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

Past meeting details and materials

Past Meeting Highlights & {Index}
Over the years we have collected a bunch of neat stuff.
  • PDFs: click to display. Will display on separate tab & can be downloaded. 
  • In most 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 open in a different tab on your browser. Typically, you can download the file being displayed on that separate tab.
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2018-Dec-1  Our Go-To Yoga/Tai-Chi angel, Cynthia Maltenfort, came to give us an inspiring lesson and introduction to Chair Yoga.  Folks in the above picture have a variety of physical problems and it really helps to have a teacher who has used her knowledge and craft to deal with her own physical challenges. Maybe it should be enough to be TOLD to do something. For most of us, it usually isn't. We could all feel Cynthia's "I've been there" conviction that this stuff really works. We're a support group - empathy is an essential element. It doesn't hurt to have a friendly and technically proficient teacher in the bargain. And the mesmerizing sounds and incense at the end left us all in a relaxed and joyful mood.

People with PN (as patient or caregiver) have had to adapt. Use of the word "chair" in "chair yoga" signals that there remain viable paths to wellness even in the storm called Peripheral Neuropathy. This afternoon I will be attending my first chair yoga class at our local studio. 

Cynthia took us through a famous sequence called "The 8 Brocades." You can access videos of standing versions on her website <https://www.theartofqi.com/8-brocades/>. Her website also has an "about" page, where you can read about the extensive educational process she has used to become the astounding person we saw. Cynthia usually works out of the Sun & Moon studio in Fairfax City; their <website> has schedule information.

As a warm-up, Mike made a 5-minute pitch on the importance of choosing an exercise mode YOU ENJOY in order to ACTUALLY DO the exercise. See his <blog post> on the subject.
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Opinion: Therapies are a frequent topic at our meetings. Unlike most "new" therapeutic offerings with evaluation periods measured in months or years, Far Eastern practices such as Yoga, Tai Chi and acupuncture rest on testing periods measured in millennia. Western medical & research approaches, developed over the last 600 years, have struggled to separate wheat from chaff in collections of medical wisdom. Many therapies are difficult to tackle with double-blind randomized controlled trials. Astrology, Voo-Doo and blood-letting have been rejected. Others, such as heart stents and arthritis scraping are teetering. Our ability to understand Eastern techniques like Yoga rests on our ability to understand the peripheral nervous system (PNS) and its interaction with brain and the rest of the body. That's the  problem: Our knowledge of the diffuse PNS is relatively primitive compared to our knowledge of any other bodily system (including the brain). Our relative ignorance makes it hard to see HOW these Eastern techniques work.

Millennia of experience suggests we should keep looking and testing. With slim options, PN patients might want to volunteer first. 
2018-Nov-3  We had a normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.
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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). Neurologist specialist’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).  See the discussion of Kaplan and Chronic Pain in the write (below) from our Nov 2017 meeting.  You could also read and comment on my blog post on this.

Side Note: 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 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.

 Low-Light: 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 on the GeoFit form are recognizable.

Mike Foxworth briefly discussed the unique features of PN’s Awareness issues <PDF>     
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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. Gary 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)    
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2018-Sept-8  We had 34 people, many responding to the Post article! 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]        {Top}  {2018}    {Index}
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What can a Support Group do? What should it do? Our September 8th meeting, with 34 in attendance, raised those questions.
  • 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. Small may be better.
  • It has a role in educating people about their shared issue. A bigger 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 want to come often once they feel they understand 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 provide the organization needed to effectively obtain and use volunteers
  • It can encourage spread of best practices. 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 are be used to classify types of neuropathy (most types are 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.          {Top}  {2018}   {Index}
The amyloidosis 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 “Why Am I Losing My Balance?“. 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.  Really, we could use some help placing updated ads in local papers.     
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 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.     
2017-Nov-4  Chronic Pain: A Mind on Fire.
Dr. Gary Kaplan of Georgetown U. Med School and 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: When Body and Brain problems appear in tandem, both must be addressed to cure either. Dr. Kaplan introduced  us to the concept of “brain inflammation” to us. To see a recent example of how failure to think in these terms can damage us, check out the horror story we heard at the Nov 2018 meeting

