Neuropathy patients face many challenges and one of these is often the loss of meaning and purpose as the disease changes our lives, our roles, our expectations, forcing us to find new meaning, new purpose for living.
There was a retired General who facing boredom went to work as a Wal-Mart greeter. A great worker, all was well except every morning he reported late for work! One day the supervisor called him aside and said he was a great asset as a greeter, but there was a serious problem. The supervisor asked him, “What happened when you were late for work in the military? What did they say to you?” The General thought for a moment and then said, “They usually said, good morning sir.”
The General discovered that finding new meaning in a new role was not the easiest task as his values and assumptions from his previous position, role and experience stood in the way. For us to find new meaning for our lives by helping patients likewise is not the easiest task as we attempt to relate to them out of our past position, experience or role.
Yet whatever the challenges, helping other neuropathy patients is one way of rediscovering new meaning, new purpose while living with neuropathy. Why? What are the benefits?
- You keep learning helpful information about neuropathy.
- It provides new meaning and purpose to your life with neuropathy.
- You help increase awareness and knowledge about neuropathy changing both the public and medical professionals attitude toward neuropathy.
- We rediscover “it is more blessed to give then to receive” something we may have found as a child when we gave our first crumbled up wild flower to our Mom in a moment of excitement, pure love, and discovered the joy of giving!
A Story: We all have one or more – but to grasp the answer to the question as to why this topic is so important in finding new meaning for our lives, let me share a story from my journey.
In 1999 after a journey of over three decades of seeking help, my primary care doctor Mohamed Noshi diagnosed me with peripheral neuropathy. Like most patients I wanted to say, “peripheral what?”, but the important point is he diagnosed because he listened. Secondly he took the medical history seriously. Dr. Noshi then referred me to the expert at a major medical center.
In 2000 this expert (a professor of neurology at a major medical center) proceeded to dismiss Dr. Noshi’s diagnosis and my medical history. It was only later that I noted in my medical records his statement that ‘the patient was claiming to have something he did not have’. The sole basis for this conclusion, which he stated in the medical record, was he was able to obtain reflexes in my leg with compression.
Here is where your knowledge helps. Patients do not have to look far to understand that in the neuropathies reflexes are sometimes diminished, or absent, but not always! (I learned this from the book by Norman Latov, MD, Weill Medical College, Cornell University ). So I now knew that this was hardly a standard for the sole basis for diagnosis or dismissal of neuropathy.
Yet this horrible experience was what led me to a wonderful experience with a patient Mary Ann Donovan and the fact that she became my angel in the night. After decades of searching for help, becoming progressively disabled, fearful that I was losing my mind, and armed with a diagnosis I did not understand, I now have the ‘expert’ trashing it all and I have no idea why.
My wife who was with me in the office that day, as this expert walked out for lunch without saying another word, we began to cry and I crashed emotionally. I did not want to live and I felt terribly alone.
That very day I called the only people I knew, leaving a message for Mary Ann Donovan, a patient leading a neuropathy organization. It was a message of total desperation. That midnight she returned my call and listened to my experience. She then told me something that I never forgot. She said, “The doctor is not your problem, your problem is your neuropathy. Stay focused on finding a doctor to help you and forget this failed physician.” She became my angel in the night and sent me on a mission of multiple purposes to get help, learn, and then help other neuropathy patients as she had helped me. It has become the best mission and job of my life.
Driven by such failures such as the lack of research for neuropathy; the lack of practical clinical knowledge on diagnosis and treatment, plus poor attitudes and lack of awareness about neuropathy, I had found a war worth fighting for myself and others.
Among my 43 years of coping with Peripheral Neuropathy there was one other event that catapulted me into finding ways to help other patients battle neuropathy.
The other story:
In 2004 we discovered that my symptoms responded to immune globulin or IVIg. (NOTE: I had discovered a research paper on the issue written by 21 neurologists suggesting a trial of IVIg would be appropriate in my case and simply gave it to my neurologist!) What I did not know were the many issues around IVIg included little guidance on dosage, rate of infusion, manufacturing product differences and that one size does not fit all, and the infusion doctor would not listen to what was happening to me. It was classic congestive heart failure from the buildup of fluid in my lungs!
