Peripheral Neuropathy Support Group
 of the
DC Metro Area

No Cure
No "Race for a Cure"
But Hope, Advice, Info
      Mutual Support &
      Being Heard?
Yeah, We got that.

DC Peripheral Neuropathy Support Group

<meta name="google-site-verification" content="rnynLe2vn0ze14KzMXKQbTDqutSiL2j-WGRUn6hJxUA" />

Details      
Last update: 10/29/2018

Past meetings and materials

Over the years we have collected a bunch of neat stuff.

  • PDFs: click to display. Will display on separate tab & can be downloaded. 
  • *: In these cases we can provide the original MS Office file if requested by email.
  • A linked Website's content will display on a separate tab (we don't control that content).
  • Other types of links: Will prompt to save it or open with a program (if you have one)

2018-Nov-3  We had a normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.

    Highlight: a harrowing tale of poor medical care using narrowly focused,specialists. Our member was in great pain, with a variety of problems. Being loaded, over time, by her neurologists with increasingly hard-to-handle pain meds. Faced with a recommendation to start an opioid, she decided, on her own, to instead go gluten-free for two weeks. All symptoms dramatically improved (except, of course, her PN damaged balance). Doctor's response to this good news? "You should probably resume taking the meds we recommended." What??? 

     Take-away: It's difficult within Medicare to obtain high quality, diagnostic-focused primary care. When there is a clear diagnosis of PN, care can default to specialists who may not be trained and skilled at the broad approaches needed to detect concurrent issues like gluten sensitivity.  This is exactly the insurance coverage problem the Kaplan book addresses (but does not solve)

      Other medical people can be blind too: for another reason, she spent a few days in a nursing facility. They refused to honor her gluten-free diet and she was immediately back in pain. She is now doing well, back on a gluten-free diet. Really LIKES the special bread her daughter has found (No, I didn't get the name of the product.)


      Broader Take-Away: We greatly benefit when you bring your stories.

 

LowLIght: Steve got mad at me when I dropped too deeply into my Debbie-Downer "The sky is falling" language. My wife wasn't there to punch me in the shoulder.

2018-Oct-6

We met at Floris Methodist Church in Herndon, VA. We met there last October also, but had a larger room. 20 people crowded into the room (We did not expect so many). It was a VERY lively discussion, with several new attendees.

Steve had an extensive Exercise for PN handout <PDF>.

He also distributed a fill-in form <PDF> from GeoFit that you can print to track your planned goals and activity. Most of the exercise names are recognizable.

Mike Foxworth briefly discussed the unique features of PN's Awareness issues <PDF

-
Personal Note and Call for Help - Exercise
What can a web site like this one or any web site or YouTube do for you, the reader, the patient and the caregiver to set up a reasonable exercise program? The internet info on exercise is an incomprehensible fire hose. I think home PT visits to setup an exercise program should be part of normal treatment. Can it be? Read and comment on my Oct 2018 Blog Post on Home PT visits.
-
Another Personal Note: My wife and I got the Kindle version of Dr. Kaplan's book Total Recovery and read it together on the PC (love the way Kindle will read out loud). We were very impressed by its relevance to us. Thought it could help the minority of our members with severe PN pain or other serious health problems (that includes us). I recommended it to the group at this meeting and several ordered copies. I will update this with their response (and find out if I have violated their trust) 

2018-Sept-8

We had 34 people! On one hand, that was GREAT. On the other hand, it was too many people for everyone to have much time to talk. Mike presented some recent research results relating to Chronic Pain.  [Will post once speaker notes are ready]
-
What can a Support Group do? What should it do? Our September 8th meeting raised those questions. 34 people came.
  • It allows people with something in common (often of great concern or hard to deal with) to get to know one another and safely share. That's hard to do with 34 people; a smaller group can work better for that.
  • It has a role in educating people about their shared issue. A big group has an advantage in that there may be people who can share a wide variety of experiences and levels of progress. That's especially true of Peripheral Neuropathy (or any brain or nervous system disorder) where the "Settled Science" is so unsettled. But some who come may not need to come often or long once they clearly grasp what is happening.  For that, a group needs to be just large enough so people have a chance to ask questions and be heard.
  • It can serve as an organizational framework to attract speakers or other experiences that a small group might not be able to get. For that, a large audience is better.
  • It can encourage spread of the techniques. For that, attracting and supporting leaders is critical. For that, we need to a wide variety of group sizes and makeups.