Important distinction: Chronic sensation versus Chronic Pain Syndrome.
  1. Chronic sensation issues: Almost all PN patients with the common pattern of lower leg problems report recurrent discomfort. Terms like “numbness”, “pins & needles” are frequently used. [I’m not familiar with the rarer types – they may also be a chronic source of discomfort.]
  2. We rarely know the source or exact nature of the discomfort in PN. They could be signals to the brain independently generated by the cells in the legs, perhaps responding to the PN disease process. They could be a result of the brain “checking on” the body. Or something else. In any case, they are processed in the brain as discomfort or pain.
  3. For the majority, this recurrent discomfort is not the major source of concern. When the brain does any work, it is stressed. For most, this extra PN-related “pain” workload can be handled without a major life impact. If treated at all, it is treated with small amounts of mild meds (such as Neurontin) or other non-invasive management strategies. We don’t know enough about the brain or individual differences to say why some therapies work or not. There are LOTS of candidate treatments. Distinguishing between physiological effectiveness and placebo has proved to be very difficult.
  4. For a significant minority, however, these chronic sensations are a contributor to Chronic Pain Syndrome (CPS). How large a minority is in dispute (anywhere from 7% to 40%!) because of the difficulty defining and diagnosing it. CPS is a major threat to the patient’s life, impacting all aspects of a person’s well-being. Medical researchers have struggled for decades to define and treat it. Opioids were used, but their long-term use is now discouraged. In recent years there has been major progress in understanding the physical nature of the brain, how the brain and body communicate via the nervous and immune systems and the mechanisms at work in CPS. It is increasingly clear that most cases are a result of “comorbidity” – the presence of two or more chronic disease processes that together overwhelm the brain’s ability to cope and repair itself. Illness, infection, depression, trauma, financial stress, social problems, isolation and on and on. As described by Dr. Kaplan and others, CPS is a disease process IN THE BRAIN, characterized by untreated brain inflammation. Treatment will likely fail if any significant source is ignored.   See the example we heard about at the Nov 2018 meeting.
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:
First: 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.   
 Second: 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 NASA 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.
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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 (FPN) 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 Conferences” in March and July 2018 resulted in more volunteers and they are now close to having the planned number of participants          {Top}    {2017list}   {Index}
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 with their 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.
  • Having a single foundation (analogous to organizations 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.    
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2017-Jun-1  Did the Treatment help? How do you know? Measuring via Quality Of Life. 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.  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 tried to induce a local High School  to write a free Smartphone app to keep track, as a student project. Still a good idea, but no cigar (yet); anyone have a grandson/daughter who wants a science project?
Read the research paper [OK, it’s a bit dense] or My highlights        
2017-May-6 We discussed the results of our survey. In this blog post, the results indicate that our members were most concerned about muscle weakness and balance.      
                                          {Top}    {2017list}   {Index}
 017-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.
  • 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.
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NOTE:  Mike’s presentation on muscles & PN (see notes & links in 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 young 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.
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My Take: It is very difficult to actually conduct Research Studies like this. The design is fine, the controls fine. The problem with something like exercise is the people. Did the people eat what they said, exercise the way they said? Our two young speakers were working hard to motivate their research participants to conform to the test requirements. I wrote a blog post on this topic – perhaps the question should be  “… effects of diet & enjoyable exercise on PN symptoms.”
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) discussed 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. I got mine installed in 2018 and am slowly adapting to their use (starting with use of the brakes); currently I still drive OK without them. (By the way: get an optional steering knob – steering is complex without one.)

