Footnotes – First four issues
Footnotes
Issue 6 – February 12, 2021
ARTICLES
WEBINARS
- Chemo-induced Neuropathy – from the Foundation for Peripheral Neuropathy
- Choosing the right footwear – from the Greensboro PN group (Peripheral Neuropathy Resources)
PN Support Group: Resource Directory
Several of our members have asked us to remind them how to access the directory from the website home page. Here are the steps:
(https://pnsnetwork.org/resources/providers-directory/)
A couple months ago, the PN Support Group introduced a new information-sharing option, a Resource Directory. The Resource Directory allows members to share information in three categories: Providers, Products/Services and Medications/Supplements.
We have had a good initial response but would like to encourage members to share their experiences in each category. One caveat: this is not meant as an evaluative tool, just a way to communicate data.
- Go to https://pnsnetwork.org/
- Click on the Drop Down Menu (Parallel lines to right of PN Support Group) (or go directly to “Resources”)
- Click on “Resources”
- Click on “Resource Directory”: Choose Category: Provider; Product/Service; Medications/Supplements
- Scroll down to bottom of page. Click on the category of information you want to enter
- Enter your information. Please remember that only Pat Gualtieri can edit the Directory. If you make a mistake, please start a new entry. We will delete the incorrect information.
Presentation on Mindfulness Presented by Joel Minton
On February 6, 2020, Joel Minton, Director of the Mindful Life Center, presented information about a mindful self-care practice for pain management and anxiety relief. He also guided members through a relaxing mindful meditation that involved awareness of breath, visualizations, and gentle movements adapted PN sufferers. Joel’s handouts are posted, below. If you woud like further information, contact him at (703) 397-6687.
Help Requested by two PN Support Groups
The first request is from CJ Holliday and Dede Munzert at
peripheralneuropathyresources.com :
CJ is asking for people to submit tips on how they are handling their PN:
“We Are Looking For P-N Coping Tips – Email Any You Might Have To contactingcj@gmail.com“
DeDe Munzert, with CJ’s group, is also asking for help with a survey to help them better understand their PN audience. They hope the responses will help them better serve their readers’ needs. The survey is posted on their Facebook page: Peripheral Neuropathy Resources.
Another PN group on FaceBook, Michael Wright’s Peripheral Neuropathy Success Stories!, is also asking for help. Michael is asking people to send the names of neurologists and pain doctors they would recommend. His goal is to collect 100 names nationwide. He asks that you send him the doctor’s name and city and he will look up the address, etc. He will share this information with the Foundation for Peripheral Neuropathy and will also post the file on his FB page.
Articles Reommended by Bruce Malkin:
Re: Covid 19 Vaccine and Neurological Problems
“No Excess Risk for Neurologic Events Observed to Date from COVID-19 Vaccines”
https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=1075&blm_aid=578561
Re: Alpha-Lipoic Acid
User reviews, including impact on nerve damage pain vs. negatives ((hair loss, thinning;acid reflux)
https://www.drugs.com/mtm/alpha-lipoic-acid.html
Re: LYRICA® (pregabalin) Capsules CV Risk Info
Describes use of Lyrica to treat Diabetic Nerve Pain and Spinal Cord Injury Nerve Pain. Includes Safety Information, including warnings re: suicidal thoughts and depression. Contra-indicated when taking opioid medicines or certain anti-anxiety medications.
https://www.lyrica.com/node
Issue 5 – January 21, 2021
Announcing a New Executive Team for 2021
After many years of dedicated leadership, first by Steve Klitzman and later, joined by Mike Foxworth, they have announced that they are transitioning to new positions within the framework of a new Executive Team. Steve will take on Program Planning, while Mike will continue his support as Strategic Planner and Co-Technical Director. Pat Gualtieri will take on the position of Team Leader. Details are here.
Successful Effort to Persuade Congress to Include Peripheral Neuropathy as a Condition Eligible for Research Funding
The Foundation for Peripheral Neuropathy announced recent Congressional action to “designate ‘peripheral neuropathy’ as a condition eligible for research funding from the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). Language designating the condition eligible for funding is included in the fiscal year 2021 Omnibus Appropriations Act cleared by the House and Senate.
