LYME DISEASE, A MAJOR CAUSE OF NEUROPATHY By Dorothy Kupcha Leland, LymeDisease.org

Neuropathy Hope Hope through caring, support, research, education, and empowerment A newsletter for members of the Pacific Chapter of The Neuropathy Association (PCNA) January 2014 Issue 1 Volume 12 Lyme Disease, A Major Cause Of Neuropathy Sacramento October Notes PCNA Support Groups President s Message The New Way To Walk It Off Balance Walking Poles Neuropathy In The News New Prion Disease Includes Gi Symptoms PN Literature Review PCNA s 2nd Annual Walk Pacific Chapter of The Neuropathy Association P.O. Box 276567 Sacramento, CA 95827-6567 877-622-6298 888-556-3356 info@pnhelp.org www.pnhelp.org LYME DISEASE, A MAJOR CAUSE OF NEUROPATHY By Dorothy Kupcha Leland, LymeDisease.org Lyme disease is a bacterial infection that s getting more attention in the media these days. In 2013, the Centers for Disease Control increased the estimate for annual U.S. cases from 30,000 to 300,000, making it the nation s third most common infectious disease, after chlamydia and gonorrhea. Lyme is a complex illness that can result in widely disparate symptoms, including body-wide inflammation, arthritis-like joint pain, heart problems, gastrointestinal upsets, a wide variety of neurological impairments, and peripheral neuropathy. In his recently published book, Why Can t I Get Better? Solving the Mystery of Lyme and Chronic Disease, Dr. Richard Horowitz states that up to 70% of Lyme patients with ongoing symptoms present with a chronic peripheral neuropathy, complaining of tingling, numbness and burning sensations in the extremities, which often comes and goes and migrates to different parts of the body. Lyme disease is caused by a spirochete a corkscrew shaped bacterium called Borrelia burgdorferi. It s typically spread by Ixodes ticks, also known as deer ticks. They are tiny, spider-like arachnids, often found in wooded and grassy areas. During their life span, ticks latch onto birds or mammals, which can disperse them over a wide area. Although people often think of Lyme as an east coast disease, Lyme-infected ticks have been found throughout California and the west. (Not all ticks carry disease. Infection rates vary with location.) Most cases of Lyme come from the bites of immature ticks, called nymphs, which are as small as poppy seeds and easy to overlook. The longer a tick is attached to the body, the more likely it will transmit disease. In its initial acute stage, Lyme disease may feel like the flu: fever, sore muscles, headache, and fatigue. Some people may know they ve been bitten by a SACRAMENTO OCTOBER NOTES By Georgia Richardson The meeting began at 1:30 p.m. with 22 in attendance. Charles Moore introduced a new attendee who has had peripheral neuropathy for over 30 years as a result from a bad fall. She shared that she uses a heat massager she bought on Amazon.com. It is called a Prospera. tick and/or may develop a highly distinctive rash, which increases the chance they ll get properly diagnosed. However, many people don t recall a tick bite and may not have a rash. Even if they experience flu-like symptoms, those symptoms might not be recognized as Lyme disease. Furthermore, laboratory tests for Lyme are problematic. Most check for antibodies to Lyme disease, not the actual Lyme bacteria. There are many reasons why a person with Lyme may not produce measurable antibodies. So, a test result may be negative even when somebody actually has the disease. Diagnosis can also be complicated by the fact that ticks often transmit multiple pathogens in the same bite. Thus, a person may have not only Lyme disease, but also coinfections such as babesia, bartonella, and ehrlichiosis, which muddy the diagnostic picture considerably. Early treatment for Lyme disease is usually effective. However, when undiagnosed and untreated, Lyme can burrow deep into the body, where it is harder to eradicate and can contribute to many serious health problems. Both diagnosis and treatment are trickier at this point. If you think your peripheral neuropathy might be caused by Lyme disease, we recommend you be evaluated by a physician affiliated with the International Lyme and Associated Diseases Society (ILADS). For more information, see the websites www. lymedisease.org and www.ilads.org. In addition to Dr. Horowitz s aforementioned book, see The Beginner s Guide to Lyme Disease, by Dr. Nicola McFadzean and The Lyme Disease Solution by Dr. Kenneth Singleton. Dorothy Kupcha Leland is Director of Education and Outreach for the advocacy organization www.lymedisease.org. Contact her at dleland@ lymedisease.org. PROGRAM Our speaker, Harold Kuphaldt, Physical Therapist and Director of Rehabilitation Therapy Services at Interim Healthcare, has worked with seniors for 30 Continued on page 7

