Met Glenn at last night's PN Support Group meeting
 

What a great meeting we had. Lots of information. We had a speaker form the Neuropathy Association who explained about the upcoming Neuropathy Association Neuropathy Summit that will be held in Washington DC, December 3 to December 5th 2010.

Here is a bit of info regarding the Summit. And of course you will be able to find much more information at the Neuropathy Association's website;

http://www.neuropathy.org/site/PageServer



The Neuropathy Summit is being held at:
Washington Hilton
1919 Connecticut Avenue NW
Washington DC 20009
Tel - 1-202-483-3000

Under the heading Physicians/Scientific Conference Program
Friday, December 3rd, 2010, the topic is:
"Mechanisms of and Disease-Modifying Treatments for Peripheral Neuropathy

On Saturday, December 4th the topic is:
Mechanisms of and Treatments for Neuropathic Pain
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Under the heading Patients Conference Program
Saturday, December 4rd, 2010-LIVING WITH NEUROPATHY
Sunday, December 5th, 2010 - MOVING THE NEUROPATHY FIGHT FORWARD

---------------------------------------------------------------------
Now, here's what happened at last night's meeting.

I was sitting there and a man walks in and he's talking to someone and I hear him say "Melody knows me". I brought my head up to where he was standing, I did not recognize him, and he mentions something about Sproutman, or sprouts (something about sprouting). Who did I think he was? The Sproutman himself, Steve Meyerwicz.

I got all excited, ran over to him and said "you're the Sproutman, oh my god".

He's smiling and said "Well, I'm not actually the sproutman but you know me'.

There was a lot of background noise in the room so I wasn't making out what he was saying to me. All of a sudden I hear the words 'GLENNTAJ" and a bell goes off and I said: "Oh my God, you're Glenn!!!"

I threw my arms around him and we were smiling. What a wonderful opportunity to finally meet him. I actually had someone come to the meeting who I have been corresponding with on Neurotalks for quite some time.

I turned to Alan and the others and said "Do you know who this is, this is Glenntag from Neurotalks"

I then took some short videos which I will be uploading to youtube soon.

I shall share them on this thread.

I enjoyed this meeting immensely. And I brough muffins and Glenn ate my muffins and I got a video of that. lol

Lots of questions were asked and answered at this meeting. We even got a chance to tell the rep from the Neuropathy Organization how it is very unjust not to be able to get custom shoes just because a person does NOT have diabetic neuropathy, but has neuropathy from other reasons. Many other people fired questions at her and she was very gracious and answered as best she could.

She said this would be discussed (among MANY topics) at the Summit.

So I'll be back later on with some links to the PN meeting.

Melody

Glenn and I have talked on the phone a few times. I found him very engaging and very intelligent! ;) I enjoyed the calls immensely.

I am very glad he will be at that conference. I am looking forward to his reports... got that, Glenn? ;)

We're all counting on you!

Hi Mrs. D.

Here's the link to the clip I made of Glenn at last night's meeting.

And the other members who attended the meeting, well many of thought that Glenn was a medical professional. How cool!!!

How lovely that I get to share this with all of you. I have literally changed my life by coming on this forum so it's a pleasure to be able to do the Flip recorder thing and share the PN meetings with all of you.

http://www.youtube.com/watch?v=s-WFkd7H4TQ

Melody

Hi, Melody and Glenntaj -

So nice to put faces to names - thanks, Melody, for this video.

I'm jealous. If I'd never moved away from my New Jersey home (just across the river from Manhattan) would have been able to join your PN group. Rats!

Sheltiemom

Ah, I see you live in Ohio.

Not to worry. I have my Flip. Anything important that is ever said at these meetings, I'll capture and share it on these forums.

Honestly, I have never used a video camera before in my life. Someone bought this for me, and I haven't stopped yet. It's the coolest little thing and it should be named "Video recorder for dummies". That's how EASY this thing is.

Years ago, when everyone had these big old camcorders that cost $799.00, well we never got one of those. I always said "maybe some day someone will make a little gadget".

HELLOOOOOOOO!!!!!

lol

Melody

wow glenn i met you before, you cut me off on Bell Blvd.!

ha!

Oh that is too cute.:hug:

I want whatever you guys take for all that energy!:D

(Excuse me, I have to go clean the baby barf off my arm....those muffins sound good......)

Well, I can only speak for ME, but I take 5000 methyl b-12 just about every day. Best thing I ever did.

Believe it.

We have talked about Methyl B-12 at these meetings.

Hope all is well

Melody

I must not be taking the right stuff, lol. I will be doing some online shopping for some of the supplements suggested on here. I noticed the Vit. D helped a lot, but, I am still exhausted all the time. Maybe it is running after a 9 month old all day, but phew....I am all tuckered out.

BTW, you both look very darn good on the video! (No support group around here.:()

Cyclelops:

Do you know your B-12 level, and your Vitamin D level?

mel

Wow!!
 

Thank you for this!

