(CONTINUED ON PAGE 3) SPRING/SUMMER 2016 FPN News Medical Marijuana for Neuropathic Pain Marijuana has been studied for the treatment of chronic pain. It has been used to treat people whose pain did not respond to other drugs such as narcotics. In fact, the medicinal use of cannabis in peripheral neuropathies and neuropathic pain will be one of the major areas of investigation at the Foundation for Peripheral Neu- ropathy’s International Research Symposium in September 2016. Our symposium brings together renowned investiga- tors and clinicians from basic and clinical research, young investigators, industry leaders, and representatives from FDA, NIH and NCI. We will combine basic science discus- sions with clinical topics to stimulate further research on this timely issue. Our goal is to identify areas of basic and clinical research to support or refute the use of cannabis in peripheral neuropathies and neuropathic pain. Those in favor of the use of medicinal marijuana for treating chronic pain argue that to date, clinical trial results and experi- ence with approved cannabis-related drugs offer sufficient evi- dence that herbal cannabis is safe and efficacious. The dire need for an A MESSAGE FROM THE EXECUTIVE DIRECTOR This is a truly exciting time for the Peripheral Neuropathy community. Early this year we completed our three-year strategic plan. This plan sharpens our focus on new and immediate priorities. The Foundation is pursuing an ambitious research agenda to harness the resources and expand the expertise needed to enroll an additional 1,000 patients into the Peripheral Neuropathy Research Registry by the end of 1st quarter of 2017—an essential resource for research that will lead to greater understanding of PN, improved diagnosis and most importantly new treatments to PN patients. At the same time we launched our new website. With every decision, we remain committed to collaborating with researchers, volunteers, donors, family members, caregivers, and, above all the patients with PN. We care, we listen, and we remain committed to providing you with the most current and reliable information to help people living with PN manage their symptoms and lead long, healthy and fulfilling lives. Important to our research agenda is our bi-annual international research symposium. This year, the symposium titled Advances in Neuropathy— Emerging Therapies will be held in Chicago later this fall. The focus for this meeting is chemo-induced peripheral neuropathy, new and developing drugs and cannabis for neuropathic pain. Another objective of our strategic plan is to expand our board of directors. I am happy to announce earlier this year we welcomed Lou Mazawey to our Board. Lou is an attorney with Groom Law Group. Thirteen years ago Lou was diagnosed with a relatively rare autoimmune-type of PN; you can learn more about Lou on page 3 We still need your support as we travel down this path together to uncover the underlying cause, develop effective treatments and one day a cure for PN. Support can come in many forms; gifts from $50, $100, 250 $500, $1,000 or more makes a significant difference in our fight. Volunteerism is another way to donate to the cause. We are seeking to expand our board of directors with talented and passionate members of the community. Or, how about joining one of our committees? To learn more about our volunteer opportunities, please visit our website or call us at 800-883-9942. I am confident that we will continue to achieve the unimaginable together. Warmest Regards, Pam Shlemon P.S.—Please join me June 10th, in Silver Spring MD for the FDA public meeting on Patient-Focused Drug Development for Neuropathic Pain associated with Peripheral Neuropathy. If you are able to travel or live around the Silver Springs area, we need your presence in person. This is your opportunity to be face-to-face with the FDA and to share the impact painful peripheral neuropathy has on your daily life and your view on the current treatments available. Turn to page 2 to learn more. Please send an email or contact us at info@ tffpn.org or 800-883-9942 if you will be attending in person. PAIN TRACKING Made a Difference I am Ellen Grainey, a 56 year old lifelong resident of New England. I worked full time as an accountant until July 21, 2010. e pain started in my hands. Working on the computer all day long it was hard to ignore how the pain was worsening. To my surprise, the doctor quickly ruled out carpal tunnel syndrome and ordered tests for peripheral neuropathy (PN). Weeks then months went by waiting for a confirmed diagnosis. My primary doctor provided little help, and even leſt me feeling as if he didn’t believe me! Living with so many unanswered questions, constant worry over not being able to work (I was placed on disability), fighting the bureaucracy of Medicaid and Social Security and the fear over what living with PN would mean for me, I couldn’t sleep and became very depressed. Unhappy with myself and the life I was living, I needed to do SOMETHING for myself! I bought an e-reader, signed up for Facebook, and started to do research on PN. I found many resources including the Foundation for Peripheral Neuropathy. Slowly, I found I could concentrate on things other than the pain, doctors’ visits and financial worries. e FPN newsletter always has something interesting to read. In the summer of 2013, they recommended a book, “Pain Tracking: Your Personal Guide to Living Well with Chronic Pain,” by Deborah Barrett. I read it all and visited her website, paintracking.com: INSIDE • Emotional health and pain • Neurofeedback study results (CONTINUED ON PAGE 7) We make a living by what we get but we make a life by what we give. Winston Churchill
8
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Transcript
No Limits – Riding Across America People with chronic conditions,
like peripheral neuropathy and
other physical impairments, often
believe there are limits to what they
can do. Pain can be ever present
in their lives and their vitality for
living can diminish. But think about
this…even if you think you can’t
do something, maybe you really can! British adventurer, Dominic Gill, set out to find some
unique individuals who were willing to take on new challenges in spite of their limitations.
With an unusual tandem bike built with a recumbent front seat and secondary free-wheel
mechanism, Gill organized a 4,000 mile cross-country bike trip. The bike allows weak or
disabled individuals to tackle long distances. This unique journey was originally conceived
in 2006 when Gill met Ernie Greenwald
of Lompoc, CA, while on his first tandem
cycling expedition from Alaska to
Argentina. Greenwald was a 70-year
old with lymphocytic lymphoma who
wanted to bike across America. He was
filled with passion to live an adventurous life despite his physical condition. Anxious to
ride, Greenwald discovered that his cancer had spread and he was not going to be able to
participate.
Gill was forced to set out on a different adventure. After mapping out his journey
and breaking it down into 10 stages, Gill went out and found 10 new companions
to accompany him—all perfect strangers and all with significant physical disability:
newsletter, website or in press releases to tell the
story nationally.
All of your stories will be used as encouragement
for others. And your stories will join together to tell
an even bigger story—the story of PN. What it is.
How it affects you. The need for research and new
treatments. The need for a cure.
If you haven’t told us your story…we hope you will.
Pam Shlemon
Featured in this issue
FPN Profile | Ben Coconaugher
Page 1, 6
Research | News
Page 2
Clinical Trials
Page 3
Living Well | Tai Chi, Acupuncture
Page 4
Ask the Experts | Q & A
Page 5
A m e s s A g e f r o m t h e
e x e c u t i v e D i r e c to r
INSIDE• Research Registry
• Alternative Therapies
Dianne—ChiCago to ClevelanD
Some might say Dianne Jones is one of the lucky ones. Diagnosed with idiopathic peripheral
neuropathy 25 years ago, she experiences numbness and tingling but she has no pain. Her hands
and feet are numb; moving around is difficult. She loses her balance, bumps into things, her
gait is uneven. She is stiff and uncoordinated, and needs a railing to go up and down stairs. Her
hands get really cold—or really hot.
Active in her real estate business and in her church, Dianne enjoyed many of her tasks: typ-
ing, sewing and mending, serving communion. She especially liked typing and was quite good.
Now, she can’t type or thread a needle. It started getting worse about 10 years ago. She could
walk fast but not slow—she lost her balance, she stumbled. Her doctor even noticed
that she trailed her fingers along furniture to help her keep her balance—something
Dianne was doing without thinking.
To keep from falling, Dianne purchased a cane. Onlookers often
draw inaccurate conclusions when they see people fall; the
cane helps Dianne’s stability and sends the message to oth-
ers that she has physical limitations. Dianne volunteers
with the ‘Culture Bus’ that takes seniors with early
(CONTINuED ON PAGE 3)
(ContinueD on Page 6)
Green CMYK
PMS5425
PMS382
PMS5425
spring 2011
FPN NewsCMYK Match PMS382
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memory loss to cultural events. Using her cane
and struggling to walk, she is often seen as one
of the patients. Still she enjoys the outings and is
philosophical, “People need to do what they can.”
Dianne and her husband Doug have always
been active. They liked to bike but when
Dianne could no longer control her own
bike, they bought a tandem. They try to ride
20 miles every week and even participated
in a 300 mile race in Wisconsin.
(CONTINUED ON PAGE 3)
Green CMYKPMS5425
PMS382PMS5425
SPRING/SUMMER 2016
FPN NewsCMYK Match PMS382PMS5425
PMS382PMS5425
PMS382PMS5425
PMS382PMS5425
Medical Marijuana for Neuropathic Pain Marijuana has been studied for the treatment of chronic pain. It has been used to treat people whose pain did not respond to other drugs such as narcotics. In fact, the medicinal use of cannabis in peripheral neuropathies and neuropathic pain will be one of the major areas of investigation at the Foundation for Peripheral Neu-ropathy’s International Research Symposium in September 2016. Our symposium brings together renowned investiga-tors and clinicians from basic and clinical research, young investigators, industry leaders, and representatives from FDA, NIH and NCI. We will combine basic science discus-sions with clinical topics to stimulate further research on this timely issue. Our goal is to identify areas of basic and clinical research to support or refute the use of cannabis in peripheral neuropathies and neuropathic pain.
