Since Johnny Cash was mentioned--
 

--in the Holiday celebration thread, thought I'd start a new thread here about an issue dear to my heart, and I'm sure important to others . . .

How do we get the word out about neuropathy?

Yes, Johnny Cash had autonomic neuropathy; other famous neuropathy sufferers include Mary Tyler Moore and Bobby Short. Andy Griffith had a bout of Guillain Barre--acute neuropathy--that kept him sidelined almost a year. And Sister Dolores Hart--the Dolores Hart that starred opposite Elvis in several movies before taking her convent vows--has long-standing idiopathic neuropathy, and she has become a spokeswoman for research into the condition.

One of the saddest losses of the Braintalk archives were the threads many of us contributed to on how to get neuropathy a higher profile among neurological conditions. Our "famous" sufferers simply do not have the impact that Michael J. Fox is having for Parkinson's, Montel Williams/Jonathan Katz/Teri Garr are having for MS, or Christopher Reeve for spinal cord injuries--although those who suffer neuropathy are greater in number than those who suffer from those other conditions combined. Is it because many neuropathy sufferers don't have dramatic motor loss, and look "okay" (although those who suffer from motor neuropathy can be as debilitated as anyone who suffers progressive MS, Parkinson's, Myasthenia Gravis, etc.)--or is it because neuropathy is considered a secondary condition? For example, Mary Tyler Moore does an enormous amount of public work to help diabetic charities--she has Type I--but rarely talks about neuropathy . . .

What do you all think? Wish I were famous--I'm personable, articulate, and loud. :D But seriously, how do we raise the profile?

Good Question
 

Glenn, as you know - I have gastroparesis due to autonomic neuropathy - and belong to a gastroparesis group - they were very proactive when Johnny Cash passed away to try to make sure by contacting press, govt. officials, etc. that people knew he had this condition - which is largely unheard of except by those of us that have it.... and got quite a bit of press out of the effort about the condition......

Also, I know the amyloid group - (I had a positive biopsy 3 years ago and they put me on email list - I've stayed on it cause never was ruled out completely and now am again being tested because of cardiac complications) - but they do the same - (sorry if this is morbid) - they make sure that each person we loose with amyloid that it is now listed in the published obit - and get as much press out as they can...

General PN is much tougher I think - there are so many different causes and is a secondary condition - and perhaps thats why we have so much trouble making our cause known.... I know the PN Assoc. has Delores Heart as spokesperson - but shes only one person - and not that well known really... (people tend to relate to what/who they know-have heard about) - not much help with an answer here - but we do need to raise awareness - its a huge job - do we find high profile people with PN? (and how?) - do we inundate our government officials with a deluge of messages from us everydayers???????? I think we do need to do much more - any one ideas????? (this is a big one to wrap arms around)

Also, I know with both the groups I mentioned - they have managed to find doctors to speak on their behalf to the govenment... I believe we have a few out there working for us - but maybe we could appeal to our docs who are competenent - and somehow garner more awareness in that arena?

And Glenntaj - you would be a perfect spokesperson with your extensive knowledge of this disease - :)

Food for thought for next year eh???????

I agree with you, Karen.

Glenn's point, I believe, is that we need high profile celebrities to speak up to promote funding, research, and treatment, and to raise the training and awareness of physicians. Things are much better now than when my PN started but there is plenty of room for improvement.

Make no mistake about it, politics is the key to publicly funded research. There isn't enough ensured profit to motivate the drug companies to invest in PN and nerve research. Congressional "earmarks", meaning pork, has cost us dearly in pain, suffering, and a feeling of hopelessness. The billions wasted the past few years should have been better spent on medical treatment, training, and research. The key to political will is public awareness and desire, and one key to that is having spokespeople like Michael J. Fox, Chris Reeves, and Jerry Lewis (for muscular dystrophy).