There are other hand-control vendors. We’ve not had an opportunity to meet with them.  If any of you have used them, please use our contact form to let us know of your experience.                                                   {Top}     {2016list}   {Index}
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Personal Note on Hand Controls:       
  • 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.
  • Long term service of the controls is probably tied to the original vendor.
  • 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.
  • “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). “
  • 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, it takes practice to become good at them. I suspect this practice will be easier if you get the controls before your disability is so profound you are unable to drive using normal controls.  There are special training classes to become evaluated and certified.
  • For normal auto repair & service, local car dealers are usually familiar with hand controls added to their own car models. For internal"shop safety" reasons, dealers prefer “push to brake, pull to accelerate” configurations (like those normally sold by DADC).
  • Newer cars are equipped with many “minor” airbags, such as under the steering wheel. . Some may have to be locked out to allow installation of hand controls.
  • A steering wheel mounted "steering knob" is recommended. I have found it difficult to train without one.
  • Controls are usually brake only. The cost to add an accelerator control is usually modest, but given the additional complexity of training and use, it may make sense to start by putting in only the brake hand control. You may never need to use an accelerator control.
  • Using BOTH brake AND accelerator hand controls is much more complicated than using brake alone. If the control is added to use the left hand (the normal configuration), setting the turn signal is more tricky when the left hand its normally employed to control both brake and and accelerator. Since “foot drop” (weakness in the muscles that are used to raise your toe) is the primary reason to need an accelerator control, it pays to do your foot drop exercises faithfully.
  • If an accelerator control is added, there should be a means to “lock out” its use until you are ready to train on use of both brake and accelerator.
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2016-11-5 VCU research neurologist Dr Jason Wong answered a LOT of questions <Notes PDF>. We hope to have him back some day.

His response to my question: 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 were 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 – hot out there!) where we started a multi-meeting discussion of the following materials:
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 the toe of your foot up but still allows the flexibility to walk nearly normally. This brand and others are available online in forms for use with or without shoes.                 {Top}    {2016list}   {Index}
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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.    
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2016-Feb-6 Victoria Wood, a nutritionist & specialist in Functional Medicine <website> prepared and presented these materials on links between Nutrition and PN

She emphasized that nutritional supplements CAN have value IF they address SPECIFIC nutritional deficits for on-going medical issues identified by medical doctors.  She was extremely critical of normal over-the-counter products both because they were not tailored for the problem (used wrong amounts) and typically used very poor or unknown quality (i.e. cheap) ingredients. She distributed and discussed a number of handouts:
  • <Her Presentation PDF>*
  • 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. This would normally be used in conjunction with a doctor or diagnostic specialist.<PDF>      
One of our members later obtained her services and was quite pleased.
in 2014 we:
  • 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> 
  • Received a Presentation on the Virginia Assistative Technology program and some of the equipment available <PDF>    We hope to have them come back again soon.

We have also collected a number of other miscellaneous helpful items

Between 2011 and 2015 we had presentations and Question & Answer sessions with a number of area neurologists and researchers.  Steve Klitzman made notes on these meetings and we have some presentation copies, below.  I hope to put together a joint document integrating this information, when I "get a round toit".

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

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>*. He provided a 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. Lindsay Zillox’s analysis of treatment options for PN and related pain <PresentationPDF>     
                                      {Top}    {2015list}   {Index}
with links to special material
2018
2017
  • Dec 2 – Dr. Sarah McQuide, Health Psychologist, coping techniques for patient & caregiver
  • 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 – Reg. Mtg. Discussed the new FPN working group focused on increasing public awareness 
  • August – No meeting (but busy!)
  • July 26 -& June 15 Formation of FPN’s Awareness 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 – Reg. mtg (Speaker was ill) Discussed Quality -of-Life forms for measuring treatment effects.
  • May 6th – Discussed our Survey results.
  • 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
2015 & Earlier

Topical Index

What is PN, anyway?
  • 2015-Jun – Q&A with Neurologist Amy Stone
  • 2013-Dec – Presentation by leading national PN researcher, Dr. Ahmet Hoke.
  • 2013-Oct – Q&A with Hopkins clinical research neurologist Dr. David Cornblath
  • 2012-Apr – Q&A with Georgetown neurologist Michael Sirdofsky
  • 2011-Dec – Q&A with Dr. Lindsay Zillox
Living with PN
The Science
PN – Pain Treatments
PN & Chronic Pain Syndrome
Exercise & Physical Therapy
Awareness & Support Group
Caregiving
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