very informative session, came up and said, “In other words, if I hit my toe with a hammer, I will not notice the pain from the neuropathy”.  This person was not receptive to learning or as we say in education, was un-teachable.  It was their failure not ours, but it can be frustrating, yet we always look for better ways to reach such personalities.  The Neuropathy Support Network article Your Choices are NOT Among Cures, Treatments or Coping. 

It is one thing to allow an atmosphere where people feel free to share what is happening negative or positive and heaven knows patients need affirmation and being allowed space to share feelings, fears, questions, or experience.  If the meeting becomes a 2 hour pity party or a competition as to who is suffer worse (one up man ship) or who can tell the worst story, attempt to turn the session into one that looks for solutions, answers and help.  The three books mentioned and the NSN website will help in this regard.   You will become more skillful at this as your experience with the group increases.  At times I have done this by saying, “I wonder what Dr. Latov or Mims Cushing or Scott Berman’s or an article on the NSN website or other website has to say on this subject or what answers do they provide? Maybe someone would look this up and share with us at the next meeting?”

15.  People with serious mental health issues:  Again in meeting thousands of patients and working with them, only 8 come to mind over the past 14 years.  They need therapy and help and the best thing you can do, is take them on the side and share two things.  This group is therapeutic, but it is not therapy of the kind they might need.  You may want to suggest that they read Dr. Berman’s book as he encourages them to seek the help they deserve.   You could also refer them to a good Neurologist who is trained in psychiatry and they will make the referral for therapy. 

There are normal adjustments to chronic illness that we all face or the normal processes of grief work as our illness takes from us things valued, as opposed to when people need more in-depth help for a preexisting neurosis or psychosis. 

16. Become an expert on locating resources and information for patients:  Read and become familiar with four books and the contents of the website: Part of the task of the support group leader is to know where to go for resources, answers, and lead the patients to these.  Someone once said that an educated person is not one who knows everything, but one who knows where to look for information. 

The website and the books must become your bible and the members of the group must read them.  If someone cannot afford a copy, I had several copies which I would either loan, give, or sell to patients and have been known to give a copy out for free. Use the website articles and the books as the resources for your group.  We are blessed to have them.  In the 1990’s we did not have any books or a good patient oriented website to help.  You can use these books as subject starters or to seek answers for patients or have patients seek answers for themselves. 

Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop by Dr. Norman Latov, M.D., PhD.  Available from amazon.com. Other books on:  Books on Peripheral Neuropathy.

Here is a book that provides the patient with insight into the broad spectrum of the types, causes, and treatments for all the neuropathies.  No patient suffering from any neuropathy should fail to read this book as a beginning point in understanding the what, why, how and where of their disease.  This knowledge in the hands of the patient provides them insights that are invaluable in increasing their skill in enhancing the patient-doctor partnership as the patient seeks a diagnosis and treatment for their condition.  It should become the Bible for any neuropathy patient for it provides both affirmation and encouragement for their walk with an all too often confusing illness. 

You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Better Life by Marguerite (Mims) Cushing, patient and Dr. Norman Latov, M.D., PhD Published 2009 available from amazon.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.  The story of Colonel Eugene’s journey of 41 years in on pages 158-161 and his travel tips are on page 111.

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.  Available from amazon.com. 

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.

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. 

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.

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

17. Other Resources that can help your group discussions.

To see the Neuropathy Journal articles on the website.  

Have patients order a copy of the DVD “Coping with Chronic Neuropathy”.  

The medical Textbook of Peripheral Neuropathy, Peter D Donofrio, MD, Editor, Professor of Neuropathy, Chief of Neuromuscular Section, Vanderbilt University Medical Center, Nashville, TN Published by DEMOS Medical, 2012

“Approach to the Patient with Neuropathic Pain”, by Dr. Daniel L. Menkes, M.D. Department of Neurology, UN of TENN, read pages 409 – 410, published in PERIPHERAL NEUROPATHY: A Practical Approach to Diagnosis and Management, Dr. Didier Cros, M.D. Editor.  The most helpful 2 pages I ever read on neuropathic pain!