Roster of Our PCNA Information and Support Groups 2013 PCNA Board of Directors Bev Anderson President Karen Polastri Vice President Pam Hart Secretary Sandra Grafrath Director Mary Hoffar Director Jonathan Istilart Director Brad Livingood Director Michael Green Wayne Hewlett Arvin Magusara Casimir Sammanasu Sandra Vinson Dick Ward Please contact your group leader or check your local paper to find out about the topic/speaker for the upcoming meeting. Bev Anderson Editor Newsletter Design by Page 2 Diane Blakley Designs CALIFORNIA Alturas Antioch-Brentwood 3rd Wednesday, 2 pm Kaiser-Permanente 4501 Sand Creek Rd., Antioch Speaker: Sandra Grafrath, PCNA Livermore Leader Bev Anderson 877-622-6298 for room location Auburn 1 st Monday, 11:00 AM Woodside Village MH Park 12155 Luther Road Sharlene McCord (530) 878-8392 Bakersfield David Wollard (661) 663-9406 Berkeley Johnetta Smallwood (510) 841-0239 Carmichael 2 nd Tuesday, 1:30 PM Eskaton 3939 Walnut Ave. Karen Robison (916) 972-1632 Call Karen before coming as it is a gated community and sometimes the day/time changes. Castro Valley 2 nd Wednesday, 1:30 PM First Presbyterian Church 2490 Grove Way (next to Trader Joe) Judson Leong (510) 581-6697 Clearlake For information, call Concord 3 rd Thursday, 1:30 PM First Christian Church 3039 Willow Pass Road Wayne Korsinen (925)685-0953 Crescent City Call Bev Anderson for information (877) 622-6298 Davis 2 nd Tuesday 3:30-5:00 PM Davis Senior Center 646 A Street Mary Sprifke (530) 756-5102 Elk Grove 2 nd Tuesday, 1 PM Elk Grove Senior Center 8830 Sharkey Avenue Roger White (916) 686-4719 Eureka Earlene (707) 496-3625 Folsom 3 rd Monday, 1:00 PM odd numbered months Journey Church 450 Blue Ravine Rd. Speaker: Donna Calegari Folsom Medical Supply Fort Bragg Betty Adams (707) 964-3327 Fresno 3 rd Tuesday, 11:00 AM Denny s Restaurant 1110 East Shaw Marvin Arnold (559) 226-9466 Garberville Grass Valley 2 nd Monday, 1:30 PM GV United Methodist Church 236 S. Church Street Salli Hearn (530) 268-1017 Jackson Lakeport 4th Friday, 10:30 AM Lakeport Senior Center 507 Konocti Ave. Grace Gault (707) 274-9999 Lincoln Call Bev Anderson for information (877) 622-6298 Livermore 4 th Tuesday, 10 AM Heritage Estates 900 E. Stanley Blvd. Sandra Grafrath (925) 443-6655 Madera Leo Trzepowski (559) 673-4388 Merced 2 nd Thursday, 1 PM Central Presbyterian Church 1920 Canal Street (The Hoffmeiser Center across the street from the church) Larry Frice (209) 358-2045 Modesto 3 rd Monday, 10:30 AM Trinity United Presbyterian Church 1600 Carver Rd., Rm. 503 Monte Schrader (209) 531-3838 Monterey 3 rd Wed.,10:30 AM odd numbered months First Presbyterian Church 501 El Dorado Street Don & Ann Trout (831) 372-6959 Napa 1 st Thursday, 2 PM Napa Senior Center 1500 Jefferson Street Ron Patrick (707) 257-2343 bonjournapa@hotmail.com Oakland No meeting in January 1 st Thursday, 1 PM Grand Ave. 7 th Adventist Church 278 Grand Ave. Kathleen Nagel (510) 653-8625 Oxnard Tila Estrada (805) 984-1360 Placerville Redding Tiger Michiels (530) 246-4933 Redwood City 4 th Tuesday, 1 PM Sequoia Hospital Health and Wellness Center 749 Brewster Avenue Stan Paschote (510) 490-4456 Roseville 2 nd Wednesday, 1PM odd numbered months Sierra Point Sr. Res. 5161 Foothills Blvd. Speaker: Robin Jackson, Diabetic & Neuropathy Treatment Center Sacramento 3 rd Tuesday, 1:30 PM Northminster Presby. Church 3235 Pope Street Charles Moore (916) 485-7723 Salinas Contact Bill Donovan (831) 625-3407 San Francisco 4 th Thursday, 10 AM UC-San Francisco Med Ctr. 400 Parnassus Avenue Amb. Care Ctr. 8th Flr., Rm A888 Y-Nhy (e nee) Duong Nhy-y.duong@ucsf.edu San Jose 3 rd Saturday, 10:30 AM O Conner Hospital 2105 Forest Avenue SJ DePaul Conf. Rm. Stan Pashote (510) 490-4456 San Rafael 3 rd Wednesday, 1 PM Lutheran Church of the Resurrection 1100 Las Galinas Avenue Scott Stokes (415) 246-9156 Continued on page 3

President s Message By Bev Anderson Happy 2014. I hope it will be a banner year for PCNA and for all of us. One of the most interesting articles in this issue is the lead story on Lyme Disease. There are many who have neuropathy because of Lyme that has never been diagnosed. If you have idiopathic neuropathy (what they call it when the doctor has not found a possible cause), I recommend you ask for the latest test for Lyme just to be sure it is not from that. Lyme, if it is not treated, gets steadily worse. I contacted Dorothy Kupcha and asked for the article because of what I ve been reading about the prevalence of Lyme on their website. Informative Speakers. I m delighted with Georgia Richardson s article on the Sacramento October Notes. I d like to encourage all groups to send in notes of speakers they thought were helpful. It doesn t have to be as long as Georgia s article, but it can be. The article should have some information that the