Given the six degrees or less of separation we all have from any celebrity, with a few phone calls could probably recruit a celebrity who is willing to commit and work on PN as their pet project. We had a senator, former Sen. Jesse Helms (R-N.C.) who "maintained his active pace throughout the onset of peripheral neuropathy, an affliction of the nervous system that left him without feeling in the soles of his feet." ( http://www.hillnews.com/thehill/expo...ng/101905.html ). Unfortunately, he did nothing for us. If there are any other congress people or senators with PN, any of the more articulate among us could contact them and lobby for them to take up funding PN research, treatment, and physician training as their crusade.

Thank you, Glenn, for starting this important thread.

hope this link came through ok
 

Hey, Aussie--
 

--that's some list. Didn't notice any neuropathy on it, though.

Awful lot of metastatic prostate cancer there. Reminds me to get my PSA checked on a regular basis.

David, I was not aware about Jesse Helms; thanks for pointing that out. (If I had known while he was still in office, you can bet I would've been e-mailing him, although the difference between his politics and my politics is on the order of alpha and omega . . .).

It got me thinking--there are a lot of conditions under the umbrella of neuropathy, including traumatic ones, such as radiculopathies (e.g., "pinched nerves") that athletes experience--I'm wondering if there are any retired NFL'ers out there with chronic radiculopathy. (This is particularly interesting to me lately, as my whole torn muscle in the shoulder thing continues to drag on, and I am still experiencing that right thumb/forefinger/forearm numbness/tingling, suggestive of a C6/C7 nerve root compression, and there was that note, on my last cervical MRI, of neural foramen narrowing there--right now the symptoms are annoying, not debilitating, but I'm thinking something more aggressive than PT, such as traction, may now be called for . . .)

I've also been wondering if the celiac/gluten sensitivity angle is the one to go with. Celiac has been gaining increasing publicity in the last decade, thanks in no small part to boards such as these and the work of the people on them--Cara and Al and Anne and Mrs. D and many others--and the neurological gluten research of Drs. Hadjivassiliou/Fine/Latov/Chin etc. Again, though, as Kmeb brings up, the neuropathy in these cases is still often thought of as secondary to something else. How do we get people to see neuropathy as a debilitating syndrome in its own right?

Hey Glenn
 

Just kmeb again - thats the key - seeing this as a debilitating illness in its own right.... I've lived in my apartment complex for 5 years (thats a REALLY long time for me - but its got wheelchair access and thats hard to find around here) - anyway - I have neighbors who have seen me for years "wheeling" around (I walk around inside my apartment as much as I can holding on to stuff - but too dangerous to do unescorted when I go out) - anyway - a neighbor who is a doctor has seen me coming and going with a driver who works for an elder care agency I use to get back and forth to doc appts and I chat with her often in the halls or elevator... she finally asked me the other day where my "attendant" was - and when I told her I lived alone - she told me she was really surprised because MS could be so tough to live with... she assumed thats what I had - and others in the building have too... when I told her I had PN she was shocked - told me she had no idea that it could be so disabling...... if docs dont even realize this - we've got lots of work to do! I used to get rather offended if someone asked me what was wrong - but now I'm more then happy to tell them - even if it just raises awareness in my tiny corner of the world...

I had never heard of Neuropathy until i was affected by it myself, and i would say there would be a lot of you that had not heard of this disease either, until it actually affected you or someone else that’s very close to you.

It doesn't help much either when even the majority of general practitioners in not only my country but what i have read previously at BT ,that most Gp's can't even pickup on the obvious symptoms of PN, which i believe is in their medical training to become a doctor.: confused:

One way to attract public awareness of this disease is through the media, I mean Television, but how to achieve this is the million dollar question.
We do need Celebrities like Opera, etc & current movie stars, singers, that have a huge following world wide, those are the people that can get the word out about PN.

We also need the medical world behind us too, neuro's, pain specialists and any other medical profession that comes across PN affected patients on a daily basis and see's first hand how people have to suffer so much because of this awful disease, it would help if they started creating a noise too about the insufficient funds for research of PN.

Of course our world revolves around the almighty dollar and getting through to our politicians to let go of some of that money isn't going to be easy, but it can only happen if the general public in whatever country we live in, puts on enough pressure on our poly’s to make them dig deep in their pockets for research.

I really hope one day that there won't be anyone described as “idiopathic " anymore, wouldn't that be just great.

