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Neuropathy News
®
Together, we can beat this disease
Issue 29: 1-08 – January Issue
IN THIS ISSUE
Clinical Trials Research Update . . . . . . . . . . . . . . . . . .1
Letter From the President . . . . . . . . . . . . . . . . . . . . . .3
Better Safe Than Sorry . . . . . . . . . . . . . . . . . . . . . . . . .3
Association Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . .4
EDITOR Tina Tockarshewsky
2007 Benefactor Listing . . . . . . . . . . . . . . . . . . . . . . . .5
ASSOCIATE EDITORS Irene H. Beer, Natacha T. Pires Neuropathy Center News . . . . . . . . . . . . . . . . . . . . . .6
MEDICAL ADVISOR Norman Latov, M.D., Ph.D.
Supporting Support Groups: Part I . . . . . . . . . . . . . . .6
Support Group Directory . . . . . . . . . . . . . . . . . . . . . .8
Optimizing Wellness: Part II . . . . . . . . . . . . . . . . . . .11
Letters to the Editor . . . . . . . . . . . . . . . . . . . . . . . . . .12
Ask the Doctor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13
Safe Driving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14
FDA Exchange . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15
Clinical Trials: The Path to Emerging Peripheral
Neuropathy Treatments
BY THOMAS H. BRANNAGAN, III, M.D., WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
Despite the fact that approximately 20 million people in the U.S. alone
have peripheral neuropathy, treatment options are extremely limited.
Right now patients only have two FDA-approved medications indicated
for neuropathy: pregabalin (indicated for diabetic neuropathy and postherpetic neuralgia) and duloxetine (indicated for diabetic neuropathy
only). Both will treat the symptoms of neuropathy pain, but not the
neuropathy itself.
However, there is hope for additional treatment possibilities on the horizon. Currently, a number of medications are in clinical trials to treat
peripheral neuropathy, and their outcomes may soon provide new treatment options for physicians.
Diabetic Neuropathy
The most common cause of neuropathy is diabetes. Given its prevalence, there is more clinical trial activity for diabetic neuropathy than for
any other neuropathy. Trials in progress include:
• Gene Therapy Treatment
One potential treatment for diabetic neuropathy under investigation is
gene therapy to increase vasoactive endothelial growth factor (VEGF).
VEGF is a glycoprotein growth factor known to stimulate endothelial cells
or blood vessels, though it has subsequently been found to also act on
neuronal growth. In 2001, Dr. Drasko Simovic and his research team at
Tufts University School of Medicine reported that gene therapy to promote VEGF helped neuropathy associated with vascular disease, including
some patients with diabetes. VEGF gene therapy has also been successful
in improving diabetic neuropathy in animal models. Today, there are several studies enrolling neuropathy patients for VEGF gene therapy, each
with different methods of delivering a gene to promote VEGF expression.
• Aldose Reductase Inhibitors
Another possible treatment for diabetic neuropathy is the development
of medications inhibiting or blocking the aldose reductase enzyme.
Aldose reductase is an enzyme that converts glucose to sorbitol. It is
thought that the flux of the glucose to sorbitol conversion contributes to
the nerve damage found in diabetic neuropathy. Previous attempts at
developing aldose reductase inhibiting medications have been unsuccessful because of weak activity by or side effects from the studies’ medicines. However, newer medications with stronger activity against aldose
reductase have since been developed, and these show promise in small
initial studies. Results of further studies are awaited to see if this early
promise continues.
Inherited Neuropathy
Inherited neuropathy or Charcot Marie Tooth (CMT) disease is another
common cause of neuropathy. Progress has been made in identifying
some of the genetic mutations responsible for CMT, however, the find(continued on page 2)
Neuropathy News
January 2008
Update on Current Clinical Trials
in Neuropathy Research
ings have not translated easily into new therapies. One finding does
show promise, though. Using the genetic mutations identified, scientists
can now create animal models for CMT. The most common cause of
CMT is the presence of an extra copy of the PMP22 gene. Vitamin C acts
to reduce the expression of this gene, and investigators have recently
found that administering high doses of vitamin C improved the neuropathy in these animal models. Separate clinical studies are now being conducted in the Netherlands, Italy and the U.S. to evaluate the efficacy of
high dose vitamin C therapy for CMT type I.
Auto-Immune Neuropathy
Anti-Mag (myelin associated glycoprotein) neuropathy typically presents
as a slowly progressive demyelinating neuropathy, causing unsteadiness
when walking as well as weakness. At the 2007 American Academy of
Neurology annual meeting, Dr. Marinos C. Dalakas of Jefferson Medical
College and his research colleagues reported on the benefit of rituximab
for anti-Mag neuropathy in a placebo-controlled double-blind randomized
trial. Rituximab is an intravenous medication that kills the B cells involved
with the production of antibodies (including the anti-Mag antibody). The
benefits of rituximab were found to last six to eight months.
Neuropathic Pain
The symptomatic medications currently available for neuropathic pain do
help many people. Still, other patients find them to be ineffective or
THE NEUROPATHY ASSOCIATION
Board of Directors
Ronnie Chalif, President
Michael Sloser, Treasurer
Jill C. Lesser, Esq., Secretary
Norman Latov, M.D., Ph.D., Medical Advisor
Arthur W. Collins, Ph.D.
James R. Gardner, Ph.D.
Bartley R. Labiner, D.D.S.
Jan R. Martin
Peter Tishman
David Wood
Past President
Mary Ann Donovan (1995-2005)
Executive Director
Tina Tockarshewsky
2
continued from page 1
cause intolerable side effects. There continues to be a need for new neuropathic pain medications. Several medications that act by new nerve
pain mechanisms have recently been developed and are being tested.
Dextromethorphan hydrobromide/quinidine sulfate (DMQ) blocks the Nmethyl-D-aspartate (NMDA) receptor used by the excitatory transmitter
glutamate: a study presented at the 2007 International Congress on
Neuropathic Pain reported that DMQ helped diabetic neuropathy pain. In
addition, a novel anti-convulsant called lacosamide, which acts by modulating slow sodium channels, was recently reported in the Clinical Journal
of Pain as improving diabetic neuropathy pain. Presently, lacosamide is
under review with the European Medicines Agency (EMEA) and the FDA
for use in diabetic neuropathy pain treatment.
The peripheral neuropathy community looks with great hope to the
results of current and future clinical trials, knowing that they serve as harbingers of hope for better care and treatment. Patients interested in
learning about or participating in a clinical trial can ask their own physicians or learn more about current trials on the National Institutes of
Health (NIH)-sponsored website, www.clinicaltrials.gov.
Dr. Thomas Brannagan is the director of the diabetic neuropathy
research center at Weill Cornell Medical College.
www.med.cornell.edu/diabeticneuropathy
Directors Emeriti
Lovejoy Duryea
John P. Warwick
National Advisory Council
Paul G. Donohue, M.D.
Jonathan Fanton
George Fisher
General (Ret.) P.X. Kelley
Walter L. Larimore, M.D.
Heidi Loeb
Walter G. Montgomery
Sheila S. Mosler
Vincent “Jim” Peters
Thomas Moran
Charles Ryskamp
Judith P. Sulzberger, M.D.
Published by
The Neuropathy Association, Inc.