2018-Aug-4  We had a semi-normal meeting. With publication of the Post Article we had many inquiries. We expected and got new people: 11 including 2 caregivers!  We splurged on a projector rental and made a brief <Introductory presentation on living with PN> before getting down to the serious business of sharing, listening and being understood. Passed around a form (based on a widely cited 2013 article) to fill out that shows how basic symptom patterns can be used to classify types of neuropathy (most rare; the one labeled "Pattern 2" is the one most of us have). With one exception, everyone seemed to have garden variety PN. Pete brought goodies!

2018-June-2 We had a semi-normal support meeting. As we usually try to do, we went around the room and folks shared their ideas, experiences and frustrations. Peter endorsed his inexpensive TENS machine. But first, everyone wrote a personal letter to the Washington Post in support of our campaign for a PN "Awareness Article". We put a bunch in the mail.  [Update: a week later the Post printed the article. Cause & effect?]

Then we had a discussion with Carol Brooks, a genetics specialist coordinating patient education for a company testing a treatment for a rare genetic version of amyloidosis. Update: 8/24/18 - FDA has approved use of the treatment.

  • There are many types of amyloidosis. Each one causes the byproducts of the immune system (amyloid) to be incompletely broken down so they accumulate in bad places. In the brain it is implicated in Alzheimer's. But they also accumulate in and around peripheral nerves - in other words it can cause PN. The rare kind Carol's company is fighting almost always causes neuropathy, frequently PN.
  • Carol works with support groups as part of her job, was in town for a conference and offered to come by and talk about genetic diseases, the diagnosis challenges of amyloidosis (especially rare ones) and about working with support groups and caregivers when dealing with participation in clinical trials.
-->

Their website echos data from The Alliance for Caregivers that has interesting statistics on caregivers (especially for rare conditions):

- 67% say providing care is emotionally stressful
- 22% use respite services
- 53% report feeling alone [That's what our support group is designed to fight!]
- 41% report fair or poor emotional state.
- 89% find they must educate health care professionals about aspects of the disease [it's not surprising that it is this high for really rare diseases. PN is not rare - but we routinely find that health care folks know little about it.]
- 59% have exhausted their personal savings [again, higher for really rare diseases. But, again, there is little that normal medical care can do for PN, so people tend to keep spending funds to find some relief]
- 29% [only 29%?!] have plans in place for the patient's future care
- 59% of patients receive help from at least one other unpaid caregiver
- 24% of patients report unpaid care from at least one youth under age 18 [this is probably lower for most PN patients, who are older]
2018-May-5 Members and caregivers (26 in all) got rocking and moving and talking when Terry Drew and Angela Lilley (home visit specialists in Physical Therapy and Occupational therapy, respectively, from Capital Home Health in Leesburg) came to get us up and going. They showed a number of techniques and equipment aids. Some members really liked the Shiatsu foot massage machine. What great fun! They emphasized that physical activity was essential but needed to be customized for each patient and their home situation. They pointed out how unusual it was for PN patients to get a prescription for home visits. Our suggestion to the gathered members: Be different and simply insist! If you don't ask, you won't get. Doctors and insurance companies don't have PN on the front burner. Yet.

2018-Apr-7 We had a Tai Chi workshop with Cynthia Maltenfort, an excellent teacher with Sun & Moon Studio in Fairfax City (Their Web Site) who focused on how Tai Chi can help us prevent falls and new exercises, all customized for PN. This was a PAID appearance: your Pass-the-Hat taxes at work! My Bias: in addition to being a gentle and clear teacher, Cynthia has the rare ability to face the class and SAY "left" while SHOWING "right" - the effect is magical.


