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Foundation for Peripheral Neuropathy takes over work of The Neuropathy Association

In December 2014 The Neuropathy Association that has been one of the leading education and awareness resources for those with peripheral neuropathy has folded.  The Foundation for Peripheral Neuropathy based out of Buffalo Grove, Illinois, now focuses resources on research into treatments and cures and to consolidate advocacy efforts at local and national level to raise awareness. The public and government support to find solutions to neuropathy is not resulting in adequate financing for research and testing. With estimates of over 20 million people in US afflicted with the disease, PN is not as well known as many diseases which have only a fraction of that many people affected. Check out what is happening at the Foundation for Peripheral Neuropathy at its website www.foundationforpn.org . FPN has set up a Peripheral Neuropathy Research Registry (PNRR) coordinating patient information with five leading academic centers to help improve diagnosis, identify biomarkers, accelerate drug discovery and bring new treatments to patients as quickly as possible.

Past Meeting Notes:

February 24, 2018 Meeting Circle of Conversation People shared strategies and opinions.  Below are some highlights.

Susie from Plymouth told the group she’s researched offerings by the Mayo Pain Rehabilitation Center, which offers both 2-day and a 17-day programs. She noted that the longer program costs $42,000 and is held Monday – Thursday for 4 weeks. Susie said that her insurance will assist with the cost and she plans to begin the longer program later this year. We will be anxious to hear from her after she has completed this!

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Although Realief didn’t help the first person who brought it up, another member told the group that Realief stopped the progression of her neuropathy. One member told the group that “Realief” did nothing and he also found it to be costly. He reported that he saw Dr. Kelm and that he had 14 treatments (the amount recommended by the clinic) at a cost of $191 each. Lois reported using Zopec every morning. This involves electrical stimulation, and she believes it is helpful because she noticed a difference when she didn’t use it. Steve said that laser treatments didn’t work for him, and, in fact, his symptoms worsened after starting laser treatments. He also said that he thinks exercises may help symptoms, and he believes very strongly that sugar is bad for neuropathy. Phyllis told us that she has success with Biofreeze and Lidoderm patches. She noted that patches containing 5% Lidocaine require a prescription, but that 4% patches are sold over-the-counter. Someone made the comment that drinking lots of liquids during the day makes leg cramps better for them. Lois reminded us that nerves regenerate very slowly, so it may be hard to tell what is actually helping, and hard to know how long a fair trial (of any treatment) should be. Mary reminded the group that it is possible to have two medical problems at once, so just because someone has neuropathy and some other medical issue, doesn’t mean that the second issue has anything to do with neuropathy. Mary also suggested that we use our “invisible disability” as an opportunity to bond with others who also have one, and gave the example of bonding with her son, who has schizophrenia. She pointed out that many invisible disabilities draw stigma, disbelief, doubt, minimizing, etc. Two videos were shown featuring Vietnam Veteran Gene Richards, who developed disabling neuropathy as a result of exposure to Agent Orange. The first video’s subject was the importance of patient support groups. Patients who are suffering know things — and can share information (that doctors may not). The focus of the second video was “Anger as Energy.” Mr. Richards advised patients to believe in themselves, and remember that the problem “is not the doctor — the problem is the disease!” He went on to say that when you feel you are not getting the acknowledgement and support you deserve from providers or others, you should use your anger to drive your feelings, which will lead to ACTION.

August 31, 2017 Meeting Dr Jeffery Allen: “Neuropathy updates from the University of Minnesota: Active and future clinical trials”

DR ALLEN, a neuromuscular specialist and clinical investigator, discussed clinical trials at UMN that are currently enrolling and those that are expected over the next year, including trials relevant to inflammatory neuropathies, diabetes, hereditary neuropathies, and others. The presentation was followed by a question and answer discussion. More information about the Painful Diabetic Neuropathy Clinical Trial (PDF) More locations can be found on the ClinicalTrials.gov page here: https://www.clinicaltrials.gov/ct2/show/study/NCT02427464?show_locs=Y

July 27, 2017 Meeting “Walkasins Helped Me Walk Again” Report from a patient with diabetic peripheral neuropathy 

Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology is currently going through the regulatory process for medical devices under the FDA. More information is available on their website: http://rxfunction.com/

May 25, 2017 Meeting Alternative Treatments for Neuropathic Pain

Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota.  The other compounding pharmacy being the Mayo Clinic in Rochester.  More information can be found on the Lake Elmo Pharmacy website.

