Past Meetings
2024 Meetings
January 6 – The PNSN January meeting was held via Zoom. It was a general discussion meeting.
Summary – To start the year, we focused on positive energy that could propel us toward better health.
Speaker bio – No speaker.
Presentation support – N/A.
Chat – is here.
Video recording – will be posted here.
February 3 – The PNSN February meeting was held via Zoom. It was a general discussion meeting.
Summary – We spoke about a variety of topics, including area providers, food supplements,
Speaker bio – N/A.
Presentation support – N/A.
Chat – is here.
Video recording – will be posted here.
2023 Meetings
December 2 – Our December meeting was held via Zoom. Anne Wilson, MA, MSN, was our guest speaker.
Summary – Mrs. Wilson spoke on coping with the holidays, including limiting stress and seeking help.
Speaker bio – is here.
Presentation support – is here (PDF).
Chat – is here.
Video recording – will be posted here.
November 4 – Our November meeting was held via Zoom. It was a general discussion meeting.
The chat session from that meeting is here.
Wrap Notes are here.
September 9 – The meeting in September focuses on improving balance and the dangers of falling. We used a video for a past meeting.
Jaime Cruz and Colin Phillips, Physical Therapists, shows us some basic exercises that they use to help patients retain their ability to maintain their balance. These exercises are very simple to learn and require nothing more thanmber 20023 a dining room chair. November 4 –
The videos from the meeting and other details will be posted soon.
We also showed and discussed the Bob and Brad video on falling.
May 6 – Jen Mirsaidi, from NaborForce, and Kurt Gray with Seniors Helping Seniors, are our featured speakers. They operate fee-based help and are available on a one-time or scheduled basis.
Jen’s video interview is here and the NaborForce brochure is here.
The Senior Helping Seniors brochure is here.
Here is the chat session from the meeting:
14:29:29 From Peripheral Neuropathy Support Network to Everyone:
If you have questions for our speakers, after the meeting, just email Pat at leader@dcpnsupport.org
14:31:50 From Peripheral Neuropathy Support Network to Everyone:
How do clients communicate with caregivers in “real” time
to work out changing situations?
14:32:14 From Peripheral Neuropathy Support Network to Everyone:
How do you escalate issues that inevitably happen?
14:33:07 From Peripheral Neuropathy Support Network to Everyone:
Is Seniors Helping Seniors caregivers vetted, bonded, and insured?
14:33:56 From Peripheral Neuropathy Support Network to Everyone:
Can we request individuals request a specific caregiver that we like?
14:34:42 From Peripheral Neuropathy Support Network to Everyone:
What happens when a caregiver doesn’t work out?
14:35:12 From Peripheral Neuropathy Support Network to Everyone:
What about language issues? Translation?
14:39:19 From 486738 to Everyone:
Could Kurt put up his screens again please, did not get screen shot
14:40:08 From 486738 to Everyone:
The last two
14:41:18 From 486738 to Everyone:
Sorry, it is the last three screens
14:48:39 From R.H. to Everyone:
What are your costs per hour? Is a minimum hours required?
15:03:33 From J.H. to Everyone:
I am a new member from the Detroit area and am 61. I am not in need o the service being discussed. I have used Visiting Angels in Detroit for my father about 5 years ago, and am familiar with the service being presented.
15:20:19 From Mike Foxworth to Everyone:
my mother lived in Medford Lees
15:22:14 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
Home
15:24:47 From Pat Gualtieri to Everyone:
Our website: PNSNetwork.org. Click on JOIN to guarantee receiving our monthly invite and Zoom link
15:24:55 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
Penn Medicine – doctors name is Baer. Highly recommended says Barry K.
15:25:47 From Glenn Ribotsky to Everyone:
15:27:27 From B.B. to Everyone:
I am looking for Neuro-ophthalmologist. My wife had one in McLean but has retired. Any referrals would be appreciated.
15:29:09 From Pat Gualtieri to Everyone:
If you think you did not receive the invite check that it’s not in your Spam folder. Use “tech@dcpnsupport.org” as your search term
15:30:39 From J.H. to Everyone:
Phil Bettendorf
15:32:33 From Glenn Ribotsky to Everyone:
15:41:39 From Glenn Ribotsky to Everyone:
Here is the list of Western Neuropathy Association online support groups for May: May 13, 2nd Saturday Support Group
11:00am-1:00pm PST/1:00pm-3:00pm CST, Meeting ID: 856 7106 1474, Passcode: 114963 Host – Katherine Stenzel, klstenzel@hotmail.com
May 17, 3rd Wednesday Support Group
10:00am-noon PST/12:00pm-2:00pm CST, Meeting ID: 833 4473 0364 / Passcode: 341654 Host – Glenn Ribotsky, glenntaj@yahoo.com
May 27, 4th Saturday – Open Discussion
11:00am-1:00pm PST/1:00pm-3:00pm CST, Meeting ID: 851 7949 9276 / Passcode: 159827 Host – John Phillips, johnphillips.wna@gmail.com
15:43:08 From Pat Gualtieri to Everyone:
Fr chemo induced PN; Support Group that meets on the first Wednesday of the month at 1:00 (ET). The leader is Cindy Tofthagen: tofthagen.Cindy@mayo.edu
15:43:34 From Brenda Cheadle to Everyone:
My daughter’s oncologist in Dallas had her hands and feet bagged in ice during infusions when one of her types of chemo was known to result in PN. She had chemo for over 6 months – plus surgery, radiation- still in treatment 20 months later- and did not get PN.