.......Leave it to GLENN to eat all the MUFFINS and not save some for the rest of us.... :rolleyes:

Well--
 

--given that I'm supposed to be gluten-free, it took a VERY fraught discussion with myself as to whether I should try one of Mel's famous muffins.

I finally decided that I would live to tell the tale. Only had one, though. :D

Yes, I do plan on opening my big mouth at the Neuropathy Summit. I'm to be part of the panel on people living with neuropathy that includes Angela Macropoulos, a journalist (she's interviewed me several times for neuroapthy articles, and recommended me for this) who is the caregiver for her elederly mom who has CIDP, Col. Eugene Richardson, who is a support group leader and activist in Florida, I believe (he posts a lot on the Association website), and others still to be announced. My take is going to be primarily self-advocacy and self-education, so we can deal with a lot of the myths/stereotypes out there (especially among medical professionals), and to hopefully make others aware of sites such as this and others that provide that ammunition--I only hope I'm not preaching only to the converted. People who show up at these things tend to have the activisim and ability to do so--a number of the people at this support meeting were familiar with Neurotalk, and Braintalk before that, and with people such as Mrs. D and Rose and Cara (jccglutenfree), who have been writing a long time--but I want to spread that gospel.

It was interesting that Tina from the Neuropathy Association did come in from some criticism at the meeting; a number of people echoed what we've written/talked about here (the Association is inherently conservative; it doesn't work well with the other neuropathy organizations out there, such as the Neuropathy Action Foundation or the Foundation for Peripheral Neuropathy; it's not as pushy as other disease organizations in getting publicity; it doesn't do enough to push celebrities with the condition to come forward). The Association is underfunded and understaffed, but we have questioned its priorities. Perhaps the summit will allow enough cross-pollination and frank discussion to move forward.

Echoes--that was you on Bell Blvd.? :p

My D level is low. 30. I am on Vit D3. My B12 hasn't been done in a while. It was in the 700s last. I do take sublingual vit B12.....plus, I eat eggs....my chickens are prolific and I am getting a dozen a day. I can't give the eggs away. (No, I don't eat more than 6 per week).

So I probably get B12....but to be safe, I take it anyway. I take lipoic acid, potassium, magnesium, flaxseed oil too. I am going to get d-ribose and the acetyl carnitine as well. My diet isn't up to snuff since I have such bad nausea a lot of the time. (Like living in my 8th week of pregnancy all the time---pretty much how I would describe how I feel.)

Coping with my g-son is my biggest challenge. :o He is non-stop motion....and a very bright child. He walks at 9 months, opens cabinets, doors, climbs on things! Sheesh!

Rrae is emoticon queen!:highfive:

He walked at 9 months, opens cabinet doors and climbs on things. Holy cow, I can't wait to hear what he will do when he's 2. Probably give lectures!!!!

lol

Melody

And my husband Alan asked Tina some very good questions. He explained how the Neuropathy Association did not advocate for him when he requested their support in trying to get custom molded shoes and orthotics and was denied by his insurance because he was not a diabetic, and was denied once more when we had a phone appeal hearing with the administrative law judge. I had contacted the Neuropathy Association to ask for their help in sitting in on the phone appeal as our advocate.

They refused, citing "We don't do advocacy"

Well, Alan brought this to her attention (as well as other things).

I will say she was most understanding and tried to address him and she assured all of us that these things will be discussed at the upcoming Summit.

Time will Tell

Melody

I have to wonder about an Association, that does not advocate for its members. I would wonder if they are receiving funds from Big Pharma? (who makes drugs that cause neuropathy)?
From doctors? Or do they not have any money at all? and that is the problem?

Can you find out Glenn, where their funds come from?

I'd also bring up if I were going to that meeting... the enormous increase in PN type postings here among YOUNG persons! We never had this type of post before in the "old days". PN was mostly an older person's problem. Now in the past 3 yrs or so we are seeing so many younger patients! I think this is very significant. (it is also happening at the MG forum).

Ahh, shucks
 

Well, Thank You very much Cy! :Blush2: I take much pride in this prestigious honor! And i am certain it is doing wonders as a contribution to society as a whole .....

No, but seriously, it is thrilling to see people aggressively activating on our behalf of this 'silent' painful condition.
A big THANK YOU to Melody, MrsD, Glenn, and everyone else.

I must admit, Glenn's intellect is outstanding.......so much so that 50% of what he says goes straight over my head........:o......the other 50% goes straight THRU the huge cavity in my skull that once was my brain....http://dl9.glitter-graphics.net/pub/...l5e9y2e4mo.gif

Speaking of young people developing PN, I will never forget (about 6 or so years ago), when Alan went to see a Physiatrist at one of the NY hospitals, and when we were sitting in her office, she asked Alan "Were you at ground zero, did you go there to help, were you involved in the clean up in any way"? and Alan said "no, why?" and she said:

"YOU WOULDN'T BELIEVE THE CASES OF NEUROPATHY THAT I SEE FROM PEOPLE WHO WERE AT GROUND ZERO"

And the experts STILL don't know why some people get PN???