January 21, 2017 Meeting Circle of Conversation

The Circle of Conversation format has become one of our most popular meeting formats.  We have had several requests from members, both new and old, who would like to meet fellow members and discuss their concerns/problems with neuropathy.  Some of the topics discussed were: “What is the number one thing you would change about neuropathy, if you could?”  “What’s the worst thing about your neuropathy?”  “Is there anything good about neuropathy?”

September 17, 2016 Minnesota Neuropathy Association 20 Anniversary Celebratiion Member notes for meeting

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1st Speaker – Dr. David Walk: “The Basics of Neuropathy” David Walk, M.D. – Dept. of Neurology, U. of M.

Dr. Walk gave us the high level view of what neuropathy is along with the basic anatomy of the nerves and how the small and large fiber nerves work with the brain to tell us what we feel, etc. He told us his work is primarily research but that he does see some patients. Some, but not all of the topics he discussed:

2nd Speaker – Pam Shlemon – Director of Foundation for Peripheral Neuropathy – “What’s new & living well with PN” Pam shared how The Foundation for Peripheral Neuropathy got started and presented a slide show of the foundations current projects. Some of the topics she discussed:

3rd Speaker – Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy” My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it. Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy.  More information can be found on his website: The William R. Kennedy Lab

April 28, 2016 Meeting

Denise Nelson RN presented the business approach used in VIP Nurse Consulting to aid patients in working through the current health system when issues arise due to multiple and sometimes conflicting treatments. She offers a professional background in nursing. In acting as patient advocate both with patients and doctors, she provides a strong problem solving approach to make positive changes in the lives of her clients.

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The business is a fee-for-service style and is not reimbursed through insurance. The benefits of having this type of assistance are possible by financial return through decreased prescription medication costs once changes are made to improve the patient health and remove conflicting treatments offered in our current medical network. Often times the changes are small, such as improving nutrition or beginning simple exercises. More involved advocacy can take the form of Denise attending doctor appointments with the patient to ensure all issues are effectively addressed. Having years of professional experience allows her to ask pertinent questions of the doctor that many of us would not know to ask. Additional financial return for a contract with VIP Nurse Consulting may improve quality of life by enabling patients to stay in their own home rather than have to move to assisted care facility. If you are unable to adequately advocate for your own health care and do not have family members that can assist with this, perhaps it is time to consider a professional arrangement for improved access to our ever changing medical system. For more information on available levels of support or for personal consultation contact Denise Nelson RN at 612-387-5532. Email Denise at denise@vipnurseconsulting.com or see the website at www.vipnurseconsulting.com.

July 30, 2015 Meeting

Brigitta Rice, MS, RPh, CHES presented the WarmFeet Program. Providing compelling descriptions of how this treatment can increase body temperature, circulation and the bodies normal healing function, she led the 40 or so meeting attendees in a demonstration of her relaxation program. The audience was given sample thermometers to measure a baseline body temperature and then after the session they were again asked to measure their temperature to determine the effect. Several in audience said they definitely felt an increase in temperature just sitting there, no need for the measurement. Ms. Rice offers a CD which provides the structured relaxation program for use at home. No expensive doctors visits, no medications or devices with this method.

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Not having direct case study results regarding peripheral neuropathy treatments, she related her successes with healing chronic ulcerated sores in diabetic patients to proof that the circulation in the affected area is improved. This leads to improved quality of life and positive mental outlook. Several audience members purchased the CD. We will look forward to receiving reports on their relative success in trying this treatment.  

Brigitta Rice conducts relaxation session

May 2015 Meeting by Marilynn Martinson, Board member

We had a very interesting meeting in May, with Dr. Frederick Claussen as our speaker. Dr Claussen, a Doctor of Chiropractic, has a good understanding about neuropathy, and many of his patients have come to him for neuropathy help. Dr. Claussen discussed how supplements could help neuropathy. He described many options for dealing with neuropathy pain and numbness. Some of the treatments he described are below. Several of us have used and been helped with these treatments in the last few years because of his suggestions.

