Video of the PN Support Group in NYC
 

Okay, I finally edited the 90 second video of the PN Support Group in NYC.

We meet on the 3rd Thursday of the month, every month. I just wanted all of you to see what the room looked like and the nice friendly people (who ALL by the way suffer from various forms of PN).

So if any of you live in NYC or nearby, and think you'd like to get out once a month and have coffee and cake, and meet other people with the same affliction (many different causes, by the way), well, just send me a private message and I'll put your email on our mailing list.

Here's the video.

http://www.youtube.com/watch?v=gK_hVs6ldaE

Melody

Very nice! You certainly have a gift with the video and your new camera rocks!

Thanks for posting it!

I have to tell you something funny that Mike said at the meeting. He was the tall man in the beginning of the video (on the left).

We were all sitting down and speaking about our various experience with PN, and he said:

"You know, something odd is happening when I see another disabled person, when I am walking in the street and I see a man on crutches, my legs start to hurt, when I see a man who has an injury to his arm, well, my arm starts to hurt.

I blurted out "Well, don't go near anyone in labor".

We laughed our heads off.

Mel

Well done, Melody! That was a very nice piece of video work.

Would you mind telling us how the group's first meeting was advertised? Am thinking of starting a support group in my Ohio home city for Sjogren's Syndrome people who also have neuropathy as a complication - catching two birds at once, so to speak.

Sheltiemom

Hi there.
I really have no idea. The first meeting Alan and I went to was 10 years ago and it was at the Lighthouse in NYC. I was a HUGE meeting with hundreds of people.

For the past few years, it has been at the CBS building in NYC.

I gather if you go to the Neuropathy Association's website, and search Support Groups, maybe they will have a link "Start your Own"

Or maybe the Sjogren Organization has a website that you could go and find out about starting your own support group. It's a nice idea that you have.

Best of Luck

Mel

Melody

Sjogren's Support Groups
 

:Thanx:

Melody and Kitt, for your support group start-up suggestions. Will get on them ASAP.

Sheltiemom

I LOVE these little smiley faces things.

lol
Melody

If I remember correctly--
 

--the Neuropathy Association website does have a section (somewhere--not the easiest website to navigate) that not only has a listing of support groups by state but a contact and some info if one is interested in starting a support group; I imagine the info is applicable for other conditons, but I bet it's a good deal of work, at least initially (going by my own expereince with such groups).

And, one other thing--I've been talking with the Association about possibly going to the Neuropathy Summit in December in Washington DC as a panelist, to talk about coping with the condition and patient advocacy, both group and self--Anglea Macropoulos, who is blogging about being a caregiver for her CIDP mother, and a journalist who has written a number of articles about the condition (a few of which I've been interviewed for) recommended me to the Association, citing a number of things I've written over the years (a lot of them here)--so we'll see. It may mean I have to come to a meeting, Mel, if I can rearrange my tutoring schedule--when's the next one? :p

Hi. Thank you for this. I was at one time trying to start an RSD group but then I thought a general chronic pain group would be better. I know others like myself who have more then one condition plus regardless of dx there is a common bond between people who face health problems i think.
Mel you are very good with a camera. I think you found a hobby

I KNOW I found a hobby.

Now I have two hobbies. Making Flip videos, and my sprouting.

I wonder what I'll do when I'm 65,

Maybe take up hang gliding??

lol

One never knows.

Mel

Hi. Our next meeting is November 18th.

I put you on the mailing list. I send out notifications one week before. I know now to send them out on the Friday BEFORE the Thursday meeting.

One time I sent out notification, Correctly worded, but I must have sent them out too soon, because some people showed up at the CBS building and the guy at the front desk said to them. "Wrong date, it's NEXT Thursday", and one of them "but we came for Melody's muffins".

I never laughed so hard.

So if you can come on November 18th, that will be cool.

And you'll get to have a nice cup of coffee to boot (with amenities)

Mel

The thought of me on caffeine--
 

--is too horrible to even contemplate. :D

Might have a piece of fruit, though. Saw that in the video. (Still trying to be gluten free. Sort of nixes the muffins. Sigh.)

THEY HAVE DE-CAF!!!!

lol
That's what Alan drinks.

Mel

You have such a good spirit. Your posts cheer me up and make me laugh.

Oh, you want to laugh?? I'll tell you a funny story (happened yesteday).

It was early, Alan was still asleep. I wanted to make a video of my rinsing and draining of my sprouting trays. I went into my kitchen, filled a bowl with water and had all my trays. Now when you sprout, the whole thing is not to waste water. So I don't hold the trays under the faucet to give them a drink.

I just fill a bowl with water and it's in my sink. I then take each tray (filled with sprouts) and dunk, take out the tray, pour out much of the water back into the bowl, and simply place the trays on a tilt in my draining rack.

So there I was yesterday morning, making the video of how I do this. You'll laugh your head off when I tell you what Alan said when he woke up.

Just so you know what he heard while he was sleeping, here's the video.

http://www.youtube.com/watch?v=1-SMt_56zEw

I had no idea Alan could hear me doing the pouring of the water, talking while making the video, etc.

Now here's the funny part.

Some time later, Alan is waking up, I walk over to him and this is the conversation:

Alan: "How was the flood"?

Melody: "There was a flood?? THERE WAS A FLOOD??????"

Alan: "Yeah, there was a flood and the landlord was here"

Melody: "The landlord was here?? When????"

Alan: "What do you mean when? ,You were talking to him"

Melody: "I was talking to the landlord and there was a flood???" What on earth are you talking about, were you dreaming?"

Alan: "Don't tell me I was dreaming, I know water when I hear it, there was LOTS of water and you were talking to the landlord in the kitchen"

So I run into the kitchen, looking for the flood. There is no flood. I ask him "Where was the flood, in the kitchen, or the bathroom"

He said: "Sounded like the kitchen, did you clean up the water?"

I said "If you thought there was a flood, why didn't you hop off the couch and run into the kitchen"

He said "Well, you were talking to the landlord, and I was still sleeping". MEN!!!!!

So I'm going nuts trying to find the flood and I'm checking under the kitchen sink, and under the bathroom sink, and in the bathroom and I'm scratching my head TRYING TO FIND THE FLOOD, .......when it dawns on me that I made the video.

Now if you viewed the video, you heard me pouring water into the bowl after I dunked the trays right?

So I marched him into the kitchen, re-created what I did, took a bowl with water, took a tray filled with sprouts, and said "Watch me do this, is this what you heard?"

I dunk the tray, I lift it out, I pour it back into the bowl of water in the sink, and Alan yells:

"THAT'S IT, THAT'S WHAT I HEARD",

Alan said: "So, there was NO flood???"


I almost banged him over the head after I stopped laughing.

Melody