Brian :)

Folks are right...
 

in that PN is often secondary to other medical conditions. AND most research and treatment advancements for OUR condition is accomplished secondary in the work being done for those other primary conditions.

On the political front [and, I believe recruiting celebs as vocal advocates IS political] and as one who lives in DC, I've seen how the 'process' works. WE have to make as many local and regional folks aware...attending city or council meetings in which accessability issues are on the agenda is a first step. Your county rep could be running for the US Senate or more in a few years. Contact you Senate and House reps on the state and national levels...meet with them, make them [and more important-the staffs] aware of this 'condition' and all it can and does impact. I've not seen any 'action' packets produced by the primary neuropathy assn, but, there is a 'neuropathy action' organization, which is recent that may provide some clues. NORD also presents a strong voice for those of us who are, in a way not part of one of a vocal advocacy group.

Does anyone here live in NC? Helms now, is a sort of free agent, still having lots of contacts and approaching him as a spokesperson could be a viable option? Know of a city mayor, or state rep with PN? Ask them to speak, and speak up! Speaking up gets press, either paper or media. Press can educate.

As PN affects those with diabetes, cancers, strokes, alchohol, etc. Those affected have groups that are vocal and have some clout. We really should start by [if we can] attending their meetings and offering to speak on the subject at their meetings. To let them know there are treatments, true ways of diagnosing, and that the world doesn't END if you have it! Let's not forget those folks with MMN and other neuro-m conditions...they seem to be a bit more vocal. We are the same in our pains, treatments, etc, just affected a bit differently.

The more we advocate on our own behalf, the more people will begin to understand what IT MEANS. With any understanding can come inclusion in many decisions...be it insurance, accessability, diagnosis and treatment issues that occur on ever so many issues. No one should have to undergo the 'abuse' many of us have had to endure when we acquire this condition. The way to start is thru active education efforts.

Of course, that's when we have the energy! - j

At least, it wouldn't be boring?

"......that PN is often secondary to other medical conditions. AND most research and treatment advancements for OUR condition is accomplished secondary in the work being done for those other primary conditions."

I have PN. No diabetes. No CA. - cause is really unknown.
I used to self medicate with Vodka, but that was after onset. It probably exacerbated the PN, but my PN was there -way before, only my PCP didn't recognize it- he never did.
It took a stint in the hospital to Dx it (for an unrelated problem).
Then it was a change of PCP's and health plans, and find a good neuro to treat me.
What am I secondary to?
Maybe the majority of PN'ers have it as secondary, but I'll bet there are a lot of us who haven't any other condition to piggyback it to.

But we all 'look' OK.
PN is what I call a 'no see 'ums' disease.
Hidden from the casual eye unless it becomes debilitating enough to cause use of a wheelchair (like kmeb), and then they think we have MS.
Until we can get Docs to recognize it (my PCP was clueless) , no one else will. There doesn't seem to be a Mary Tyler Moore out there to speak out for us. Maybe some day, someone of high profile will, but it hasn't happened yet.
But I do believe it starts with the PCP's, and continuing education and awareness on thier parts. Too many of us have horror stories about searching for docs (neuros included - many of them are 'clueless' as well) and being told to seek psych help for our pains.
My PCP told me to soak my feet in epsom salts (for 3 years).
I finally told him to go "soak his head" !

Advocacy....
 

Just came across this site - worth a serious gander - not only the basic info about PN, Ins. issues etc - but most improtantly for this thread - a section on advocacy - how important it is for all of us to get involved in raising awareness of our needs - and even specific information with "how tos" - how to work with and speak to media, govt officials, etc........ check it out!

http://www.neuropathyactionfoundation.org/index.htm

:)

Believe me, frustration is dominant?
 