60 E. 42nd St., Suite 942
New York, NY 10165-0930
Tel: 212-692-0662
Fax: 212-692-0668
Website: www.neuropathy.org
E-mail: [email protected]
Back issues: $3.00 each
Set of 28 (Issues 1-27): $68.00
If you have two addresses, please send us both
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dates you’ll be there, so we can send your mail to
the right place. If you move, please send us your
new address.
Neuropathy News
January 2008
Letter from the President
Excitement fills the air as we enter 2008!
Peripheral neuropathy awareness has
gained great momentum as our
Association continues to serve the neuropathy community by forging ahead
with new strength in leadership and solid
growth through our nationwide network
of centers and support groups.
Neuropathy is indeed emerging from the
shadows and finding its way into public consciousness. I even heard it mentioned during conversation at the theater the other night; then, again, a few
days later at a dinner party. Lately, everywhere I go I encounter people sharing a neuropathy story. While more people know what peripheral neuropathy is, few really understand what it feels like or means to have neuropathy.
That is our next challenge.
Great strides continue to be made in the quest for new treatments for the
myriad of causes for neuropathy effecting around 20 million people in
the U.S. alone. We are doing our part to make that happen by growing
our Association, with approximately 50,000 members and supporters, 120
support groups, four chapters and eight neuropathy centers spanning
North America.
We look forward to launching new initiatives in your local community
and across the nation. How wonderful to have a new year ahead filled
with new hope and endless possibilities. Together, we can—and we
will—beat neuropathy!
Sincerely,
Ronnie Chalif
The Neuropathy Association continues to work to serve those living with
neuropathy. A testament to our recent efforts in education and awareness
was the prestigious Bronze Telly Award we received last year for our first
television public service announcement—featuring Angela Lansbury—on
peripheral neuropathy. We have expanded our affiliate network of
Neuropathy Centers, which provide hope and help, plus offer neuropathy
patients a more concentrated effort in the services they need. We are
grateful for the unwavering dedication over the past year of our staff,
including our new Executive Director Tina Tockarshewsky, who provided
strong leadership to guide our way.
Your Financial Support
is Vital!
Your continued support ensures that we keep momentum in
our campaign to raise public awareness, improve the lives of
those afflicted, and ultimately seek a cure to prevent future
millions from suffering.
There are many different ways to support The Neuropathy
Association. Whether through a gift made today or a gift
planned for tomorrow, let us work with you to develop an
approach that honors your intentions. Ensuring the best match
of your charitable wishes to our on-going needs means that
together we will beat this disease. For more information on
charitable giving options, contact The Neuropathy Association
at 212-692-0662.
Better Safe
Than Sorry:
Time and Energy
BY RONNIE CHALIF
Time plays tricks on all of us.
With neuropathy, it takes longer to accomplish less.
I recently bought my son an hour glass for the holidays
and turned it upside down in the store.
Before I turned around,
10 minutes disappeared into the bottom of the glass.
Watching time go by was hypnotic.
Is it neuropathy?
The slowing down of the body or is it aging?
The slowing down of clock time?
Whatever, perhaps we need more time to accomplish our tasks.
Also more energy.
To move with neuropathy can be treacherous.
The compensation of the body takes energy.
Scanning every step takes both time and energy.
Walk carefully,
Leave earlier to arrive on time.
Excuse me…
I have to leave for an appointment with my doctor.
So I’d better stop here.
Good luck.
3
Neuropathy News
January 2008
Neuropathy Association Notes
NEUROPATHY CENTER OPEN HOUSES HELD IN PHOENIX, ARIZONA AND KANSAS CITY, KANSAS
Two of our newest centers in Arizona and Kansas recently kicked off their
activities by inviting the local communities to come visit, meet the staff, learn
about peripheral neuropathy, and exchange experiences with other patients.
On October 3, 2007, Banner Good Samaritan Neuropathy Center in Phoenix
hosted an open house that was well received by all in attendance. Dr. Todd
Levine (co-director). Dr. David Saperstein (co-director), Kris Irizarry (nurse
director) and their team of healthcare professionals along with Tina
Tockarshewsky, The Neuropathy Association’s executive director, welcomed
patients as well as other Banner healthcare professionals to share with visitors the capabilities offered at the Banner Good Samaritan center.
City University Medical Center’s neuropathy center as well as the
Association’s executive director Tina Tockarshewsky opened their doors to
engage patients and their families in a morning of presentations, information
exchanges, and a tour of the facilities. In addition to local greater Kansas
City area patients, visitors drove in from Arkansas and Oklahoma, all in an
effort to learn more about and get answers for coping with neuropathy.
At the Phoenix, AZ, Banner
Good Samaritan Neuropathy
Center open house: on the
left is Amna Mohammad,
R.N. and on the right Melissa
Ponce, R.N.
On December 7, 2007, Dr. Mazen Dimachie (co-director), Dr. Mamatha
Pasnoor (co-director), Dr. Richard Barrone (head of the neurology department), their team of medical professionals and researchers at the Kansas
AN “INTIMATE EVENING” GATHERING GLITTERS IN NEW YORK CITY
Below: Honoree Mrs. I. Heidi Loeb and Dr. Norman Latov, Medical Advisor
to The Neuropathy Association.
Below (l-r): Tina Tockarshewsky,
executive director of The
Neuropathy Association, and
Honoree Ms. Heidi Loeb.
Gathered in support of The Neuropathy Association are (l-r) entertainers
Robert White and Karen Akers, co-chair Rev. Mother Dolores Hart, emcee
Jim Dale, Tina Tockarshewsky, and co-chair Maria Cooper Janis.
In October 2007, an invitation-only fundraising dinner was held at a private club in New York City to raise awareness and support for The
Neuropathy Association. Along with Angela Lansbury as Honorary Chair,
co-chairs Maria Cooper Janis and Rev. Mother Dolores Hart welcomed
guests for an evening emceed by world-renown performer Jim Dale and
featuring special performances by cabaret artist Karen Akers and tenor
Robert White. The evening celebrated the progress made in raising neuropathy awareness, while also honoring the efforts of three champions
working tirelessly on behalf of the neuropathy community: Mrs. I. Heidi
Loeb and Ms. Heidi Loeb for their support of the David S. Loeb
Neuropathy Center at the University of California-San Francisco, and Mr.
Patrick Schmidt, CEO of FFF Enterprises, for his work to ensure proper
treatment and care is accessible to those in need of it. The evening raised
over $100,000 to support our efforts for the neuropathy community.
4
Above (l-r): Honoree Patrick
Schmidt, Tina Tockarshewsky and
Dr. Norman Latov.
Above: Michael Sloser, Treasurer, and Ronnie Chalif,
President of The Neuropathy Association.
Photography by Richard Lewin
Neuropathy News
January 2008
MARK YOUR CALENDARS! MAY 12-16, 2008 IS NATIONAL NEUROPATHY WEEK!
As you update your new 2008 calendars, don’t forget to highlight May 1216 as our fourth annual National Neuropathy Week. The third week of
May is held for us on the federal government’s official 2008 Calendar of
National Health Observances. So be sure to mark your calendars and
spread the word in your local community!
NEUROPATHY CENTER ADDED IN LOS ANGELES, CALIFORNIA
We are excited to announce the addition of another Association-designated Neuropathy Center, this time in Los Angeles under the directorship of
2006 Association award-recipient Dr. W. King Engel along with co-director
Dr. Valerie Akanas. Hosted at Good Samaritan Hospital, this newest cen-
ter continues to strengthen our network of now eight centers. We look
forward to offering the Los Angeles and Southern California communities
more opportunities with this new center. For more information, see the
Centers’ directory featured on page 6.
