Hi All.

Last Thursday, Alan and I went into NYC to the CBS building. They hold the Peripheral Neuropathy Support Group meetings every 3rd Thursday of each month.

I brought along my camera. I only got 3 photos but at least you can see the size of the room and the immense table we all sit around.

I shall bring my camera next month for the next meeting. It's December 17. If you wish any info, just contact me.

I put the photos in my photo album.

Here's the link to it. The first three photos are the ones I took at the meeting.

http://neurotalk.psychcentral.com/album.php?albumid=30

Melody

--over to one of these support group meetings, Mel.

At least they don't have lots of cookies, right?

I used to walk into the Cornell-Weill Center for Peripheral Neuropathy, which is housed in quite a luxurious suite of offices, with lots of amentities (including a cable TV room, which is where a lot of the IVIg patients hung out during infusions), and constantly chide them about how there were always cookies and pastries people had brought in, which, considering the number of diabetics in the place, didn't seem to be a well-thought-out idea . . .

GLEN!!!! THEY DON'T HAVE COOKIES???? Are you kidding?

I should have taken a picture of the left side of the room. It's like ONE LONG BUFFET TABLE. Plates of cookies. (I think they are Pepperide Farm). Then to the right, there are silver carafes of steaming coffees, flavored, de-caf, etc. Hot boiling water for Tea. All kinds of international teas. And bowls of fruits.

And to the left of the table, there are bottles of teas, cans of soda, bottles of water, YOU NAME IT, THEY SERVE IT.

But I always make my muffins and I bring a tin of my muffins to this meeting each month. They last approximately one minute.

Last Thursday I made a batch of Peanut Butter, Banana Chocolate Chip.

Believe me, YOU SHOULD HAVE MADE THE MEETING.

Now sometimes I bring sugar free stuff, but I figure, one muffin isn't going to hurt anyone. I have to hit Alan over the head not to take more than one muffin.

I sometimes make blueberry muffins (with fresh blueberries). But the ones I made this past Thursday,

THAT WAS A HALLELUJAH MOMENT!!

I never have any left over.

You should come next December 17th. I can never make the promise that I or Alan will most definitely be there because sometimes things happen (like the Access a Ride doesn't show up, or Alan has a foot thing going on, but oddly enough I have only missed one or two meetings in a few years.

It's a good group with lots of diverse opinions on everything from IVIG to what kinds of creams work.

So come if you can. At least you'll get a muffin.

lol

Melody

kind of like having seagrams cater an AA meeting or OTB a gamblers anonymous meeting

Well to be perfectly honest, this is NOT a diabetic neuropathy support group meeting. People who come to this meeting have various reasons for their neuropathy. Only a few have diabetes.

The rest have CIDP, neuropathy from Chemotherapy, neuropathy due to compressed discs in their backs, alcohol related neuropathies, and many, many, have idiopathic. We don't get the same number of people coming each month because of weather, and some people can't walk that well, or have balance problems.

But when a lot of them show up, it's like a big get-together. It's usually on the 33rd floor but lately it's been held on the 34th floor.

That law firm (who donates the big room and gives us all the stuff on the table), well, it's very very kind of them to do this.

I've been to NAMI meetings and Gamanon meetings and all they had was a bag of chips and a big thing of coffee (with a spigot), and various cakes. But the meetings are held in small rooms in churches.

This?? Well, the first time I went to a meeting of this support group, Alan and I looked at each other and said "Whoa, this ain't no NAMI meeting".

BIG difference.

But honestly, it's not where the meeting takes place, it's what we get from going to the meetings, and what we pass on what we've learned. For example, because I was helped by Methyl B-12 (which I learned from this forum), well I gave this presentation about Methyl B-12.

You'd be surprised at how many people are now taking Methyl B-12.

Melody

wow, that looks more like a board meeting than a support group. I'd definitely come to any support group you were in - I love muffins.

cheers
raglet

Well, if you live in NYC, on December 17, COME ON DOWN!!!

lol

mel

i was joking.....i have tried to pass on some things to people who have similiar symptoms as i do who have been through the same exposure but i usually dont think they get it or want to get it or are hoping the doctor will tell them something different even though the doctors usually dont tell them anything. These are relatively young people. Older people usually have come to realize that what they have has no easy fix. I met a guy a few weeks ago who dates his PN back to the Korean War when his feet froze. The VA agrees with him.

give you permission to be published on the internet? It's a verys special concer for folks on disabitiy...
Normally signed releases are required... Sorry to be such a curmudgeon, but look at tht lady from Canada and what her 'face book' posts got her? - ju

What does being in a photo (at a PN Support group meeting), have anything to do with disability. And yes, everyone knew they were in the photo. The purpose of my taking the photo was to get people to see what the meeting was all about. What I didn't show in the photo were the walkers that some people used to get into the room. And most of the people get to the meeting via Access-a-ride (which is a disability transport service).

I asked the guy who ran the meeting "Would it be all right if I took some photos so I can put it on the Neurotalk website"? He said "good idea"

I think there's a big difference between this, and what that poor lady on Facebook had happen to her. And that lady was told by her doctor to "go on a vacation" for her depression.

I'd like to see a disability board take a look at my photo (and we were watching a 90 minute video on pain management for Peripheral Neuropathy), well, I'd like to see anyone put a negative spin on that.

I see your point but I did get permission.

Melody