Neuropathy Hope. New Diagnostic Guidelines for PN Issued Have numbness, pain or muscle weakness? Guidelines identify best tests for neuropathy

Transcription

1 Neuropathy Hope Hope Through Caring and Education A newsletter for members of the Northern California Chapter of the Neuropathy Association (NCCNA) January 2009 Volume 4, Issue 1 New Diagnostic Guidelines Issued Affiliate News Knowing Our Group Leaders President s Message Question of the Month Medical Contacts Trisha Torrey Report Auditory Neuropathy Large or Small Fiber? Helpful Suggestions? Annual Meeting Chiropractor Speaks NCCNA PO Box 6985 Auburn, CA info@pnhelp.org New Diagnostic Guidelines for PN Issued Have numbness, pain or muscle weakness? Guidelines identify best tests for neuropathy ST. PAUL, Minn. New guidelines developed by the American Academy of Neurology find a combination of blood tests and other specialized assessments appear to be the most helpful tests for finding the cause of neuropathy. Also known as neuritis or distal symmetric polyneuropathy, this common nerve problem affects people of all ages. The guidelines are published in the December 3, 2008, online issue of Neurology, the medical journal of the American Academy of Neurology. Neuropathy affects one in 50 people in the general population and one in 12 over the age of 55. It usually causes numbness, tingling or pain, often starting in the feet and moving to the hands. Symptoms spread slowly and evenly up the legs and arms. Muscle wasting and weakness can also occur. Neuropathy takes many forms and has many causes. The most common cause is diabetes. Other common causes are heredity, alcohol abuse, poor nutrition and autoimmune processes. Not all of the causes are known. There are many people with a neuropathy who have been walking around for years without having been diagnosed and treated, said guidelines author John D. England, MD, Chairman of the Department of Neurology at Louisiana State University Health Sciences Center in New Orleans and Fellow of the American Academy of Neurology. Both neurologists and people with neuropathy need to know that the appropriate choice of tests is critical to accurate diagnosis. To develop the guidelines, the authors analyzed all available scientific studies on the topic. The guidelines recommend that doctors obtain certain blood tests for all patients with numb, painful feet. People with suspected nerve problems should talk to their doctors about screening tests, especially blood glucose, vitamin B12 level and serum protein levels, since these tests can often point to common causes of neuropathy, said England. The guidelines recommend tailored genetic testing for accurately diagnosing certain neuropathies that run in families. The guidelines further recommend that doctors consider a combination of specialized tests to accurately evaluate neuropathies with autonomic dysfunction. These tests, known as autonomic tests, measure the action of the tiny nerves that control such functions as sweating, heart rate and blood pressure. Skin biopsy may also be useful to diagnose loss of tiny nerve fibers in the skin. ### The guidelines were developed in full collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine and the American Academy of Physical Medicine and Rehabilitation. The American Academy of Neurology, an association of more than 21,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system, such as neuropathy, epilepsy, dystonia, migraine, Huntington s disease and dementia. For more information about the American Academy of Neurology, visit Reprinted with permission American Academy of Neurology.