Those in favor of the use of medicinal marijuana for treating chronic pain argue that to date, clinical trial results and experi-ence with approved cannabis-related drugs offer sufficient evi-dence that herbal cannabis is safe and efficacious. The dire need for an
A M E S S A G E F R O M T H E E X E C U T I V E D I R E C TO R
This is a truly exciting time for the Peripheral Neuropathy community. Early this year we completed our three-year strategic plan. This plan sharpens our focus on new and immediate priorities. The Foundation is pursuing an ambitious research agenda to harness the resources and expand the expertise needed to enroll an additional 1,000 patients into the Peripheral Neuropathy Research Registry
by the end of 1st quarter of 2017—an essential resource for research that will lead to greater understanding of PN, improved diagnosis and most importantly new treatments to PN patients.
At the same time we launched our new website. With every decision, we remain committed to collaborating with researchers, volunteers, donors, family members, caregivers, and, above all the patients with PN. We care, we listen, and we remain committed to providing you with the most current and reliable information to help people living with PN manage their symptoms and lead long, healthy and fulfilling lives.
Important to our research agenda is our bi-annual international research symposium. This year, the symposium titled Advances in Neuropathy—Emerging Therapies will be held in Chicago later this fall. The focus for this meeting is chemo-induced peripheral neuropathy, new and developing drugs and cannabis for neuropathic pain.
Another objective of our strategic plan is to expand our board of directors. I am happy to announce earlier this
year we welcomed Lou Mazawey to our Board. Lou is an attorney with Groom Law Group. Thirteen years ago Lou was diagnosed with a relatively rare autoimmune-type of PN; you can learn more about Lou on page 3
We still need your support as we travel down this path together to uncover the underlying cause, develop effective treatments and one day a cure for PN. Support can come in many forms; gifts from $50, $100, 250 $500, $1,000 or more makes a significant difference in our fight.
Volunteerism is another way to donate to the cause. We are seeking to expand our board of directors with talented and passionate members of the community. Or, how about joining one of our committees? To learn more about our volunteer opportunities, please visit our website or call us at 800-883-9942.
I am confident that we will continue to achieve the unimaginable together.
Warmest Regards,
Pam Shlemon
P.S.—Please join me June 10th, in Silver Spring MD for the FDA public meeting on Patient-Focused Drug Development for Neuropathic Pain associated with Peripheral Neuropathy. If you are able to travel or live around the Silver Springs area, we need your presence in person. This is your opportunity to be face-to-face with the FDA and to share the impact painful peripheral neuropathy has on your daily life and your view on the current treatments available. Turn to page 2 to learn more. Please send an email or contact us at [email protected] or 800-883-9942 if you will be attending in person.
PAIN TRACKINGMade a Difference I am Ellen Grainey, a 56 year old lifelong resident of New England. I worked full time as an accountant until July 21, 2010.
The pain started in my hands. Working on the computer all day long it was hard to ignore how the pain was worsening. To my surprise, the doctor quickly ruled out carpal tunnel syndrome and ordered tests for peripheral neuropathy (PN). Weeks then months went by waiting for a confirmed diagnosis. My primary doctor provided little help, and even left me feeling as if he didn’t believe me! Living with so many unanswered questions, constant worry over not being able to work (I was placed on disability), fighting the bureaucracy of Medicaid and Social Security and the fear over what living with PN would mean for me, I couldn’t sleep and became very depressed.
Unhappy with myself and the life I was living, I needed to do SOMETHING for myself ! I bought an e-reader, signed up for Facebook, and started to do research on PN. I found many resources including the Foundation for Peripheral Neuropathy. Slowly, I found I could concentrate on things other than the pain, doctors’ visits and financial worries.
The FPN newsletter always has something interesting to read. In the summer of 2013, they recommended a book, “Pain Tracking: Your Personal Guide to Living Well with Chronic Pain,” by Deborah Barrett. I read it all and visited her website, paintracking.com:
INSIDE• Emotional health and pain• Neurofeedback study results
(CONTINUED ON PAGE 7)
We make a living by what we get but we make a life by what we give.
Winston Churchill
Here’s Your Chance to Make YOUR Voice Heard!Public Meeting on Pain from Peripheral Neuropathy sponsored by the U.S. Food and Drug Administration (FDA)
The Food and Drug Administration (FDA) invites you to an upcoming public meeting on neuropathic pain associated with peripheral neuropathy to be held on June 10, 2016 from 1pm-5pm (EDT) at the FDA Campus in Silver Spring, Maryland (or you may attend virtually!). Specific details are outlined below.
The purpose of the meeting is to gather patients’ perspectives on symptoms and daily impacts that matter most to them, and to discuss available approaches for treating neuropathic pain as-sociated with peripheral neuropathy.
This meeting is an exciting opportunity for patients to bring their voice to FDA and the drug development process.
You may participate in person OR through a live webcast (or send your feedback to FPN’s Executive Director, see below*) FDA needs your help to make this meeting a success. Please follow the links below to register, explore the discussion questions and meeting format, and find more information on FDA’s Patient-Focused-Drug Development initiative.
The meeting format maximizes patient participation. For each discussion topic, a small panel of patients or caretakers will pro-vide brief comments to start the dialogue. The panel comments will be followed by a facilitated discussion with other patients and patient representatives in the audience. Patients or caregiv-ers who would like to be considered to be on the opening panel can indicate that as part of registration. They will be asked to send a short summary of their responses to the discussion ques-tions (posted on their registration site) to [email protected].
This is an exciting opportunity to share your experiences living with PN. If you have any questions, please feel free to contact them at [email protected].
Even if you can’t participate in the meeting yourself, there is an-other way to make your voice heard!
Pam Shlemon, Executive Director for the Foundation for Pe-ripheral Neuropathy, will be attending the meeting in person. We would like to send her with current information from pa-tients like you about what it is like to live with peripheral neu-ropathy. Please complete a very brief survey sharing your experi-ences and she will present this information at the meeting. To complete the survey go to https://www.surveymonkey.com/r/FPN_patient_survey
FYI: For all of this information plus a map of the meeting loca-tion and nearby hotel recommendations, visit the FPN website at: https://www.foundationforpn.org/2016/04/10/5176/
SAFETY AND EFFICACY OF REPEATED INJECTIONS OF BOTULINUM TOXIN IN PERIPHERAL NEUROPATHIC PAIN (BOTNEP): A RANDOMIZED, DOUBLE-BLIND, PLACEBO-CONTROLLED TRIAL
Botulinum toxin type A, which blocks nerve signals and causes muscle paralysis, is widely used to treat muscle hyperactivity, but evidence that it may also have analgesic
activity is now emerging. In the past decade, findings
from several experimental studies in animals
and healthy people have suggested that
botulinum toxin A is
safe. This study shows the safety
and efficacy of repeated administrations of botulinum
toxin A in a group of patients with peripheral neuropathic pain of different causes. The treatment was particularly efficacious in participants with preserved nociceptive (nociceptors are the nerves which sense and respond to parts of the body which suffer from damage.) input as shown by the presence of allodynia (referring to central pain sensitization/increased response of neurons following painful, often repetitive, stimulation) and minimal thermal deficits. These results highlight the relevance of a therapeutic approach aiming to use treatments on the basis of clinical phenotypes rather than the cause of pain.
Source: TheLancet.com February 29, 2016
NEUROFEEDBACK AS TREAT-MENT FOR CHRONIC CHEMO-THERAPY-INDUCED PERIPHER-AL NEUROPATHY (CIPN)
Neurofeedback (NF) is a brain-training paradigm that induces neuroplasticity to modulate brain activity and therefore may improve CIPN symptoms. The study identified the location of brain activity that contributes to the physical and emotional aspects of chronic pain. The study participants (71 patients all of whom were done with chemotherapy for at least 3 months and rated their neuropathy as 3 or higher on the National Cancer Institute’s neuropathy rating scale) were able to modify their own brain activity through electroencephalogram (EEG) biofeedback. EEG tracks and records brain wave patterns. Chronic pain was decreased and quality of life was increased through neurofeedback, according to research presented at the American Psychosomatic Society 2016 Annual Meeting.Source: www.psychosomatic.org March, 2016
TOPICAL AMBROXOL FOR THE TREATMENT OF NEUROPATHIC PAIN
Ambroxol has been authorized for the treatment of respiratory disorders since 1979 and can now be freely purchased over the counter. Since its local anesthetic properties were recognized at an early stage, ambroxol-containing pastilles have also been authorized for the treatment of sore throat. However, the substance has never been used to date as an analgesic, although pain-related behaviors have been suppressed in animal studies, even in chronic pain situations. Compared with local anesthetics, ambroxol is, interestingly, a very potent blocker of voltage-dependent sodium channels, blocking these channels about 40 times more strongly than lidocaine. In view of the low toxicity of ambroxol, it seemed reasonable to try using it for the treatment of neuropathic pain that failed to respond to other standard options. The study concluded that ambroxol acts as a strong local anaesthetic and preferentially inhibits the nociceptively relevant sodium channel subtype Nav 1.8. For the first time, they were able to report on a relevant pain relief following topical ambroxol 20% cream in patients with neuropathic pain. In view of the positive side effect profile, the clinical benefit in patients with pain should be investigated further.
