Thank you for this!

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

--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.

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.?

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. 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!

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).

Well, Thank You very much Cy! 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..............the other 50% goes straight THRU the huge cavity in my skull that once was my brain....

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.

(Cleaning house this morning and listening to HOLIDAY tunes! I must be crazy! 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....