2 2009 NCCNA Board of Directors Bev Anderson President Laura Niznik Vice President Penni L. Smith Secretary Dick Ward Treasurer Suzanne Lieban Director Charlotte Krale Director Sandra Vinson Director Emeritus Please contact your group leader or check your local paper to find out about the topic/speaker for the upcoming meeting. Page 2 Affiliate News Alturas Call Judy Briener For current information (530) Auburn-Day 1st Monday, 1:30 PM Woodside Village MH Park Luther Rd., Auburn Charlene Amos,( 530) Sharlene McCord (530) Speaker: Amanda M. Matz DPM, podiatrist Berkeley 3rd Monday, 6-8 PM 1st Month of each quarter Lutheran Church of the Cross 1744 University Ave., Berkeley Alan Dampsey, (510) adampsey@comcast.net Come to the January Meeting Speaker presenting T ai Chi Concord 3rd Tuesday, 1:30 PM First Christian Church 3039 Willow Pass Rd., Concord Ernette Rivera,(925) Crescent City Forming (877) (toll free) Davis 2nd Wednesday 2 PM Institute for Restorative Health 1460 Drew Ave. Mary Sprifke (530) Elk Grove 2nd Tuesday, 2 PM Elk Grove Senior Center 8830 Sharkey Ave, EG Michael Colozzi, (916) Eureka 3 rd Wednesday, 10 AM Humboldt Senior Resource Center (707) Folsom 1 st Thursday, 1 p.m. (In Jan., Jan. 8) Journey Church 450 Blue Ravine Rd., K-2 Cheryl (916) Lorraine (916) Beverly (916) Speaker Gentle Yoga Fort Bragg Forming Bev Anderson (877) Fresno 3 rd Tuesday, 11:15 AM Carrows Restaurant 1484 E. Shaw Ave. Maria Chavez (559) Grass Valley 2nd Monday, 1:30 PM GV United Methodist Church 236 S. Church St., Grass Valley Sally (530) Speaker: Todd Bullock Sierra prosthetics-orthodics Sierra Wheelchairs Jackson 3rd Tuesday, 10 AM of odd numbered months Amador County Senior Center 229 New York Ranch Rd.Jackson Laurie, (209) Darlene,(209) Come to the January meting Listed below is information about upcoming meetings and where to learn more. Lincoln 3rd Wednesday, 1 PM Raley s Event Center 765 S. Hwy 65, Lincoln Diana Borg (916) Speaker pending Livermore 4th Tuesday, 10 AM Heritage Estates 900 E. Stanley Blvd. E. Lorene Stack, (925) Merced 2nd Thursday, 1 PM Central Presbyterian Church 1920 Canal Strreet (across the street from the church) Susan Baldasano (209) Modesto 3rd Monday, 2 PM Baha I Center 1100 Carver Rd. (Carver & Roseberg Sts) Noreen Jones (209) Monterey 3rd Wednesday, 10:30 AM of odd numbered months First Presbyterian Church 501 El Dorado St. Don & Ann Trout, (831) Come to the January meeting Napa 1st Thursday, 2 PM Napa Senior Center 1500 Jefferson St., Napa Ron Patrick (707) bonjournapa@hotmail.com No meeting in January Oakland 1st Thursday, 1 PM Grand Ave. 7th Adventist Church, 278 Grand Ave. Kathleen Nagel (510) Placerville 4th Wednesday. 1 PM Placerville Senior Center 937 Spring St., Placerville Frank Ruscoe (530) Redding 2nd Wednesday, 1:30 PM Neighborhood Church of Redding, 777 Loma Vista Bill Morehouse (530) Carol Reeves (530) Reno, NV 2nd Tuesday, 6:30 PM Fire Station # Mae Anne Ave., Reno Marsha Campbell (775) LadyJane2b@sbcglobal.net Roseville 2nd Tuesday, 7 PM Sierra Point Sr. Res Foothills Blvd., Roseville Mary Lou Ward, (916) Speaker Bev Anderson, NCCNA President Sacramento 3rd Tuesday, 1:30 PM Northminster Presby. Church 3235 Pope Street, Sacramento Anne Fletcher, (916) Myke Taylor, (916) San Francisco Call Amy Mahoney to be sure of the meeting day and time. UC-San Francisco Med Ctr. 400 Parnassus Ave. Amb. Care Ctr. 8th Flr., Rm A888, San Francisco Amy Mahoney, (415) amy.mahoney@ucsfmedctr.org San Jose 3rd Saturday, 10:30 AM O Conner Hospital, 2105 Forest Ave, SJ DePaul Conf. Rm., San Jose Stan Pashote, (510) San Mateo 3rd Thursday, 1 PM St. Andrews Lutheran Church 1501 S. El Camino Real, San Mateo Bev Anderson (877) (toll Free) San Rafael 3rd Wednesday, 1 PM Lutheran Church of the Resurrection 1100 Las Galinas Ave., San Rafael Barbara Webb (415) Santa Cruz Call Mary Ann for date and time. Life Oak Senior Center, 1777 Capitola Rd., Santa Cruz Mary Ann Leer, (831) maleer@comcast.net Santa Rosa 1st Thursday, 10:30 AM Santa Rosa Senior Center 704 Bennett Valley Rd. Willie Quarante,(707) Sonoma 1st Friday, 10:30 a.m. Vintage House 264 1st Street Joann Bertolucci (707) Sonora. 4th Monday, 2 PM Sonora Regional Medical Center Conference Room L.D. Wright (209) Stockton 3rd Tuesday, 4 p.m. Service First of Northern California 102 W. Bianchi Rd. Naomi Demby (209) Susanville 1st Saturday 10:30 A.M. Jackie Woodson (530) Truckee 3rd Monday, 1 PM Truckee Pines Apartments Estates Dr. Marsha Campbell (775) No meeting in January Turlock Forming Bev Anderson (877) Ukiah Forming Claudia Douglass (707) Walnut Creek 4th Friday, 10 AM Rossmoor, Hillside Clubhouse, Las Trampas Room, Walnut Creek Nancy Ostrander, (925) continued on page 3