Source: Der Schmerz, November 2015
alternative to narcotics dictates that cannabis be considered as a viable and acceptable treatment.
To the contrary, those arguing against the use of cannabis for pain contend that a review of robust tri-als does not support efficacy of can-nabis for treatment of neuropathic pain. Additionally, some researchers believe there are too many unan-swered questions about long-term consequences of smoked or inhaled cannabis to support the conclusion that the therapy is safe.
A July 2015 study published in the Journal of Pain, was the first ran-domized controlled trial of inhaled cannabis for diabetic neuropathy pain. Results showed that inhaled cannabis can blunt the pain of dia-betic neuropathy without seriously impairing cognitive function, how-ever there was a dose-dependent increase in euphoria.
Medical cannabis can be adminis-tered using a variety of methods, including liquid tinctures, vapor-izing or smoking dried buds, eating cannabis edibles, taking capsules, using lozenges, dermal patches or oral/dermal sprays. Synthetic canna-binoids are available as prescription drugs in some countries; examples include: dronabinol and nabilone.
The active ingredients in Cannabis sativa include the main psychoac-tive cannabinoid, delta9-THC, the non-psychoactive cannabidiol (CBD), and others. Medical-use can-nabinoids have been on the market for decades, starting in 1985 when the US Federal Drug Administration approved a purified THC prepara-tion for the treatment of nausea. Most cannabinoid-based therapies are approved to treat cancer- or HIV-related anorexia and nausea, but they are also prescribed off-label for pain. The only cannabinoid ap-proved specially for pain is nabixi-mols, a standardized plant extract containing THC and CBD marketed in Canada for pain in people with multiple sclerosis (MS). In other countries, nabiximols is approved for MS-related spasticity, but not pain. That may change, as nabixi-mols is now progressing through a Phase 3 trial in the US for cancer pain.
Visit the FPN Media Center on our website for a recording of our May 3, 2016 webinar: The Use of Cannabis for Treating Neu-ropathic Pain. This recording is available exclusively to premium members like you.
MEDICAL MARIJUANA (CONTINUED FROM PAGE 1)
CLINICAL TRIALS
Study of Sulfasalazine in Treating Painful Neuropathy NCT01667029
The investigators hypothesize that sulfasalazine, an FDA-approved medication for rheumatoid arthritis and ulcerative colitis, may be beneficial in neuropathic pain con-ditions. In this study, the investigators will evaluate whether sulfasalazine improves pain due to painful peripheral neuropathy.
Sponsor Massachusetts General Hospital
Location Boston, MA
The efficacy and Safety of Clonidine Hydrochloride Topical Gel vs Clonidine Hydrochloride Gel Comparator to Treat Painful Diabetic Neuropathy NCT02643251
The study will include three phases: Screening phase, Treatment Phase and Follow-up Phase. Subjects who qualify to participate will apply study drug to their feet three times daily and will record their daily pain scores using an interactive voice response system during the Treatment Phase for 12 weeks. Approximately 100 adult subjects will be randomized to receive Clonidine Gel or Clonidine Gel Comparator.
Sponsor BioDelivery Sciences International
Location AZ, CA, FL, HI, ID, IL, ME, MO, NC, OH, SC, TN, TX, UT
A Pilot Study of Acupuncture for Chemotherapy-Induced Peripheral Neuropathy in Breast Cancer Patients This study is being done to evaluate the potential benefits of using acupuncture to reduce symptoms of tingling, burning, numbness and pain in the hands and feet of women with peripheral neuropathy after completion of chemotherapy for breast cancer.
Sponsor Dana-Farber Cancer Institute
VISIT WWW.CLINICALTRIALS.GOV FOR CONTACT INFORMATION FOR EACH SITE PAGE 3
APPROVED FOR A APPROVED SEVERE /CHRONIC/ SPECIFICALLY INTRACTABLE PAIN FOR OR DEBILITATING NEUROPATHY CONDITIONALASKA n ARIZONA n CALIFORNIA n COLORADO n CONNECTICUT DELAWARE n WASHINGTON DC n HAWAII ILLINOIS CIDPMAINE n MARYLAND n MASSACHUSETTS n MICHIGAN n MINNESOTA n MONTANA n Painful peripheral neuropathyNEVADA n NEW HAMPSHIRE n NEW JERSEY NEW MEXICO n Painful peripheral neuropathyNEW YORK NeuropathiesOREGON n RHODE ISLAND n VERMONT n WASHINGTON n
The following states have approved the medical use of cannabis. Indicated are those states where its use has been approved for chronic pain conditions that might make it available to peripheral neuropathy patients.
Four states have legislation that specifically define some kind of neuropathy as an approved condition. There are additional states with legislation pending that
specifically include peripheral neuropathy in their list of approved conditions for medical cannabis.
The Foundation for Peripheral Neu-ropathy is pleased to welcome a new member to our Board of Directors, Lou Mazawey.
Lou has practiced law his entire career with Groom Law Group, chartered in Washington DC., Groom is the largest employee benefit law specialty firm in the country and Lou has more than 40
years of experience with the firm, working on a wide variety of matters related to the tax aspects of employee benefits—including pension, 401k and health and insurance plans—for Fortune 200, tax-exempt, institutional and state and local governmental clients.
Lou grew up in Northern New Jersey and graduated from New York University before attending law school. He con-tinues to be involved with NYU—including participation on the Steering Committee to establish a NYU-DC campus in Washington DC. Lou graduated from Georgetown Univer-sity Law Center in Washington DC in 1974. He taught on the adjunct faculty there for five years in his field of practice and is an active alumnus.
In 2003, Lou was first affected with PN (a relatively rare au-toimmune variety associated with anti-MAG or “monoclonal gammothapy of undetermined significance”). Lou was intro-duced to the Foundation by his doctor and also a Foundation board member, Dr. David Cornblath, who has helped Lou manage his illness for many years. Lou is currently funding a Research Fellowship focusing on PN patients with anti-MAG with a goal of developing more information on effective treatment strategies.
BOARDMEMBER
SPOTLIGHT
Pain, especially chronic pain, is an emotional condition as well as a physical sensation. It is a complex experience that affects thought, mood, and behavior and can lead to isola-tion, immobility, and drug dependence.
In those ways, pain resembles depression, and the relationship is intimate. Pain is de-pressing, and depression causes and inten-sifies pain. People with chronic pain have three times the average risk of develop-ing psychiatric symptoms—usually mood or anxiety disorders—and depressed pa-tients have three times the average risk of developing chronic pain. Dr. Scott Berman, author of Coping with Peripheral Neu-ropathy, notes that there is a strong over-lap between neuropathy pain, anxiety, and depression. Each of the three can raise the risk for having the other two.
A recent study at Stanford asked whether a patient’s depression or anger was caused by his or her inability to do physical things or is it perhaps because pain can limit so-cial relationships by taking the patient away from things that are meaningful to them. The study showed that the effects of chron-ic pain on social relationships can be a key trigger of depression and anger, even more so than the limits that pain can place on physical activity. If dancing is the primary source of a patient’s social interactions and they can no longer participate it can be an equal or greater cause of depression.
Dr. Jennifer Martin, a psychologist special-izing in treating patients with chronic pain developed what she calls the “Seven Psycho-logical Stages of Chronic Pain and Illness.” She emphasizes that these stages are not linear. Many patients move around them as they learn to live with their chronic pain.
1. Denial: A state of shock or refusal that can be dangerous if it causes a person to ne-glect taking the treatment steps they need.
2. Pleading, Bargaining & Desperation: This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness and pain go away—or anything that could give us some semblance of the life we once had.
3. Anger: After we conclude that our plead-ing and bargaining is not going to change the diagnosis, anger sets in. Anger is often felt later on when the illness and pain pro-gresses, or holds us back from doing the things we would like.
4. Anxiety and Depression: Feelings of emptiness and grief appear at a very deep level. It is the appropriate response to a loss or a life-altering situation.