author thought helpful to them and to the group. I want to feature at least one of these a month so we can share information with each other. Some groups have more opportunity to have speakers than others as the availability is less in some locations. Walking. If you have internet access, do pull up the pole walking article in Prevention Magazine. Prevention is not a publication that makes its articles available for use in a newsletter, especially Continued on page 5 PCNA Information and Support Groups continued from page 2 Santa Barbara 4th Saturday, 10 AM odd numbered months The First Methodist Church Garden & Anapamu Shirley Hopper (805) 689-5939 Santa Cruz 3 rd Wednesday, 1PM odd numbered months Trinity Presbyterian Church 420 Melrose Avenue Mary Ann Leer (831) 477-1239 maleer@comcast.net Santa Maria 2 nd Tuesday, 12:00 Noon Elwin Mussel Senior Center 510 Park Street Wanda (805) 938-1086 Mary (805) 344-6845 Santa Rosa 1 st Thursday, 10:30 AM Santa Rosa Senior Center 704 Bennett Valley Road Katherine Pennywitt (707) 529-9692 Sonoma For Information call Sonora Stockton 3 rd Tuesday, 1 PM St. Andrew Lutheran Church 4210 Claremont Ave. (at March Lane) Jerry Elliot (209) 447-1242 Susanville Truckee Tulare-Visalia Cathy Moriarity (559) 686-2351 or Esther Hoover (559) 936-6586 Turlock 3 rd Monday, 1 PM Covenant Village Adm. Bldg. Classroom 2125 N. Olive Street Dee Muhlenbruch (209) 667-0042 Ukiah Last Tuesday, 5:30 PM North Coast Opportunities (NCO) 413 N. State St. Shirley Blattner (707) 621-0208 Carole Hester (707) 972-2795 Walnut Creek 4 th Friday, 10 AM Rossmoor, Hillside Clubhouse Las Trampas Room Carolyn Cash (925) 254-8195 West Sacramento No meeting until new leader is found Sandra Vinson (916) 372-6093 slvins11@gmail.com Woodland 1 st Tuesday, 1:30 PM Woodland Comm. & Senior Center 2001 East Street Elizabeth Chaudhry (530) 661-3859 Yreka Yuba City-Marysville 2 nd Tuesday, 10:30AM St. Andrew Presbyterian Church 1390 Franklin Rd. (next to Winco Shopping Center) Ken Lux (530) 673-3479 NEVADA Reno-Sparks OREGON Brookings For information, call Robert Levine (541) 469-4075 Grant s Pass 3 rd Wednesday, 10:30 AM First Christian Church 305 SW H Street Carol Smith (541) 955-4995 Medford 3 rd Friday, 2 PM Rogue Valley Medical Center 2825 E. Barnett Rd. Carpenter Center, Rm. 1 Mike (714) 866-2954 Portland 2 nd Saturday, 8:30 AM St. Andrews Presbyterian Church 8228 SW Sunset Blvd., Portland Joe Mozena (503) 505-0692 Salem 3 rd Monday, 6:30 PM Community Health Education Center Salem Hospital Campus, Bldg. D 890 Oak Street SE Michael (503) 857-3508 newsofsalem@gmail.com Start a support group in your area: Contact Bev Anderson at (877) 622-6298 or info@pnhelp.org Help With Health Care Challenges If the number is not in your area, call the one listed and ask for the right number. Medicare www.medicare.gov The Affordable Health Care Act For current information go to www.healthcare.gov HICAP Health Insurance Counseling for seniors and people with disabilities. www.cahealthadvocates.org /HICAP/ Call (800) 434-0222 to ask a question or to make an appointment. Health Rights Hotline Serving Placer, El Dorado, Yolo, & Sacramento Counties, regardless where you receive your health coverage. Tollfree (888) 354-4474 or TDD (916) 551-2180. In Sacramento, (916) 551-2100. www.hrh.org. HMO Help Center Assistance 24 hours a day, seven days a week. (888) HMO-2219 or (877) 688-9891 TDD DRA s Health Access Project Free publications about the health care, insurance rights and concerns of people with disabilities and serious health conditions. For more information, go to http://dralegal.org/ and click on Projects. Page 3

DISCOUNTS FOR PCNA MEMBERS The following companies or individuals have agreed to give PCNA a discount to PCNA members. Give them a call or visit. If you choose to purchase the service or wares of any on this list, pull out your PCNA Membership Card and claim the discount. Anodyne Therapy Infrared Light Therapy equipment - $50 off Model Freedom 300 (single leg at a time) and $50 discount on Model 120 that does both legs at the same time. Contact: 800-521-6664 or www.anodynetherapy.com HealthLight Infrared Light Therapy equipment - 10% off Single Boot System $999 and Dual boot system $1759 Contact: 888-395-3040 or www.healthlight.us Auburn The Footpath 825 Lincoln Way Auburn, CA 95603 (530) 885-2091 www.footpathshoes.com PCNA Discount: 10% off the regular price shoes. Elk Grove Shoes That Fit 8649 Elk Grove Blvd. Elk Grove, CA (916) 686-1050 PCNA Discount: 20% off the regular price shoes. Fortuna Strehl s Family Shoes & Repair Corner of 12th & Main 1155 Main Street Fortuna, CA 95540 (707) 725-2610 Marilyn Strehl, C.PED is a Certified Pedorthic PCNA Discount: 10% off the regular price shoes. Continued on page 7 Page 4 THE NEW WAY TO WALK IT OFF BALANCE WALKING