Article in Brain and Life Magazine Features PN Support Group Member
Bill Porter, DCPN Support Group member, was featured in a story in the December/January issue of Brain and Life magazine. The article explored the chair yoga classes Bill takes “as part of a healthy and active fitness regime.” The article also included Chair Exercise Tips and identified several organizations offering sitting exercises online.
Initiation of the Much Anticipated PN Support Group Happy Hour
Terry Orlando and Dave Matz hosted our first ever Happy Hour on Thursday, January 14, 2021 at 7:00. Happy Hour offers an opportunity for the group to socialize. Stay tuned for additional dates.
Webinars
Michael Wright, Coordinator of FB Page: PN Success Stories, announced the availability of a recording of their 1/7/21 Zoom meeting. The speaker was Stanley Kim, CEO of WinSanTor. He addressed a new medication currently undergoing clinical trials. Mr. Kim has been invited to share his presentation with our group later this Spring.
PN Success Stories also has announced a program called “Buddy Up.” It is a volunteer initiative to provide one-on-one support. If you want to help others, contact michaeljordan@me.com. They provide training.
Peripheral Neuropathy Resources, run by CJ Holliday, also has a mentoring program. They ask you to “make a difference with your unique experiences and skills.” More information is available on their FB page under Mentorship. (https://www.facebook.com/groups/544356725920673)
CJ, http://www.peripheralneuropathyresources.com/, also announced their next two meetings on February 8:
First meeting, Open Discussion at 4:00 PM ET and second meeting, a presentation by Pauline Kowley (from England) speaking on cognitive-hypnotherapy.
For an invitation, email contactingcj@gmail.com.
ARTICLES OF INTEREST
Reported by CJ Holliday:
https://www.devicewatch.org/ Your Guide to Questionable Medical Devices (Operated by Stephen Barrett, M.D.)
Mirror Neurons may be exacerbating your peripheral neuropathy pain!: https://www.medicalnewstoday.com/articles/324974
Reported by Bruce Malkin:
Boosting our sense of meaning in life is an often overlooked longevity ingredient – The Washington Post : https://www.washingtonpost.com/health/boosting-our-sense-of-meaning-in-life-is-an-often-overlooked-longevity-ingredient/2020/12/31/84871d32-29d4-11eb-8fa2-06e7cbb145c0_story.html
Appreciation Extended to Lucy Dunning and Jeneveive Wardell of Blue Sky Family Counseling for Presentation on Cognitive Behavioral Therapy
On January 2, 2021, Lucy Dunning and Jeneveive Wardell gave a thought-provoking presentation on Cognitive Behavioral Therapy to the PN Support Group. It generated much discussion and many good questions. It motivated many of our members to reflect more carefully on their approach to pain and how to deal with it in a more positivie way. Lucy provided the following handout:
Issue 4 – December 15, 2020
Recent Articles on The Foundation for Peripheral Neuropathy website:
Ask the Expert: Popular Questions from PN Patients
Answers to questions asked during October 20, 2020 webinar: Panel Discussion on Trends in Peripheral Neuropathy Research
Can Exercise Help Patients with Idiopathic Peripheral Neuropathy?
Review of research study by Johns Hopkins “to determine if exercise habits have any impact on the severity of peripheral neuropathy symptoms. The study looked at symptoms such as sensory loss, pain, muscular weakness, and balance problems.”
Recent Issues discussed by FB group members:
peripheralneuropathyresources.com
Moderated by CJ Holliday and Dede Munzert
*Acupuncture
*Transcendental Meditation, Mindfulness
*Lost muscle and/or bone strength in feet
Success Stories!
Peripheral Neuropathy Success Stories!
Moderated by Michael Wright, Linda Benson and others
*CBD
*Keto Diet
*Statins
*Causes and Help for PN Symptoms
*Holiday plans
On Your Feet
Moderated by Terry Orlando
*Foot massagers
*Magnesium flakes
*Dizziness (Washington Post article)
*Gene Therapy (sciencedaily.com article)
Reported by Bruce Malkin
A Canadian study of Perenzipine is in Phase 2 of clinical testing. It is a drug possibly able to regenerate here cells, at least in cases of diabetic neuropathy. If all goes according to plan, the company will bring it on the market in 2023. Find out more at:
Reminder:
Our Resources Directory is up and running! Please visit for information on Providers, Products/Services and/or Medications/Supplements.