5. Loss of Self and Confusion: Having chronic pain or illness may mean giving up some key aspect of what made us who we were.
6. Re-evaluation of Life, Roles and Goals: Having a chronic condition often means giving up a lot. We are forced to re-evaluate our goals and futures.
7. Acceptance: This stage is about accept-ing the reality of your situation and recog-nizing that this new reality is permanent.
To get symptoms of pain and depression under control, you may need separate treat-ment for each condition. However, some treatments may help with both:
• Antidepressant medications may relieve both pain and depression because of shared chemical messengers in the brain.
• Talk therapy, also called psychological counseling (psychotherapy), can be ef-fective in treating both conditions.
• Stress-reduction techniques, physical activity, exercise, meditation, journaling, learning coping skills and other strategies also may help.
• Pain rehabilitation programs typically provide a team approach to treatment, including medical and psychiatric as-pects.
The Foundation for Peripheral Neuropathy also encourages people living with periph-eral neuropathy either as patients, family or caregivers to find a local support group. Members of support groups often share ex-periences and advice. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. The Foundation for Pe-ripheral Neuropathy maintains a list of sup-port groups across the country. Check our website or call us to find a support group near you.
Source: Dr. Jennifer Martin, The 7 Psychological Stages of Chronic Pain, Pain News Network, September 2015
Emotional Health
and the Chronic Pain of PN
n Persistent sad, anxious or “empty” mood
n Feelings of hopelessness, pessimism
n Feelings of guilt, worthlessness, helplessness
n Loss of interest or pleasure in hobbies and activities, including sex
n Decreased energy, fatigue, feeling “slowed down”
n Difficulty concentrating, remembering, making decisions
n Insomnia, early-morning awakening, or oversleeping
n Low appetite and weight loss or overeating and weight gain
n Thoughts of death or suicide, suicide attempts
n Restlessness, irritability
n Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders and pain for which no other cause can be diagnosed.
The Anxiety and Depression Association of America lists these possible symptoms of depression:
Are you in crisis?—Seek help as soon as possible by calling the National Suicide Prevention Lifeline at
1-800-273-TALK (8255)
PAGE 4
2015 DONOR LIST
Visionary Circle$50,000 & ABOVE
Jack & Goldie Wolfe Miller Family Foundation
Miller, Jack & Goldie WolfeBristol-Myers SquibbTNA
Ambassador Circle$25,000–$49,999
The J. O. Larson Trust
Achievement Circle$10,000–$24,999
The Perry Family Foundation
Champion Circle$5,000–$9,999
Bramel, RandyChleck Family FoundationDARA BioSciencesFriend, Howard & Loren
Goldman, Peggy J.Murdy FoundationWilkins, Jr. , Howard &
Rhonda
Innovator Circle$2,500–$4,999
Baxalta US IncClear Voice ResearchEveryday Hero
$500–$999Baumgartner, Donald & Donna
Berman, LoisBuckley, Joseph & MaureenCard, GarrisonChoremi, BarbaraConroy, Diana & JimCrane, MargaretDJ McManus Foundation, Inc.Filler, Robert & DianeGillette, DavidGordon, JohnGroves, RayHammond, MaryHerlin, Nancy & LouisJanklow FoundationLazarus, Steve & ArleneMarion, MichaelMcDougall, MargaretMcEvoy, NormaMcGowan, KellyMetz, David & BetseyMico, StephenMoos, J. CliffordNew Hampshire Charitable Foundation
Peter & Lynn Tishman Fund, Inc.
Pollack, YvonneReese Family Charitable Foundation
Rubel, LawrenceSedey, Annette Siegrist, BettySimon, StuartStubblefield, Fred & NancyThe Castleman Family Foundation
The Shaw Family Charitable Foundation
Tomezsko, Ed & JeanTrotter, JohnWeaver, SylviaWitteman, GaryWright, Craig
<$500Aamot, JanelleAas-Eng, TorAbbott, EileenAbels, MarkAbrams, JohnAceves, JoanAcosta, TeresaAdams, Carol & PaulAdams, Lynn & PatriciaAdams, RobertAho, MonicaAiello, JackAlberti, JeanAlberti, John & MarilynAlderslade, PhilAldrich, Vickie & DonaldAlexander, NancyAlexopoulos, SpyroAlig, JerryAlker, MariaAllan, IanAllen, Ann & NedAllen, BettyAllen, EmmaAllen, ParkAllen, TerriAllendorf, Bernard & SandraAllmain, StevenAllsteadt, ThomasAlspach, Philip & LorettaAltaffer, DabneyAltman, SallyAmica Companies FoundationAmira, SidAmodeo, TheresaAmos, JamesAnasson, Mary KostasAnderson, BeverlyAnderson, CharlesAnderson, Jane & BobAnderson, ShirleyAndrew, Hugh & DoloresAnklin, CarolAnn Matasy, Edward & MaryAnne Hirschel & Alice Richard AnonymousAnson, MichelleAntoniou, IreneAnttila, JoannAppelgate, RichardAram, James & MaryArce-Foote, NancyArchuleta, AndreaArlom, JohnArmm, EdwardArmstrong, FrederickArmstrong, JimArmstrong, RodArnold, Karen & RonArnott, ReneeAronstam, Karen & ElliottAsh, NacyAtkins, MichaelAukema, William & GloriaAusubel, JoanBabb, VictorBachara, MichaelBachara, PatriciaBaer, PaulBagatelos, Peter & AnneBailey, MarkBain, John & MaryBaird, CaroleBaker, Dr. Bryan
Baker, MaryBaker, Mary & DavidBaker, RobertBallard, John & MarilynBaltuch, JayBanken, MonicaBarbara Ross & Howard Whitman
Barbara Snyder & Elaine Petznik
Barber, WillardBarber, William & VirginiaBarber, X. TheodoreBardon, Thomas & FrancesBarker, AngelaBarker, DorothyBarker, Lex & ShelleneBarkofsky, DonaldBarnes, KimberlyBarnett, Tom & SuzanneBarney, Sara & RichardBarnhart, EllenBarnhart, James & LucyBarns, MarthaBaro, SherriBarr, AnneBarr, SteveBarrett, LynnBarrett, Susan (S.K.)Barrette, WilliamBartlett, KayBartolai, Clem & NinaBarton, BettyBartsch, Robert & LuannBartul, JohnBarz, SandraBashaw, Mary & VernonBasile, Don & MariaBasquin, Jennifer & PaulBass, Laurita & GlenBates, Nelson & MaxineBauer, BettyBauer, Ivan E.Baumgart, Howard D.Baumgartner, Catherine & Sidney
Baumgartner, GaryBauserman, AnnaBaylis, FrancisBaytos, Lawrence M. & CarolBeak, JohnBeard, JamesBeaston, Diane J.Beaudett, Stephanie & MalBeaudoin, JohnBechtel, Doris & ThomasBechtel, MaryannBeck, PaulBecker, Harry & LorraineBeckman, ChanieBeckman, LisaBeeny, RoseBegleiter, AlvinBeilfuss, ScottBell, Albert & PatriciaBell, JeanenneBell, Wayne & JoanBelville, MaryBender, CynthiaBender, Ozzie & LilianeBengtsson, DennisBennick, PatriciaBenoy, RobinBentley, Donald WayneBentley, Shelia & BillyBenton, Barbara & HaroldBergen Hilles, VikkiBerger, PeggyBergland, Steven & GraceBerk, Lee & SusanBerkowitz, BernardBerkowitz, Leonard & DoloresBerman, GlennBerman, ScottBerne, WilliamBernhjelm, BruceBernstein, Howard & HarrietBerry, EdwinBershefski, Paul & PatriciaBest, EstelleBeth, KennethBeverly Abraham & Chris Olander
Bevilacqua, MildredBeyer, Paul & ElaineBieda, John & JeannetteBigley, DorothyBilodeau, GerardBinhammer, Charlotte L.Bird, MiriamBirke, KarenBirkner, Patricia & EugeneBiscontine, LindaBishop, Donald & JoBishop, Donald & NancyBisig, Elizabeth & ThomasBlack, Frieda & JimBlack, NormanBlack, ShirleyBlair, WayneBlaise, MichaelBlanchard, WilliamBlanda, JamesBlank, Thomas & CarolBlanken, RogerBlenco, David & Mary KayBliss, John & TamaraBlitz, WilliamBlitzko, JosephBloch, PatriciaBloch, RamonBlock, YvonneBlosat, Dorothy
