Resources

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.



Therapy Pools
– Printable version – PDF

Pool LocationAddressTelephoneAvailability Website Source
Abbot Northwestern - Wasie Bldg800 E. 28th Street, Mpls612-863-4446Passes availableAllinaHealth.org
Courage / Kenny Rehab InstituteGolden Valley and Stillwater612-775-2306Passes availableAllinaHealth.org
Courage / Kenny Rehab InstituteStillwater651-241-3608Passes availableAllinaHealth.org
C-Side Therapeutic Pool (HCMC)701 Park Ave., Mpls612-347-4325nchpad.org
Impact / Prism Pool1600 University Ave., St. Paul651-646-7246Patients onlyimpactphysicalmedicine.com
Jones-Harrison / Wasie3700 Cedar Lake Ave., Mpls612-920-2030Membership $/Monthjones-harrison.org
Regions Hospital640 Jackson Street, St. Paul651-254-2964M.D. Referral Onlyregionshospital.com
Shalom / Vitality Center740 Kay Ave., St. Paul651-328-2000P.T. / MD presc. $50/monthshalom.com
The Marsh15000 Minnetonka Blvd., Minnetonka953-930-8511Mary LeSound - session passthemarsh.com
Tria Aquatic CenterHilton Hotel Pool, Bloomington952-838-9500Physical Therapisttria.com

Sharon Johnson did a tremendous amount of research regarding therapy pools in the Twin Cities. Thank you Sharon. Many of our members have found therapy pools very beneficial. Also, check with your local YMCA whose pool times may fit your schedule. If you know of other therapy pools, please let Lois know – 952-941-5372 and we will publish them in a future newsletter.

Note: Some information may not be current.  Please call the location to check for any changes.


Chair Yoga – Printable version (PDF)

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 steps below in order stretching only as far as you are comfortable.

  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?”.

Professional Consultation for Improving Patient Care:

Denise Nelson RN can be reached at denise@vipnurseconsulting.com for personalized service. Several levels of service available in fee-for-service business. Website: vipnurseconsulting.com. Phone: 612-387-5532.

For more information on the services Denise Nelson can provide refer to April 28, 2016 meeting notes on News and Events page on this website.


 

Member Recommendations

The Minnesota Neuropathy Association (MNA) surveys its members and conducts “Circle of Conversation” style meetings in an effort to try to discover “what things” are helping our members achieve a better quality of life. The following is a list of “the most popular” non-pharmaceutical “things” that our members have used and would recommend to others suffering from Neuropathy.

A few caveats:

  1. There are many forms of neuropathy, and neuropathy is expressed in many ways. Some people feel intense burning, stabbing pain, others, just a woody feeling. Still others feel a tightness or “creepy crawlies” on their skin. “Relief” can mean something different for every person suffering from neuropathy.
  2. There is no cure for neuropathy and no single treatment that works for everyone.
  3. In general, any treatment pharmaceutical, alternative, or “home-grown” has around a 20% success rate. That means that though many people suffering from neuropathy may try a treatment, only about 20% generally receive enough relief from the treatment to adopt it.
  4. Generally, the people that get closest to the lifestyle they want to live use multiple “things” to get them there.
  5. Not all “things” are covered by medical insurance. Research the cost in both money and time before trying anything new AND always check with your doctor.

Disclaimer:

The Minnesota Neuropathy Association (MNA) does not engage in the practice of medicine. MNA is not a medical authority nor does MNA claim to have medical knowledge. In all cases, MNA recommends that you consult your own physician regarding any course of treatment or medication. Comments on this page are based on experience and/or opinions of MNA members, and may not represent authoritative therapeutic recommendations or prescription. For specific information and advice, consult your personal physician. Any reference to a commercial or non-commercial product, process, service, or company is not an endorsement nor a recommendation. MNA does not endorse or recommend products, services, or manufacturers, and assumes no liability whatsoever for the use or contents of any product or service mentioned on this page or web site. MNA is not responsible for the contents of any “off site” Internet information referenced by or linked to this Website as well.

Over The Counter and “Homemade” Relief:

  • Lotions – BioFreeze , Lidocaine or lidocaine formulated lotions, Super Blue, BLUE-EMU spray and ointment.
  • Socks – Diabetic socks (very soft, warm, no seams, ankle fit loose to reduce constriction) Winter Sportsman socks (blend of wool, cotton, acrylic, and lycra) for warmth and support.
  • Shoes – Custom made from podiatrist, The Good Feet Store, Ana-Tech
  • Orthotics – Custom made for comfort, balance, and support
  • Foot Warmers – electric or chemical as well as cold packs or cold water on the feet before bed were recommended.

Electronic Devices:

  • Electronic Stimulators:There is a significant amount of research that details the efficacy of Electronic Stimulators, though it can be hard to understand. Perhaps the simplest way to explain it is with an analogy; If you jump into a lake, the water can feel ice cold at first, though later, it may feel more comfortable. This happens because your brain chooses to ignore the signals your nerves are sending regarding the cold water. In a similar fashion electronic stimulators allow your brain to ignore signals of pain or discomfort.
  • Dynatronics STS
  • Zopec Medical DT-1200 TENS-EMS

Light & Laser Devices:

It has been shown that certain wavelengths of light promote the formation of oxygen in human tissue. Doctors use light therapy to help close difficult wounds and eventually found that in some cases it also reduced pain associated with neuropathy. In the past few years, “Cold Lasers” have also been shown to help some people reduce their neuropathic pain.

  • Anodyne Light Therapy
  • Realief Laser Therapy
  • Requip Laser Therapy

Exercise:

Many people with neuropathy report a reduction of symptoms and an overall feeling of better health from simple exercise. Here’s what our members recommend:

  • Water exercises – water aerobics, pool treadmills, swimming
  • Yoga, Chair Yoga
  • Walking

Nutrition/Supplements:

  • Alpha Lipoic Acid – 600mg/day
  • CoQ10
  • Turmeric
  • Vitamin B12

Other:

  • IVIG Therapy
  • Plasmapheresis Therapy

If you have any questions about any of these treatments you can contact board members Lois Martin or Michael Boland and they will either provide an answer or the contact name of someone who is familiar with the specific treatment. We want everyone to benefit from what is learned over the course of treatment for this disease so if you have a tried and true remedy that brings relief please do pass it along to our board and we will post it on this page.

 

Research Links

Nerve wrapping nanofiber mesh promoting regeneration
National Institute for Materials Science (NIMS), February 28, 2017:  http://bit.ly/2n0tcu5


New Research may pave the way for peripheral nerve damage repair
Researchers from Plymouth University are the first to identify the role of a bodily protein in peripheral nerve self-repair, 
Journal of Cell Biology, 30 January 2017:  http://bit.ly/2n3yGAm


UCSD “Blocking Neuron Signaling Pathway May Lead to New Treatments For Peripheral Neuropathy.” NeuroscienceNews. NeuroscienceNews, 17 January 2017: http://bit.ly/2jJ7Eho


Study finds a key to nerve regeneration
Source: University of Wisconsin-Madison
ScienceDaily September 16, 2016: http://bit.ly/2t1MYoI


Medical Cannabis