3 Getting to Know Our Support Group Leaders This is a new column starting this month. We have a wonderful group of support group leaders who have fascinating stories to tell. This month, we are meeting the leaders of our southernmost support groups Fresno and Monterey. MARIA CHAVEZ, Leads the Fresno Peripheral Neuropathy Support Group that meets at Carrow s Restaurant, 1484 E. Shaw Ave., Fresno, at a unique time 11:15 a.m. The meeting goes until 12:30-12:45 p.m. People order breakfast, lunch, beverages or not at all. Maria was born in Fresno, moved to take several jobs, and returned to Fresno about 5 years ago. Childhood friends moved away and came back or stayed in Fresno so today she is hanging out with friends from kindergarten and elementary school as well as high school. She left Fresno at age 18 to go to Los Angeles. She sang for small groups in Southern California and then went to the University of Mexico City to study anthropology and psychology. Toward the end of her third year, there was a major earthquake with loss of life there and for some while her parents couldn t contact her. This scared them enough that her father said that if she would come back, he would buy her a car. Driving her car, she went to several other colleges in the United States. She met an old friend from high school, got married, and much later divorced. She had four children a boy and three girls. She now has 9 grandchildren ages 27 years to 10 months. Marie worked for the State of California for some years dealing with job placement and job development. While living in San Francisco, she was active in politics and was San Francisco Commissioner on the Status of Women under Mayors Alioto and Moscone. Maria was the first Latina to hold this post. Maria said that she came out of a building and saw many police cars and security personnel. A friend saw her and told her Mayor Moscone had been killed. It was a major shock and great sorrow as she considered Mayor Moscone a good man and a friend. Maria was active in the civil rights movement for women and minorities and in charge of training programs for the State. She became Executive Director of a program to place people in government and state jobs. At times during her career, Maria had noticed some odd physical issues, but she didn t pursue a diagnosis until she moved back to Fresno after she retired. Her daughter took her to Cedar Sinai hospital in Los Angeles. She saw a neurologist who gave her many tests and conclusively diagnosed peripheral neuropathy. Her neurologist told her about The Neuropathy Association. She joined, read everything she could about neuropathy, and decided a support group was needed in Fresno. She asked for information and didn t get a response. When Bev sent a mailing and contacted her, she came to the first meeting and volunteered as Leader. She had run a center in Southern California for all kinds of groups and knew how to run a program so she didn t hesitate. She is assisted by a Leadership Team. What helps her most with her PN is attitude, meditation, yoga exercises and doing for others. The exercise lessens the pain and makes her feel better. She is consistent but doesn t overdo it. She says, Giving to others is the best way to give back to yourself It makes you feel better. She also writes out her thoughts and feelings which seems to help. She has found that allowing people in the group to express themselves freely, listening to one another is really important. Everyone has their own story. They need to know it is a safe place to go. She tells them that whatever is said there stays there. DON & ANN TROUT, Leaders of the Monterey Peripheral Neuropathy Support Group conduct their meetings at First continued on page 7 Affiliate News... continued from page 2 West Sacramento 3rd Tuesday, 2 PM West Sacramento Senior Center 664 Cummins Way Sandra Vinson,(916) slvins11@charter.net Woodland 1st Monday, 3:30 PM Woodland Comm. & Senior Center 2001 East St., Woodland Delia Genera (530) Yuba City 2nd Monday, 7 PM Sutter Estates 1230 Plumas Street, Yuba City Nancy Escudero,(530) nancychristina1@yahoo.net Yreka 2nd Thursday, 2 PM Meadowlark Assisted Living Center Terry Rees,(530) Gene Arnold,(530) Help With Health Care Challenges If number not in your area, call this one and ask for the right number. HICAP Health Insurance Counseling for seniors and people with disabilities. Call Seniors First/ SeniorLink at to make an appointment. Health Rights Hotline Serving Placer, El Dorado, Yolo, & Sacramento Counties, regardless where you receive your health coverage. Tollfree (888) or TDD (916) In Sacramento, call (916) HMO Help Center Assistance 24 hours a day, seven days a week. Call (888) HMO-2219 or (877) (TDD). DRA s Health Access Project Free publications about the health care and insurance rights and concerns of people with disabilities and serious health conditions. For more information, go to dralegal.org/, and click on Projects. Page 3