Blozis, GeorgeBlumenfeld, Stan & BarbarBodami, DominickBodley, Rosemary & RaymondBoek, Joseph & DagmarBoettcher, VirginiaBogas, SusanBogorad, LeonardBojovic, MirkoBokenfohr, KarenBolfing, DavidBolotin, RichardBomgardner, Dorothy & FrankBonamarte, Joseph & JillBond, LourdesBordovsky, RobertBoris, HowardBorok, Frances & BenBorsting, Jack & PeggyBosse, RobertBoucher, David & DiannaBoughner, Barry & EileenBoutselis, DeborahBowman, CharlesBowman, CharlesBoyer, Janis L.Boyes, Gene & MaureenBozko, GeorgeBracken, RobertaBraddock, ZoeBradfute, AnnamarieBradley , Harry A. & MaryBranin, FrancisBrauer, JaniceBraveletsBravo, AmyBreese, RobertBrehm, JaniceBriggs, BruceBright, RichardBrinkley, MargaretBrinkmann, ShirleyBroderick/Kalush, Daniel & Margaret
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ButtonwoodButurovic, LjubomirButz, SharonByleen, ElizabethByrnes, Raymond & AnnmarieCadem, LuanneCahill, JoanneCain, ChristyCain, DonnaCalafato, Guy & MargaretCall, William (Ray)Callicutt, DonaldCameron, GeorgeCampbell, DavidCampbell, Diana & LouisCampbell, HarryCampbell, JohnCampbell, Patricia & PaulCandler, William & JudyCanelakes, BonnieCanfield, ThomasCaraway, Charlie & KenCardi, AntonioCarey, OmerCarley, FayeCarlton, AnnCarmi, GioraCarney, ShirleyCaroompas, Maryann & WalterCarpenter, RobertCarr, Craig & GloriaCarr, RobertCarr, Robert & JoyceCarroll, Thomas & PatriciaCarter, Wayne & DonnaCarter, WillieCartier, LorraineCartwright, M. DorseyCaruso, IdaCaserta, CindyCasper, Mark & Carol
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Conner, Harry & MarthaConnolly, Gerard & MarianConnor, JohnConrad, Michelle & KevinConway, GaryConway, Patsy AnnCook, Angela C.Cook, M.D., PatriciaCook, PatsyCooley, TommyCooper, ChristianCooper, Gail & JohnCooper, William & SadieCorbin, John & ElizabethCordray, LucilleCormack , George & Mary JoCornell, AntoinetteCornellier, Donald & JoanCorr, BrianCosta, AnnCostantino, PaulCoste, JuergenCoulter, Mary Jo & EdmundCoverstone, NancyCovert, SuzanneCovington, Lisa & RonCoward, Janice & MichaelCowles, Juanita & RogerCox, Arlan & DebbieCox, MerrilyCoyle, Marilyn SukelCozza, BarbaraCraig, MonteCrain, Richard & SusieCralle, Maury & ChristineCrane, FlorenceCravalho, Ernest & RuthCravalho, Larry & KathieCrescenzo, PaulCrevasse, BruceCriley, Norma & BruceCritides, SophieCrofts, MaryCronig, Stanley & CynthiaCrowe, MarkCrowley, SeanCummins, FrankCunningham, DonnaCunningham, John & JudithCurci, John L.Currie, Annette K.Curry, Robert
Curtis, JimCurts, RichardCushing, Wayne & WandaDailey, CarolDailey, CurtisDailey, JuanitaDaitzman, MylesDale, JohnD’Amario, LouisDaniel Paul Riggle Liv TrDaniels, Helen & JohnDanielski, James & MaryDaoust, Donald & BarbaraDavid & Robbin Ballegeer LV Trust
David Wolcott & Caroline Leising
Davis, MarjorieDavis, Patricia & RichDavis, ThomasDaw, May & CarlDay, CaroleeDay, Michael & JoanDean, LydiaDeanda, KathleenDeangelis, Virginia & MichaelDeblieck, Scott & JaneDeCicco, Jodi & SalvatoreDecker, RonaldDeCosentine, VeldaDedoncker, Sheryl L.DeGidio, CharleneDehart, Frances R.DeHoff, CarolynDeitz, Brian & GretchenDelaney, Ann H.Delaney, Dr. Arthur A.Dell, AlidaDellwo, RobertDelMonte, GeorgeDelwiche, DeborahDeNicola, AnthonyDenike, BruceDenning, KyleDent, RobertDerfler, DonnaDeSimone, Vincent & SusanDevantier, Robert & SusanDeWald, CarolynDewitt, Jean & BobbyDeWoody, G. MichaelDewsnap, Catherine & TerenceDi Cienzo, Mary L.Di Giorgio, Teresa A.Dickerson, RobertDickin, JohnDicosola, GordonDierker, RichardDietrich, RichardDietrich, SharonDillon, DonnaDimiceli, ElaineDison, RonaldDissinger, EricaDivney, LarryDixon, CarolDobkin, RonaldDobler, VictoriaDodson, Charles & LynnDodson, Vicki & LeonDoerksen, LaurelDohe, JoAnnDoherty, Barbara & RichardDolcimascolo, VictoriaDolloff, Shirley Ann & Robert Dombrowsky, TimDonaldson, Julie & RobertDonnelly, JoanDonohue, CatherineDonovan, SandraDooley, EmilyDoris & Martin Hoffman Family Foundation
Doroski, ShirleyDotson, LeanneDouberley, PeggyDougherty, DonnageneDowdy, AliceDowney, Donald & FrancesDoyle, Louise & ChristopherDrachsler, David & SusanDraeger, KristinDressler, EllenDressler, RobertDrewek, NancyDreyer, Judy & JosephDrinks, SoniaDrobbin, Paul & ShellyDuerr, Col Hans & Barbara Duerre, Dennis & VernaDuffy, ElizabethDuffy, HughDuffy, PatrickDufresne, MarlenaDunn, AlineDunsmore, John & NancyDuyn, Jerry & CarlDver, SaulDwan, Thomas & BarbaraDykers, Andrew & NancyDyrud, JohnDzubay, DonnaEagen, Doris M.Eastis, DavidEck, DonaldEckert, Joseph & NancyEdson, Mary Ellen & JamesEdward Schnurr & Joanne Richardson
Edwards, BruceEdwards, JarrellEdwards, WalterEggers, Keith
Eggert, Anneliese & W.F.Ehrhardt, JohnEick, Harry A.Eighmy, Thomas H. & Beverly B.
Einfeldt, Michael & RuthEisel, AllanEisel, WilliamEisen, JonathanEisenerg , Dr. Selig & JoannElizabeth Peterson & Kerstin Halverson
Ellis, GlennaElmer, VirginiaElmore, WilliamEnders, RobertEnglish, HowardEnglish, KarenEngstrom, MaryEpranian, ArdieEpstein, GertrudeEpstein, Howard & SheilaErb, Barbara JolitzErdman, MichaelErickson, Donald & MargueriteErickson, LarryErnst, AnnErnst, RobertErtag, WilliamEshbaugh, BarbaraEstey, PaulineEtri, Benjamin & BarbaraEubank, Margaret A.Evans, ElizabethEvans, MaryEverson, Ronald & DorisEx, HowardEzell, BillyFabian, Lillian & StephenFailing, SusanFair, KayFalco, JerryFallgren, JohnFandel, Patty & WilliamFarmers Livestock Market, Inc.Farrell, Gillian & CharlesFarris, MartinFattorini, James & VirginiaFausak, AnnFayonsky, JamesFeinberg, RichardFelcher, EllenFeldman, DavidFelton, Janet & BillFerch, NeilFerguson, Shirley & JamesFiascone, Arthur G. & ConcettaFichera, VirginiaFielding, Gary & HarrietFields, DavidFilderman, RobertFine, MD,FAAN, Edward J.Fink, PatriciaFinks, DorothyFinney, Robert Dean & Margaret
Finney, Sherry & BruceFischer, DebraFishman, SheilaFitzgerald, EricFitzgerald, PatriciaFitzpatrick, Barney & NickiFleegal, Robert & EvelynFleharty, DonFleming, ArchFletcher, AnneFletcher, RogerFlewelling, JodiFlick, PeterFloyd, StephanieFlynn, JoyceFlynn, KathleenFord, BonnieForney, David & TracyForney, Robert & NeldaForsyth Jr. , Alfred & KayForsythe, Helen & WalterFountain, ReneeFouraker, MarkFowler, Joseph & MoninaFox, Michael & MargueriteFoxworth, Michael & LindaFrahm, SuzanneFrancis, SteveFrank, Clarence & MaryFrank, Gordon & MarilynFrankston, Fred & BarbaraFrasca, AlisonFreedberg, Avram & RhodaFrench, CarolynFridella, CosmoFriedman, BobFriedman, DavidFriedman, MaryannFriedman, MitchellFritz, Ronald & SueFritzel, RogerFrock , J. Daniel & JoanneFulbright, MarilynFulcomer, James & JoanFuller, Robert & JeanneFulmer, DianeFuqua, NellFusaro, MarionGaddis, JuneGalesi, BarbaraGallagher, JosephGallagher, WilliamGallet, Marilyn & ReneGalton, BethGalvin, Jean & JosephGandy, PatriciaGano, Dean