The Neuropathy Association 2007 Benefactor Members*
Thanks to your extraordinary generosity, not only has the number of our
Benefactor Members increased by over 50%, but the size of donations has also increased from 2006.
Please accept our heartfelt gratitude to all of our contributors for helping us to serve those suffering with neuropathy.
Mr. and Mrs. Joseph B. Allegretti
Mr. Daniel G. Anderson
Mr. and Mrs. Leslie S. Ash
Mr. Frank Augsbury
Mr. and Mrs. Richard Baker
Bank of America/United Way Campaign
Mr. Donald Beets
Mrs. Emmie Cardwell Bolden
Mr. John Boyle
The Beverly H. Bremer Trust
Mr. and Mrs. Joseph Buckley
Dr. Karen Burke
Mrs. Ronnie Chalif
Ms. Marjorie Chester
Mr. David Chleck
Dr. Arthur W. Collins
Colorado Neurological Institute
Columbus Citizens Foundation
Corymore Foundation/Angela Lansbury Shaw
Mrs. Betsy C. Cosgrove
Ms. Helen Crump
CSL Behring
Cushman & Wakefield, Inc.
Ms. Harriet Dennison
Mr. Wilbur DeYoung
Mr. Dennis Duerre
Dr. and Mrs. Selig Eisenberg
ENDO Pharmaceuticals, Inc
Ms. Stephanie Feld
The George and Patricia Ann Fisher Foundation
Mr. Michael T. Flora
Foresters
Mr. David Freeman
Dr. and Mrs. James Gardner
Ms. Grace Goldberg
Ms. Cissel Gott
Ms. Beatrice Gougeon
Mr. James Hardie
Ms. Mary Hegarty
Mr. Bernard B. Herman
Mrs. Dolores Hope
Mr. William K. Howell
The Durwood and Susan Huckabay Foundation
The Doris and Martin Huffman Foundation
Mr. Mordecai Jacobi
Mrs. Elaine L. Katz
Mr. Jeffrey Katz
General (Ret.) P. X. Kelley
Kingsbrook Jewish Medical Center
Mr. Douglas M. Kinney
Dr. and Mrs. Bartley Labiner
Dr. Norman Latov
Mr. Kenneth Lipper
Ms. Heidi A. Loeb
Mrs. I. Heidi Loeb
Judge Edmund V. Ludwig
Ms. Wendy Lumsden
The Lumsden Family Foundation
The Fred and June MacMurray Foundation
Ms. Kathleen Marble
Ms. Jan R. Martin
Mr. Jack McGouldrick
MedPro Rx, Inc.
MedStar Health, Inc.
The Mellen Foundation
The Melrene Fund
Mr. Bill Melton
Ms. Barbara Middleton
Mr. and Mrs. Tom Morgan
The Morse Family Foundation
The New York Community Trust
Octapharma
Mr. Robert Patent
Mr. Roland Pease
Red Hawk Land Company, LLC
Mr. Robert Reed
Mr. Richard Reuss
Lt. Col. (Ret.) Eugene Richardson
Robinson Lerer & Montgomery, LLC
The Rosensteil Foundation
The Marion and Robert Rosenthal Foundation
Mr. Stanley Schmulewitz
Mrs. Pat Schoenfeld
Mrs. Shirley Sherman
Estate of Mr. Kenneth Siepman
Mr. Joshua Sloser
The Thomas W. Smith Foundation
Mrs. Betty Soreng
Ms. Beverly Sternlieb
Mrs. Patrice Stilwell
Dr. Judith P. Sulzberger
Ms. Joy Swanson
Talecris Biotherapeutics
Mr. Peter Tishman
Tishman Speyer Properties
Mr. Robert Toner
Ms. Alice Dodge Wallace
Ms. Jane M. Waterman
The Norman and Vivian Weiden Foundation
Mr. Arthur M. Weis
The Harvey and Annette Whittemore Foundation
Mr. Neal L. Williams
Mr. and Mrs. Elliott Wolbrom
Mr. Winston E. Wolfe
The Zankel Fund
*Donors of $1,000 and more
as of December 31, 2007
5
Neuropathy News
January 2008
Neuropathy Centers Deliver Education,
Outreach and Assistance
BY TINA TOCKARSHEWSKY
We continue to build the groundwork for our network of ten Neuropathy
Centers at America’s most prestigious medical schools and institutions.
To date, we have laid the foundation for eight centers across the country.
The Centers’ directors are enthusiastically carrying out their mission,
working closely with The Neuropathy Association to increase local community outreach and provide medical professionals, policymakers and the
general public with information about this increasingly pervasive disease.
Funding is our biggest challenge, with monies needed to support the
staffing and programming that can make the Centers network truly
vibrant. When the funding is available, we seek to support each Center’s
activities with at least $50,000 per year to provide administration and a
nurse coordinator from the host institution to manage day-to-day activities while coordinating activities with the Association. The Association acts
as a communications hub, providing educational tools and managerial
guidance to encourage pro-patient programs, including seminars and
teaching conferences, local continuing medical education (CME) courses
and patient support groups.
We continue to be hopeful about the long-term potential of this national
initiative while working to expand the benefits delivered at the local level.
Be sure to tell friends and fellow patients about the centers. Let them
know the centers are there to help!
Association-Designated Neuropathy Centers
ARIZONA
Banner Good Samaritan Neuropathy Center
Todd Levine, M.D., Co-Director
David Saperstein, M.D., Co-Director
Kris Irizarry, Nurse Director
FLORIDA-JACKSONVILLE
University of Florida Neuropathy Center
Alan R. Berger, M.D., Director
Mindy Grall, Director of Research
Karen S. Perrin, R.N., Neuropathy Center Coordinator
1012 East Willetta Street
Phoenix, AZ 85006
Tel: 602-239-6515
[email protected]
580 West 8th Street, Plaza 1, 9th Floor
Jacksonville, FL 32209
Tel: 904-244-9922
[email protected]
http://jax.shands.org/hs/neuro/neuromuscular.asp
CALIFORNIA-LOS ANGELES
Neuropathy Center of Los Angeles
W. King Engel, M.D., Director
Valerie Akanas, M.D., Ph.D., Co-Director
Good Samaritan Hospital
637 South Lucas Avenue
Los Angeles, CA 90017
Tel: 213-975-9950
CALIFORNIA-SAN FRANCISCO
University of California at San Francisco
Neuropathy Center
Jeffrey Ralph, M.D., Director
Amy Mahoney, R.N., B.S.N.., Nurse Coordinator
400 Parnassus Avenue, Rm. A837
San Francisco, CA 94143
Tel: 415-353-2312
[email protected]
6
FLORIDA-MIAMI
University of Miami Miller School of Medicine
Neuropathy Center
Kehma Sharma, M.D., Director
Gina Gonzalez, R.N., Nurse Coordinator
Professional Arts Building, Rm. 609
1150 Northwest 14th Street
Miami, FL 33136
Tel: 305-243-7400
[email protected]
KANSAS
Kansas University Medical Center Neuropathy Center
Mazen M. Dimachkie, M.D., Co-Director
Mamatha Pasnoor, M.D., Co-Director
Vickie Holt, L.P.N., Nurse Coordinator
3599 Rainbow Blvd, Mail Stop 2012
Kansas City, KS 66160
Phone: 913-588-0656
[email protected]
MICHIGAN
University of Michigan Neuropathy Center
Eva L. Feldman, M.D., Ph.D., Director
Timothy L. Funckes, R.N., B.S.N., Nurse Coordinator
Taubman Center 1914/0316
1500 East Medical Center Drive
Ann Arbor, MI 48109
Tel: 734-763-7274
For Appointments: 734.936.9020
Fax: 734-763-7275
[email protected]
http://www.med.umich.edu/neuro/clinical/neuropathy.htm
NEW YORK
Peripheral Neuropathy Center
New York Weill Cornell Medical Center
Weill Cornell Medical College
New York-Presbyterian Hospital
Norman Latov, M.D., Director
Corinna Cassillo, R.N., B.S.N., Nurse Coordinator
635 Madison Avenue, Suite 400
New York, NY 10022
Tel: 212-888-8516
[email protected]
http://www.cornellphysicians.com/periphneu/
Neuropathy News
January 2008
Supporting Support Groups
Part I: Getting Started
BY IRENE H. BEER
The Neuropathy Association is proud of its 120 volunteer-led support
groups throughout the US and Canada. This network provides members
with an opportunity to learn from each other, develop friendships, and
hear professional speakers familiar with peripheral neuropathy (PN). Six
years ago, I was a snowbird in Florida who wanted to start a local support
group. I called Paul Guidos at The Neuropathy Association and asked him
to help me find members living in my area. With Paul’s help, I met Morty
Baum, who agreed to serve as a co-leader.