Please also help keep each other informed by adding information under each category. Remember the Password requires a $ for the “S.”
DCPNSupport.org/resources/providers-directory/
Issue 3 – November 21, 2020
Congressional Funding Initiative: Email Your Senators
Dear Support Group Member (plus family or friends),
We are asking you to take a few minutes before November 24, to help get funding for PN research from Congress. Sorry for the quick turnaround, but we know how important this issue is for our members.
Follow-up on Greensboro Monthly Meeting
CJ Holliday (http://www.peripheralneuropathyresources.com/ ) reports that the topic of “best shoes for peripheral neuropathy” was discussed at both of the Zoom meetings November 9. Here is a video (Password is d9&d*D*V) of Jack Crowder on “Shoe Solutions” discussing footwear options. Below are some links to many of the shoes that were discussed.
Some of the Shoe Brands That Were Discussed
New Balance 1540: https://rb.gy/xxzaaz
Apex: https://www.innovateistore.com/diabetic-shoes-a5500.aspx
Xelero: https://www.xeleroshoes.com/
Orthofeet: https://www.orthofeet.com/
Pedors: https://www.pedors.com/
Propet: https://www.propetusa.com/prodcat/mens.asp
Giesswein: https://us.giesswein.com/products/wool-cross-x-men
Some Interesting Shoe Brands That Were Not Discussed
Kuru: https://www.kurufootwear.com/
Mizuno: https://www.zappos.com/b/mizuno/brand/551
ZCoil: https://zcoil.com/neuropathy-footwear/
Dr Comfort Shoes & Socks: https://www.drcomfort.com/
Next On-line Meetings – Monday. December 14 4pm and 7pm Eastern
Cj Holliday
contactingcj@gmail.com
Cell: 336-455-1075
http://www.peripheralneuropathyresources.com/
Did You Know That November Is National Family Caregivers Month?
Register online at fairfaxcounty.gov/OlderAdults and scroll to free 2020 webinars for Family Caregivers or call 703-324-5484.
Caregiver Telephone Support Call:
Register online at fairfaxcounty.gov/familyservices/older-adults or call 703-324-5376 or email daphne.VanTiem@fairfaxcounty.gov. You will be given an access phone number to call for support.
Weekly caregiver meetings are held virtually so people can get together and talk about concerns and issues. Go online to fairfaxcounty.gov/neighborhood-community-services/virtual-center-active-adults or call 703-246-8743 for a calendar of events.
Articles recommended by Bruce Malkin:
Human ageing process biologically reversed in world first:
https://www.yahoo.com/news/human-ageing-process-biologically-reversed-153921785.html
Peripheral Neuropathy and the Impact on Safety:
https://www.foundationforpn.org/peripheral-neuropathy-impacts-patient-safety/
Upcoming Webinars
Living Well with Peripheral Neuropathy: Ask the Expert!
FPN welcomes Dr. Shanna Patterson for a special December 16 webinar to answer YOUR questions on Living Well with Peripheral Neuropathy. Join us for some first hand answers to your questions from an expert on treatments, diet, exercise, mental health and other aspects of living with peripheral neuropathy.
Living Well with Peripheral Neuropathy: Ask the Expert
December 16, 2020 3:00-4:00 p.m. ET
Click here to register
Issue 2 – November 1, 2020
Johns Hopkins Neurology Department News is a regular newsletter with good information on Neuropathy, but you must subscribe to receive it.
Peripheral Neuropathy Success Stories is a Facebook group and website that is led by Michael Wright with a focus on positivity.
Note: “Join us next Thursday, Oct. 29, as we will have an open mic and will focus on foot wear. Let’s share ideas on brands and styles and what feels good and what doesn’t feel good”
Here is the PN Success Stories on the web.
Joint Pain
Bruce Malkin recommended this article. While not specifically about Neuropathy, there’s good information here about joint pain.