2018-Mar-10 FPN sponsored a Patient Conference at DC's Sibley Hospital. Reservations for attendance were open to the public and people came from all over he East Coast. There were a number of presentations about PN by researchers from Johns Hopkins. One result: offers from volunteers to participate in the PN Research Registry have increased dramatically. Including several of our members, Mike is being evaluated (which means, I guess, there is no insanity exclusion).

2018-Mar-3 Mike went through an updated version of his presentation on the science behind how PN impacts our balance and muscle strength. Addressed how and why exercise can help. Recommended for those who wonder "what's going wrong?". Our Pass-the-Hat collection was enough to pay to rent a projector for $50 and print some handouts.  <Here is a PDF of the presentation, with updated speaker notes>. If you are interested in a copy of the original PowerPoint, contact us at dcpn.group@gmail.com

2018-Feb-3 We got a BUNCH of new folks, most of whom had read about the group in The Golden Gazette. We focused the meeting on mutual support. We got more Gazette-referred people in May, so Steve is thinking about trying to contact some other local papers.
2017-Dec-2 Let's learn to talk about this!
Dr. Sarah McQuide, a health psychologist from Baltimore guided us through practical aspects of living, thinking and talking about our experience with PN. Dr. McQuide wants us to grab onto good thinking and good talking and fend off the approaches that make bad things worse.

Dr. McQuide is the psychologist with a clinical team of neurological specialists from the Berman Brain and Spine Institute that works at Sinai Hospital in Baltimore (see their Brochure)

Using these simple, clear handouts, she discussed the psychological aspects of having a chronic condition like peripheral neuropathy, coping mechanisms, when & how to talk to others about our conditions, how caregivers can help, and the importance of caregivers' psychological health maintenance.

I hope to add a blog post discussing her recommendations.
2017-Nov-4      Chronic Pain: A Mind on Fire.

Dr. Gary Kaplan of the Kaplan Clinic in McLean VA,  gave a powerful appeal for a wider approach to care, especially for patients for whom pain is a significant issue. The following slideshow tries to make a main point: Body and Brain problems appear in tandem and both must be addressed to cure either.
For more details, read and comment on my Blog Post.
2017-Oct-07: 21 patients and partners/caregivers met with Johns Hopkins Researcher Simone Thomas. Two aspects that made this special:
1. Her background equipped her with a rare ability to address our questions. Before joining Hopkins as coordinator of the PN Research Registry, Simone spent more than 20 years helping US astronauts (super-healthy and smart but not necessarily introspective about their health) understand complex aspects of human biology. Their "understanding" was vital for NASA's scientific research goals. During her <Presentation PDF>, Simone patiently accepted and answered a wide variety of questions, honoring both question and questioner, threading together accurate responses using simple language. A rare gift honed on astronauts' hard heads. We hope to have her back.
2. She works in the middle of the research world. Her answers reflected that position. Cure's elusive, puzzles rampant, research underfunded (But happening!). Big take-away: while we all wander in the fog, place a lot of your bets on exercise.

Simone runs the Hopkins portion of the PN Research Registry (PNRR).

  • It's hard to believe, but there has been no national set of "longitudinal data" (data that follows a set of people over a long period of time) on patients that have ALL types of Peripheral Neuropathy. Such data sets do exist for certain sub-types of neuropathy, but not for the broader PN population. The Foundation for Peripheral Neuropathy is the chief funding source for this one, which does have that broad focus. Hopkins is the leader of a group of research institutions that are participating..
  • What's a Registry? A registry is a set of people. The people who participate have been evaluated (medical history, test results, periodic data given, etc.) and agreed to keep giving additional data over a long period of time. Since this is a PN registry, all the participants are relevant to PN (like, they have it!)
  • So, How do I participate? This web page on the FPN site has details. The FPN "Patient Conference" in March 2018 resulted in more volunteers and there are tentative plans to hold another Patient Conference in 2019 
--->