I didn't have diabetes, heart, cancer issues prior to my onset either. I, too, went thru the 'UM DER WHAT?' round of round-robins. Only my own instinct that what I was being TOLD was not connecting to the 'goings-on'! I got lucky, in the speed of my diagnosis, in that I kept pressing, other, unrelated docs...also considering the doc-speak of 'does NOT compute!' route. Then getting lucky-with getting appts. with top Docs! That it took only 14-17 months from initial diagnosis [incorrect, but close] to real diagnosis and treatment...well. just says to all: DON'T TAKE NO FOR AN ANSWER!
WE KNOW when something is plain old 'not right' with your own body and how it works! That some docs discount us is unconscionable. These turkeys are NEVER going to be censured to the point where a serious 're-education' or any 'sensitivity' training will occur.....unless we are very LOUD and constructively GRUMPY! Heck, it's a start.

How do we do that? Two ways...from the TOP and the BOTTOM of the various food-chains...to the point they meet. Yeah, it's often called 'advocacy', either the one-on-ones or the broad brush strokes...I plain old call it EDUCATION! We each know at least 5-10 people who really know of OUR condition...they, can let another 5-10 know... like a chain letter? BUT, if we don't speak, speak up, speak loudly. Who is gonna know?

I have had 40-60 doc appts in the past year. I have had to either educate or summarize my PN issues to each of at least 20 docs in the past year. It's scary that I've had to do this. My thinking is that PN aspects are rampant nationally [whatever the 'causes'] but generally go unrecognized/undiagnosed/under-rated. That I have to give a 37 second summary to an ER docin a manner that that doc gets THE POINT is down right frightening...especially as PN can affect autonomic systems soo quickly! Such ignorance should NOT be allowed! Yet, it is. Who IS our adovcate? ARE they really working well on our behalf? OR Should we have to create another organization competing for the non-profit bucks in ever short supply? I don't know- but, gotta tell you, MS folks 'look OK' too...until... Go figger?

Hugs and good minutes, extending to more for all! - j

I have been reading the Neuropathy Association’s page on their 2nd Annual Intimate Evening Dinner which raised more than $150,000 for the cause. It can be seen on
http://www.neuropathy.org/site/PageS...ndOct1othCeleb .
I feel we should congratulate the Association in raising this amount.

Two things stand out for me. One is the result of a survey they conducted which found that fewer than 7% of all adults asked knew anything about our disorder! The other is about James Gardner who is Vice President of Investor Relations for Pfizer and has a wife who suffers from neuropathy. What a shame he can’t push Pfizer into producing a drug specifically for the relief of neuropathic pain instead of them palming us all off with drugs designed to treat other diseases and then selling them illegally off label in the hope they will help us. Perhaps I just expect too much of our friendly caring drug companies – that must be it.:rolleyes:

One other point mentioned refers to the treatment Mother Dolores Hart received when the disease had crippled her. It implies she is now no longer crippled. Does anyone here know what form of treatment Dolores had? I can find nothing on the Association's site. It is certainly wonderful to see her looking so well.

The reference to the Association’s Hollywood growing connection is sounding hopeful too. As has been said here, the more celebs and politicians etc. we can find who suffer from any form of neuropathy and are willing to talk about it the better are the chances of our disease being taken seriously by those who should be doing something for us. We must also raise awareness above 7% somehow and that was amongst educated adults.

Tony

Delores Hart
 

Tony,

$150,000 is a good chunk - if it gets used wisely! As for Delores Hart - I belive she is being treated on-going with IVIG - saw special on TV about her - she is still suffering - but the IVIG is helping her!

Kmeb

We probably won’t know just how the money will be used! But I hope so.

I wondered if Dolores was having IVIG but nowhere was it mentioned. I know she developed PN from a root canal job in 1999 and I believe she has been doing some political lobbying recently. She sure is a great ambassador for the cause. It is ironic that she would carry so much more weight had she still been a film star.

I hope you had a peaceful Christmas:)

Tony

I believe that's true about Mother Hart--
 

--she has been aided by IVIg infusions.

Her neuropathy had a sudden onset, and though she is still officially "idiopathic", the effectiveness of the infusions argue for some sort of molecular mimicry autoimmune reaction. This is thought to be behind a goodly number of "idiopathic" syndromes (mine included).

The other major possibility for those labelled "idiopathic" is a toxic reaction.

I am glad Mother Hart is talking about her situation, but she doesn't seem to get a lot of publicity outside our own little community. Now, if she were still a working actress . . .