Balance, Strength and Mobility.” Both speakers were excellent, and
answered a lot of questions. The group is actively engaged each meeting,
and I am glad Steven and I have kept it moving along so well.
Remember, The Neuropathy Association is very supportive, and can provide you with literature on staring a group and connecting with members
in your area. Give Paul Guidos a call at (212) 692-0664 or e-mail him at
[email protected]. It’s very satisfying and pleasurable to meet others with PN and help them learn more about it.
After looking around, Morty and I found a library to provide a room for us
once a month at no charge. Local Association members were contacted,
and we were ready to start our group. The local newspapers featured a
section on Support Group Meetings, where we were able to advertise. As
our group grew, the space became over-crowded.
STARTING A SUPPORT GROUP
If you are considering starting a support group in your area, you
will want to incorporate ideas from other support group leaders—
their tips and tricks, do’s and don’ts. Irene Beer offers the following
lessons she has learned from her own experiences.
I spoke with my local neurologist about our space problem. He told me
that the hospital he was connected with had a conference center located
immediately opposite the main hospital’s entrance. The center was a large
space with microphones, comfortable seating, and film screens—excellent
meeting facilities. The hospital even offered to provide cold drinks and
snacks, and send out monthly notices for us. We were delighted!
Since then, I have moved back to New York City, where I was recently
asked to start another support group. I talked to friend and fellow IVIG
recipient, Steven Smith, about getting the group started. We needed a
place, but many public spaces in NYC charge money. As we discussed our
dilemma in the infusion room, a fellow patient offered us a conference
room. He was a member of a large law firm, conveniently accessed by all
forms of transportation. Steven and I were thrilled! I called Paul Guidos
again, and notices went out to New York City members announcing our
meeting.
At our first session, our host provided a table with bottles of water, cups,
ice, coffee and tea, cakes, fruit plus other amenities including copying.
Needless to say, we were very pleased. We began our meeting by having
everyone introduce him/herself and talk about their PN experience. Pain
was the major concern facing the group, and attendees were eager to
exchange information, ask questions and find out about medications.
In recent months, we have had two wonderful speakers. A doctor from
The Neuropathy Center at Weill Cornell in New York City spoke about
“Wellness Programs for the PN Community,” and our second speaker—
my physical therapist—spoke on “Improving Function Despite PN:
Irene’s Support Group Tips
Starting a support group is about reaching out to people who share
your interests, supporting and promoting a cause by addressing
each other’s needs, and building a community.
•
•
•
•
•
•
•
•
•
•
•
It requires time, patience and plenty of energy! But it’s worth it
Seek donated space in a library, hospital convention center or business.
Take transportation and accessibility into account when finding a place.
Ask. Some places may make copies, mail notices, and provide refreshments.
Tap your own resources for speakers—your neurologist or therapists.
Most papers have a section to advertise local group meetings. Use it.
Almost everyone wants to discuss their pain, share info and get feedback.
Provide resources—pain information, articles and contacts.
Delegate. Several leaders manage work more easily and prepare better.
Divide simple tasks like attendance, copying and providing refreshments.
Listen to what the group needs, provide it and be flexible and creative!
We look forward to bringing you more ideas and invaluable “lessons
learned” from support group leaders in future issues.
7
Neuropathy News
January 2008
Self-Help Support Groups in the U.S. and Canada
Support groups provide a much-needed support network for sharing and
learning. These groups, run by their members, meet to exchange common
experiences and knowledge, and offer one another strength and hope. If
you do not find a group in your area, contact us for suggestions—or even
ALABAMA
Frank Broadway, Jr.
334-244-2020
ARIZONA
Mesa
Marilynn Falk
480-354-2231
[email protected]
Scottsdale
Donna Brower
480-312-7984
[email protected]
Tucson
Alex MacDonald
520-749-3583
[email protected]
Carol Rohlinger (CL)
520-290-9093
[email protected]
ARKANSAS
Mt. Home
Anita Hayden
870-425-4701
[email protected]
CALIFORNIA
Auburn - Day
Terry Stennis
916-663-3108
[email protected]
Auburn - Day
Charlene Amos
530-885-9865
[email protected]
Auburn - Evening
Bev Anderson
530-389-2416
[email protected]
Auburn - Evening
Grant Whitney
530-887-9881
[email protected]
8
consider helping us start one in your local community. You might be surprised where the initiative takes you! For more information, please contact
Paul at 212-692-0664 or [email protected].