Personal Note: In her presentation Simone repeatedly emphasized exercise. As noted elsewhere on this site, there are no treatments for nerve death (numbness). Treatments for pain have results that are spotty and poorly understood, Perception of "pain" always involves higher brain processes, and the brain is not well understood (yet). For some, pain treatments,even adjusting for side effects, are worth it. In general, however, It is difficult to distinguish "relief" from "placebo". This leaves exercise as the only relatively well-supported mechanism for treating general peripheral neuropathy (and even that evidence is not ironclad). Simone urged me to 

  • Increase my vigorous exercise schedule from 4 days to 6 days per week. Vigorous exercise improves blood flow and there is evidence that poor blood flow to legs may be a factor in nerve death.
  • Vigorous, but not extreme. Cruising @ heart rate=120 for 20 minutes is better than peaking at 145 and pooping out at 10 minutes.
  • Daily balance and strength exercise is vital to train the connections between the brain and our deteriorating nerves. This is the appeal of Tai Chi.
  • So we need both vigorous and balance/strengh exercise. Almost every day. One is not a substitute for the other.
2017-July-21 - Our Pot Luck party at Peter's house: we had fun and discussed a proposed approach to increasing and maintaining public support for progress on PN.  Mike Foxworth, in his role of disturber-of-the-peace, made a presentation on something he (rather grandly) calls <The Neuropathy Network Plan PDF>. The key ideas:
  • Our most critical need is awareness and coordination
  • Neuropathy is an element of MANY diverse diseases,
  • Every disease is different and many (but not all) are powerfully supported by their own patient communities, charities, support groups and research projects .
  • The "Every Disease for Itself" approach allows extraordinary inefficiencies when the fundamentals of neuropathy are common to all.
  • A single foundation (like the Diabetes Association or the American Cancer Society) to incorporate all these neuropathy-related diseases may be impractical and unneeded.
  • The proposed solution is a "Coordination Center" with rules that encourage direction and order in what is now a rather chaotic environment. 


2017-Jun-1 - Our June 3rd Meeting that wasn't: Ever wonder why PN research progress is SO SLOW? Other than being the least-known, wide-spread, big-impact health problem in the US and having only tiny amounts of research funding, it also suffers from severe vagueness in tracking patient progress. Dr.Ted Burns, a Neurology researcher from UVa, has been helping to lead a multi-university project to implement a simple, cheap-to-use, but experimentally validated tool that YOU (the patient) and THEY (the doctors) can use to track progress (or lack thereof) as YOU try various treatments.  Unfortunately, Dr. Burns became ill and was unable to come. But we talked about it anyway. We hope to reschedule. In any case:

  • Checkout/print & fill out the "tool"; their Quality of Life form
  • Or look at our (totally unauthorized) multi-date version, suitable for refrigerator posting to track your changes. We are trying to induce some High School students to write a Smartphone app to keep track (for "free").
  • Read the research paper [OK, it's a bit dense] or My highlights
2017-April-1 - Dr. Kathleen Griffith, Nursing Professor at GW University, discussed chemotherapy-induced PN and results of her on-going study of exercise for those patients. <Presentation PDF> and <How you can join the study PDF>. She also recommended this <Review summarizing research on Exercise and PN>, which concluded:
  • Overall, balance training appears to be the most effective exercise intervention.
  • Focusing exclusively on strength (or endurance and strength combined) has lower impact.
  • For metabolically induced [i.e. diabetic] neuropathy (by far the most common type), endurance training plays an important role.
  • NOTE: context support: Mike's presentation on muscles & PN (see notes on 2018-Mar-3 meeting) makes the point that the fastest muscles (needed for peak strength) must be exercised to some degree to slow progression of PN weakness. A balanced program will have some of this. Simone Thomas emphasized (see notes on 2017-Oct-7 meeting) that high tempo exercise is needed to encourage blood flow. Again, a balanced approach is needed.


2017-Mar-4 - Preliminary results of study on effects of diet & exercise on PN symptoms. Two U. MD coordinators of patient participation in the study also shared insights on how patient attitudes affected study participation and (hence) results. Will post report when released.


