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.

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:

• Effect of VM202 injection for patients with diabetes induced PN 
• PCORI – Patient Centered Outcome Research Institute Trial Board approves $21 million funding
• CMT – Charcot-Marie-Tooth Dr. Walk discussed the genetic component and that the hands and feet are affected.
• PXT-3003 Study for CMT1A
• CIDP – The Gripper Study: IVIG Treatment Related Fluctuations in CIDP

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:

• Clinical Trials 
• Peripheral Neuropathy Research Registry 
• Exercises & Physical Therapy for PN

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

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.

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.

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?”.