Then I found a patient who was receiving IVIg and had a similar issue, knew what was happening to me and why. In between here I was rushed two days later to the emergency room with ‘heart problems’. But this patient said, go talk to your neurologist and explain the feeling of drowning and difficulty breathing. He noted that the literature that comes with the product notes, we needed to consider a slower rate of infusion or 30 ml/hour and give Lasix pre and post to help avoid congestive heart failure from the retention of the thick glue like fluid. The literature in the product noted that this was a common problem with those over 65.
The new neurologist wrote up the script in this manner and the rest is history, no more problems because a patient had learned by reading the literature and was committed to helping other patients.
As a patient helping patients – you have taken on a tough job!
Understand that you who have committed to this difficult task must realize that this is not the easiest thing you will ever try to do!
I am reminded of the story of the Grinch who had a heart one size too small and yet had a very tough skin. Unlike the Grinch, you all have a very large heart and thus you care. Yet at the same time you must have the hide of an alligator to remain committed to this sometimes difficult task.
I have a prayer that I would like to read which goes something like this:
THE PRAYER
People are illogical, unreasonable, and self-centered.
Love them anyway.
If you do good, people will accuse you of selfish ulterior motives.
Do good anyway.
If you are successful, you will win false friends and true enemies.
Succeed anyway.
The good you do today will be forgotten tomorrow.
Do good anyway.
Honesty and frankness make you vulnerable.
Be honest and frank anyway.
The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds.
Think big anyway.
People favor underdogs but follow only top dogs.
Fight for a few underdogs anyway.
What you spend years building may be destroyed overnight.
Build anyway.
People really need help but may attack you if you do help them.
Help people anyway.
Give the world the best you have and you’ll get kicked in the teeth.
Give the world the best you have anyway.
ARMED WITH PRAYER … JUST DO IT.
Some answers to the challenge which comes with helping others:
To accomplish this meaningful task, you must first educate yourself and become FAMILIAR with good reliable resources and use these to help others.
This is important as otherwise you are one person in an unknown sea of misinformation or lack of information or cure-alls or snake oil, or those who make overstated claims, or sales people and the questions or issues will overwhelm you.
You must become familiar with RELIABLE resources. A patient asks me a question. I then think of my resources and if the answer is in a book I find it in the index and I take the patient to it. If the answer is on a website I provide them with the http link. This is why I place the FAQ tab on the website as these are the issues that a patient must understand as the foundation for knowledge regarding PN. These answers have been reviewwed and approved by a Board Certified Neurologist.
Here are my reliable “Bibles” on neuropathy and all of them are well worn and used including the fact that my dog Rocky chewed one of them up several times.
Dr. Norman Latov’s book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop. This book will help you understand the total scope of neuropathy to fight against simplistic answers and cure all’s.
Mims Cushing’s book a writer and friend with neuropathy: You Can Cope with Peripheral Neuropathy: 365 Tips for living a better life – is about ways patients have discovered for coping. It is full of ideas from patients. You many not find the whole book helpful or the inclusive eastern philosophy may be bothersome to a few, but it is full of ideas and one of them may help a patient!
Dr. Scott Berman, MD a Psychiatrist with neuropathy and a dear friend wrote the book Coping with Peripheral Neuropathy: How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain, and Relationships. He has walked the walk so he can talk the talk!
If you want a medical textbook on neuropathy see the Textbook of Peripheral Neuropathy by Peter D. Donahue MD FAAN Editor as it was written in 2012! Why the excitement, it is one of the first medical textbooks dedicated just to Neuropathy! Progress for sure.
Websites:
The Neuropathy Support Network website, developed by patients from a patients point of view, is full of resources developed to help neuropathy patients including medical directories of neuropathy doctors, neuropathy support groups, and even clinical trials on neuropathy medications and treatments.
The article by Waden Emery, MD FAAN, Clinical Neurologist on What is Neuropathy and the related articles is a very inclusive article on the whole view of neuropathy.
The Neuropathy Support network’s sister website the Neuropathy Journal is the first ever journal dedicated just to Neuropathy and contains extensive articles written by neuropathy patients for neuropathy patients and they are reviewed by medical professionals.