4 DISCOUNTS FOR NCCNA MEMBERS Give a call or visit. If you chose to purchase the service or wares of any on this list, pull out your NCCNA Membership Card and claim the discount. Auburn The Footpath, 825 Lincoln Way, Auburn, CA (530) Fax (530) Mon.- Fri. 9-5:30, Sat. 9-5, Sun They carry SAS, Dansko, Merrell, Finn, MBT, Keen, Naot, Reiker, Ecco, Teva, Clark, Wolky, Mephisto, and Earth shoes. 10% off the regular price. Bev Anderson is a regular customer for shoes and slippers. Fortuna Strehl s Family Shoes & Repair, Corner of 12th & Main, 1155 Main Street, Fortuna, CA (707) Fax (707) Strehl s carries the brands of shoes most kind to neuropathic feet. Marilyn Strehl, C. PED is a Certified Pedorthic. Discount of 10% given. A sizable number of the Eureka PN Group buy shoes here. Marilyn attended a recent meeting and joined NCCNA. She was welcomed. Sacramento Dr. Tracy Basso, one of our medical advisors and a member of NCCNA, is happy to offer NCCNA members a 15% discount on purchases at Shoes-n- Feet during Shoesn-Feet specializes in comfort shoes, many that are stylish, and carries such brands as Actrix, Aravn, Brooks, Dansko, Naut, Finn, Comfort, and New Balance among others. Most, if not all their shoes, accommodate orthodics. Store employees provide great customer service ensuring the shoes you purchase fit properly, provide good support and feel comfortable. Shoes-n-Feet is at 4740 Natomas Blvd, Suite 130, Sacramento, CA (916) Page 4 President s Message by Bev Anderson 2009 opens opportunities unlimited for us to make the facts of peripheral neuropathy known to the general public and to effectively communicate with the health care community. Each of us can do our part. The more who participate, the more effective we will be. Each Group Leader received a packet of brochures to be distributed to doctors, podiatrists, physical therapists, hospital discharge planners, senior citizens centers, pharmacies, clinics, hospital or clinic neurology and podiatry departments, and any other place where people might pick up information for themselves or for others. Some have suggested beauty parlors and barber shops, for example. In your group, please list those places brochures need to be delivered and get volunteers who will make the deliveries. When I do this, I designate an area and go to the various departments at a clinic or to doctor s offices in a certain area. The staff in each appreciates getting them. Just give your name and that you are with (the name of your support group so they know where you are coming from) and say that you have a set of brochures about peripheral neuropathy and support groups to leave with them. Leave 8-10 at each department or office. If a person calls the 877 number on the brochure or contacts by , they will be given the information about the group nearest them and a number to call. Some support groups like to put a narrow flyer inside the brochures they distribute telling about the local group and giving contact information. This makes the local opportunities more readily available, but if the town or one nearby is listed in the brochure, and they respond to the contact information on the brochure, they will learn about the group. Question of the Month Where do you buy socks? Inquiring minds want to know where you can obtain socks without the tourniquet at the top that impedes the blood flow of peripheral arteries. There are socks that go farther up the leg with a tighter knit that stretches and holds the socks up. However, finding these is a challenge. Mervyns used to have a dandy called triple roll but discontinued them some while back. Since basically all of us with neuropathy wear socks full or part-time, there has to be some store or mail order company that produces an appropriate sock. Please respond to or info@pnhelp.org if you have an answer. If you have a question you would like