Gantley, MerryGantner, LoringGardner, Jacquelene & Willis Dean
Gardner, LauraGarrett, SabraeGartz, LindaGarwin, LoisGaskill, J PaulGaskin, Paul & PatriciaGastecki, Greg & LoriGates, ArleneGates, DebbieGates, Kathleen & PeterGates, SharonGatliff, Maureen & SteveGatti, Fontaine DeannaGauck, CharlesGauvin, Robert & ClaudetteGawron, GloriaGaylord, JohnGebhardt, RaymondGenheimer, NancyGentry, Donald G.George, Robert & JanetGerngross, FrancesGestel, Bernard & MildredGetman, Gerry & KathleenGiampolo, AnthonyGibson, Dixie & GaryGilbert, NormaGilbertson, KurtGill, Mary & JamesGillespie, F. LaVerneGillespie, Joyce & RobertGilmore, AltonGilmore, JohnGilmore, MarvinGladstone, RobertGlander, Karl & EvelyneGlaser, Howard & CynthiaGlaser, PhyllisGlass, ShannonGlater, Michelle & MarkGlick, ThomasGlomski, LaurenGloria Horlick & Michael Marasco
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Goodman, Robert M.Goodsell, Susan & GregoryGordon, MarkGorman, Nannette & TomGorson, KennethGott, MicheleGoursky, WilliamGraber, Diane & MartinGraboys, George & LoisGragg, GaryGraham, Bonnie & DonaldGraham, MarilynGraham, Paul & JoanGrange, John & AnnaGrant, David & NancyGrant, JudithGrant, PatriciaGrants Pass PN Support GroupGrauer, DeniseGray, ThomasGreeley, MaryGreen, DonaldGreen, MichaelGreen, PhilipGreen, WilliamGreenberg, RobertGreene, Phyllis & MichaelGreene, WilliamGreensmith, AnnGreenstein, ArnoldGreenway, DoloresGregg, John P.Gregorio, RoseGregory Johnson & Dianna Turk
Gregory, P.A., WilliamGrier, MargaretGriffin, CarlyleGriffin, JohnGriffith, RichardGrigg, VirginiaGriss, BarbGrissom, JamesGriswold, James A.Groboske, DennisGros, SoniaGrosch, PhyllisGross, Ralph & JoanneGrossmann, AtinaGruber, Arnold & EllenGruber, Thomas & KathleenGrymonprez, Tim & ShellyGu, ZhengGuarnera, Kathleen & JamesGuberman, StevenGurewitz, Gail & JerryGustafson, BillGustafson, James
Gutter, FrancesGW Smith & Pat Pepper Gwynn, FrancisGydesen, William & LoisGyurisin, Charles & SueHaffey, AnitaHafner, J. & HelenHagedoorn, KathleenHahn, Janet & DarilHahn, MarthaHaidorfer, AntonHairston, John & KathyHale, Ben & BettyHall, DougHall, KarenHall, SamuelHalper, AdamHaltmeyer, Kathleen M.Ham, DavidHamill, DollyHamilton, GretaHamilton, MikeHamilton, RobertHammarlund, M.Haness, MarkHansell, LisaHansen, DavidHansen, EdwinHansen, TaniaHanson, ArthurHanson, DonnaHanson, Phil & MarshaHapanowich, EvaHardenburg, David & JayHardenburg, Pauline & JohnHardin, Ellen & RobertHarding, Robert & LaurieHardwick, ElizabethHardy, RobertHare, GraydonHaren, Deborah & DonHargreaves, Hilary & FredericHarless, MelanieHarmer, ClaraHarper, JosephHarquail, RaymondHarrington, DixieHarris, IrwinHarris, MyraHarrison, DeborahHarrison, Robert & SylviaHarrison, WilliamHarry Schoenberg & Dorothy Breen
Harry, EdwardHart, BerneiceHart, PatrickHartley, CaraHartlieb, DorothyHartnett, RosemarieHarty, WilliamHarvison, DannyHauber, Wayne & CynthiaHaugland, SusanHauser, PatriciaHausman, JillHawes, Colleen & WilliamHawkins, Judith & AaronHayes, Kristina & BernardHayes, TomHaynes, RickHaywood, JoanneHazelwood, BradHead, CharlesHead, MerlynHealy, MartinHealy, PatriciaHebler, June & JohnHeck, SallyHecktman, Melvin & JudyHeight, Robert & JoyceHeim, Daniel & BriannaHeim, RobertHeineman, ClaraHeintz, KarenHeisinger, William & KatherineHelin, LassieHelman, LucilleHenderson, Carolyn & JamesHendrickson TrailerHendry, SharonHenness, Alan & SamanthaHennessy, KevinHenriksen, KathrynHensley, Linda B.Hensley, PatrickHenson, RobertHerman, Myron ShaelHerman, Ruth & C H Hermanson, TerryHerndon, William & LynneHerres, MichaelHerrgesell, RonHerrington, JamesHersh, BrianHershman, RayHerzberg, JerryHesselberg, Carmen & Jeanette
Karp, Phyllis & BasilKarpp, Robert & LeslieKasper, RobertKastel, MarilynKathe, BarbaraKatz, Ellis & BarbaraKatz, Marjorie & StevenKatz, RoslynKaufman, KurtKaye, JohnKeane, CathyKeith, VirginiaKeller, SidneyKelley, EdwardKellie, Marilyn & HowardKelling, Sandra & DaleKelly, BeatriceKelly, ElsaKelly, StephanieKelso, RichardKenison, HowardKennedy, ConnieKennedy, ConnieKennedy, JohnKenyon, Robert & NancyKeough, RosemaryKerkhoff, PaulKern, Kathleen A. & EdwardKerr, Judy C.Kerska, Donald & MaryKessel , Dr. Stanley & AnitaKester, Philip & MarilynKetel, M.D., W. BruceKetonen, JanKeyton, William & NancyKhodr, RamiKilty, Kurt & JanineKim, Eva A.Kincaid, Welinda & LarryKing, GeorgetteKing, RickKinimaka, JamesKipp, HerbertKirby, Frank & ClaudiaKirchner, Dennis & LarkKirkendall, ElizabethKirkham, KenKiss, Joyce & RaymondKittman, DeanKlahs, EleanorKlehm, PaulKlein, MaryKleinberg, MichaelKliever, Edward & MargaretKline, Michael & RebeccaKlitzman, Steven & JustineKlose, Gary & BrendaKneisley-White, JaniceKnepper/Montanari, Dennis & Susan
Knickmeyer, LisaKnisely, RobertKnoke, MaryKnowles, SteveKoch, LaVerne & DonaldKoch, PatKochelek, MatthewKoehler, BarbaraKoehler, John (Jack)Koehring, John & ElizabethKoffer, Agnes & RobertKohajda, TerreKohler-Lovejoy, KimKolb, Allen & JoannKoops, TerrilKope, CarolKorb, WilmaKordower, Theodore & SoniaKossler, JamesKoster, BobKoster, John J.Kovit, Leonard & AnneKozik, DouglasKranz, Alan Z.Krause, RandyKreimeyer, RoxaKrell, DianeKresky, MichaelKrienke, Albert & JaneKristan, Ronald & ConcettaKrizka, LeeKronberger, MaryKrueger, HerbertKrueger, SherylKrupnick, MarilynKucharas, LynnKues, IrvinKulbacki, TedKunz, GloriaKupferman, AlbertKusheba, JoyceKvaal, StevenKvalstad, RobertKwartler, PearlLadley, Donald & UndineLage, Jerry & JoanLaing, KennethLampner, WendyLamson, MarthaLancaster, LindaLane, Parley & LalaLange, HarrietLangenberg, DonaldLangway, ChesterLapera, RichardLarizadeh, LeeLarson, Stephen C. & Joann L.Laskoff, RobertLatimer, JonathanLaughon, MegLaux, Mary & HarveyLavinghouse, Richard & Randy
Lawton, Ev & RayLe Seure, LaurenceLeaman, NadineLeanWerksLearn, Scott & TeresaLeavenworth TrustLebouton, Evaline & RobertLedbetter, MaryLee, DennisLee, DonaleeLee, Harold & PhyllisLee, John & KayeLee, SueLeegwater, JohnLeffler, Patricia & BartLefkowitz, JoelLefsetz, MurielLehmann, William L.Leidich, VirginiaLemanek, Robert
Lemonds, Joann & PaulLentz, Lisa
Leonard, DianeLepkowski, Cathy & KennethLepsch, RonaldLerner, ElaineLetson, RobertLettieri, JohnLev, AharonLevangie, PamelaLeverence, Donald & AdelinaLevine , Lesley S. & WilliamLevitas, GloriaLewandowski, ThomasLewis, EdwardLewis, Robert & RoxieLey, RolandLiberman, Barnet & SusanLieberman, LeilaLight, CindyLincoln, JohnLinde, MaryLindley, VanessaLindquist, RobertLininger, Louise & JimLinton, Judith & JeffLippard, StephenLisle, AndyLock, Steve & PamLoeb, Gail & BobLoeffler, Susan & VincentLofdahl, Cedric & MarciaLoflin, DonnaLogan, KatherineLogel, Kimberly & KevinLohr, KerryLohrenz, BradleyLong, BillLong, MalcolmLongarzo, PeterLoobey, Thomas & DeborahLoper, MerlynLorenz, Walter & NancyLoris, Kathy & JosephLorraine, Walter T.Lotz, Robert & SusanLou Bruno, Fred & MaryLowder, HarriettLowe, ShariLowell, Vaughn & MargaretLowenstein, AmyLowman, LindaLowry, SimonLTEN Board, Advisory Council, Staff