Berkeley
Alan Dampsey
510-527-3568
[email protected]
Napa
Ron Patrick
707-257-2343
[email protected]
San Jose
Stan Pashote
510-490-4456
[email protected]
Los Angeles
Velda DeCosentine
310-485-0357
[email protected]
Concord
Ernette Rivera
925-889-2484
[email protected]
Oakland
Kathleen Nagel
510-653-8625
[email protected]
Santa Cruz
Mary Ann Leer
831-477-1239
[email protected]
San Diego
Jean Nurding
619-435-0850
[email protected]
Concord
Joe Burbulis
925-930-0300
[email protected]
Placerville
Arlene Middlebrook
530-626-1089
[email protected]
Santa Rosa
William Quarante
707-544-3238
Morningside
Jack McGouldrick
714-256-8273
[email protected]
Davis
Martha Chandley
916-371-1125
[email protected]
Placerville
Frank Roscoe
530-647-0777
[email protected]
Elk Grove
Michael Colozzi
916-421-8103
[email protected]
Redwood City
Annette DeVost
650-595-2478
[email protected]
Elk Grove
Susi Watson
916-354-0483
[email protected]
Redding
John Wright
530-337-6570
[email protected]
Folsom
Lorraine Morosi
916-984-4302
[email protected]
Redding
Anne Handel
530-241-6517
[email protected]
Grass Valley
Sally Hearn
530-268-1017
[email protected]
Roseville
Mary Lou Ward
916-772-5598
[email protected]
Jackson
Darlene Jarnigan
209-296-1760
[email protected]
Roseville
Marilyn Larson
916-771-8435
[email protected]
Lincoln
Bev Anderson
530-389-2416
[email protected]
Sacramento
Charles Moore
916-485-7723
[email protected]
Livermore
E. Lorene Stack
925-447-6158
[email protected]
Monterey
Don & Ann Trout
831-372-6959
[email protected]
Sacramento
Myke Taylor
916-487-2903
[email protected]
San Francisco
Amy Mahoney
415-502-5065
[email protected]
CL indicates Co-Support Group Leader
Sonora
Ed Minium
209-586-3702
[email protected]
Stockton
Case Klooster
209-463-5985
[email protected]
Stockton
Lynda Icochea
209-832-1480
[email protected]
Truckee
Bev Anderson
520-389-2416
[email protected]
Walnut Creek
Nancy Ostrander
925-930-9524
Los Osos
Alexander Morrison
805-534-1215
[email protected]
Costa Mesa
Dr. Marc Spitz
562-799-0656
[email protected]
Chico
Dorothy Rolls
530-899-6944
Clare Brown (CL)
530-343-8387
Stockton
Case Klooster
209-463-5985
[email protected]
COLORADO
West Sacramento
Sandra Vinson
916-372-6093
[email protected]
Woodland
Donna
530-661-3705
Yuba City
Nancy Escudero
530-673-3698
[email protected]
Yuba City
Ken Lux
530-673-3468
[email protected]
Denver
Dorothy Miller
303-814-2112
[email protected]
Colorado Springs
Robert A. Lowes
719-488-5605
[email protected]
CONNECTICUT
Groton
Linda McIntosh
860-460-6445
[email protected]
Neuropathy News
DELAWARE
Wilmington
Frank Castelli
302-475-1706
[email protected]
FLORIDA
Bradenton
Neal Kuyper
941-761-0179
[email protected]
Broward
Eugene Richardson
954-523-2987
[email protected]
Indian River County
Dr. John Lawlar
239-573-1001
Martin County
Lou Nielsen
772-287-1292
Palm Beach
Samuel Grundfast
561-964-0147
[email protected]
Duval County
Dr. Alan Berger
904-244-9922
Ladylake
Jean Ganske
352-753-8382
[email protected]
GEORGIA
Atlanta
James Griesmer
404-378-3516
[email protected]
Hilary Hargreaves (CL)
404-378-4587
[email protected]
IDAH0
Boise
Patricia Montross
208-395-1547
[email protected]
ILLINOIS
Quad Cities
Mary Kay Keemle
309-755-1063
[email protected]
January 2008
Chicago
Kathy Slottag
773-693-3578
[email protected]
Orleans
Jackie Stowell
508-255-7697
E-Group
Joseph Moniz
508-672-8824
[email protected]
IOWA
Dubuque
Bert Muir
563-583-2536
[email protected]
MICHIGAN
East Michigan
Mary Hall Price
248-819-7547
Mary.Hall-Price@
accredohealth.com
Cedar Rapids
Kitty Chandler
319-378-8403
[email protected]
Len McCulloch
248-474-2763
KENTUCKY
Bowling Green
Eric McGriff
270-783-0805
[email protected]
Grand Rapids
Dorothy Teesdale
616-897-9794
[email protected]
Louisville
Debbie Goldstein
502-426-4399
[email protected]
MINNESOTA
Minneapolis
Lois Martin
952-941-5372
[email protected]
Peggy Smith (CL)
502-239-7239
[email protected]
Baton Rouge
Richard Palecki, DPM
225-291-0093
Jennifer Sigler (CL)
225-906-4819
[email protected]
Scott Hunt
877-373-7817
[email protected]
MAINE
Kansas City
Shirley J Lynn
913-299-9873
[email protected]
Southern Maryland
David Spore
301-737-0623
[email protected]
NEW JERSEY
NORTH DAKOTA
Englewood
Mary Robertson
973-226-1535
[email protected]
Minot
Richard Kraft
701-776-5127
OHIO
Tom McCullum (CL)
201-692-9313
[email protected]
Hamilton
Bill Giovannetti
609-587-7215
[email protected]
Fran Burns (CL)
609-298-8135
[email protected]
Brick
Fontainne Gatti
908-233-9709
[email protected]
Cincinnati
Shirley Planet
937-433-1296
[email protected]
Sharon Wilson (CL)
937-379-2572
Cleveland
Kay Seawright
330-468-2526
[email protected]
Miamisburg
Sandy Daws, LPN
937-866-9089
[email protected]
NEW YORK
St. Louis
Susan Bonnell
877-373-7817
[email protected]
MARYLAND
Greensboro
Retta Gray
336-852-8489
[email protected]
OKLAHOMA
MISSOURI
LOUISIANA
Bangor Area
Suzanne Mock
207-862-6671
[email protected]
Reno
Marsha J. Campbell
775-851-0499
[email protected]
MONTANA
Billings
P. R. Crellin
406-655-5471
[email protected]
NEBRASKA
Manhattan
Irene Beer
212-787-2767
[email protected]
Rick Wagonheim (CL)
917-873-0803
[email protected]
Brooklyn
Lisa Volpe-Campisi
718-232-4179
[email protected]
Rochester
John McNeill
585-247-5543
[email protected]
Mohawk/Utica
Annette Reeder
315-866-5227
[email protected]
Parkville
Dorothea Svilar
410-668-0841
Lincoln
Sandy Behrens
402-483-4908
[email protected]
MASSACHUSETTS
NEVADA
Raleigh
Marion Tice
919-872-2360
Northshore
Werner Paster
978-479-4339
[email protected]
Las Vegas
Kim Heffner
702 -452-8277
[email protected]
Pittsboro
Vera Reece
919-542-7272
[email protected]
CL indicates Co-Support Group Leader
NORTH CAROLINA
Oklahoma City
John (Jim) Miller
405-728-4487
[email protected]
Janice Coleman (CL)
405-373-2286
[email protected]
Tulsa
Mary Lou Harkins
918-830-0157
[email protected]
OREGON
Corvallis
Betty McCarty
541-926-1212
[email protected]
Milwaukee
Deegee Ingle
503-652-6489
PENNSYLVANIA
Erie
Louise Schulze
814-838-2556
[email protected]
(continued on page 10)
9
Neuropathy News
January 2008
Self-Help Support Groups in the U.S. and Canada
PENNSYLVANIA con’t
Havertown
Donna M. Elberson
610-446-0792
[email protected]
Broomall
Denise Metz
610-356-4719
[email protected].
SOUTH CAROLINA
Charleston
Richard Marks, Jr.