asked, please, use this contact information. We will use one a month. Thanks to all of you and others who responded to the letter that went out in November by paying your 2009 dues and making donations. The letter to neurologists along with brochures to distribute is being mailed. If you have not yet paid your dues for 2009, please send your check for $30 to NCCNA, P.O. Box 6985, Auburn, CA If you receive this and can mail it by the 31st of December, it is still $24. Medical Community Contacts When dealing with the health care community, please use patience, consideration, and respect. They are not perfect but neither are we. One of the problems we face can be the attitude of neurologists so we respond negatively. This is unfortunate as neurologists are stretched thin. No community has enough. They tend to specialize in central nervous system diseases as these are seen as life threatening where you can survive with neuropathy. It is hard to grasp that when you are in major pain and need help, however. One of the best ways to communicate with them is via FAX which gives them opportunity to deal with your request more fully. Call their office and ask for it. Be specific about your pain and its level and how you really feel. Remember that please and thank you are best included in the message. They didn t go through years of college, medical school, and additional time to specialize in neurology to respond well to criticism or disrespect. Please take this attitude with you when you deliver brochures. A smile and friendliness with the staff you meet will help them facilitate the display of the brochures.

5 Report from Trisha Torrey Tricia spoke about advocacy at the June 26, Neuropathy Action Foundation Conference in San Francisco. Her presentation was very well received and hopefully will soon be on a DVD coming your way. Tricia was flown in from the East Coast. This is her blog describing her experience at the conference to people who know nothing about neuropathy. Neuropathy: 20 Million suffer from a Condition You ve Never Heard Of This week I spoke at a conference for people in Northern California who suffer from neuropathy (ner-op-a-thee) Most of you are asking, what is neuropathy? In fact, for the weeks leading up to my participation in the program, that question was asked of me almost every time I mentioned the invitation. What is neuropathy? I had a few ideas. My dad has peripheral neuropathy. My former next-door-neighbor has idiopathic neuropathy, and my husband who has diabetes faces the prospect of a neuropathy diagnosis some day. So I spent some time learning what I could about neuropathy before I spoke to this group because what they deal with needs to be understood. It s scary stuff, and in so many ways, it seems like it s being ignored. Neuropathy seems to be both a symptom and a condition. It s a short-circuit or an interruption in the electrical impulses of the nerves in any extremity in the body, and it ends up being horribly painful, or totally numbing, or anything in between. It can be caused by a number of other medical problems, like diabetes, but most is considered idiopathic meaning the cause is unknown. At its extreme, neuropathy is terribly painful. For some patients there is a tingling feeling in the feet or toes or fingers or hands as if they fell asleep. Maybe you ve seen the drug ads aimed at patients with neuropathy? Hundreds of bees stinging someone s foot. Just think about that for a moment, and know you would have to live with it day in and day out. I had some takeaways from the conference that are worth sharing with you, because we can learn from what s being done (or isn t being done) in the neuropathy world. Here are some random thoughts: Patients with neuropathy are as frustrated by diagnosis problems as anyone else. One problem with neuropathy is that up to 80 percent of patients who are diagnosed are diabetic but what about the other 20 percent? It can result from injury, chemo, a number of other assaults on the body but the real cause of the short circuiting for many patients cannot be determined. [Note: Tricia got her stats a bit mixed up. Up to 80% of people with diabetes can be diagnosed with PN but they are approximately 1/3 of those having neuropathy.] Doctors can t agree on treatments and patients get confused. There was a surgeon who was citing statistics on the success of several surgeries similar to carpel tunnel surgery. But a few speakers later two doctors were very clearly anti-surgery. For