Lu Mathis , Charles & MaryLubov, SusanLucas, Joy & TimLucas, Thomas V.Lucchio, PhilipLudwig, EdLuebke, ArthurLuhn, JamesLund, William & L.N.Lunde, JohnLundgren, Eric & RosalieLundin, Marlene & FloydLundstrom, JohnLuskin, LynnLute, Daniel & EllaLutkenhaus, BeverlyLyman, DonnaLynch, JamesLynn, RosalieLyons, BetteLyons, GeorgeLyons, MarybethLytle, RichardMaag, Ernest & JaniceMabry, MelissaMaccaroni, Michael & Meloday
Macfarlane, Marilyn B.Macioci, Raymond & CarolMackowski, RobertMacneil, FaithMacrorie, Neil & SusanMadilia, HeatherMadison, GraceMadsen, William Eli Mahar, Robert & MarjorieMailman, MatthewMajor, Jean & DonnaMalchow, WayneMalick, GailMallette, BeverlyMandelbaum, Jonna-Lynn K.Mangino, BillMann, KenMann, RichardManning, Beth & JerryManning, DonaldManning, Martha & RobertManning, MaryannManning, StephenMaples, Ruth & PeterMarch, MildredMarcum, James & CarolMarcus, Diana & MarvinMarcus, MitchellMarcus, StevenMargaret W. Duckworth TrustMariner, MargaretMarrelli, CarlMarsh, MargueriteMarshall, Craig & EvaMartha & Robert Gessner Trust
Martin, Donald & LillianMartin, DougMartin, LennyMartin, Lois & MyronMartin, Thomas & CynthiaMartinez, GloriaMartinez, MarilynMary Lee & Merle Porter Mary Lee & William Waggoner
Mary Louise Willey Revocable Trust
Mastrianni, Angela & LouisMatheson, MarciaMatheson, RichardMattey, Ronald & RondaMatthews, Joan SooyMattice, MargeMattison, Robert & JanetMaurer, MaryMawson, StenMaxwell, LindaMayer, George R.Maynard, HowardMayne, ClifMazelis, FredMazour, Adrian & ConnieMc Gagin, GeorgeanneMcAlinden, GerardMcAlpine, Nick McAvoy, DanielleMcBeath, JohnMcCarthy, SandraMcCarty, James & BettyMcClure, Donna & DaleMcClure, JamesMcComber, NanMcCormick, JanetMcCracken, SharonMcCrory, DesMcCulloch, NathalieMcCullum, ThomasMcCurdy, Willie
McCurley, MaryMcCurry, MargaretMcDade, MikeMcDonald, AlanMcElroy, MaurineMcGee, WilliamMcGowan, JamesMcGrory, ThomasMcHugh, SusanMcIntee, Francis & JoanneMcIntosh, LindaMcKay, LindaMckeever, LindaMcKeever, PamMcKelvey, MaryMcKinsey & Company, Inc. McKown, LindaMcLaughlin, CarolMcLaughlin, JenniferMcLaughlin, JennyMcLaughlin, RoseMcleod, MorrisMcmasters, RosalieMcmeekin, John M.McNamara, DorindaMcNeill, GaryMcNeill, JohnMcPhee, MaggieMcPherson, MarionMcShane, John & NancyMeadors, FrancisMeaney, John & MarnaMeans, Fred & HelenMeany, PhilMech, L. DavidMedders, EvelynMedsker, RobertMeehan, DianeMeier, MaydelleMein, PhillipMelchiorre, PhilipMeloon, PhilipMemeuse, KennethMerle, BruceMerrill, ElizabethMeservey, KristinaMetcalf, EricMetz, RobertMetz, Robert & SusanMeyer, FrancesMeyer, Vance & PatriciaMeyer-Oertel, Henry & Christine
Millar II, WilliamMiller, Beth & GaryMiller, GlennMiller, IreneMiller, JamesMiller, LenoreMiller, LeslieMiller, Marlene & RobertMiller, MarvinMiller, MatthewMiller, MildredMiller, N. Ernest & DorothyMiller, NoelleMiller, VictoriaMiller, W. Greg & RuthMiller, William & RuthMiller, Wilmer & BarbaraMills, JamesMineo, AlanMitchell, HarrisMitchell, JuneMitchell, LeeMitchell, Nancy & RobertMitchem, AlbertaMoafa, HamzaMoccio, JenniferMoersfelder, John & ShirleyMolek, LarryMoloney, Philip & GailMonck, Flora & HarryMongillo, SusanMonkhouse, Mark & JaneMontavon, MiriamMontuori, Anthony G. Moore, CharlesMoore, Gerald & MarshaMoore, James & DoloresMoore, Mike & ArlineMoore, Peter W.Moore, WilliamMoore, William & MarthaMopper, K. William & JoanMoran, Carolyn & TerenceMoran, MichaelMordkofsky, HalMoreschi, DanielMorgan, HowardMorgan, Jr., Henry CokeMorgan, MaryMorgan, Virginia & JimMorgan, WendyMoriarty, Patrick & EllenMorren, VolgaMorris, JamesMorris, MaryMorris, RuthMorrison, LloydMorrison, RalphMorrison, RichardMosa, Bruce & DebbieMoss, AnneMoss, Carl & MichelelMosston, Leora & RonnyMottola, JohnMoulton, VirginiaMoultrie, PatMowery, Jeffrey & LynneMowry, KarenMoyer, KathyMrdeza, ScottMugmon, Marc & EllenMuldoon, FlorenceMullen, David & LindaMuller, Arthur & MarcellaMulter, Thomas & MarianMunafo, RosalieMurphy, FelixMurphy, NorbertMurphy, RichardMurray, DeannaMurray, PatrickMurrey, FranMuth, MaryMutterperl, DonaldMuzyczka, EdwardMuzzall, LindaMyers, CarolMyers, WalterNaccarato, JuneNafziger, LolaNankin, RobertNaradowski, Ronald & JudithNarog, SusanNash, AldaNason, Jr., WillNau, Thomas Jr. & MarianNeedels, Foster R.Neering, EileenNegnewitzky, VardaNeil, Mary
Nellie/Antolini, Rys & Suzanne
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2015 DONOR LIST (CONTINUED)
“Paintracking is a self-study tool and approach for gaining mastery over your experience with pain…The process involves assessing the effects of what you are already doing, testing new approaches, and tweaking existing ones to bring continual improvement… [Paintracking] encourages people with chronic pain to treat each day as an experiment that can reveal valuable data for increasing control over how they feel.”
I was a bit skeptical, but approached it as a project to do! I was even excited to use my skills as an accountant on some graphs!
After some trial and error, I found categories and levels that worked for me. Three times a day I tracked the following:1. How many hours I slept.2. How well I slept.3. My mood.4. My stress level.5. Amount and type of medication taken.6. Pain level before medication.7. Pain level after medication.
8. Fatigue.9. Weather.10. Humidity.11. Amount of driving/housework
(using my hands).
I learned two things very quickly. First, stress DOES affect my pain level. I had read about it, now my graph gave me positive proof ! So now I’m working on reducing, even eliminating stress in my life. And two, I learned that the better I slept, the less pain I had in the morning. I adjusted my routine to do my errands and housework in the morning when I was feeling my best and could do so without pain medication!
Journaling also revealed the impact of the weather on how I feel; rainy or humid days cause me more pain than sunny, dry ones. So I plan my weeks based on the long range forecast. Grocery shopping, laundry, housework, etc. are best done when the weather is good and I have less pain. Relaxation, reading and research are saved for rainy days.
In February 2014, with my journals and graphs in hand, I had my first appointment at a pain clinic. My journaling was an invaluable tool that helped the doctor to efficiently define the best treatment plan for me. The plan includes when and how much of my pain medication to take and how to adjust it based on the kind of day planned, how good a night’s sleep I’ve had and how much pain I am experiencing.