POLES Wake up your routine and burn up to more calories. PREVENTION MAGAZINE online magazine by Jenna Bergen At the 2013 PCNA Annual Meeting in Livermore, CA our special afternoon activity was a pole walking demonstration by Jayah Pauley. This easy, fun, and energizing activity got everyone up and walking. We are pleased to introduce you to this article from Prevention s online magazine about the benefits and art of pole walking. Getting started with a walking program using walking poles could be a New Year s resolution that s easy to keep. Whatever your goal, Prevention magazine reports that using walking poles boosts calorie burn. Why? Because swinging the poles engages your arm, shoulder, and back muscles, which strengthens your upper body and increases your heart rate. In fact, walking with poles has been shown to boost calorie burn by an average of 15 to 20% compared to regular walking, even though it feels just as easy. Researchers in the KU Schools of Medicine and Health Professions Collaborate to Better Understand Diabetes and its Complications University of Kansas Medical Center (1 of 15 Neuropathy Association-designated Centers of Excellence) researchers recently shared results from an important research study aimed at evaluating the effect of physical activity on nerve function in people who had been diagnosed with diabetic peripheral neuropathy. Dr. Patricia Kluding (associate professor of physical therapy and rehabilitation science) noted, We were worried that if you take someone who has painful feet and painful legs and ask them to exercise, the pain would get worse or they wouldn t do it. In fact, the exercise helped the participants in the study. After 10 weeks, the participants reported fewer symptoms of pain. Skin biopsies showed changes in their nerve fibers that were consistent with improvements in the patients pain. - The University of Kansas Medical Center Scientists Identify Clue to Regrowing Nerve Cells Researchers at Washington University School of Medicine (St. Louis, MO) have identified a chain reaction that triggers the regrowth of some damaged nerve cell branches, a discovery that one day may help improve treatments for nerve injuries that can cause loss of sensation or paralysis. The research findings were published recently in the medical journal Cell. Valeria To prove the benefits, Prevention had 38 women follow their plan for eight weeks (just 15 minutes a day). They gained energy, felt happier, and lost an average of 5.5 pounds. One overweight participant stated that her body didn t hurt when she used the balanced walking poles. And according to a study published in Integrative Cancer Therapy, breast cancer survivors who walked with poles increased their upper-body strength 47% more than survivors who didn t use them. Pole walking counters the reduction in muscular endurance and range of motion. For the full article - Access Prevention Magazine (www.prevention.com/). In the search box for that magazine put articles by Jenna Bergen. From the list on the page, choose the first one of the Walking Workouts with Nordic Walking Poles which should be Part 1. You may find other articles in this that will be of interest. Jenna Bergen is Prevention Magazine s Fitness Editor. NEUROPATHY IN THE NEWS from The Neuropathy Association s E- News Cavalli, PhD, assistant professor of neurobiology, senior author explains, We knew several genes that contribute to the regrowth of these nerve cell branches, which are called axons, but until now we didn t know what activated the expression of these genes and, hence, the repair process. This puts us a step closer to one day being able to develop treatments that enhance axon regrowth. -Washington University in St. Louis Neurotoxin Find Key to Chronic Pain Treatment Researchers at Purdue University and Indiana University School of Medicine have discovered that a known neurotoxin may cause chronic pain in people who suffer from paralysis. The neurotoxin, called acrolein, is produced in the body after nerve cells are injured, triggering a cascade of biochemical events thought to worsen the injury s severity. New research shows hydralazine (which has been approved by the FDA for hypertension) is effective in reducing chronic pain in laboratory animals and potentially in people who have suffered neurotrauma resulting in paralysis. The findings are detailed in a research paper published recently in the Journal of Neurochemistry. - Laboratory Equipment Diabetic Neuropathy Symptoms and Treatment: Tips for People with Diabetes to Prevent and Control Neuropathy When you have diabetes mellitus, which is referred to as diabetes, your blood glucose level is Continued on page 5