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Anodyne Therapy. This is Infra Red Light Therapy Pads that are strapped on our legs and feet. These pads have the LED light in them, a mild, comfortable heat treatment which takes about 45 minutes. He has office visits to see how it helps you to reduce pain, decrease numbness and improve sensation. If you like it, you can buy it for home use. Some new, interesting therapies were explained. He has a TerraQuant Laser, low intensity, Red Visible Light treatment to repair tissue, including nerves. It helps wound healing and also improves circulation. HALO System, Inc. works with Photonics therapy treatment protocols. Photon energy is capable of carrying the healing vibrational frequencies of the contents of any liquid, through which it passes, such as a bottle of water. This is a very interesting and easy new technology. The BioFlex Laser is a combination of Infra Red LED Light and low-level lasers in one unit. This unit is used in hundreds of centers worldwide now. He also served us a Dietary Supplement sample that is a liquid joint and muscle support formula called Flex Easy. This liquid helps promote joint flexibility, helps support joint rebuilding and repair, supports normal joint and muscle sensation, and is easy to swallow with rapid absorption rate. Dr. Claussen is located at 8441 Wayzata Blvd., Suite #370 in Golden Valley, MN 55426. If you want more information, or an appointment, please call him at (952) 473-3336.

March 28, 2015 Meeting

Dr. Adam Loavenbruck of The Kennedy Laboratory associated with the University of Minnesota addressed a crowd of 40 attendees at the March meeting of Minnesota Neuropathy Association.

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The work Dr. Loavenbruck had done in the past with Dr. Kennedy’s Lab was put in perspective to new work being started to improve neuropathy diagnosis.  Dr. Loavenbruck talked primarily how his work is focused on future diagnosis of the disease and did not relay any information on any treatment advances that his lab is aware of.  

Dr. Adam Loavenbruck updates research in progress on improved diagnosis

January 31, 2015 Meeting

The January 2015 meeting focused on improving quality of life while living with Neuropathy. The importance of exercise and flexibility were discussed with many demonstrations for those in attendance.

Something to do while sitting!  First focus on your breathing.  Take a deep breath in through your nose and out through your mouth making a Haaaaa sound.  This tells your body it’s time to relax.  Next follow the Yoga Chair exercise steps below in order stretching only as far as you are comfortable.

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  1. Rub hands together until they are warm.  Then rub them on your face gently massaging the muscle under the skin.
  2. Take a big belly breath and exhale with a Haaaaa.
  3. Push your chin out, hold it and repeat several times.
  4. Squish your eyes shut, hold them, then open them wide, hold it and repeat several times.
  5. Pinch your shoulders to you ear, reach your fingers to the floor, hold it and repeat.
  6. Roll your shoulders forward several times, then backward several times..
  7. Hold your arms in front of you, open and close your hands until they get tired.
  8. Close your hands and do wrist circles to the right and then to the left.
  9. Cross your arms across your chest and give yourself a hug then lift your elbows to the ceiling.
  10. Time to take another belly breath.
  11. Hands behind your back fingers interlaced, push the palms to the floor.
  12. Hands over head, fingers interlaced and stretching for the ceiling.
  13. With hands overhead, pull belly in and slowly tilt from side to side.
  14. With hands in lap, extend right leg and rotate ankle clockwise then counter clockwise.
  15. Return leg to the floor and massage as far down as you can go.
  16. Take a big belly breath.
  17. Repeat with left leg and don’t forget to take a belly breath at the end.
  18. Extend both hands and feet and make fists with both until fatigued.
  19. Sit up straight, close eyes, relax hands, arms and legs and take two large belly breaths – remember to Haaaaa.
  20. Open your eyes and ask yourself, “How do I feel?”.

 

Newsletters

All members in current standing will receive latest quarterly newsletter which provides up-to-date news and medical break throughs in the treatment of neuropathic conditions. We offer recent past newsletters here for your review and use. Please consider joining our association and support our efforts to further research for neuropathic cures and treatments and provide the latest updates for all affected by this condition.

For past issues of our newsletter please contact one of our board members and provide email address and specific issues desired.