Also, on facebook.com: Neuropathy Care Support Group
Led by Barbara Montgomery Certified Holistic Health & Wellness Coach
“We are committed to helping bring education and knowledge to each person with neuropathy, their family’s and care takers. “You Are Not Alone” is our slogan.”
Research
Here is another article on Gene Therapy from ScienceDaily, recommended by Bruce Malkin
“Nerve axons serve as the wiring of the nervous system, sending electrical signals that control movement and sense of touch. When axons are damaged, whether by injury or as a side effect…”
Upcoming Webinars
The Foundation for Peripheral Neuropathy is offering these upcoming webinars
Chemo-Induced Peripheral Neuropathy: Quality of Life & Treatment Planning for Breast Cancer & Other Cancer Patients
The Foundation for Peripheral Neuropathy is bringing together a panel of experts for this webinar to discuss CIPN and its impact on patients and their physical and mental health.
Date: Tuesday, November 10
Time: 12:00 – 1:00 p.m. ET (Please note that this lecture starts at 11 a.m. Central, 10 a.m. Mountain, and 9 a.m. Pacific)
Please click here to register.
Complementary & Alternative Medicine in Neuropathy
Date: Wednesday, November 11
Time: 11:30 a.m. – 12:30 p.m. ET
10:30 – 11:30 a.m. CT
9:30 – 10:30 a.m. MT
8:30 – 9:30 a.m. PT
Join us for our next webinar as Dr. Jinny Tavee presents integrative holistic therapies including nutrition, exercise and mind body therapies for the treatment of neuropathy symptoms.
Please click here to register.
Physical Exercise and Peripheral Neuropathy
Date: Thursday, November 19, 2020
Time: 7:00 – 8:00 p.m. ET
6:00 – 7:00 p.m. CT
5:00 – 6:00 p.m. MT
4:00 – 5:00 p.m. PT
Please join us for a new webinar in our Living Well with PN Patient Education webinar series. Physical Therapist Sarah Boyd PT, PTD and Occupational Therapist Sarah Dahlhauser OT, OTD of Mayo Clinic will share tips and suggestions on adding exercise and physical therapy to your living-well regime. The presentation will conclude with a Q&A session.
Please click here to register.
Access The Foundation for Peripheral Neuropathy October Newsletter:
Issue 1 – September 2020
The Foundation for Peripheral Neuropathy
The Foundation for Peripheral Neuropathy is a fount of research and medical information. Visit the resources page.
North Carolina Peripheral Neuropathy Group (PeripheralNeuropathyResources.com)
*CJ Holliday leads Zoom sessions at 4:00 and 7:00, second Monday of the month. Generally, the 4pm session is for information exchange and the 7pm session features a speaker.
To receive invitation and Zoom link, contact CJ at
Here is a recent discussion of Barbara’s experience with a Reflexologist.
The Western Neuropathy Association has lots of resources for neuropathy patients and caregivers.
Footnotes – First four issues
Feature Story in the Washington Post
The Washington Post never had an article about PN.
Until Now: <The 7/10/2018 Washington Post article on PN>
Despite PN’s wide-spread prevalence (estimates are in the multiple hundreds of thousands in the DC area), the Post had never addressed the topic. We engaged in a months-long effort to get an article about Peripheral Neuropathy published in the Washington Post’s weekly Health & Science section. A husband and wife team of our members, both with PN, took the lead on this.
Lynn & Bob – > BRAVO! Check out the 35 comments on the article; their variety is a suggestive indicator of our scientific uncertainty, the lack of consistent medical guidance & public lack of awareness.
At our June 2nd 2018 meeting the members wrote some supporting Letters to the Editors. Don’t know if those helped the Post make its decision, but that’s an example of the kind of bit-by-bit action we can all take to make the future better.
The Cleveland Clinic’s Peripheral Neuropathy section
https://my.clevelandclinic.org/health/diseases/14737-neuropathy
This is a terrific article for those who need a general overview of Neuropathy.
The Living Strong website has a good article called, “Neuropathy in a Nutshell“.
Johns Hopkins Medicine has a Peripheral Neuropathy section.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/peripheral-neuropathy