2017-Feb-4 - We filled out and discussed the new Quality of Life "quick assessment" form (see 2017-6-1 meeting, above)


2016-Dec-3 Lee Perry of Driving Aids Development Corp (DADC) on adding hand controls to autos. We drove one around the lot. <Their Website>. Most ordinary cars can have hand controls added. The cost, which can be modest, depends on the car and the choice of functions to be added. In most cases, a modified car can be driven in both the normal manner (such as by a caregiver or by a patient wanting to proactively obtain experience) or by using its hand controls. Mr. Perry holds many patents and is one of the country's leaders in this technology. One of our members has DADC controls and is quite pleased. Two others are planning to get controls installed.


There are other hand-control vendors. We've not had an opportunity to meet with them.

--->
Personal Note:
  • Hand controls have a "cottage industry" feel to them.  As far as I know, there are no national or world standards for them, such as safety or performance specifications (like minimum braking distances or reaction times using a hand brake). In fact, DADC is a small business operated out of Mr. Perry's home in Vienna, VA.
  • Departments of Transportation (such as Virginia's) do have regulations that specify things like restrictions on driver's licenses that specify that the operator must have certain hand controls to be allowed to drive.
  • Potential adopters must work with their auto insurer to see what coverage is available.
  • Lee Perry went over some of this at our support group meeting, but anyone considering use of this technology should contact their vendor and begin a serious conversation.
  • I suspect the final call in many cases will be made by a DOT driving inspector who watches how well the disabled person drives when using one of these modified cars. While the devices are easy to use, there are special training classes to become evaluated and certified.
  • "Driving a car or van with push pull hand controls should only be done by those who have had sufficient training by a Certified Driver Rehabilitation Specialist (CDRS). "
2016-11-5 VCU research neurologist Dr Jason Wong answered a LOT of questions <Notes PDF>. We hope to have him back some day.
--->
Personal Note: I've always found it puzzling that PN seems to continue even though its "cause" is no longer present. I used to be pre-diabetic but now am not - PN started back then and continues now. It seems mysterious. Is PN like going over a cliff - one step more and all is lost? According to Dr. Wong, this is a familiar story and a familiar belief. He thinks this belief is wrong. To paraphrase: "If nerves are dying, something is killing them. Remove the something (the cause) and the nerves will stop dying. They may never regenerate, but they will stop getting worse." In his view, we often don't REALLY know what the continuing cause is. Or, rather, we see an association but we don't know what is going on under the covers. Not a global mystery. Mostly just ignorance about the grubby case-by-case details. According to this logic, since there are effective treatments for some cases that stop PN progression, there should be treatments for all the other cases, too. If we could find them.

Even if the tests (there are LOTS of tests) do not show it, maybe my pre-diabetes or something is still there, thrumming in the background, continuing to kill my nerves. Maybe there is something going on that could be stopped (and PN progression halted) if our ignorance was not so deep.

Or maybe some wonderful single discovery will stop all PN.

2016-July We had a Pot Luck Picnic (indoors of course) where we started a multi-meeting discussion of the following materials:

(1) What we, as group members, can do. <PresentationPDF><PowerPoint>

(2) PN effects on muscles (An updated version was presented at the 3/3/18 mtg).


2016-Jun-4 Joe Trepenning, of Infinite Technologies (local provider, <Website>), discussed flexibility exercises to AVOID (or minimize) use of ankle braces to treat "drop foot".  Drop foot (<Described in this PDF>) is a common symptom of PN since the nerves/muscles in the feet and lower leg tend to die/degrade first. Drop foot is one of the most dangerous aspects of PN, because it risks tripping and falling. Braces to help with it are called "Ankle Foot Orthotics" (AFOs). 
        Insurance, like Medicare, will often pay for an AFO; they're the standard "quick fix." Expensive to Medicare because they are custom and need fitting. Cheap to the doctors because paperwork is minimal.  The Medicare standard AFO is a completely inflexible piece of hard plastic that fits in your shoe and straps to your thigh. Joe said use of standard AFOs should be minimized or avoided, if possible, because of their downstream health consequences to your mobility, balance, gait and knees.
       Joe's company, along with companies like Hanger, fits and sells AFOs. But he recommends physical therapy exercises be tried first or concurrently to strengthen the affected nerves and muscles. The PDF cited above describes some of these exercises. If an AFO must be used, he compared standard types (with a fixed ankle angle) to newer flexible kinds that are safer and allow walking to be somewhat more natural. Since Joe's visit, we have seen references to other new types:
  • <the Helios> is an example of custom devices designed to help preserve the body's natural "springiness". Normal walking minimizes fatigue by taking advantage of the body's ability to preserve energy from one step to the next. These types of devices are designed to make safe walking less fatiguing by preserving some flexibility.
  • <FootUp by Ossur> For moderate cases, where there is still some ankle strength, over the counter, less expensive (<$100) solutions are available using strong elastic straps that pulls your foot up but still allows the flexibility to walk nearly normally. An example is FootUp by Ossur, available online in forms for use with or without shoes.