Neuropathy In The News Continued from page 4 consistently high. Untreated, a high sugar level damages your nerves. Blood vessels that take oxygen to your nerves are also damaged. Damaged nerves send messages slowly or at the wrong times, and nerves eventually stop sending messages to the brain. This damage is called diabetic neuropathy. Diabetic neuropathy can occur in both Type 1 and Type 2 diabetes. Neuropathy is a serious complication of diabetes, and it affects up to 70% of people with diabetes. Neuropathies can occur in any part of the body, including the eyes, heart, lungs and feet. - U.S. News & World Report Under the Radar: A Physician-Patient s Experience with Sjögren Syndrome Dr. Sarah Schafer recently shared her complex diagnostic journey in The Rheumatologist, the official publication of the American College of Rheumatology. She writes, As a medical student, I was not prone to diagnosing myself with the disease du jour. A distance swimmer and triathlete, I imagined myself to be one of the least likely people to develop a chronic disease in the prime of my life. But it happened. Sicca symptoms are important. I know this firsthand, having severe dry eye disease, including a painful neuropathic component. However, what impacts my life the most is the disabling flu-like fatigue that is seen in 70% of primary Sjögrens patients...- The Rheumatologist Brain Imaging Reveals How Pain Medicines Work A study in the recent edition of the medical journal, Anesthesiology, suggests a role for brain imaging in the assessment and potential treatment of chronic pain. University of Michigan researchers used brain imaging procedures to track the clinical action of pregabalin, a drug known by the brand name Lyrica that is prescribed to patients suffering from fibromyalgia and neuropathic pain. The significance of this study is that it demonstrates that pharmacologic therapies for chronic pain can be studied with brain imaging explains lead study author Richard Harris, PhD, assistant professor of anesthesiology at the University of Michigan. The results could point to a future in which more targeted brain imaging approaches can be used during pharmacological treatment of chronic widespread pain, rather than the current trial-and-error approach. - Drug Discovery and Development Centipede Venom Tops Morphine: The Substance Targets the Same Ion Channel That s Mutated in People Who Don t Feel Pain An alteration in a sodium ion channel can leave people completely indifferent to pain, making the channel an appealing target for analgesic development. In a report published in the Proceedings of the National Academy of Sciences this past September, researchers characterize a newly discovered component of centipede venom that inhibits this particular sodium channel, NaV1.7, and works even better than morphine to dampen pain in rodents. Centipedes worked out hundreds of millions of years ago the easiest way to catch prey was to paralyze them by blocking their NaV channel, Glenn King, one of the authors of the study, told ABC. We re just lucky that of the nine NaV channels in humans, it hit the one we were after. - The Scientist How Your Knees Can Predict the Weather: Granny Was Right -- Scientists Find Link Between Achy Joints and the Forecast Do weather conditions really aggravate physical pain? It is one of the longest running controversies in medicine. Hippocrates in 400 B.C. noticed that some illnesses were seasonal. The traditional Chinese medicine term for rheumatism (fengshi bing) translates to wind-damp disease. In people with chronic inflammation from arthritis or past injuries, even slight irritations due to the weather can aggravate sensory nerve cells, known as nociceptors, that relay pain signals to the brain. That may explain why some people with neuropathic pain and phantomlimb pain also report weather-related flare-ups. Studies have linked changes in temperature, humidity, or barometric pressure to spikes of pain from rheumatoid arthritis, but it s still not understood how. It might be Mother Nature s way of giving lessmobile people a head start fleeing tornadoes, but the leading theory is that the changing pressure before a storm swells the sacs of fluid and gas that surround the joints. This causes pain and leads to the sufferer muttering, Rain s a-comin. I can feel it in my bones. - Wall Street Journal President s Message Continued from page 3 one that is posted on a website. Karen Polastri, PCNA s Vice President, wrote the introduction to the excerpts on the article. Karen encourages you to get walking now so that you ll be ready for our 2nd Annual Walk in May. Let s raise awareness about neuropathy with our annual Walk. Helpful Resources. The article on a new neuropathy discovered in a family group is fascinating in describing the symptoms and giving a hint as to what happens when a new type of neuropathy is discovered. It further helps us understand reasons why a cause for our neuropathy may not be found. The type may not be discovered yet. I get clippings and information from people in our groups from time to time about help they have gotten from some product or treatment like those that have tried the Neuropathy Support Formula and others. Some of the topicals are much like ones or are the ones we list in our Complementary Treatments pages. I m always glad to get these, however. I plan to report more on these in future issues. Let s have a wonderful year! Maybe this is the year a cure will be found. Page 5