I have often wondered why Andy Griffith did not go public with his bout of Guillain Barre (perhaps because he recovered farily quickly and almost fully)?
He certainly has a high enough profile to give this more juice.

A number of us try to advocate when we can. I'm trying to wrangle myself an
invitation to testify (through a recently elected legislator I know) when the NY State legislature takes up the question of universal state health insurance.
And, for those who haven't seen it, there is this:

http://jscms.jrn.columbia.edu/cns/20...los-neuropathy

The author of this article has a mom who suffers from neuropathy, and who was treated at Cornell-Weill. I just wish this article had been picked up by more outlets, though. (Apparently, some of the other articles in this edition, like the one about bald women, got very wide dissemination.)

Interesting find, Kmeb, that Neuropathy Action Foundation. I looked over their site, and they seem to be well-meaning, but they seem to advocate mostly in California and Arizona. (Maybe that's why I had not heard of them before.)

We do, of course, have the national Neuropathy Association, but I have to be blunt in saying in my interactions with it, it didn't seem to be well-organized or loudly advocative (and it seems to be chronically underfunded).
The difficulty in navigating the message boards is what made many of us post here and at Braintalk far more than there (though I will admit their website explanations of neuropathy types are much improved from those present a few years ago).

I wonder who else is out there in the public spotlight with odd neural symptoms that physicians are having trouble explaining. (I keep thinking about athletes, and I keep trying to research--I know basketball player Todd McCullough had to retire due to compressive neuropathy of the feet, for instance--but would any such people think about putting the effort into advocacy?)

K-meb, interesting site?
 

Tony...don't mean to seem picky...but the releases 'said' raised $150,.k from the EVENT...did not say what the 'net' was after expenses... The celebrities 'cited' aside from Sr. Hart, did not imply or indicate actually HAVING PN...only a 'familiarity' to it... I for one, would like to know HOW 'familiar'?

DUH? WHY would I want to join the PN Assn, when the info they post on the condition at their site [aside from newsletters -available ONLY to those who pay to join] is at least 5 years out of date? I need only to refer anyone to the info on IVIG that they post...Not to mention the issues mentioned here, at the PN Assn site, and many many other places regarding their lack of public clarity in terms of their finances, expenses, and, not even who is on their board of directors!....Obviously one board member has an either actual or potential conflict of interest based on what you have shown us....

One thing I KNOWis boards, I used to fund federal programs to encourage board development for non-profits...walking that board LINE can be a sticky issue. Acknowleging board members is a sticky issue, politcially, policy-wise and pragmatically. THIS is an issue discussed about other non-profits on other boards.

IN this case, tho, I ask you, what was Patricia Neal in rehab for? If I recall correctly, it was a possible toxin-related source of neuropathy. No pain is to be sniffed at, or scoffed. I am just not finding any counter-point PSA's to the ads on restless leg syndrome...initiated by the organization claiming to be a leader for those with PN. I don't see any leadership, I see followers all.

Further, how was their survey conducted? No background or stats. Humm. No details, probably one should question the quality of the survey.

I agree with Kmeb, that other site is interesting as a potential alternative. One to be thoroughly read. - j

Telling what they have
 

Unfortunately most of the actors that have come out about their diseases have had to because it shows, Michael J Fox (Parksions), Christopher Reeves (spinal Cord injury), they couldnt hide it .Other diseases because they wanted to take a stand on the them like Montel Williams, (he was a big enough star that he knew it wouldnt hurt his carrer) as was Marry Tylor More.
Look at how long it took the Stars to come out to say they were HIV Pos or has Aids.
Being Ill hurts there carerrs. People dont want to hire them if they are sick and dont feel good some days or will get worse as sometimes in PN. And most people dont know what PN is so they wouldnt have that empathy that alot of other diseases cause their fans to feel for them. It would have to be a brave person to say they have PN and then see how much work they got if it got worse, went from walking to walking with a cane to being in a wheelchair, so they may not want to show what they have because the people that hire them might go with someone "healthy".
Im sure there are actors out there that just dont want to loose their livelyhood and speek out on this. I cant judge them but maybe some brave person will do it.