843-884-3573
Columbia
John Watkins
803-256-1957
Mary Spradlin (CL)
803-782-5823
[email protected]
Corpus Christi
Richard A Bates
361-992-4314
[email protected]
Fort Worth
Ken Hestand
817-737-4735
[email protected]
Wichita Falls
Joe Castelli
940-692-2807
[email protected]
Houston Area
Ann Green
281-556-1415
[email protected]
Tarrant County
James Beard
817-318-1639
[email protected]
VIRGINIA
Greensville
Patsy Young
864-877-0702
[email protected]
Virginia Beach
Robert M Williamson
757-518-8086
[email protected]
SOUTH DAKOTA
WASHINGTON
Gregory
Patti Nachtigal
605-835-8394
[email protected]
Northwest
William M. Ouweneel
360-676-0376
[email protected]
TENNESSEE
WISCONSIN
Knoxville
Paula Isenberg
865-945-3810
[email protected]
Fox Valley
Michael Barklow
920-380-0218
[email protected]
Loudon County
James Fella
865-458-1781
[email protected]
Ron Fafnis (CL)
920-759-0022
[email protected]
Memphis
Herbert W Smith
901-843-3098
[email protected]
TEXAS
Fort Worth
Mary Heyduck
817-429-6298
[email protected]
10
Milwaukee
Caroline Meitler
262-968-4631
[email protected]
Mary Yellick
800-272-3666
WYOMING
Casper
Doris Hlava
307-234-1976
[email protected]
CANADA
Calgary, AB
Val Shaw-Lewis
403-831-2187
[email protected]
Fredericton, NB
Sharon Van Abbema
506-454-1551
[email protected]
(continued from page 9)
Peterborough, ON
Glenn Rogers
705-741-0044
[email protected]
SWEDEN
Stockholm
Hellen Ohlin
46 (0) 8 65139 00
[email protected]
Spread the Word:
Ask Your Doctor to Feature
Association Brochures!
Another easy way you can help us and help others is to ask your
doctor to make Neuropathy Association brochures available for their
patients. Simply drop us a note at [email protected] with your
mailing address, and we’ll send you a set of membership brochures
to take to your doctor’s office. Or call us at 212-692-0662 to ask for
brochures. It’s a quick way you can make a big difference!
Stay Up to Date with
www.neuropathy.org!
In-between newsletters, be sure to keep up with the latest
developments by visiting
www.neuropathy.org. Whether
it’s visiting with other patients on
the bulletin board or reading
about research and advocacy
efforts, you’re sure to find something new each time you visit, so
be sure to stop by regularly!
Peripheral Neuropathy: When the Numbness,
Weakness and Pain Won’t Stop
by our own medical advisor, Dr. Norman Latov
(Limited Quantities at $10 each)
This special price is below retail, and all proceeds go
directly to the Association. Consider sharing this straightforward volume with others so they might learn more
about neuropathy as well.
Neuropathy News
January 2008
Optimizing Wellness
Part II: Understanding Pain
BY BRIDGET T. CAREY, M.D., CORNELL WEILL PERIPHERAL NEUROPATHY CLINIC
This is the second in a series of articles focusing on optimizing wellness for people living with neuropathy.
Pain is an essential biological function that helps us survive and thrive. Its
purpose is to alert us to tissue damage occurring somewhere in our bodies, so we can move, adjust our position or behavior, or do whatever possible to stop the damage. For example, if you cut your finger chopping an
apple, you realize it first because you feel pain. As a result, you stop,
examine the wound, and decide to put on a band-aid or go to the emergency room.
basic function to ensure survival. This response is true for acute, sudden
pain, as well as chronic pain like the pain that occurs with neuropathy.
You can choose to refocus your attention upon other matters; however,
as long as the pain continues, your attention centers will continue to be
pulled back to that pain to some degree. This is why people with chronic
pain often find it difficult to concentrate.
Pathways of Pain
Pain is Multi-Faceted
On the surface, this seems straightforward. However, the way our nervous
system generates and processes pain is multi-faceted. Pain hurts, both
physically and psychologically. In addition to the experience of hurting,
numerous linked neurological and physiological processes occur. While
not as immediately distressing, these processes contribute to the overall
dysfunction, disability, and suffering associated with chronic pain. By illuminating the numerous neurological processes we can better understand
its power over our lives. Then, we can formulate strategies to disconnect
and uncouple these responses, weakening the effects pain inflicts upon
our day-to-day existence.
Pain Sends an ‘Alarm’
What exactly is pain? When damage occurs in the body, specialized sensory nerves activate, like an alarm. These nerves convey this alarm to
nerve cells in the spinal cord. In turn, these spinal nerve cells send a message to a part of the brain called the thalamus, which acts like a relay station. It integrates all sorts of incoming information and decides what to do
with it. In the case of pain, the thalamus sends messages to several different areas of the cerebral cortex, each serving a specific role.
For example, in response to a pain signal, the thalamus sends a message
to specialized regions in the brain that direct and maintain our attention.
In other words, pain forcibly redirects the brain’s centers of awareness and
attention away from whatever you are doing prioritizing a possible threat
to life or limb. It is worth noting this is not a gentle re-direction; rather,
more of a forcible one.
What if while cutting that apple you are watching a riveting murder mystery and about to find out who the killer is? No matter how enthralled you
are, the moment your finger’s cut, the mystery recedes and your attention
is pulled to your finger. Your re-direction of attention is an involuntary,
In addition to activating the brain’s attention and concentration centers,
pain pathways strongly connect to the brain’s centers for memory and
learning. This serves to protect our own well-being: if you experience
hurt the first time you touched a red-hot piece of metal, you will probably
think twice before touching a similar object.
We fear things we know can hurt us; the emotion encourages us to avoid
these things. In chronic pain, however, these connections are less helpful.
Many types of chronic pain, neuropathy included, have no easily avoidable pain-causing agent, and the pain continues to be associated with
anxiety and fear. Often, one comes to fear the pain itself. Over time, a
sense of helplessness and hopelessness tends to develop that reinforces
our fear.
The brain learns: the more a pathway is used, the more efficient the circuitry becomes. With chronic pain, connections strengthen as they are
used again and again. Being in pain becomes easy—even normal. The
good news is that while we cannot control the “alarm” input coming
from pain, we do have a measure of control over how the brain allocates resources. Through using voluntary thought, we can retrain our
brain to change its default connections. “Thinking” consists of using our
brain’s circuitry. Consequently, we can work to change old paths of least
resistance by creating new ones. This will not eliminate pain, but it may
lessen some of the suffering.
Calming Pain
Studies have addressed whether exercises such as yoga, tai chi, and
meditation might “uncouple” pain. Each may improve people’s experience of pain. The most common outcome is participants are aware they
are in pain; yet, it does not bother them as much. They feel better and
are happier.
(continued on page 13)
11
Neuropathy News
January 2008
Letters to the Editor
Your letters teach and inspire us all! Please keep your personal stories, comments and tips coming. Email
us at: [email protected]. Or write to us at: Editor, The Neuropathy Association, 60 E. 42nd St., Suite
942, New York, NY 10165. Be sure to include your name, address and phone number on your letter.
A Member Reflects
Thank you so very much for sending the information to me. I
couldn’t be more proud to see how far this organization has come in
the last 10 years.
I have to say that when I was first told of my illness after a year of
nobody listening—most thought I just wanted pain medicine—the web
site was a godsend for me. I do remember reading about the people who
had it for so long and thinking that I would never be able to last that long
with this disease. Well, I’m glad to say that I am still here and have no
plans of leaving this world soon.
So, thank you for all the help in learning I was not alone.
Marjorie F.
Keys to Managing My Foot Pain
I have had neuropathy for eleven years. I have had extensive tests to
determine the cause, and that has led to a keeping my pain and related
symptoms at a manageable level. Today, I am retired, and at 67 years old,
I can ski downhill, teach week-long sailing courses, drive our car long distances, and work in our yard. Thank you for keeping me posted with your
newsletter.