Neurology NOW Magazine – free –  or call  800-879-1960 for anyone with any neurological illness… neuropathy articles are increasing…so subscribe and let them know of your interest in Peripheral Neuropathy articles…the squeaking wheel does get the grease! 

IG Living Magazine is free for those living with an immune mediated neuropathy such as GBS, CIDP, MMN, Autonomic and variants of these and receiving immune globulin IVIg.  This magazine is packed full of great information and is one of my best resources.

18.  Roster:  I kept a roster of member address, phone numbers, and E mail addresses on my computer.  However, I found that it became too expensive to mail items out and found it better to use the internet E mail system.

19.  Advertisement:  I advertised meetings in the local newspapers usually in the SUPPORT GROUP column and often a lead time of two weeks or more are required for your notice.  You can do this on line for most newspapers.  Also look for small publications or fliers in the community like the COFFEE NEWS that goes out to local businesses.

    20. Newsletter:  This just became too expensive to do and so we emphasize the internet for information at the website and the NSN does send out an E newsletter from time to time to those who register with the NSN.  Click here to sign up for the NSN newsletter (the sign up is in the RIGHT bar of this page.)

Bev Anderson on the Pacific Coast has an excellent newsletter and patients can join them by sending an E mail to nccna98@colfaxnet.com

21. Doctors:  Keep a list of local doctors and contact information from patients who have been helped by them!  That way as people need a doctor, who has some training in the clinical diagnosis and treatment of the neuropathies, you can refer other patients to them.  Encourage patients to tell you if the experience was good or no so good. 

Remember Neuromuscular Neurologists who are Board Certified offer the best hope of help.  However, there are only a few who have the disposition to listen, hear (take patients subjective explanation of symptoms at face value), treat pain with patience until something works, and do the detective work that is needed to find the type or cause of a neuropathy. 

In March 2012 Neurology Today, they published an article, “How to Diagnose Peripheral Neuropathy? No Simple Answers – Experts Offer some Guiding Principles”.  This is an excellent guide to the issues of diagnosis.  The only test left out is the diagnostic value of the spinal tap for immune mediated neuropathies. 

22. Important lessons for patients: In my mind a diagnosis of  “Idiopathic Neuropathy” is only an excuse to stop looking, save time, save money by not testing, or not thinking or the lack of sufficient training to interpret the tests/procedures which are now available.   Such tests would include the EMG, Nerve Conduct Tests, Evoked Potentials, Spinal Tap or the Skin biopsy in addition to the patients’ medical history, progression of symptoms of neuropathy and the doctors’ examination.  Recently as reported in the Journal of the Peripheral Nervous System there is the hope that the number of idiopathic cases will decrease as we build our understanding of neuropathy. 

On the other hand, the idea that idiopathic may be a form of neuropathy all of its own is being discussed and that the term may give way to something more helpful to patients. 

Yet patients must know that if a doctor says you have peripheral neuropathy and nothing can be done, find another doctor. 

Some doctors or patients’ may say, why do the testing, if there are few treatments.  The testing may reveal issues of the type neuropathy or damage to parts of the peripheral nervous system that may lead to ideas about treatments or approaches to the symptoms that may be available and work!

The FAQ tab of the website has the basic answer to understanding Peripheral Neuropathy.  To see the Frequently Asked Questions.

The patient’s medical history and the development of their neuropathy over the years are critical factors for the doctors diagnose and possible treatments.  

Many neuropathies have a remitting and relapsing pattern, which means the symptoms come and go driving both patients and doctors to ‘drink’.  If the doctor only wants to hear what is happening now, or if symptoms are absent at a meeting with the doctor, unless they are aware of these patterns, the doctor may dismiss you.  Find another doctor.  The NSN article speaks of Remitting and Relapsing – or Will my Neuropathy get Worse? 

23. Last but not least, read the Prayer for Support Group Leaders when you become discouraged.   

DISCLAIMER: The information provided is intended to be educational and informative and not medically prescriptive or diagnostic. All patients are encouraged to consult with their own medical doctor when considering any of the information contained within.

Copyright – 2014-2015 Network for Neuropathy Support, Inc., 501c3, dba as Neuropathy Support Network. This article or its contents 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.

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