Look at all these resources. In the early 1990’s we had nothing! Are we making progress by patient and doctor involvement? Think so and in recent research articles the professionals even called it a disease!
Two products of my 44 year war against neuropathy is the development of the this website along with the production of the DVD Coping with Chronic Neuropathy released in 2010 and revised in 2014, produced by patients for patients and reviewed and endorsed by medical experts.
The major principle in patients helping patients is you are guiding patients to good information and reliable resources but you are not diagnosing or treating them. Your work is educational/informational and is neither diagnostic nor prescriptive. Do not ever allow anyone to tell you that you are not permitted to do such for patients.
In this regard I have set FOUR goals for patient guidance.
- Your first goal is to help them educate themselves about Neuropathy.
- Your second goal is to help them find reliable resources for coping and support.
- Your third goal is to encourage them to seek a complete diagnosis and identify the cause for their neuropathy.
- Your fourth goal is to encourage them to become involved in increasing awareness and motivating doctors to become clinically informed in the diagnosis and treatment of the neuropathy patient.
Now, having educated yourself on the above resources, how do I make it work?
- When helping a patient find an answer use the index of the book to find the subject and guide them to it. This way you can say: Dr. Latov says on page or Dr. Senneff says on page or Dr. Berman on page says, or Mims Cushing’s book notes these ideas on page….
- Encourage them to purchase the Books on Peripheral Neuropathy….from amazon.com
- Encourage them to request the FREE DVD on Coping with Chronic Neuropathy.
- Encourage them to use the Neuropathy Support Network and the Neuropathy Journal websites.
- For years I sent out information often the same information and finally realized that I needed to deposit this so that new patients and others could find it. This resulted in the Frequently Asked Questions on the NSN website.
- If responding to them by E-mail, find the article or information in the website and paste the website address for the subject or article.
- At meetings use the DVD Coping with Chronic Neuropathy. Some groups look at sections of the DVD and then break into small groups to discuss and share, or show a video, or print out the materials. Some have members bring in computers and gather round them while looking at the materials on a website. It is a way of structuring a meeting without having a major speaker every time!
- In the near future we will be streaming the DVD “Coping with Chronic Neuropathy” on line and it will be presented as short chapters!
Why we are winning the neuropathy battle?
Because of these new resources and because PATIENTS such as the late Mary Ann Donovan or Pam Shlemon of the Foundation for PN (IL), Allison Moore of the Hereditary Neuropathy Foundation (NY), Bev Anderson (CA) of the Western Neuropathy Association or Dominick Spatafora of the Neuropathy Action Foundation (NV), or Nancy Herlin of the Neuropathy Alliance of Texas (TX), Shirley Lynn (KS), Linda McIntosh (CN), Terry Thompson (WA) , Roxanne Nordlund (CAN), Stan Pashote (CA) and hundreds of others plus leaders in India, Pakistan, Romania, New Zealand, Australia, South Africa and growing around the globe, many among you DID NOT give up or walk away because your heart is one size too BIG and your hide is as tough an alligator.
Remember in helping patients you are:
Guiding them to good information and reliable resources and you are not diagnosing or treating them. Your work is educational and is neither diagnostic nor prescriptive.
And the four goals for patient guidance are:
- Your goal is to help patients educate themselves about Neuropathy
- Your goal is to help patients find reliable resoures for coping and support
- Your goal is to encourage patients to seek a diagnosis and identify the cause for their neuropathy.
- Your goal is to encourage patients to become involved in increasing awareness and motivating doctors to become clinically informed in the diagnosis and treatment of the neuropathy patient.
We founded the Neuropathy Support Network because we often meet people like ourselves who at one point were ready to give up the fight. Too many neuropathy organizations thought that patients could not share information and educate patients unless they were doctors. However, as a result of our inner strength, we fought back learning that when we feel lost because of neuropathy, we can find ourselves again through helping others and searching for new meaning in our lives. By sharing our experiences we gain new insights on how to deal with this often misunderstood affliction while helping patients fight their own personal battles with this insidious disease.