--->

Personal Note: In 2013, when I got really serious about Physical Therapy for my PN, I started working very hard on almost all the exercises. BUT: I failed to grasp the significance of the drop foot exercises. I did not give them the time and diligence they deserve. Started tripping. Got a standard AFO. Hated it. Painful, limiting, hard to use. Made walking a dangerous nightmare. But I still didn't do my drop foot exercises. Time passed and the drop foot got worse. NOW, I do my drop foot exercises every day and try variations frequently. I'm mostly keeping drop foot at bay. I don't use my AFO. I hope I never have to.

I sometimes wish life didn't keep throwing me these intelligence tests.

In June of 2018 I got an Ossur FootUp and my walking is much improved (or, at least, safer). I also found a YouTube video that showed a new exercise, where I use a cane handle to pull up the foot front and, isometric-like, try to keep it from falling back down. I also try to push down hard on my knees while raising my heels. Not sure why (no scientific claims here), but my foot strength (toe and heel raises) seems to be improving (from bad to less bad). My water aerobics partners look on in amazement as I am almost able to lift half-way up on my toes while half my body is supported by the water and I wildly wave my arms in my struggle not to fall backwards. I take little victories where I find them.
2016-Feb-6 Victoria Wood, a nutritionist & specialist in Functional Medicine prepared and presented these materials on links between Nutrition and PN
  • <PresentationPDF>*
  • Supporting Resources: lists of testing resources and anti-oxidant foods <PDF>
  • Examples of recent studies linking nutrition to PN <PDF>
  • How drugs affect nutrition levels, though not specific to PN <PDF>
  • The Medical Symptoms Questionnaire (MSQ): a tool used to evaluate patients.<PDF>

2015-Jun-4 Dr. Amy Stone, a neurologist with the Neurology Center of Fairfax Virginia, led a Q&A <NotesPDF>*

 

2014 Discussed a 9-page alphabetical list/evaluation of PN "treatments" (some legit, some probably not) tried by members of the Western Neuropathy Association <TreatmentsPDF>* <WNA Website>

 

2014 Presentation on the Virginia Assistative Technology program and some of the equipment available <PDF>*

 

2013-Dec-15 Hopkins researcher and scientific advisor to the Foundation for Peripheral Neuropathy, Dr. Hoke, presented analysis of research and the orphan status of our disease <PresentationPDF> (UPDATE May 2018: Dr Hoke also made a presentation at the March 2018 Patient Conference - I will try to get an updated version of his presentation.)

 

2013-Oct-12  Hopkins' Dr. Cornblath, a leading PN researcher, discussed PN and had Q&A <Notes PDF>*. Suggested text for appeal to Congress for more research funds <Sample RTF> More info on his website <Website>

 

2012-Apr-14 Georgetown's Dr. Sirdofsky discussed PN and had Q&A <Notes PDF>

 

2011-Dec-15 NeuroNOVA neurologist Dr. Zillox's analysis of treatment options for PN and related pain <PresentationPDF>*

Some other useful links 

- Three introductory descriptions of PN from Cleveland Clinic, Neuropathy Assoc & NY Times <PDF>

- Some suggested exercises <PDF> and massage techniques <PDF>

- Presentation on Drop Foot exercises and NEMS <PDF>

- An often cited New York Times Magazine article on PN pain. <My Pain, My Brain>