some neuropathy patients there are some infusion-type treatments that work very well, including one called IVIG which uses blood platelets. The problem is that insurance companies don t want to cover IVIG. Some patients, who have been treated successfully with IVIG for months, even years, find insurance coverage for it suddenly dropped. An organization was founded a year ago to help patients defend their need for infusion treatments and it has found quite a bit of success. But I find it s a shame they have to work so hard. The success of the treatment is welldocumented. Patients are able to return to normal function. It should be illegal for these insurance companies to deny this treatment. Neuropathy is not an orphan disease. With 20 million sufferers, it s not even unusual! What separates neuropathy from other conditions is less the condition itself, and more the proactivity from people who suffer from it, and have committed themselves to combating the forces that make it even more difficult. I met several of them, and they are an impressive group of people. Dominick Spatafora, Michelle Vogel, Bev Anderson and others are doing what needs to be done to help themselves and help others conquer neuropathy. If you have a disease or condition that requires advocacy and fighting for the treatment that should be fairly yours, take a page from their book. There is empowerment through action, and the work these folks are doing on behalf of neuropathy sufferers is a wonderful example. DISCOUNTS FOR NCCNA MEMBERS (CONTD.) West Sacramento Beverly s Never Just Haircuts and Lilly s Nails, 2007 West Capitol Ave., West Sacramento, CA Tues. Fri. 9-5, Sat. 9-1, closed Sunday and Monday. Walk-Ins Welcome Hair - (916) Nails (916) The hairdressers and manicurist do great work and are real nice and accommodating. They have a number of older male and female clients, are familiar with neuropathy, and their prices are among the most reasonable around. 10% off the regular price. Sandra Vinson is one of their regular hair, manicure, and pedicure clients. Additional Discounts More discounts will be added when someone obtains the agreement of a business that they will offer a discount to members showing their cards. If you talk to someone, you can tell them that they will be listed each month in our newsletter so our members will know of their generosity and patronize their business. Call (877) or e- mail info@pnhelp.org. An agreement form will be mailed to the business and upon its being signed and returned, their business will be added to the next newsletter. Page 5

6 Auditory Neuropathy Treatment and Prevention Auditory neuropathy is a hearing disorder in which audio enters the inner ear as usual but the inflection of signals from the inner ear to the mind is impaired. An individual with auditory neuropathy may be capable to learn sounds, but would still have trouble recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync. The condition probably has more than one cause. In some cases, it may involve damage to he inner hair cells specialized sensory cells in the inner ear that transmit information about sounds through the nervous system to the brain. Several factors have been linked to auditory neuropathy in children. However, a clear cause and effect relationship has not been proven. Other causes may include faulty connections between the inner hair cells and the nerve leading from the inner ear to the brain, or damage to the nerve itself. A combination of these problems may happen in some cases. Although outer hair cells-haircells adjoining to and more numerous than the inner hair cells are more inclined to damage than inner hair cells, outer hair cells appear to operate usually in folk with auditory neuropathy. Some people with auditory neuropathy have neurological disorders that also cause problems outside of the hearing system. Auditory neuropathy can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired. Auditory neuropathy runs in some families, which suggests that genetic factors may be involved in some cases. Free article written by Juliet Cohen who writes articles seen on Page 6 Large or Small Fiber? The Neuropathy News by The Neuropathy Association ran a piece by Marc Treihaft, MD, FAAN, which explains why some people with PN have pain and some don t. Peripheral neuropathies involve different populations of nerve fibers. Patients with disorders of the large nerve fibers complain of numbness, tingling, weakness, which is readily detected with electromyography (EMG) and nerve conduction tests. Another group complains of severe pain which does not necessarily show up on the same tests, which explains why this group is frequently misdiagnosed as having mental or emotional problems. The large fibers carry information regarding position and vibration from skin receptors. Patients with strictly large fiber neuropathies due to disorders such as diabetes complain of numbness without pain Weakness results from involvement of the motor nerves innervating the muscles. In contrast, small fibers carry information regarding pain and temperature. Abnormalities affecting these nerves cause alteration of pain and temperature perception and severe pain. These people are frequently evaluated as having arthritic disorders. Some people have disorders of both large and small nerve fibers. Unique, Possibly Helpful, Suggestions? We will continue to be bombarded with potions, creams, devices, both manual and electronic, and a myriad of other approaches to treating neuropathy. As people realize the potential size of the neuropathy community, they will be promoting something. For those of you dealing with , you know that hugely erroneous material comes regularly and has to be filtered out. We can recognize the smear campaigns and the rumor mills at election times, especially, and check other questionables at snopes.com that promise all kinds of benefits for passing them on. Of course, you also know that those that ask you to send them to 10 people or some such are often ways to harvest the addresses of those to whom you send it. The same thing happens with neuropathy suggestions; it is often hard to filter them especially since one will seem to help some but not others. If you try something that you think looks interesting but not harmful, please let us know if it seemed to help or not to help. If you would like to know about other people s experience with a product, ask at your support group meeting or send an to info@pnhelp.org or call We ll try to keep tabs on at least some of them for reference.

7 Annual Meeting, April 27, 2009 Circle this date on your calendar: Monday, April 27, 2009, is the date of the Annual Meeting/Annual Mini-Conference for NCCNA. It will be at the beautiful, new Woodland Community and Senior Center in Woodland hosted by the support groups in Yolo County. Woodland is easily accessed via I-5 and by Hwy 113 through Davis from I-80. It is near the Sacramento Airport. Times and program are not yet finalized so watch for details here. It will basically be 9 a.m. to 3 p.m. and include morning snacks and lunch. There will be no charge to attend. The Yolo support groups will provide the morning snacks and NCCNA will cover the lunch. The Woodland Community and Senior Center is co-hosting the event and providing the facility free of charge. We applaud them for this generosity and evidence of support for the Woodland PN Group that meets there. Thanks to Delia Genera, Woodland Leader, for making the arrangements. Corporations are required to provide an Annual Report of the previous year within 120 days of the close of the fiscal year. The report will be in writing and briefly reviewed at the meeting with opportunity for questions, suggestions, and observations. Other than this there will be speakers and activities such as you d find at a conference. Last year we had two speakers in the morning and Jayah with her walking poles in the afternoon. People reported it enjoyable and worthwhile. Do plan to come this year. Support Group Leaders... continued from page 3 Presbyterian Church, 501 El Dorado Street, Monterey, at 10:30 a.m. in odd numbered months. Don was born in Scottsbluff, Nebraska, and Ann in Alliance, both in the western part of the state. Her family moved to Scottsbluff where she and Don went through high school together and then drove the 450 miles to the University of Nebraska together. They also saw each other at the local Presbyterian Church. Both got their degrees. They married and before long Ann was home with their two children, a boy and a girl. Don went to dental school in Lincoln and practiced a short time before going into the Navy where he served as a dentist for 4 years. They visited Monterey and liked the area, as there were Navy people around and a Navy Postgraduate School. They found a church (where the group now meets), opened a dental practice, and settled in. He considers himself quite lucky to be in such a fantastic place. Don has Type 2 Diabetes that is well controlled, but