15:45:45 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
15 minutes to end of meeting
15:46:09 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
Patrick has his hand up.
15:48:00 From B.B. to Everyone:
OK Thanks. I will try that
15:48:18 From helaine greenberg to Everyone:
Reacted to “My daughter’s oncolo…” with 👍
15:49:54 From Glenn Ribotsky to Everyone:
Also, some of the people who treat multiple sclerosis may have extensive training in neuro-ophthalmology. They often have considerable experience with optic neurology as a symptom of MS.
15:51:17 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
Diet is very important.
15:56:18 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
5 minutes to end of meeting
15:57:52 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
We need volunteers to help with sharing your PN experience and we are forming a task force to UPGRADE our capabilities.
15:58:08 From Peripheral Neuropathy Support Network to James & Flo Stanley(Direct Message):
Overtime starts at 4pm.
16:11:18 From Rebecca Hotop to Everyone:
Bye all….
16:13:04 From P.B. to Everyone:
Thank you everyone. Great group. I need to drop. Appreciate the insight. Phil Bettendorf / Detroit
2022 Meetings
2022 Meetings
January 8 – No speaker but a lively discussion on Periperhal Neuropathy, its causes and treatments.
February 5 – Dr. David Clarke was our guest speaker. Recap of the meeting and video are here.
March 7 – Chuck and Donna shared their adventures while hiking the U.S. National Park Systems. Video and details about the meeting are here.
April 2 – Dr. Mary Eicher shared some of the complexity of diagnosing Periperhal Neuropathy. She passed out two very informative documents, which you can download. Video and handouts are here.
May 7 – The Cannibas Panel, moderated by Rich Davis, featured members of our group talking about their experience with medical cannibas. The video and handouts are here.
September 10 – Moderated by Rebecca Hotop, we shared an edited version of a recorded presentation by Joe Ponsi a certified Podorthist and Home modification specialist (made at the June meeting of the Pittsburgh Area PN Support Group). Joe addressed shoes, shoe fitting, foot care, and a variety of appliances and accommodations to aid PN patients. Afterwards, there was an extensive group discussion about tools to deal with foot drop. Then another discussion about PN pain. See more details and the video is here: Ponsi’s video presentation.
December 2 – Dr. Maryam Dadkhah, a board certified nutritionist on obesity and weight in the Washington, D.C. area, spoke to us about the impact of lifestyle choices on Peripheral Neuropathy. The presentation is here (in PDF format) and the video is here.
Bethesda/Chevy Chase December 17 monthly meeting – Here is the chat session from this meeting, with several very useful links to medications and providers.
2021 Meetings
2021 Meetings
January 2 – Lucy Dunning and Jenevieve Wardell from the Blue Sky Counseling Center spoke about Cognitive Behavorial Therapy for pain control. Video is here.
February – Joel Minton, owner of Mindful Life Center spoke about mindfulness.
March – No speaker. We have a good discussion about Zorms and ways to cope during the pandemic. Video is here.
April – Stanley Kim, CEO of WinSanTor spoke about his company’s work
May – Heidi Garvis, CEO of Caring Considerations
June – No speaker.
July – No meeting (summer hiatus)
August – Jaymee Cruz, DPT, DPT, OCS and Colin Phillips, DP, DPT, OCS,, of PT Solutions showed us some helpful exercises to keep fit and flexible. Recap is here, including video link.
September 11 – No speaker, but we had a general discussion about Neuropathy.
October 2 – Orthotist Joe Terpenning, who is a founder of Infinite Technologies, gave a presentation on the foot, what can go wrong, and how to preserve mobility and balance. Click the image below to see the video.
November 6 – Dr. Brett McCray spoke to the group on Hereditary PN, such as Charcot-Marie-Tooth, and compared it to non-hereditary PN. McCray is Assistant professor of neurology at Johns-Hopkins Medical Center.
Dr. McCray’s research seeks to understand and treat peripheral neuropathy with a particular focus on hereditary neuropathy and Charcot-Marie-Tooth disease (CMT). He believes that some of the lessons learned from studying CMT might ultimately help in the treatment of non-genetic forms of neuropathy. While forms of CMT are due to a single genetic change, he believes there are likely to be a collection of genetic risk factors that contribute to cases of “idiopathic” neuropathy. In addition, some recent research suggests there might be important overlaps between problems that arise in CMT and non-genetic forms of neuropathy.