NEW PRION DISEASE INCLUDES GI SYMPTOMS This article gives the process of finding a new genetic neuropathy. (prions are disease causers like bacteria and viruses) Published: Nov 15, 2013 Updated: Nov 16, 2013 By John Gever, Deputy Managing Editor, MedPage Today Reviewed by F. Perry Wilson, MD, MSCE; Instructor of Medicine, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse Planner Action Points Note that this study of a single British family with watery diarrhea and neuropathy demonstrated an inherited mutation in the prion gene PRNP. The pathoge nic protein did not cause disease in mice, although this does not guarantee against human transmissibility. A newly discovered mutation in the human prion protein gene produces a clinical syndrome marked by chronic diarrhea, autonomic abnormalities, and peripheral neuropathy, researchers said. Eleven members of an extended family in Britain were found to share the syndrome, according to John Collinge, MD, of the U.K. Medical Research Council in London, and colleagues, who identified a specific, inherited Y163X mutation in the PRNP gene in six of these individuals with DNA samples available. The resulting aberrant prion protein did not appear to be transmissible, unlike those responsible for Creutzfeldt-Jakob disease (CJD), Collinge and colleagues reported in the New England Journal of Medicine. No evidence of illness was seen in mice for up to 600 days after they were injected with prion proteins isolated from the patients. Also unlike CJD, substantial deposits of the rogue protein accumulated in organs outside the central nervous system in these patients, including in the gastrointestinal tract, liver, kidneys, lungs, and cardiovascular system. Symptoms were slow to progress in the patients included in the current study, generally not appearing until they were in their 30s, with age at death ranging up to 70. PRNP analysis should be considered in the investigation of unexplained chronic diarrhea associated with a neuropathy or an unexplained syndrome similar to familial amyloid polyneuropathy, the researchers wrote. The prevalence of systemic amyloidosis associated with prion protein is probably low but might be better characterized with more widespread testing of PRNP and histologic examination for prion protein in biopsy samples. About 15% of prion disease cases involve inherited mutations, the researchers indicated. Manifestations of those previously described mostly involved the brain and central nervous system. Collinge and colleagues reviewed medical history data and, for those still living or who had provided consent prior to death, performed tissue analyses on five generations of the British family. They started with a woman who had died at age 66 with the syndrome and who had donated her brain for research. The woman s father, one of her two children, and two of her three siblings (one male, one female) also had a similar phenotype. The researchers ultimately found that a great-uncle appeared to be the first in the family to develop the syndrome. Five members of another branch of the family showed the phenotype as well. All were descended from the woman s great-grandparents. The inheritance pattern indicated a dominant transmission pattern. DNA analysis revealed the Y163X mutation in the prion protein gene in the index patient and in the others for whom samples were available. The syndrome s most salient feature was chronic, watery diarrhea beginning when affected individuals were in their 30s. Most of these individuals were diagnosed with either Crohn s disease or irritable bowel syndrome. Also common was neuropathy mainly affecting the legs and feet, with abnormal heat sensitivity and, later in life, motor involvement. Seizures and cognitive impairments began to occur when patients reached their 40s and 50s. Laboratory analyses showed elevated tau and S100b protein levels in cerebrospinal fluid, both of which were more than three times the upper limit of normal. Autopsy findings in some of the patients showed extensive deposits of the abnormal prion protein in numerous locations throughout the body. These included the brain, with prion plaques as well as neurofibrillary tau-based threads and tangles. The researchers tissue analyses pointed to a