David S.
Neuropathy E-News Successfully Launches
Editor’s note: Responses to our new e-newsletter, launched in August 2007,
have been overwhelming. These are just a few of the comments received:
Thanks so much for the excellent publication distributed by e-mail.
I predict it will be a big hit and produce a tremendous increase in the
sharing of vital information to those of us with peripheral neuropathy.
Guy B.
Some Support and Relief
I was diagnosed with idiopathic peripheral neuropathy 6 years ago.
I feel severe arthritis of the spine caused my neuropathy. My feet began
to burn and my legs began to sting.
My medication has been problematic. One cause blurred vision.
Another caused me to heat up like a furnace and my legs felt like a hot
dog on a spit. I tried topical creams which seemed to help. Another
thing that I found helped a little were support stockings.
June B.
These letters are examples of the many letters we receive. If you
don’t see your letter here, it could appear in a future issue. We
reserve the right to edit letters for space and clarity. Any products
mentioned express the sole opinion of the writer, and do not represent an endorsement by The Neuropathy Association. Readers are
advised to consult with their physician before considering any new
treatment or regimen.
Thank you for Neuropathy E-News: attractive, efficient, and informative.
Bob W.
I have been, and will continue to be, a contributor. I just received
your e-mail, which is a worthwhile and much needed source of information! The material is excellent, and will be of great benefit to everyone
involved...from patients to healthcare providers. Hopefully, we can find a
cure for this almost forgotten and little understood condition.
David E.
….I appreciate the e-news. Printed newsletters go on a stack of periodicals I eventually get to…but I read emails each morning with my first cup
of coffee. What a treat to find the Neuropathy E-News waiting for me this
morning. I read every word, and forwarded the information about
GoodSearch to family and friends….
Patti L.
© 2003 The New Yorker Collection from Cartoonbank.com. All Rights Reserved.
12
Neuropathy News
Ask the Doctor
In this column expert neurologists answer your questions about
neuropathy—usually one question per issue, and more when
we are able. Please send your questions to “Ask the Doctor” c/o
Neuropathy News, The Neuropathy Association, 60 East 42nd
Street, Suite 942, New York, NY 10165-0930.
DEAR DOCTOR:
In 2002, I was diagnosed with autonomic neuropathy after believing
I had fibromyalgia….I know little about this disease other than it is an
auto-immune disease. I also have severe arthritis in my spine with
severe cervical stenosis. Since I have both of these problems, I get
very confused as to which problem is causing my pain and fatigue.
I had a transient ischemic attack (TIA) in June 2006, which is believed
to have been caused by a newly discovered patent foramen ovale
(PFO) in my heart. However, my neurologist seems to believe it
might have been the autonomic neuropathy which caused the TIA.
My PFO has not been fixed….I need someone to help me with this
disease and give me some advice and information….By the way, I am
a 64-year old woman (who looks younger), and have five grandchildren I enjoy seeing and doing things with. So any help is appreciated.
Thank you, Marion L.
DR. LOUIS H. WEIMER ANSWERS:
Many of our automatic and unconscious body functions are controlled
in part by a complex system comprising our autonomic nerves and
related brain areas. Several forms of peripheral neuropathy can affect
or disrupt autonomic nerves. In most cases, the problem is restricted
to the same sensory (sensation) and motor (strength) areas affected
by the neuropathy, usually the feet and lower legs. The most common
autonomic changes affect skin and blood flow in the area, often producing dry, cold, discolored feet. The skin often becomes thinner and
shiny due to a loss of normal body oil production. Sweating in the
local area is also reduced, sometimes forcing other areas of the body
to compensate by sweating excessively.
Some of the causes of neuropathy, including diabetes, can produce more
widespread and severe autonomic problems such as drops in blood
pressure (orthostatic hypotension), bladder disturbances, gastrointestinal
alterations, sexual dysfunction, reduced eye responses to light, and other
similar dysfunctions. There are recognized immune-mediated causes of
autonomic neuropathy, but they comprise only a minority of cases.
Autonomic neuropathy can be challenging to both diagnose and prove;
however, non-invasive methods of testing are available in many centers. Treatment depends on the underlying cause, with drops in blood
pressure the most common symptoms requiring treatment. Some
January 2008
blood pressure drops can occur without producing symptoms and may
go unnoticed. Checking blood pressure while reclining and then, again,
after 2-3 minutes of standing is the optimal routine bedside test.
More subtle but frequent blood pressure declines after standing—especially with increases in heart rate—can produce fatigue mimicking
chronic fatigue syndrome or fibromyalgia. However, these symptoms
should be tied to standing and not be present all of the time (orthostatic intolerance syndrome). Pain is a more complex symptom that can
be produced by many separate causes. In your specific case, there are
not sufficient details to tell whether the diagnoses are accurate and
autonomic neuropathy is the probable cause of your symptoms.
Dr. Louis H. Weimer is Co-Director of the Columbia Neuropathy
Research Center and Associate Clinical Professor of Neurology at
Columbia University.
Optimizing Wellness
continued from page 11
The idea is to alter the constant activation of the attentional and
emotional centers in response to the pain signal by recruiting them
for other activities. Studies suggest the most favorable of these may
be “Transcendental Meditation.” This type of medication includes any
meditation using a “mantra”—a word or phrase repeated many
times. These words may be recited silently or aloud. Transcendental
Meditation works for pain by inducing a calm, restful state that combats anxiety while simultaneously requiring constant attention to the
mantra, consequently capturing the brain’s frontal lobe centers of
concentration and attention.
Pain, though we may work to clam it, is a necessary survival function
pulling our attention when the body is damaged. While we cannot
control our pain “alarm,” we can redirect our response through voluntary thought. Meditation may help by giving us a way to lessen
some of the suffering from pain and improve our quality of life.
Meditation Exercise for Pain
• Pick a mantra that works for you—a line from a poem or writing
that speaks to you.
• Dedicate a quiet time and place where you will be undisturbed for at least 15 minutes.
• Sit comfortably and recite your mantra silently in your head,
or tonally aloud.
• Have patience. When your mind wanders, gently re-direct attention to your mantra.
• Dedicate 15 minutes daily to your practice and try to stick with
it for at least 30 days.
13
Neuropathy News
January 2008
When Neuropathy Affects Driving
Your Options When Driving Safely is Compromised by Neuropathy
BY MARY BETH MEYER, O.T.R., C.D.R.S., DRIVER REHABILITATION OF THE HUDSON VALLEY
We often take for granted our ability to get in the car and go whenever
we want. Until we experience a change. If neuropathy has caused a loss
of sensation, pain, weakness or incoordination, it doesn’t mean you have
to lose your independence! But it might be time to investigate if you
need to modify your driving. There are professionals available to help you
maintain your safety and independence.
First Assess Your Challenges
Speak to your doctor about the changes you are experiencing. Discuss
concerns he or she has about how these changes may affect your mobility and driving. Numbness in your legs or feet can cause difficulty in determining if your foot is placed on the gas or brake pedal. And, of course,
accidentally confusing these can be disastrous! Reduced sensation can
cause your foot to slip off the brake pedal while stopped in traffic, causing the car to suddenly roll forward.