Or won't admit!!!!
Oh My!!

Melody

Well, I CAN comprehend emoticons....lol.:holysheep:

(Cleaning house this morning and listening to HOLIDAY tunes! I must be crazy!:boy(music): In a holiday mood....having a baby in the house just does that. And grandchild number 4 is on the way....sesame seed size right now....This one is a surprise and a little miracle, but then again, aren't they all!) Oh tidings of great joy...hum, hum, hum....

i tried to post this before but apparantly it didnt work, so if it shows up 2x i apologize in advance.


i cant think of any better PN patient advocate to go to the PN summit than Glenn.
too bad Mrs D cant make the trip there also.

If i were running the Neuropathy Association i would hire both of them as consultants ASAP!

Godspeed Glenn!

I agree.

We need more advocates.
Melody

Oh, I think Glenn is an excellent speaker, quick thinker, etc.

There is no better choice from here IMO. We are really lucky he is going there!

Between us, I'd get angry/impatient, and show it...it is one of my weaknesses. I have voiced displeasure at many meetings, sometimes when no one else had the "nerve" to do it. I expect there to be some "bull" tossed around there.

And I don't think in this case, I could be nearly as articulate as Glenn will be.

My major peeve is that so many "experts" are mum about healing and potential for healing. All they want to do is the standard party line.

Between the tainted things in the food industry, the drug industry, and medical mismanagement or laziness, the PN area is a very rocky place today.

Glenn you'd better bring a pair of hip waders and a shovel!

Yes--
 

--I have my boots ready.

I tend to be highly intolerant of bu****it (think four asterisks will make it past the censors? :o), and I hope I don't encounter too much of it at the summit. I don't think I will--the medical professionals that are supposed to be there are leading names in neuropathy and take it very seriously (i.e., Berger, Treihaft, Chin, et. al.), and certainly Angela and Eugene are not known for holding back--but I worry about lack of press coverage, or condescending press coverage, and not only from the mainstream media, but from medical correspondents or journals (who should know better) . . .thankfully we have places like this, and I will report.

In answer to something else from a few posts back--yes, the Neuropathy Association has been very catty about where its rather meager funds come from in the past, and I do believe a certain proportion (not sure how much) has come from Big Pharma . . .I don't think that hurst when it comes to trying to get Medicaid/Medicare reimbursement for neuropathy meds, equipment, and the like, but it might provide a chilling effect on the alternative sides of things we often discuss here. I will be doing a lot of sniffing around and a lot of informal conferencing.

I do worry about just who will come, though, that isn't part of the agenda. As was pointed out at the meeting, the price is not cheap, especially for those on disability or of Social Security age, and it is being held during Chanukah. It would be a shame if attendance was very low.

Well, I am glad you are there! Hooray!:)

Don't hold back on how hard it is coping with this miserable condition.:Soapbox: Make sure you get into the specifics....:nopity: Make sure you :deadhorsebeat:

Let them know how hard it is to:Zzzz: and then there is the :vomit: and :hissyfit: of dealing with the pain.

It is time to stop:Hum: and telling us :Sorry: It's time....We need more :sad-dollar:

No more :sunchair: We need more :Clever: and :doctor: interested in Neuropathy.

We need a cure and treatment now!!! :You-Rock:

Glenn, you are going to hear...."evidence based studies" etc.

Never mind that Big Pharma's studies are sometimes fraudulent or worse. They always point to alternative things as anecdotal and therefore not worthy of consideration.

Even our cousin upNorth who is an orthopedic surgeon, spouts this "evidence based studies".

So I hope at least you are armed with AAFP website and Dr. Snow (both are on the B12 thread) and the new research on Vit D. There are "evidence based studies" on acetyl carnitine too.
The lipoic acid studies are mostly European but do exist.

Well, we should hope for the best, I guess. I don't want to taint your experience before it even happens! ;)

It could be a movie 'Big Pharma and the New Merck Manual'. We would have inside trading, made up diseases with matching drugs, and changing criteria of studies in midstream.

Frankly, there seems to be a paucity of studies going on for the causes of neuropathy. Other than inventing a new reason to give old drugs....not much goin' on.:(

Glenn,
Give 'em HE11 !!
I live only 45-50 miles from DC, but can't go - due to multiple reasons,
$$ not being the least of them.
I'll be interested to see what you come out of it with.

Suggestion to cut corners
 

They could print their quarterly newsletter on less expensive paper in order to increase the treasury a little--a new fund raising letter arrived Friday in my mail box signed by the new president. Joan

At least over in the United States people seem to be trying to find a cure and make life easier for people with PN, in Australia no one seems to care and Pn is not even recognized by the Government. Doctors here seem to know nothing and you are sent home after having no tests and no answers and just a sorry, take the pain meds and don't come back you are waisting my time.