My life with PN has taught me that everything takes time and effort, be it medication testing, journaling, or information gathering. I’ve stopped journaling for now, but I’m sure, when or if there is a change in my life, I will be breaking out my journals to track how I’m doing!
PAIN TRACKING (CONTINUED FROM PAGE 1)
9 2 N D I N A S E R I E S 9
Happiness and Health: 9 Choices That Unlock the Powerful connection Between the Two Things We Want MostPERIGEE, 2009
Happiness & Health unravels the mysteries of the mind/
body connection as it presents clinical, sci-entific, and anecdotal evidence that proves that the adoption of a set of simple behaviors known collectively as the model of health can biochemically enhance health and well-being. Rick Foster and Greg Hicks with Jen Seda, MD
Healing Diabetes: Comple-mentary Naturopathic and Allopathic Treatments CANADIAN COLLEGE OF NATUROPATHIC
MEDICINE PRESS, 2007
This book provides an in-depth and fully-documented study of the pathophysiology
of diabetes and the naturopathic medical care of diabetes. Ideal for high-risk individuals and patients looking for greater depth of under-standing than offered in ‘pop’ diabetes books. For the healthcare practitioner, “Healing Dia-betes” comes complete with well researched diagnostic and therapeutic protocols and case studies. Alexander McLellan, MD, Michael Friedman, MD
Medi Focus Guidebook: Peripheral Neuropathy Managing Pain Before It Manages You (2016)
Top pain specialist and physician Margaret A. Caudill spells out 10 steps that can
radically change the way you feel—both physically and emotionally when living with chronic pain. Dr. Caudill provides state-of-the-art information about the causes and treat-ment of pain. Margaret A. Caudill
The Numb Foot Book: How to Treat and Prevent Peripheral NeuropathyHALIFAX, NOVA SCOTIA: MEDPRESS, 2008
The latest information on medical treatment options, including oral and topical drugs and their side effects,
nutritional supplements, new treatments such as Laser and Infrared therapy. The best of the alternative and complementary treatments including Tai Chi, Acupunture and Natural Medicines. Practical advice on how to improve walking and balance problems. A look ahead at upcoming new treatment options. Alexander McLellan & Marc Spitz
Numb Toes and Aching Soles: Coping with Periph-eral Neuropathy (Numb Toes Series, V. 1) MEDPRESS 1999
Senneff illustrates the various treatments without judging them. This arms patients with
the information they need so they and their doctor—and not the doctor alone—can de-cide on what treatments to try. This is especially important for peripheral neuropathy because what works for a specific patient remains very much a trial-and-error proposition. John A Senneff
The Foundation for Peripheral Neuropathy does not endorse any treatments, medications, advice or products discussed in these publications. Special thanks to support group leaders Nancy Herlin of the Neuropathy Alliance of Texas and Bev Anderson of the Western Neuropathy Association for their input in compiling this list.
PAGE 7
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Accelerating a cure for peripheral neuropathies•
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Raising awareness of peripheral neuropathy
The information contained in this newsletter 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. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your con-dition. The best care can only be given by a qualified provider who knows you personally.
YOU CAN SEND US QUESTIONS OR FEEDBACK AT [email protected] OR CALL US AT 847-883-9942
The Foundation for Peripheral Neuropathy newsletter, FPN News is
published two times a year, Spring and Fall.
No Limits – Riding Across America People with chronic conditions,
like peripheral neuropathy and
other physical impairments, often
believe there are limits to what they
can do. Pain can be ever present
in their lives and their vitality for
living can diminish. But think about
this…even if you think you can’t
do something, maybe you really can! British adventurer, Dominic Gill, set out to find some
unique individuals who were willing to take on new challenges in spite of their limitations.
With an unusual tandem bike built with a recumbent front seat and secondary free-wheel
mechanism, Gill organized a 4,000 mile cross-country bike trip. The bike allows weak or
disabled individuals to tackle long distances. This unique journey was originally conceived
in 2006 when Gill met Ernie Greenwald
of Lompoc, CA, while on his first tandem
cycling expedition from Alaska to
Argentina. Greenwald was a 70-year
old with lymphocytic lymphoma who
wanted to bike across America. He was
filled with passion to live an adventurous life despite his physical condition. Anxious to
ride, Greenwald discovered that his cancer had spread and he was not going to be able to
participate.
Gill was forced to set out on a different adventure. After mapping out his journey
and breaking it down into 10 stages, Gill went out and found 10 new companions
to accompany him—all perfect strangers and all with significant physical disability:
newsletter, website or in press releases to tell the
story nationally.
All of your stories will be used as encouragement
for others. And your stories will join together to tell
an even bigger story—the story of PN. What it is.
How it affects you. The need for research and new
treatments. The need for a cure.
If you haven’t told us your story…we hope you will.
Pam Shlemon
Featured in this issue
FPN Profile | Ben Coconaugher
Page 1, 6
Research | News
Page 2
Clinical Trials
Page 3
Living Well | Tai Chi, Acupuncture
Page 4
Ask the Experts | Q & A
Page 5
A m e s s A g e f r o m t h e
e x e c u t i v e D i r e c to r
INSIDE• Research Registry
• Alternative Therapies
Dianne—ChiCago to ClevelanD
Some might say Dianne Jones is one of the lucky ones. Diagnosed with idiopathic peripheral
neuropathy 25 years ago, she experiences numbness and tingling but she has no pain. Her hands
and feet are numb; moving around is difficult. She loses her balance, bumps into things, her
gait is uneven. She is stiff and uncoordinated, and needs a railing to go up and down stairs. Her
hands get really cold—or really hot.
Active in her real estate business and in her church, Dianne enjoyed many of her tasks: typ-
ing, sewing and mending, serving communion. She especially liked typing and was quite good.
Now, she can’t type or thread a needle. It started getting worse about 10 years ago. She could
walk fast but not slow—she lost her balance, she stumbled. Her doctor even noticed
that she trailed her fingers along furniture to help her keep her balance—something
Dianne was doing without thinking.
To keep from falling, Dianne purchased a cane. Onlookers often
draw inaccurate conclusions when they see people fall; the
cane helps Dianne’s stability and sends the message to oth-
ers that she has physical limitations. Dianne volunteers
with the ‘Culture Bus’ that takes seniors with early
(CONTINuED ON PAGE 3)
(ContinueD on Page 6)
Green CMYK
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spring 2011
FPN NewsCMYK Match PMS382
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memory loss to cultural events. Using her cane
and struggling to walk, she is often seen as one
of the patients. Still she enjoys the outings and is
philosophical, “People need to do what they can.”
Dianne and her husband Doug have always
been active. They liked to bike but when
Dianne could no longer control her own
bike, they bought a tandem. They try to ride
20 miles every week and even participated
in a 300 mile race in Wisconsin.
PAGE 8
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BOARD OF DIRECTORSJack Miller CHAIRMAN
David R. Cornblath, MD Lou Mazawey
Goldie Wolfe Miller
Ed Tomezsko, PhD
Patti Davis
Nancy Herlin
SCIENTIFIC ADVISORY BOARDAhmet Höke MD, PhD, FRCPC PROFESSOR OF NEUROLOGY AND NEUROSCIENCE DIRECTOR, NEUROMUSCULAR DIVISION JOHNS HOPKINS SCHOOL OF MEDICINE
Deborah Lee, MD, PhD VP, CLINICAL DEVELOPMENT INSYS THERAPEUTICS, INC.
Richard A. Lewis, MD, FAAN DIRECTOR OF THE ELECTROMYOGRAPHY LAB DEPARTMENT OF NEUROLOGY CEDARS-SINAI MEDICAL CENTER, LOS ANGELES, CA
Irfan Qureshi MEDICAL DIRECTOR, BRISTOL-MYERS SQUIBB PRINCETON, NJ
EXECUTIVE DIRECTOR Pam Shlemon
SR. PROGRAM COORDINATOR Marlene Dodinval
ADMINISTRATIVE ASSISTANT Angela Nevel
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Please use the enclosed donation envelope (or donate online at www.foundationforpn.org)
to support the on-going work of the Foundation.
Charitable bequests are a wonderful philanthropic expression. It is a
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the Foundation for Peripheral Neuropathy when you plan
your estate.
For more information about giving, includingbequests and sponsorship opportunities
please contact Pam Shlemon at 847-883-9951 or at pam@tf pn.org
As a registered 501 (c) (3) not-for-profit organization, all donations made to the Foundation are tax exempt to the fullest extent permitted by law.
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Letters from fans“Thank you for being a resource. It’s
a very tough lonely road as you well
know, and I need all the help I can
get.” Greg, Canada
“So glad there is a website and organization devoted to PN. [PN is]
so underfunded and such a debilitating and poorly understood
condition. Especially idiopathic neuropathy. I never mind
supporting this cause. Glad FPN is there for us.” Susan, NY