Weakness in your legs may cause a “foot drop” which makes it difficult to
lift your foot from the gas to the brake. Weakness or loss of feeling in
your hands can make turning the steering wheel or shifting gears more
challenging too.
Find Solutions to Your Challenges
A “driver rehabilitation specialist” is a certified professional specially
trained to work with individuals with physical limitations and help them
maintain mobility in the community and safety in driving. A driver rehab
specialist can evaluate your needs and recommend adaptive equipment
to use in your vehicle to compensate for your specific area of difficulty.
For example, hand controls for gas and brake are available instead of
using your feet on the pedals. A special cover on the steering wheel may
give you a better grip to turn the wheel. If you use a motorized scooter
when you go out, special lifts can help get it in your vehicle.
The key is to consult with a specialist who can assess your needs and recommend which modifications are right for you. In most cases, you will
have an opportunity to try the adaptive equipment and be trained in the
correct way to use it.
Get the Right Adaptive Equipment
The driver rehab specialist can provide you with a list of dealers who modify motor vehicles and companies that sell adaptive devices. It is very
important you purchase adaptive equipment from dealers certified
and trained in installing these products. Check to be sure they warranty what they sell and can service it if necessary. It is risky to purchase and
install this type of equipment through the internet or an unreliable seller.
14
Once you have the vehicle modified to meet your needs, the driver rehab
specialist can train you in using the equipment and make sure you’re
comfortable and safe with the changes. Some devices (hand controls for
example) take training and practice to learn to use.
Plan for the Future if Your Condition May Worsen
If you are thinking about buying a wheelchair or scooter, consult with a
mobility specialist who can tell you if the equipment will fit in your vehicle. A driver rehab specialist can also guide you in assessing what type of
vehicle may be appropriate for you. The size, dimensions and features of
your wheelchair or scooter makes a difference in which vehicle you can
buy. Before buying, consider the ease of getting in and out of the vehicle.
Is there adequate parking at your home for a wheelchair accessible vehicle if one is needed? Will the vehicle meet your family needs as well?
The process of adapting to changes in your condition does not need to
be overwhelming. Seek the skills of the many professionals who are available to assist you in maintaining your safety and independence.
To locate a driver rehabilitation specialist in your area. contact:
ADED - The Association for Driver Rehabilitation Specialists
(877) 529-1830
www.aded.net
For information about mobility equipment dealers, contact:
NMEDA - National Mobility Equipment Dealers Association
(800) 833-0427
www.nmeda.org/consumers.htm
You may also be able to find a driver rehabilitation specialist through
a local rehabilitation hospital. Your medical insurance may cover
some of the expense of the evaluation or adaptive equipment. You
may need a doctor’s prescription to receive services.
Happy New Year!
As we begin 2008, The Neuropathy Association
would like to send you and your families all our
best wishes for the New Year ahead.
Our sincerest thanks for your support as we
continue our endeavors on your behalf.
Hopefully, together, we can make 2008 the year
that finally brings a cure!
Neuropathy News
January 2008
A Constructive Engagement with the FDA
on Regulation, Advocacy and Research
FDA Invites Open Exchange with Representatives from Neurological Disease Advocacy and Research Organizations
BY NATACHA T. PIRES
The Neuropathy Association was invited to a meeting last October by The
U.S. Food and Drug Administration’s (FDA) Office of Special Health Issues
(OSHI). The focus was building relationships between the FDA and key
groups representing the neurological diseases’ patient community.
Approximately 50 patient and scientific organizations attended, including
Federal health agencies like the National Institutes of Health (NIH). The
meeting explored the FDA’s role in clinical trials and drug approvals,
OSHI’s role in developing treatments for patients with neurological disorders, and encouraged participation by researchers and advocacy groups
in the formulation of FDA policies and procedures.
Theresa Toigo, R.Ph., M.B.A., director of OSHI, started by explaining the IntraAgency Neurology Working Group’s role in enhancing neurological disease
communication within the FDA. Neurological products are comprised of
drugs, devices, biologics, and combination products; each having a different
review center within the FDA. The Group provides a forum between review
centers for sharing technical and regulatory expertise as well as identifying
opportunities for patient advocacy groups to get involved.
Critical Path Initiative in Neurology
Armando Oliva, M.D., deputy director of Bioinformatics from the FDA’s
Office of Critical Path Programs, reviewed steps taken and challenges
faced in accelerating and simplifying the medical product development
process. In 2004, a nationwide “Critical Path Initiative” was launched to
support innovation in three areas:
• Biomarker Development – The FDA’s Biomarkers Consortium strives
to develop biological markers for new developments in drugs, diagnostics and treatment.
• Clinical Trial Modernization – This initiative focuses on increasing efficiencies in regulation of clinical research trials, design and methodology.
• Bioinformatics Optimization – By optimizing storage for new and
existing data, an e-platform could link healthcare findings to scientific
information in the field.
Consideration of Risks for Preventive/Disease-Modifying Medical
Products
Russell Katz, M.D., FDA’s Neurology Products Division Director, gave a
compelling overview of risks involved in product development, including
how the FDA evaluates risk and balances identifiable and unidentifiable
risks. Katz emphasized the final risk/benefit decision process is, at best, a
collective exercise in judgment. Patient input plays a crucial role when the
FDA considers significant risks associated with an investigational drug’s
“acceptability.” In serious conditions, Katz says significant and fatal risks
may be deemed “tolerable” as long as informed consent appropriately
explains the risk, the risk is sufficiently rare, and all steps (including risk
management strategies) are taken to protect the patient.
(continued on page 16)
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Neuropathy News
January 2008
Patient Involvement in the Regulation of Medical Products
continued from page 15
Patient Advocate Involvement and Influence in the Regulatory
Environment for Medical Products
Regulatory Issues in Medical Devices
Ann Costello, Ph.D., D.M.D., pain fellow at the FDA’s Center of Devices
and Radiological Health, outlined the regulatory pathway for medical
devices approval. She underscored the growing need to collaborate with
academia, industry and patient advocates to grasp the scope of medical
therapies amidst today’s rapid and complex advances.
Outreach and Dialogue at the FDA
An overview of the FDA’s outreach efforts for patient and scientific organizations to address the regulatory process was presented by Celia Witten,
Ph.D., M.D., FDA’s Office of Cellular, Tissue and Gene Therapy Director.
Efforts included scientific workshops, public forums, advisory committee
meetings, scientific and medical association conferences, as well as separate meetings with scientific and industry associations on issues and confidential meetings with manufacturers on product plans.
This panel discussion was moderated by David Banks, R.Ph., Ph.D. from
FDA’s OSHI. The three panelists—Diane Dorman (The National
Organization for Rare Disorders), Steve Gibson (The Amyotrophic Lateral
Sclerosis Association), and William Thies, Ph.D. (The Alzheimer’s
Association)—shared their perspectives on the orphan drug program’s
success, reassessing overreaction to risk, and finding issue-oriented input.
The panel showcased synergies achieved and goals to strive for when
neurological disease advocacy organizations and the FDA collaborate.
Groundwork was laid for neurological diseases organizations to help the
FDA modernize and transform product development. The Neuropathy
Association looks forward to advocating on your behalf for bringing new
products sooner (while monitoring risks), scrutinizing safe usage of products reaching the market, and providing targeted diagnoses and treatments.
The Association hopes to provide updates on future FDA exchanges.
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