length-dependent, peripheral axonal neuropathy as the main basis for the clinical symptoms. They suggested that the diarrhea, for example, probably resulted from bowel denervation. Likewise, the sensory and motor abnormalities in the lower extremities were likely to due to denervation in those areas. Collinge and colleagues noted that the lack of transmissibility to mice, although reassuring, is not a guarantee that the rogue prions could not be pathogenic in humans. The work was funded by the Medical Research Council and other government and private foundation grants. Study authors reported relationships with D-Gen, Takeda, Warner-Chilcott, B. Braun, Shire, Dr. Falk, Orion, Merck Serono, and Novartis. Used in Neuropathy Hope with the permission of John Gever, Deputy Managing Editor, MedPage Today Page 6

PERIPHERAL NEUROPATHY LITERATURE REVIEW By William B. Donovan, M.D. We can access the National Library of Medicine (NLM) to obtain information on peripheral neuropathy (PN). There are over 100 medical articles a month written on PN. I review these references and select articles that would appear to be most interesting to us neuropathy sufferers. This is the link to PubMed that will take us to the NLM: www.ncbi.nlm.nih.gov/sites/entrez If you are reading this article on the computer, just click on the above link to go there. If you are reading the print edition of the newsletter, type this link into the address bar of the browser on a computer. If you don t know how, get a librarian or friend to help you. After you get to PubMed, you will see a line that says Search _PubMed followed by for and a space. Every article in the NLM is given a PMID, an eight digit identification number. I will give you PMID numbers of the selected articles. Type the PMID into the space after the for and click on Go at the end of the space, or press the ENTER key on your keyboard. You will then see a one paragraph abstract of the article appear, as well as links to Sacramento October Notes Continued on page 1 years specializing in balance problems. The in-home care and support therapy provided includes out-patient care and post-acute care. Falling is a primary concern for older persons and costs 55 billion dollars each year in the U.S. Mr. Kuphaldt serves on a task force to study balance and falling to try to determine why it is so prevalent and what can be done. Those who suffer peripheral neuropathy (PN) are at a greater risk for falls than the rest of the population. Dizziness, vertigo, lightheadedness, numbness, and pain all contribute to fall risks. He shared a 22-page handout that he had compiled and written entitled: Strategies for Fall Risk Reduction. (We have a copy in our library). Starting with Why Is Balance So Important, he noted some statistics that included: balance related falls account for 50% of accidental deaths in the elderly. Balance disorders are the most common diagnosis in short-stay hospital admissions in those over 65; in 2001, 1.6 million were treated in emergency rooms for fall-related injuries; people over 72 found the average health care cost for a fall related injury was $9,440; hip fractures cause the greatest number of deaths; 90% of hip fractures result from falling; 1 in 3 seniors will fall annually, and 20% to 30% will suffer moderate to severe injuries. PN is a leading cause of falls. Then he reviewed Body Systems That Affect related articles. This month s PMIDs: 16581329 A systematic review of 16 case reports of symptoms of peripheral neuropathy developing within 1-2 months of initiating statin therapy and resolving after discontinuing the drug. The incidence of neuropathy attributable to statin use, however, is estimated at only 12 per 100,000 person years of treatment. 17696592 An Italian article reviewing experimental evidence of acetyl-l-carnitine counteracting the neurotoxicity of cancer chemotherapy agents and promoting recovery of nerve conduction and elevation of pain threshold. 18940920 A summary of studies done showing decreased pain and increased nerve regeneration in diabetic PN with acetyl-l-carnitine. 19703730 This is a study of 20 patients with posttraumatic complex regional pain syndrome, thought to be a form of peripheral neuropathy. The application of 10% Balance: Vestibular (ears), somatosensory (feet), vision (eyes), CSN (brain), and musculoskeletal (muscle and joints). He pointed out the most common types of disorders including vertigo, dizziness, and loss of protecti sensation (nerve damage). Treatment Options Infrared light therapy seems to help in some cases. It is non-invasive, FDA and Medicare approved, and there are no contraindications. The therapy works by the infrared light releasing nitric acid oxide that attaches to hemoglobin. Nitric acid causes the dilation of blood vessels increasing oxygen at the