2020 Meetings
2020 Meetings
May 9 – via Zoom, our speaker was Mark Vieth, who is the Foundation for Peripheral Neuropathy’s (FPN) congressional lobbyist. The FPN is making steady progress opening Congressional eyes to PN’s existence. As we all know, with PN, Awareness is Job One. We learned how to help, start inspired, and seize hope.
June 5 – The purpose of the meeting was to discuss a PN network that could support several local groups in the region, both for the present (during the pandemic) and beyond.
July 18 – Bill Reddy, licensed acupuncturist, ihpc.org, spoke on the history and training in the U.S. on the use of acupuncture in the treatment of PN
August 8 – This meeting was aimed at people discussing their unique issues and successes, with various treatments.
October – We didn’t have a speaker in October, but discussed various treatments and technologies. See the video of the entire meeting here.
2019 Meetings – Prior to July 1
Dec 2 – Dr. Sarah McQuide, Health Psychologist, coping techniques for patient & caregiver
Jun 1 – Linda Watkins discussed the issue of falling and its serious ramifications.
May 4 – Heidi Garvis, talked about elder care planning and issues relating to housing and legal aspects.
Apr 8 – Lou Mazawey, Foundation for Peripheral Neuropathy, discussed PN research and support.
Mar 2 – Mike Foxworth led a group discussion on better organization for the group.
Feb 2 – Susan Tipton lead a discussion on various issues.
Jan 5 – We watched a portion of David Eagleman TED Talk video on Sensory Substitution and discussed his findings.
2018 Meetings
Nov 3 – Reg. mtg. Specialist Horror Story
Oct 6 – Regular meeting. Awareness Issues & Exercise. Kaplan Book.
Sep 8 – BIG crowd! Discussed Chronic Pain. Purpose of support groups.
Aug 4 – Reg. mtg. 11 new. Introduction to PN & diagnostic table.
Jul 28 – Pot Luck Picnic at Peter’s house.
Jun 2 – Sharing, letter writing, amyloid & PN. Caregiving site & statistics
May 5 – Physical Therapy & Occupational Therapy experts. Home Visits to customize exercise/living with PN
Apr 7 – Tai Chi Class customized for PN patients
Mar 10 – PN Patient Conference at Sibley Hospital
Mar 3 – Presentation on muscle weakness
Feb 3 – After Golden Gazette notice, 11 new people found a place to talk. Need Ad Placement Volunteer!
Jan 6 – Canceled – too much cold & ice (for us)
2017 Meetings
Nov 4 – Dr. Gary Kaplan, brain inflammation as key concept in treatment of Chronic Pain Syndrome
Oct 7 – Simone Thomas, Participation in the Hopkins PN Research Registry.
Sep 9 – Regular meeting. Discussed the new FPN working group focused on increasing public awareness
August – No meeting (but busy!)
July 26 & June 15 – Formation of FPN’s Awarene ss Working Group in Washington meetings
July 21 – Pot Luck Party at Peter’s house. Presentation on a “Business Plan” for a Neuropathy Network
Jun 24 – Tai Chi workshop in Fairfax City. First use of Pass-the-Hat funds for this type of thing.
Jun 3rd – Regular meeting. (Speaker was ill). Discussed Quality of Life Forms for measuring treatment effects.
May 6th – Discussed our
Apr 1st – Speaker:Exercise with Chemo PN
Mar 4th – Speaker: patient participation in a study of effect of diet & exercise
Feb 4th – Discussed PN Survey & new Quality of Life “quick assessment” form
Jan 7th – (Canceled due to weather)
2016 Meetings
Dec 3rd – Holiday Party; Speaker discussed & demonstrated car hand controls.
Nov 5th – Researcher discussed current thinking about causes and treatments.
July Pot Luck Picnic. Presentation on what we can do to help Awareness of PN
June 4th – Treatments for Foot Drop. Exercise versus devices.
Feb 6th – Nutrition and PN
2015 & Earlier
2015-6-4 – Q&A with Neurologist Amy Stone
2014 – Reviewed Document from WNA evaluating a wide variety of treatments.
2014 – Virginia’s Assistive Technology program to help people disabled by PN
2013-12-15 – Presentation by leading national PN researcher, Dr. Ahmet Hoke.
2013-10-12 – Q&A with Hopkins clinical research neurologist Dr. David Cornblath.
2012-4-14 – Q&A with Georgetown neurologist Michael Sirdofsky
2011-12-15 – Q&A with Dr. Lindsay Zillox
Three descriptions of PN
Exercise & massage suggestions
Foot Drop exercises
NEMS units