he is starting to have neuropathy symptoms. Ann s neuropathy is idiopathic. They have some ideas of possible causes. None, however, can be verified. She is in major pain, but is able to function with her med routine Methadone 4 times a day, with Lyrica and Cymbalta as well. Ann also uses Ketamine. In addition to leading the neuropathy group, Ann and Don sing in the church choir, community chorus, and I Cantori de Carmel (Singers of Carmel) of which they were Charter Members over 25 years ago. That they are leading the neuropathy group, Don feels, is really good for them. With the seriousness of Ann s neuropathy and the beginning of his, they have studied a lot and have information, They can also relate to the people as they know their problems and their medications. Having what he calls an Information Table, Don finds, is helpful to the group. For example, he will display samples of topicals available, such as Ketamine, which is obtained by prescription from a compounding pharmacist, and Mentholatum which is an over the counter ointment. People just starting with symptoms of neuropathy many times find topicals quite helpful. Everyone has different symptoms and different luck with treatments. The best speaker, Don says, they have had so far is a pharmacist. Don has a lot of contacts in the medical community and knows a lot of people which helps obtain speakers. Don and Ann like to travel, but not as much any more as Ann s neuropathy has progressed. They especially enjoyed driving the back roads in England and discovering small, unique villages. At home, they pamper their 14 year old standard poodle, Sophie. Don delivers Meals on Wheels and takes Sophie with him so all those on his route look forward to their visits. He also is a Docent at Point Logos State Reserve. He takes a shift at the Information Center and Museum at least four times a month. WE NEED YOUR HELP! Here are current needs for help. If you or someone you know could help with any of these, please call us toll free at (877) Newsletter layout: We the articles. The person using PageMaker (which we can provide) does the layout and s it to our printer. Enter data in an Excel form: We need help entering data from membership forms. Board members: Special needs are in public relations, computer skills, and knowledge of nonprofit organization development, and accounting. Page 7

8 The Northern California Chapter of The Neuropathy Association (a California public benefit, nonprofit, tax exempt corporation) P.O. Box 6985 Auburn, CA NONPROFIT ORGANIZATION U.S.POSTAGE P A I D PERMIT NO. 25 AUBURN, CA Page 8 Chiropractor Speaks at San Rafael Dr. Jonathan Smith, a graduate of the University of Michigan and Northwestern College of Chiropractic, has been in practice in San Rafael for 9 years. He specializes in the treatment of headaches, neck pain, and peripheral neuropathies. Dr. Smith divided causes of neuropathy into these categories chemical, pathological, and biomechanical and advocated a collaborative, interdisciplinary approach seeing more than one medical person to give a wider perspective on your specific situation. He said any tension on a nerve will affect the nerve all the way to the spine. Dr. Smith believes inflammation is the major cause of neuropathy and it is produced in a number of ways. This is inflammation in or around the nerve. He says, the nerve is like a garden hose and is flexible. A joint that is not moving properly can spill inflammation on a nerve. He said that he finds that when he removes the cause of inflammation, the neuropathy improves. Dr. Smith said all limbs should have a range of motion so that joints freed up also means the freeing of the nerve. He emphasizes 1. mobilizing joints and restoring nerve function 2. nerve mobilization, freeing nerves from surrounding tissue. The Northern California Chapter of The Neuropathy Association (a California public benefit, nonprofit, tax exempt corporation) P.O. Box 6985 Auburn, CA / info@pnhelp.org Hope through caring and education Our mission is to provide support, information and referral to people with neuropathy and to thosewho care about them, to inform and connect with the health care community, and to support research. Dues - $24 a year (until January 1, 2009) (prorated for new members at $2 per each month left in the year) All contributions 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 Northern California Chapter of the Neuropathy Association (NCCNA) 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.