cellular level and thus increasing circulation and decreasing pain. The treatment plan entails 30 minutes to the affected area, three times a week for four weeks. He reviewed other treatment options and stressed that antivertigo medications should not be taken on a long-term basis. Fall-Risk Prevention Tips Stay hydrated, provide good lighting, remove fallrisk items (like throw rugs), and talk to medical providers about reducing medications, exercise. If you do fall, get help. Harold Kuphaldt s contact information: Telephone (916) 486-8181; Cell (916) 233-6068; Fax (916) 486-8126 and E-mail: hkuphaldt@interimhealthcare.com DISCOUNTS FOR PCNA MEMBERS Continued from page 4 Sacramento Midtown Comfort Shoes 3400 Folsom Blvd. Sacramento, CA 95835 (916) 731-4400 PCNA discount: 15% on the regular price. West Sacramento Beverly s Never Just Haircuts and Lilly Nails 2007 W. Capitol Ave, West Sacramento, CA Hair (916) 372-5606 Nails (916) 346-8342 PCNA discount: 10% off the regular price Additional Discounts Do you know a business that might offer our members a discount? Tell them that they will be listed each month in our newsletter and on our website so our members will know of their generosity and patronize their business. Call (877) 622-6298 or e-mail info@pnhelp.org. We ll mail an agreement form to the business, and once we have it, we ll add them to this list. Page 7

The Pacific Chapter of The Neuropathy Association A California public benefit, nonprofit, tax exempt corporation P.O. Box 276567, Sacramento, CA 95827-6567 Call PCNA using our toll free phone numbers: (877) 622-6298 Email: info@pnhelp.org PN Information/Advice Support Group Inquiries (888) 556-3356 Email: donnad@pnhelp.org Membership Information/Inquiries Sponsorships General Organizational Inquiries www.pnhelp.org NONPROFIT ORGANIZATION U.S.POSTAGE P A I D PERMIT NO. 25 AUBURN, CA 95603 Mark Your Calendar: PCNA S 2ND ANNUAL WALK Step Up For Neuropathy Sunday, May 18, 2014 Sierra College, Rocklin, CA MARK YOUR CALENDAR FOR PCNA S 2ND ANNUAL WALK MAY 18 By Karen Polastri, PCNA Vice President Last year PCNA launched its first walk Step Up for Neuropathy. We had two primary goals: 1) raise awareness about neuropathy, and 2) raise funds for PCNA so that we can continue to support our members. We want to add a third goal to raise funds for research. Last year was a great start. We raised a little awareness and a little money, and learned a lot. This year we want to build on what we learned and raise more awareness and funds. To raise awareness we need the attention of the media. To get the media s attention we need a mass of individuals participating in the walk. More walkers more attention. There are many ways that you can participate: walk, encourage your family and friends to walk, attend the mini-health expo, donate, encourage others to donate, and volunteer at the event. But we really do need a mass of people to come out and walk. You can walk whatever distance is comfortable for you. The ground is level and paved and there is a lot of shade, and plenty of convenient free parking as well as restroom facilities (not porta-potties). You are welcome to use any assistive devices needed including walking poles. The event also makes a great family outing. For all you moms, dads, grandmothers, granfathers, aunts and uncles, ask your family to participate as a Mother s Day gift. All participants will receive a certificate of participation. It would be a great show and tell topic for your grandchildren at school. Make stepping up for neuropathy your new year s resolution and start preparing and planning now. We need your participation to help raise awareness. The Pacific Chapter of The Neuropathy Association A California public benefit, nonprofit, tax-exempt corporation. Bev Anderson, Editor P.O. Box 276567 Sacramento, CA 95827-6567 (877) 622-6298 (888) 556-3356 info@pnhelp.org www.pnhelp.org PCNA Headquarters: donnad@pnhelp.org Our mission is to provide support, information and referral to people with neuropathy and to those who care about them, to inform and connect with the health care community, and to support research. Dues - $30 a year All contributions and dues are tax-deductible. We are supported by dues-paying members, contributions by members and friends, and occasionally, small grants. This newsletter is designed for educational and informational purposes only. The information contained herein is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting a qualified health care provider. The Pacific Chapter of the Neuropathy Association (PCNA) does not endorse any treatments, medications, articles, abstracts or products discussed herein. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your condition. The best care can only be given by a qualified provider who knows you personally.